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General Category => The Knowledge => Health & Fitness => Topic started by: Peter on 04 February, 2011, 04:49:25 pm

Title: Optical Symptoms - Migraines
Post by: Peter on 04 February, 2011, 04:49:25 pm
When I was in my thirties, I started to get cluster headaches (migrainous neuralgia).  These were similar to what other people tell me about "ordinary" migraine in that the pain was indescribable but there were no optical symptoms and far from wanting to lie down in a dark room, I had to keep moving, roaming the streets and trying not to kill too many people.  The pain would eventually be brought under control with Imigran but I would get a headache lasting three or four hours, every day for several weeks.  Mercifully, these have been absent for several years but I have just started getting optical symptoms!  These take the form of shimmering zig-zags across my vision but apart from affecting my clarity of seeing they are trouble-free and there is no pain.  I've just had the last "attack" and it went on for about half-an-hour.  They are not particularly frequent. I just wondered if any damage is happening or is it just a symptom of my inability to get things together, i.e. full set of symptoms but years apart!

Any ideas?

Hang on, I think pain may be on the way.........
Title: Re: Optical Symptoms - Migraines
Post by: eck on 04 February, 2011, 06:06:44 pm
Peter, Mrs eck suffered from cripplingly painful migraines for several years, usually at regular monthly intervals, and was prescribed Rizatriptran (Maxalt) wafers to manage the pain. They are very effective, much more so than Imigran, but thankfully her symptoms have virtually disappeared since she changed to a gluten-free diet. Co-incidence or not? It may be worth giving it a try.

OTOH, I've been getting the "shimmering zigzags" (that is a perfect description) occasionally for years, with never any pain or other symptoms. I only get it maybe once or twice a year, usually if I'm feeling a lot of stress or I've been rushing about a lot (admittedly a rare occurrence). These are always relieved by the classic "lie down in a darkened room for half an hour" treatment.

So, I wouldn't necessarily associate your newly developed optical symptoms with a recurrence of your old "ordinary" migraine. I do hope the pain didn't materialise.
Title: Re: Optical Symptoms - Migraines
Post by: Peter on 04 February, 2011, 07:35:20 pm
Dear Eck,

Thanks for that!  The pain didn't materialise beyond a bit of a dull thud, which may have had nothing to do with it.  I'm like you in that I get this very infrequently, so will hope for the best.  If the clusters come back (please, God, no) I'll have a word with the doc. about the wafers.  Thanks again.
Title: Re: Optical Symptoms - Migraines
Post by: Clandy on 04 February, 2011, 07:44:06 pm
I started getting migraines about four or five times a year when I was thirteen, they continued until my late twenties and then faded away. Nowadays, once or twice a year, I will get the visual aura probably three times in the space of a week. It rarely becomes a full blown migraine these days, I just end up feeling like I have the aftermath of a hangover for a day or so. The aura starts in the centre of vision and gradually expands in an arc across my vision, eventually disappearing out of the boundary of my vision. It lasts probably thirty to forty minutes.
Usually I sit down, close my eyes, and try to catnap until it has gone. Sometimes I'll take a dose of Paramax, just in case there's a headache following.

The visual aura can be a little disconcerting for some people, but you get used to it.

I read somewhere that it is believed neolithic Shamen had migraine aura, and that is the origin of many zigzag and spiral carvings on neolithic sacred sides.
Title: Re: Optical Symptoms - Migraines
Post by: Hot Flatus on 04 February, 2011, 07:53:13 pm
I had the spiky blue and yellow zigzag thing for the first time ever a few weeks ago.

I was rather disconcerted, but it went after half an hour or so
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 04 February, 2011, 08:20:44 pm
I've had the visual aura on and off since my early teens, never associated with any pain. I don't think I've had one for a few years now. I think the last one started when I thought there was a smudge on the monitor so I couldn't read properly, and the area affected spread to the edge of my vision and disappeared. They've never lasted more that about half an hour. I never knew they were migraines until I went to my GP about them about 7 years ago, which resulted in seeing a neurologist. He just told me they were very mild form of migraine and nothing to worry about.

Following on from Clandy's neolithic shamen, there's an article about 'migraine art' here (http://www.psychologytoday.com/blog/the-healing-arts/200804/art-doesn-t-kill-you-it-makes-you-stronger)

Quote
And do a brief search on the web and you will literally find thousands of sites that feature galleries and online references to “migraine art.” It’s a well-known fact that people with migraines often report “visual migraines,” also know as migraine “auras.” Typical visual patterns include “fortification patterns” that resemble zig-zag shapes and art by many people—artists and non-artists alike—reflects these patterns. When the very first migraineurs started to express symptoms through art is not known. But there is speculation that some of the mystical paintings from medieval times, including the work of Hildegard von Bingen (Saint Hildegard), were actually the "visions" that resulted, at least in part, from a migraine attack. Van Gogh, Seurat, and many other artists have also been cited as possible “migraine artists.”
Title: Re: Optical Symptoms - Migraines
Post by: Adam on 04 February, 2011, 08:26:49 pm
I've had 2 of these optical migraines in the last 2 years - the last one was 3 nights ago, although I've never suffered a normal migraine.

It starts with a bright light and then a roughly semi-circular shimmering zig-zag shape appears more in my right eye, which slowly expands in size until it gets bigger and bigger and passes out of sight (as it were).  I then feel very slightly woozy for an hour or so afterwards. 

When it happened the first time I saw my optician who gave my eyes a very thorough check out but said it's just one of those things that happens.  :-\
Title: Re: Optical Symptoms - Migraines
Post by: RW on 04 February, 2011, 08:50:46 pm
I had a painless migraine once about four years ago.  It was bloody scary.  Fortunately I was with someone who had the same thing while he was in work and his colleagues put him in a taxi to Moorfields. 
Title: Re: Optical Symptoms - Migraines
Post by: Peter on 04 February, 2011, 09:51:57 pm
This is all very encouraging - I shall start painting right away!
Title: Re: Optical Symptoms - Migraines
Post by: HTFB on 04 February, 2011, 10:02:00 pm
It's scary to lose your vision but it seems only to be conscious perception that's affected. You're still seeing everything even if your experience of seeing is a bit wonky. I've had a migraine aura that blanked out my entire visual field and still walked the streets quite safely (with a friend in tow, just in case)---most hazard avoidance and balance and everything is entirely automated.

I'm fairly confident that if it struck again while I was riding I'd be able to keep my balance and place in traffic long enough to get off the road.
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 04 February, 2011, 10:08:52 pm
From about the age of 5 I have suffered from migraines. Visual disturbance as described above, desperately painful headache, almost always above my right eye, vomiting. I never understood why, but during the few minutes before throwing up, the headache would go, only to come back again afterwards. This lasted until I was in my 30s. I recall one attack which happened while I was teaching. It was about 11.50 and suddenly my vision went. I could see kids' hands going up but I couldn't see the faces of the owners. I went home ten minutes later, went to bed, threw up and was sufficiently recovered the following morning to go back to work. I felt washed out, and that feeling lasted a couple of days typically. This would happen about three or four times a year.

Suddenly, in my 30s, it changed. I would still get the visual disturbance but the headache didn't come. If it did, it was a feeble effort of a headache and once my vision had returned to normal I could work through. The vomiting stopped. Also, the frequency reduced to once or twice a year.

I'm bloody glad to be rid of them. It's got to be at least 20 years since I had a proper migraine. The last one I recall was on the night of the Michael Fish Hurricane.
Title: Re: Optical Symptoms - Migraines
Post by: Mike J on 04 February, 2011, 10:12:52 pm
I get the visual aura now and again, it's very disconcerting, but normally goes away without the actual headache.  I do get migraines as well, but not with the visual disturbances.
Title: Re: Optical Symptoms - Migraines
Post by: innesh on 05 February, 2011, 07:41:01 pm
This is all very interesting.  I get fairly minor aura symptoms (like a blurred starry waterfall, usually one eye more than the other) but attacks are much less common, like Mrs eck, following a gluten free diet.

What interests me more though, does anyone else experience loss of speech?  Not exactly loss of speech, but loss of being able to say anything understandable. Now, now.  :hand:

My speech goes shortly after the aura and is as scary as anything - well, used to be.  The first time I experienced it I was admitted to hospital for overnight observation, but was told it was only a very bad migraine.  At least I don't vomit. :thumbsup:

Title: Re: Optical Symptoms - Migraines
Post by: redshift on 05 February, 2011, 10:26:04 pm
Frequency: Once or twice a year
Optical: Aura like a flickering darkness, or what I can only describe as 'like looking at a negative of a sparkler.'
Headache:  Oh yes.
Vomiting: Not so far.
Cause:  Inevitably, longterm fatigue, or work-related stress.
Cure: Bed.  Darkness.  Sleep.  Migraine-specific drugs work, and ibuprofen can dull the edges, but the absolute cure is sleep and plenty of it - preferably before the headache sets in.
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 05 February, 2011, 10:29:42 pm
What interests me more though, does anyone else experience loss of speech?  Not exactly loss of speech, but loss of being able to say anything understandable. Now, now.  :hand:

Yes. I'd forgotten about that. My sister, who's 64 later this year, has suffered from migraines all her life. If anything, hers were worse than mine. She was worse than me for becoming incoherent. When she was quite young, working in an office, the first two or three times she got a migraine she told them she was going home to sleep it off. She used to get quite a few and they began to suspect that she was swinging the lead. They told her she wasn't allowed to go home.

When her bosses saw for themselves how physically debilitating a migraine can be, whenever she said she was getting a migraine they arranged for her to be taken home.
Title: Re: Optical Symptoms - Migraines
Post by: Canardly on 05 February, 2011, 10:34:41 pm
Michael Fish Hurricane,,,,,,,,,,,,,,, Do people realise the import of that?
Title: Re: Optical Symptoms - Migraines
Post by: redshift on 05 February, 2011, 10:38:21 pm
I've never suffered loss of speech, but often suffer 'lack of comprehension' when I have a migraine.  I also remember (vividly) being at work once, and not being able to look at anything in the room.  The monitor flicker from multiple TV screens was so overpowering I couldn't even look up, let alone speak.
Title: Re: Optical Symptoms - Migraines
Post by: MikeFromLFE on 06 February, 2011, 09:28:20 am
I've had the optical stuff twice (possibly thrice) in my adult life, and I don't want it again.
For me it was like a net closing down over one eye, no pain, just loss of sight. First time I was on my own at home on a Sunday, I got myself to our local A&E, who were kind but clueless. The second time I was out cycling with my son (about a fortnight after the first episode) and the same thing happened at the top of a killer hill. The next day my GP referred me to the Stroke clinic. The third possible time was about a month later when, again I was cycling, and I was completely unable to stay upright on the bike due to an absolute inability to turn the bars, this time the 'aura' was less and there was a pain behind my eye (the same one as affected previously).
Stroke clinic neurologist chap diagnosed migraine.
All investigations were negative, and the symptoms have never returned. Hopefully they never will. Chapeau to anyone living with this stuff on a regular basis.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 06 February, 2011, 01:22:58 pm
I have had various visual symptoms, usually patchy blind zones, rather than zig-zags.
I have had some speech trouble.
On one occasion, I came back froom university and tried to read young brother's school report. I could only focus on two letters at a time and remember reading out he was 'flapjack in his efforts', which should have been 'slapdash'.
Told Mum I wasn't well and went up to bed.
Then I had a one-sided, pounding headache. I was relieved as all the other symptoms then made sense. The headache was not too bad in my case. I was not sick.
I have had other episodes of vomiting in isolation. i have assumed these are migraine variants.
 
Title: Re: Optical Symptoms - Migraines
Post by: HTFB on 06 February, 2011, 02:56:20 pm
Gosh, I'm glad to avoid the vomiting. My Beloved Stoker, not a known migraineur, is at this moment eating a second dinner before a long flight home, after throwing up to relieve a vicious headache. Sounds indicative to me...

Do any of you get strange circulation problems in your fingertips? So that your fingers are unplumped, and wrinkly---or alternatively oddly insensitive and gripless?

(It is only here on YACF that I can imagine describing the major symptom that draws my attention to this, which is that the bog paper on these occasions slips more easily off my fingertips than over the manly surface of my arse, and wiping becomes a hazard.)

Title: Re: Optical Symptoms - Migraines
Post by: innesh on 06 February, 2011, 04:22:07 pm
Re odd circulation symptoms, yes, I often get a mild tingling sensation in my left middle finger but only around the pad (fingerprint) area.  In fact, that is often one of the very first symptoms.

I can also get this on my bottom lip.

Reading and thinking about all this suddenly makes me very glad that I only get a migraine once or twice a year.
Title: Re: Optical Symptoms - Migraines
Post by: arabella on 07 February, 2011, 12:31:48 pm
I sometiomes get the visial thingies as described by OP, sometimes not.  I've never kept a tally on how often I get migraine/bad headach anyway.

I read somewhere that it's something to do with uneven blood pressure and have found that sitting (on the loo so it's peaceful - not so many ladies in IT) with my head between my knees (ie like you do when feeling faint) means that after about 30 mins I am again ready for action., tail end of headache goes away by itself.

(unfortunately it doesn't do anything for tinnitus though)
Title: Re: Optical Symptoms - Migraines
Post by: Andrew on 12 August, 2015, 09:39:52 am
Resurrecting an old thread...

I suffer with silent migraines (as I'm told they are called). Maybe 8 or 10 times a year, of varying severity lasting anything from 30 minutes to several hours. The first one I had was in my 30s and was quite frightening as I didn't know wtf was happening. I could see but couldn't see, if that makes sense, so suspected the problem was neurological, nothing wrong with the eyes sort of thing.

I'm much more relaxed about it these days and know it passes. I'm pretty sure I know my triggers too; bright, reflected light being the prime candidate, some artificial lighting in certain conditions, and anxiety ( I also suffer with mild anxiety attacks)

I describe my visual disturbance as venetion blinds; as if someone is opening and closing them diagonally before my eyes. Plus a kind of left/right dissymmetry with blurring. It is often accompanied by a dull headache, predominantly over my eyes, bridge of the nose. And frustration, as you try to (pathetically!)  see!!

Yesterday, I suffered what I'd rate a 7.5 or 8. Not my worst ever but a goodun. I'm still feeling hungover now.

I don't think I've ever suffered one cycling, but I have when driving. Fortunately , my wife was with me and she could take over.
Title: Re: Optical Symptoms - Migraines
Post by: Peter on 12 August, 2015, 10:13:00 am
I'm sorry about all that, Andrew.  I still get the symptoms I first described but I haven't had a "proper" headache for years, mercifully.
Title: Re: Optical Symptoms - Migraines
Post by: Andrew on 12 August, 2015, 10:28:04 am
Cheers Peter. I'm thankful I don't suffer the full-on migraine headache as they can be, by all accounts, pretty dire. For me, for the most part, my 'suffering' is more annoying than anything else as I just see it (or don't as the case may be!) as inconvenient.

I can be somewhat scatty with it though. That is, forgetful or prone to mistakes. I don't think of that as a symptom though, more of a consequence!
Title: Re: Optical Symptoms - Migraines
Post by: Ian H on 12 August, 2015, 11:15:16 am
Interesting.  I get the optical disturbances occasionally, but never the pain.  It took me a while to work out what it was.
Title: Re: Optical Symptoms - Migraines
Post by: benborp on 12 August, 2015, 11:56:03 am
This is an eye-opener! I suffer from pretty much all of the mentioned symptoms when the neurological effects of my pernicious anaemia kick in. I get the added benefit of chromesthesia, fortunately this side of PA is painless and as I'm pretty far gone by this stage the visual disturbances and weird, rapid fire, mental associations help keep me entertained.

Is synesthesia ever involved in migraine?
Title: Re: Optical Symptoms - Migraines
Post by: Paul on 12 August, 2015, 01:48:21 pm
Another rare sufferer here, and mine are all restricted now to a neon worm in (I think) my left eye. My first one was different, though. Light-headedness followed by the gradual loss of sight in my left eye. It was as though someone was pouring black ink into it, the darkness started at the bottom and then went up until I could only see a little bit at the top. Right eye was fine. Took a few hours to recover from that. Never had that again.
Title: Re: Optical Symptoms - Migraines
Post by: trekker12 on 13 August, 2015, 05:02:23 pm
I get full blown migraines. It starts with the eye aura as described above, a kind of flickering around a moving patch of light. This is often preceeded by a weak bladder although that might be coincidence, I've not worked it out yet.

I seem then to lose motor skills. I can be sat here typing at my desk and although I can focus on the keyboard - just - my fingers don't press the buttons I think I'm aiming at - which I've never known anyone describe. Another common addition is numb tongue or fingers on the opposite side of the eye aura.

Finally a full migraine hits and although I can sit up and don't need a dark room but I lose all strength and desire to eat anything. The answer tends to result in lying down and sleeping it off but I have a dull headache for the next two days.

It's happened once on my bike on the commute home and a cereal bar with plenty of sugar in it just about got me home - I always carry one now.

The doctor started off prescribing beta blockers to take every day to keep them off but I said that was ridiculous and I only got four per year. I'm now on Sumatriptan to take when the Aura starts and they are much better. I still feel a bit rubbish but I can usually cycle home or even finish my working day before having an early night.

Not had one for a while - must due soon now I've written all about it!
Title: Re: Optical Symptoms - Migraines
Post by: Pedaldog. on 15 August, 2015, 11:21:45 pm
Pizotifen is a "preventative"med' that's relatively new over here. I've heard some positive things about it and, as long as you don't mind taking a tablet on a daily basis, could be worth speaking to the Doc' about.
Title: Re: Optical Symptoms - Migraines
Post by: Marj on 16 August, 2015, 07:25:17 pm
I used to have migraines, had the tablets, injections and the best thing that worked for me was Indian head massage. As soon as I felt one coming on I would call a lady in the village that did this sort of thing and 9 times out of 10 it wouldn't get to be a full blown migraine, it worked for me.
Title: Re: Optical Symptoms - Migraines
Post by: Cpt Sisko on 26 August, 2015, 09:02:10 pm
Mrs 531st used to suffer from migraines and after much investigation by the local GP she was referred to a Heart specialist. He discovered a hole in her heart which he told us can be a cause of migraines, but worse a stroke.

After an initial panic "hole in the heart" sounded serious to me, he told us that something like 1 in 4 of us has a hole in the heart, we never know about it, lead perfectly normal lives and live to a ripe old age. However Mrs 531's was quite large and he could do something about it if we wanted.

A few weeks later and only under a local anaesthetic they inserted an umbrella type closure to the hole (inserted through a vein in the crotch) and she never had a migraine since.

I'm not saying this is the cause of all migraines and they acted on Mrs531's quickly because it was quite large and thus she was also at greater risk of having a stoke, but if your migraine is persistent get your GP to refer you. The test for a hole is very quick & simple and the procedure to correct it 'routine'.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 26 August, 2015, 09:31:18 pm
My first migraine was probably hemi-plegic in nature. I was 11 and my right hand side (my good hand/arm) went numb and I couldn't feel my fingers and kept dropping stuff during lunch time. I couldn't speak properly and I had a painful headache.  My mum happened to be in school for something and I managed to get someone to find her, she gave me paracetamol and took me home and let me sleep.

I have never had the numbness since but I get migraines from flickering CRTs below 80Hzish and flickering fluorescent lights. I won't be in a space with visibly to me flickering lights cos I've got about 5 mins before it'll make me very unwell. I can often perceive flicker that others cannot. 

I have complex/rare visual processing issues caused by the combo of 2 other rare issues which explains my sensitivity to flicker and other visual processing oddities. Migraines are simply an overload symptom I think.
Title: Re: Optical Symptoms - Migraines
Post by: HTFB on 27 August, 2015, 07:56:21 am
I have complex/rare visual processing issues caused by the combo of 2 other rare issues which explains my sensitivity to flicker and other visual processing oddities. Migraines are simply an overload symptom I think.
One trick I use is to close one eye, especially out of doors. Save yourself all that wearying rendition of your visual field into 3D!
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 27 August, 2015, 08:34:21 am
Ah, yes, "the old epileptic's trick" as it was introduced to me.  I do sometimes close one eye to cross a road so I know my vision 'shouldn't be double' (it still is when I'm tired cos weird).

And closing one eye is uncomfortable after a while so it's only really a short term "get myself out of flickery deth space".  I've walked out of meetings before now where they were just continuing with flickery light "This will give me a migraine, I can't be in here, *stands outside* carry on without me or we move"...
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 03 September, 2015, 09:28:37 pm
Pizotifen is not that new, think I had it more than 10 years ago.

I've had pretty much all the options available to the gp so I got sent to a pain clinic. I was in a.bit of a cluster of attacks so got prescribed beta blockers half strength and maxalt melt, rizatriptan IIRC to take as wafers when an attack.comes along. Apparently those wafers have some evidence that they get into your blood faster. For me my stomach kind of stops working so tablets just don't get through before I'm sick. Nasal sprays don't get into blood quicker but those wafers do.

Personally I think you need to learn how to manage them without any treatment since I've never really had anything that worked or helped significantly. I have never tried beta blockers despite getting the prescription made up. Heard too much from a nurse friend who got told scare stories from some doctors at the hospital. Handed them in to a pharmacist after I got home.

There's a respected migraine researcher, in the USA IIRC, who has migraines with aura.  He uses the aura to study what's going on with his attacks. His theory is that the aura is related to what is happening to the person.during the attack. They're always slightly different and always different for different people.
Title: Re: Optical Symptoms - Migraines
Post by: Pedaldog. on 04 September, 2015, 12:21:39 am
I didn't realise the Pizotifen was in use for so long. the way I was told was as a "Possible new helper" but that might have meant "New£ to the person trying it. Did it help you at all TPMB?
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 04 September, 2015, 09:20:47 am
There are a lot of people who take beta blockers so I think ruling them out on the basis of a couple of anecdotes is not the best way to make a decision.

Of the 5 different drugs I've been fed over the last year they have the second-least unpleasant side effects.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 04 September, 2015, 09:45:27 am
A few years ago I made some sketches to record what was happening when my optical symptoms occurred. The neurologist I saw pointed me towards the sketches made by Hubert Airey in 1868 to showing his optical symptoms. I was amazed that his were just about identical. For me it started as a small spot in the centre and grew outwards - I described it at the time as looking like the coastline of Wales without Pembrokeshire.

Airey's sketches (mine differed in that they were black on white and I made six of them):

(http://d1gqps90bl2jsp.cloudfront.net/content/brain/135/8/2560/F5.large.jpg)

The 'visions' of Hildegard von Bingen (1098-1179) are thought by some to have been 'inspired' by migraine aura

(http://photos1.blogger.com/blogger/3287/634/1600/redeamer.0.jpg)

(http://yareah.com/wp-content/uploads/2012/01/Hildegard_Building-of-Salvation.jpg)

 
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 24 January, 2018, 06:00:04 pm
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
(https://i.pinimg.com/736x/0e/3e/fd/0e3efdd3e363492c3afcefc3b4036a1e--visual-migraine-migraine-aura.jpg)

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 24 January, 2018, 06:08:11 pm
That's about as classic 'migraine' as you can get. Glad you don't get too much impact.

Migraine is a cascade of symptoms "fortification spectrum" and some people get more minor symptoms and not others. In my case I almost never get classic aura but I apparently have some symptoms most of the time. I don't get severe pain or photosensitivity either unless I'm on topiramate which was an attempt to medicate mine.
Title: Re: Optical Symptoms - Migraines
Post by: Palinurus on 24 January, 2018, 06:20:42 pm
I had the spiky blue and yellow zigzag thing for the first time ever a few weeks ago.

I was rather disconcerted, but it went after half an hour or so

Me too. I thought "IM GOING BLIND"

Then I checked the internet, diagnosed myself*, covered my eyes with one of those things they give you on planes and noodled around on the guitar until it went away.

Haven't had another.

*well enough to know I probably wasn't going blind anyway
Title: Re: Optical Symptoms - Migraines
Post by: andrew_s on 24 January, 2018, 08:19:06 pm
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
I've been having them for 5 or 6 years, maybe twice a year averaged out.
Just the visual aura like in the image, starting with a fuzzy spot and expanding out into an arc and off the edge of my vision over maybe 20 minutes, with another 10 minutes or so of feeling slightly odd on top.

Pretty worrying at first, until I did the hand over the eye and found it looked the same with both eyes. I worked out what it was after the 3rd or 4th time, having previously only associated migraine with headaches.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 24 January, 2018, 08:27:11 pm
Some 40+ years ago, I returned home from a term at university and tried to read Young Brother's school report.
Only two letters of the Teacher's neat hand were in focus at a time.

I read aloud that *** is rather 'flapjack' in his efforts, confusing 'slapdash' with 'flapjack'.

I made my excuses and went up to bed.
I then had a pounding headache on the left, which wasn't too bad, really.

At that point I twigged what the problem was and was mighty relieved.

I've had a few repeats, usually without a headache.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 24 January, 2018, 08:38:46 pm
I get no aura, but now have migraines almost every day. Triptans still manages the pain/nausea (most of the time). Seeing the neurologist again next week and are hoping for something else. Blood pressure meds has done nothing. (apart from lowering my blood pressure).
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 24 January, 2018, 09:05:41 pm
Good luck. My headache clinic nurse has given me the protocols for 3 options, another anti epileptic, something which is supposed to be better than the beta blockers approach and a herbal/supplements option that I'd have to buy myself. When I've recovered from my lurg I'll visit my GP and have a chat about what next cos I've got a headache clinic appt review in 3 months and would like something else other than "topiramate was epic fail" attempted.
Title: Re: Optical Symptoms - Migraines
Post by: ian on 24 January, 2018, 10:54:41 pm
I've only had three migraines ever (well spaced over my life) but with consistent symptoms, but one was last week with lots of visual swirliness and a strange feeling of dislocation that makes it feel like half my body isn't there (the right side). I lose the ability to read more than couple of letters and start to jumble words. It hit me last time when I was trying to type some instant messages to a colleague. Looking back at the history you can actually see the decline in my ability to type, I couldn't find the letters. I gave up in the end and went to lie down somewhere dark. It mostly goes leaving an epic headache that lingers for a day or so. Three times is probably three times too many, but it was pretty terrifying the first time it happened and I didn't know the symptoms.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 24 January, 2018, 11:51:17 pm
There were some advantages to being a medical student, I suppose...

Sounds like ian and I had similar experiences.

I have also had Epic Puking episodes after some long journeys. I think these are said to be migrainous.1

1) 1/2/1989 Start new job in Lerwick, Shetland, having finished clinic at 17.00 31/1/89 at Addenbrooke's, Cambridge. With 10 pieces of luggage, I took:
Taxi from hospital to station,
Train from Cambridge to King's Cross,
Taxi from Kings Cross to Euston,
Sleeper Train from Euston to Aberdeen,
Taxi to Dyce,
Plane to Sumburgh
Bus to Lerwick
Taxi to GBH.

Had lunch with new colleagues.
Did a clinic.
Felt sick, vomited and blocked the sink in A&E...

Spent rest of day resting in darkened room...
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 25 January, 2018, 12:23:17 am
another anti epileptic
Looked that up. Side effects don't look like much fun.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 25 January, 2018, 12:31:00 am
Apparently when it works it's great! In my case it made my migraines 3-10x worse, severe photosensitivity and felt like there were aliens under my skin. My already trippy vision went super ghosty/persistenty which was actually scary.  I should have quit it sooner - but I kept hoping it'd settle down :/

Oh well, my migraine nurse has been lovely, answers emails really quickly and comprehensively.
Title: Re: Optical Symptoms - Migraines
Post by: CrinklyLion on 25 January, 2018, 07:49:41 am
I started with visual disturbances part way through the Young Voices performance in the manchester arena on Monday evening (I was accompanying a school choir there) and didn't clock until Tuesday evening that I was burbling along on the edge of a migraine until Tuesday evening, about 24 hours later.  Double painkillers (of can safely be taken together types) and an hour of quiet and dark fortunately managed to get it back in its box sufficiently that Tuesday night's reasonable sleep caused it to retreat leaving my with just a touch of the dislocation feeling and word manglery mentioned above and an actual early night last night means I have probably got it beated.  Hopefully.
Title: Re: Optical Symptoms - Migraines
Post by: Adam on 26 January, 2018, 08:53:05 pm
I had an optical one on Wednesday, which was the first time in a few years. Bright ball of light, and then the slowly expanding zig zags, as shown above by Salvatore. 

Going for a bike ride soon cleared up the vaguely woozy feeling.  8)
Title: Re: Optical Symptoms - Migraines
Post by: SoreTween on 27 January, 2018, 08:13:53 pm
In my late teens and 20s I'd get the optical type as Salvatore brilliantly illustrated above.  Not bad, they hurt to the point I couldn't do other than take some drugs and spend time in a dark room but not the head exploding jobs others suffer.  My Dr wouldn't give me anything stronger than Migraleve Duo.  If the pink strong dose + 45 mins didn't do it I was out for the rest of the day.  Then another Dr told me not to waste my money on that rubbish and just take a dose of 2 different painkillers.  2 para + 2 Ibu served me well until the headaches stopped at around 27.

These days I get a different effect, my sense of smell goes up to 11 15.  Now normally I have a lousy sense of smell despite being quite gifted in the facial appendage dept.  Mrs tween will suggest I smell a rose in the garden and there's nothing there, nada.  When I get one of these headaches what would normally be a nice aroma is red hot coals directly inserted into my sinuses.  Salty sea air = knitting needles driven up through my nose into my brain.  The perfume dept at the front of a branch of Boots a pickaxe through my head.  Ordinary strong smells like a lot of flowers, grinding or welding nearby or dog shit are searing pain with each pulse during an in breath.  Faint aromas I wouldn't normally even detect I can give you a 15 minute Jilly Goolden report upon.

Just me?

Same as in my younger days 2 paras + 2 ibu + 45 minutes in a dark room with as few smells as possible 8 times out of 10 does the trick.  The tough days are when I get one at work and can't get the 45 minutes in the dark.  Then it's only the 2nd dose after 4 hrs with careful intake of as much food & water as I can stomach onto that will turn it around.
Title: Re: Optical Symptoms - Migraines
Post by: MikeFromLFE on 28 January, 2018, 09:36:48 am
I've had these three times - like a net or lace curtain slowly appearing across one eye. The first time it happened it seriously freaked me out, I was on my own at home on a hot Sunday afternoon; the second time was during a 200k Audax ride; the last time was first thing in the morning as I was getting ready for work.
I now very strongly believe that they were linked to work related stress - never happened again since I retired thankfully.

Sent from my P01W using Tapatalk

Title: Re: Optical Symptoms - Migraines
Post by: ian on 29 January, 2018, 04:23:41 pm
I can handle the weird visuals and linguistic discombobulation, it's the odd sense of dislocation that freaks me out most of all. I have all the sensation etc. on my right side, but it simply has ceased to be a part of me.

As it's only happened three times, it doesn't correlate with anything in particular. I do more often get a sensation that the world is too bright (when it really isn't) that might I suppose be some kind of migraine, but that's pretty much the sum of it.
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 29 January, 2018, 09:30:39 pm
I think I've had all the symptoms possible over my life so far from early teens. They change over time. Mid twenties I got severe symptoms including a kind of paralysis to one side.

I've had a lot of treatments. The worst was migraleve. Useless! Apart from seeing it come out with the first round of vomiting (like all tablets). The rare times I took it in time for my stomach to absorb it (I believe my stomach shuts down early in my migraines) the drug combination failed to affect the pain in any measure. I knew it had been absorbed because I never saw them come out in my vomit. Sorry to be so graphic and crude.

I've tried the nasal sprays under the belief they enter your system quickly. After a pain clinic I found out it isn't true. The wafer works quicker as does the tablet version of it that you allow to melt on the tongue.

I got offered beta blockers but after a few anecdotes from medical staff and online information I returned the drugs untouched. Not as simple as listening to stories. I took the prescription and got it after a kind of pressure from the consultant.

After taking time to think things through and read up on the drugs I decided it was not in my best interest to take serious drugs. The leaflet in the pack worried me. It basically said once on it you couldn't just stop without some potential risks. Add in other factors if was a no brainer not to take beta blockers.

My migraine generally happens in spring in a cluster. In that cluster I get a few attacks but not at a high rate. I'm effectively between low and high rates of migraine. That puts me in between two categories of patient. One who gets so few it is best to take drugs to treat symptoms and one who gets so many a daily drug to try to prevent an attack is worth it. The consultant gave me the option of the daily drug with the drug to take during the attack. He did however make it clear that he wanted me to take it. Pressure of you like.

My attacks have been getting less severe with the odd bad one, but not so bad as I used to get. Plus I've got an almost zen like way of coping with an attack. My only worry is if my boy sees me having one. So much so I'll fake being OK when he's around me. Hard to do but I've seen his face (through distortion) when he did see me at my worst. I scared him.

So right now I'm reducing my risks. Sunglasses (prescription because I'm short sighted), regular food intake and regular exercise. I'm down to at most 4 attacks a year that stop me getting on with my life. I believe I get some more attacks but very mild ones that I don't even register. Those times I feel a bit funny or sensitive to light but nothing else.

The interesting thing about migraines is how varied symptoms different ppl get. Nobody gets the same migraines as you do, unique to you. That means you have to find your own drug and treatment choices. Beta blockers aren't for me but could be for you. That's great but it's as valid to refuse treatment as take it up.
Title: Re: Optical Symptoms - Migraines
Post by: arabella on 30 January, 2018, 12:58:35 pm
I'm now the 'lucky' owner of what are apparently optical migraines, not sure if they are an actual thing as compared to a normal migraine, certainly not like the ones I used to get.
It feels as if I have a darning needle stuck through my left eyeball.
Up to a certain level I keep going
then I retire to a corner
I have yet to work out whether application heat or cold is beneficial
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 30 January, 2018, 08:55:28 pm
Time. Seriously IME with classic migraines (with full range of optical effects) is to give it time. Time is the only healer of migraines. My preference is to go to bed in a darkened room to try and sleep. Luckily I've learnt to calm myself and go to b sleep no matter how bad it gets. Nausea and vomiting permitting of course. I can't sleep through being sick (it's too violent with my migraines).

That's just my opinion and experience.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 01 February, 2018, 11:12:50 pm
As suspected, Doc now prescribed Topamax/topiramate. I'll take the weight loss happily, but hope to avoid the other side effects.
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 02 February, 2018, 12:40:52 am
Good luck  :-\
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 02 February, 2018, 09:38:10 am
topiramate has strange effects, they aren't the same for everyone.

One effect that hits many people but isn't in the 'official' lists is a disassociation from emotions (apart from anger, you still get angry); this can be quite extreme initially, resulting in a lack on inhibition to respond to impulses. The best description I can give is it creates, temporarily a type of sociopathy. You feel no restraint from, for example, pushing people out of the way when walking along the street, even dangerously so. Consequences do not make sense.

If you know about this side-effect and are prepared for it, then it can be coped with. Mostly it goes away after a short period when the drug settles in. Oddly, an increased dose can decrease the effect.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 03 February, 2018, 04:40:05 pm
Good luck with the topiramate. I didn't get the nasty effects Mr C describes but I had other ones. My mistake was not quitting sooner when it was clear bad effects didn't go at higher doses for me.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 28 February, 2018, 12:09:15 am
Still on low dose. Soda does taste flat, but so far that's really the main side effect.  Migraines are slightly down, but still statistically insignificant. Increased dose to 50mg/day last week (second time around) around the same time as a bad cold set in and I had really weird dreams and dropped back, just to make sure. Back on 50mg as of 2 days ago and so far so good. (About a week behind schedule, but Doc made it clear that I could proceed as I saw fit).
 Haven't killed anyone, nor had any desire to do so :D
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 February, 2018, 12:39:07 am
Sounds good Jakob, hope things continue to go well. 50mg is still not very much so there is hope higher doses might have more effect.

Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 February, 2018, 12:44:06 am
Had the strange experience of 3 optical migraines with proper scintillating scotomas in 18 hours last week. One at 6pm, the next two at 9:30am and 11:30amish the following day. Strange because I only get the scotoma stuff about once every 1-2 years, so 3 at once is notable. One of the reasons I didn't realise my lighting/vision/balance issues were largely migrainous was because I didn't get classic severe headpain or the scotoma most of the time. The migraine nurse explained that the scotoma were only the last in a series of possible symptoms "fortification spectrum" and I clearly persistently had other symptoms.

Triggers were probably the 100Hz flickering LED lighting in aunt's house, stress of my Gran's funeral and flickering lights in the post-crem hotel and several nights of poor sleep. Last time I was in aunt's house I was eating zolmitriptan to stop the lights doing my head in but it made me hideously nauseated so I decided to not bother and the symptoms pre scotomas did get to a level and then stop.

I need to chase my GP for an appointment to discuss next drugs options as the locum who my last appointment was switched to wouldn't touch the migraine stuff.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 28 February, 2018, 02:43:51 am
Sounds very unpleasant!

Doc has me maxing out at 100mg as he says it's diminishing returns above that.

I still haven't found a consistent trigger. Alcohol is the closest to anything reliable and it's still at about 15% chance.(I rarely drink anyway.).
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 28 February, 2018, 07:55:45 am
Sounds very unpleasant!

Doc has me maxing out at 100mg as he says it's diminishing returns above that.

I still haven't found a consistent trigger. Alcohol is the closest to anything reliable and it's still at about 15% chance.(I rarely drink anyway.).
100mg as a max? that's and odd thing to say, people who get fits take up to 400mg.
I'm on 75mg (well, I alternate with 50mg by choice; it is the lowest dose I can take and have it work).

My triggers are; red wine, caffeine, flashing lights, sharp noises, some odours, spinning motions, balance maneuvers (where I can't see the horizon), some stripy patterns, stress and intense lights (pinpoint bright light sources can set me off, even if the actual lumens aren't high).

Some of these 'triggers' didn't seem to be triggers. I stopped drinking coffee, for example, at the doctors request. Now I can't tolerate it at all. Not even a sip.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 February, 2018, 11:30:02 am
Sounds very unpleasant!

Doc has me maxing out at 100mg as he says it's diminishing returns above that.

I still haven't found a consistent trigger. Alcohol is the closest to anything reliable and it's still at about 15% chance.(I rarely drink anyway.).

Intrigued that your doc is stopping topiramate at 100mg cos I too was told sometimes up to 400mg is needed, or at least a higher dose then taper back down (if it's tolerable). 

I don't have many triggers, mostly flickering and bright or glaring light. My flickering light trigger is lifelong but the increased sensitivity is a thing since 2015. Now I can see flicker I know I couldn't see before. Modern trendy lighting design Does Not Help at all.

I am dubious about other triggers, but i have noticed onset of acute facepain when put under acute stress like access failings. Sleep dep I'm less convinced about but like Mr C says it could be an invisible symptom.  I did give up caffeine but it made no difference - similar to my vertigo exclusion several years ago. Current neuro bods think a lot of my vertigo is migrainous which is making sense.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 28 February, 2018, 09:11:21 pm
Actually you might both be right!. Just realised that I calculated it to take ~8 weeks to ramp up to full dose and 100mg is only 4 weeks. He must have capped it at 200mg. I need to find the hand out he gave me.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 01 April, 2018, 11:22:31 pm
Nope 100mg is the limit. Occasional pins and needles in the extremities after hard efforts. Sodas taste flat on the middle of the tongue. Minor loss of appetite, basically just brought snacking under control without any conscious effort (which is nice).
No effect (yet) on migraines whatsoever.  I suppose I'm only just entering the phase where I should start seeing any benefits....Doc was very hesitant putting a time line on it, as it apparently will vary a lot. Wont see him again until May.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 02 April, 2018, 01:48:14 pm
My neuro lot seemed to think that Topiramate might settle at a dose eventually but....

My leaflet had a ramp to 100mg then 3 months, ramp to 200mg if needed and then wait 3 months and if necessary ramp to 400mg and hold...

When I asked how long for efficacy 3 months was the minimum and that seems to be their line 3-4 months for anything.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 02 April, 2018, 01:55:44 pm
I've just done day 5 of Zonisamide, another antiepileptic known to be more tolerable for those of us who don't get on with topiramate.

I must say I'm unconvinced and suspect I'm getting increased photosensitivity and migraines again. And my sensitivity/distress from flicker is worsening which is :(

Will try and stay on it up to 50mg a day (have 2 weeks of 25mg, 2 weeks of 50 etc up to 100) which is when I see my neuro-ophthalmologist and migraine nurse in same week. 

I still haven't had the MRI they wanted last year... I chased it once... I've now got a neuro appt and I am checking they don't need the MRI before saying anything cos I have virtually no change in symptoms except worse on meds x2 and I'm not very happy tbh.  Except sodding secretary is back to not answering her emails or having an out of office >:( they're horrific by relay so I refuse to do that... But I don't want to pay £20+ to go to an appointment to be told "oops sorry we need MRI results"...

So much for reducing stress! The hospital causes stress!
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 09 April, 2018, 05:10:21 pm
Ditched zonisamide on day 8. It was giving me flickering from daylight and anything with hard contrast and perma migraines... fuck that...

Withdrawal day 5, flicker sensitivity reducing as are migraines (slowly) although I feel non specifically shitty today.  With a 63 hour half life that's over 2.5 days per halving... I was only on lowest 25mg dose so decided just to stop rather than alternate days, expecting to feel shite either way.

ION: Secretary I chased to answer my sodding email how has out of office "till August" which seems bollocks. Head of complaints has not allocated me a caseworker as promised by today. 
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 09 April, 2018, 05:17:43 pm
We were taught in medical school that a drug was effectively absent after five half lives. That's a fortnight, I would guess  :(
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 09 April, 2018, 06:47:36 pm
Quite possibly... Thankfully I wasn't on higher than 25mg... Anti-epileptics, about as much fun as Vogon Poetry and about as endless to taper on and off... Thank feck I don't have epilepsy!

Todays' migraine is fun, stabby pain and aphasia affecting my spoken and written language rather considerably. Thank goodness for the little red squiggles and being able to type and edit.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 01 May, 2018, 06:55:16 am
Stopped taking topiramate as it wasn't doing anything and frequency was up if anything. Minor chronic upset stomach was getting annoying too.
 It has however seemed to make extremely grumpy.  Maybe I should have ramped it down instead?
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 01 May, 2018, 09:55:05 am
I just saw Salvatore's illustration. So, so accurate. Mine are usually the other way round, and there's more orange in them, but a brilliant depiction. Worthy of the Tate Modern in my view!
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 01 May, 2018, 12:57:15 pm
Stopped taking topiramate as it wasn't doing anything and frequency was up if anything. Minor chronic upset stomach was getting annoying too.
 It has however seemed to make extremely grumpy.  Maybe I should have ramped it down instead?
Making you grumpy is one of the known side effects.

Taking an increased dose can help with this and the other effects.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 03 May, 2018, 07:07:33 am
It made my grumpy when I stopped!. It seems to have gone away now. Stomach has settled down too, which is nice.

Seeing doc again next week.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 04 May, 2018, 06:27:48 am
I just saw Salvatore's illustration. So, so accurate. Mine are usually the other way round, and there's more orange in them, but a brilliant depiction. Worthy of the Tate Modern in my view!

Not mine, just something I found which accurately portrayed what I experience. Mine once switched round, from being like the coast of Wales to that of East Anglia, so to speak. Or vice versa.
Title: Re: Optical Symptoms - Migraines
Post by: Chamford Sideplate on 09 May, 2018, 06:29:10 pm
Salvatore, that's an excellent depiction of the visual distortions I get (even if you didn't create it yourself). I have seen it called "scintillating scotoma". Some years I have none, some years I have them almost every day though the triggers seem to be the same: bright lights, like the sun reflecting off a puddle or a car windscreen and, perhaps, stress.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 21 May, 2018, 06:53:34 pm
So, after stopping taking all drugs, the rate of migraines have decreased...go figure. Not long enough time to say for sure. Had 4 days with virtually no headache, which is the longest this year, followed by a couple of days with and then again a 3 day break. This is coming from where it was maybe 1 day a week.  Need more data, though.
Saw the neurologist last week and while he ideally would have had my try the topiramate for longer, he agreed that it most likely wasn't working.
He was, however, fairly excited about CGRP monoclonal antibodies and said that I would be an ideal candidate for it. It should be available in September, but wont be cheap (My insurance should cover some/all of it? Depends).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5486583/
http://theconversation.com/the-first-effective-drugs-for-preventing-migraine-may-be-available-soon-89109

Meanwhile, he has me trying out Gabapentin. It's pretty much a knock-out drug at this stage. (300mg, taken at bed time). The drowsiness in the morning is pretty severe, but he has me scaling up at a very slow level (2 weeks on 300mg, then 2 weeks at 600mg, max out at 900mg) and I can hold/scale down as needed.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 21 May, 2018, 08:03:37 pm
Interesting re gabapentin, my lot said there was no evidence for it but some of the people on the vestibular dysfunction group I'm in (mostly vestibular migraine) have had it.  I've been offered it before for pain management but refused as I didn't want it masking "over-use" injury...

My migraine lot are excited about the new monoclonal CGRP stuff too but it will be Spring 2019 before NICE and NHS work out stuff and she didn't know what the protocol would be i.e. before or after trying botox injections and stuff...  I may also be a candidate as I've failed so many other meds and have almost perma migraines.

I'm currently trying dolovent supplements cos dealing with blood tests for candesartan isn't within my brain capacity atm. 
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 21 May, 2018, 08:20:14 pm
Yeah, the gabapentin seems like 'Let's just try something until the CGRP becomes available'.
Candesartan did an excellent job with my blood pressure, but not much else.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 22 May, 2018, 06:17:36 am
Gabapentin seems to be marmite like everything else.

My BP is quite low already so I am slightly concerned candesartan will drop it too low, I'll probably try that if the supplementation doesn't do anything cos I'm also not expecting it to 'cause any probs' beyond bright yellow pee either.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 22 May, 2018, 08:27:00 am
I am in a bind with drugs. Topiramate is working fine for me - but simply because I wasn't given potassium citrate with it (and my research now suggests that should have been standard protocol) I will have to stop taking it.

I can't function without it. Can't work. Can't even walk without a stick.

Not sure there are any effective alternatives for my issues - any drugs that have similar effects have the same problems with kidney stones. Studies seem to suggest once the kidney stone problems start, simply adding potassium citrate doesn't solve the problem, you have to start off taking it.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 26 May, 2018, 01:17:50 pm
Feck, that sounds grim.

Is it worth talking to a pharmacist as they may know more about reality of meds than doctors. 

I wasn't told of kidney stones issues with either topiramate or zonisamide but I can't get candesartan without kidney function blood tests before taking it and 4 weeks in. 
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 27 May, 2018, 09:37:54 am
It might be - depends on the pharmacist.
Meanwhile, I have been put on Tamsulosin to dispose of kidney stones. Seems I am one of the 3% who get low blood pressure, vomiting and extreme gastric upset from that drug. Ceasing taking it.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 28 May, 2018, 12:31:31 am
Feck, that sounds grim.

Is it worth talking to a pharmacist as they may know more about reality of meds than doctors. 

I wasn't told of kidney stones issues with either topiramate or zonisamide but I can't get candesartan without kidney function blood tests before taking it and 4 weeks in.
Yeah, that does sound bad. If I found a drug that worked, I would be extremely reluctant to go off it.

I was warned about it and was told to increase my water intake. No kidney tests for candesartan needed here.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 May, 2018, 01:48:36 pm
Interesting how varied the protocols are.

Rereading my topiramate letter it does say to drink more fluids and risk of kidney issues but no co-incliding prescription.

Sorry to hear you're having shit reactions to meds Mr C, hope the docs can find a combo which keeps you functional and works.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 05 December, 2018, 04:00:31 am
Well, finally got my Aimovig doses (GCRP monoclonal antibodies).  First time injecting myself with anything, but autoinjectors made it easy.
Really hope this works.
Courier was slightly puzzled by the big cooling box with biohazard signs on it!.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 07 December, 2018, 01:32:28 am
Oooh! Hope it works for you. I'm due a review in Feb... Suspect they'll make me do botox before they agree to the new stuff.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 08 December, 2018, 04:25:59 am
Mixed outcome so far. (Early days, but many responded with instant results). Sleep miles better, wake up with a mostly clear head. Still get headaches in the afternoon, but at least the mornings are clear.
Lotsa stress/pressure at the moment which probably isn't helping.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 09 December, 2018, 02:10:57 pm
Cautiously optimistic the new stuff will help you more as time goes on.

My migraines are so 'background' + triggers it is really hard to define what is migraine. I've /always/ had headaches, most deaf people do cos we're constantly overloading our brains to process sound.

My plan is to ask for a neuro consult with someone who has SEEN flicker sensitivity like mine in a real patient not just "migraine is weird shit" cos I'm not convinced the sensitivity is entirely migrainous and even if it is, I want to know why it's not improving with reduction of triggers, cos flicker light is always instantly triggering and the visual distortion is extremely annoying.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 28 December, 2018, 06:21:44 am
Maybe a 10% reduction. However, triptans work better now and the 'clear' periods are definitely more clear.
On my diary sheet, the doc has severity listed at 1-3, but in reality, if it was a scale on 1-10, I would often have headaches of 1 or 2 that I would not bother marking down.
 I can also better tolerate alcohol. I still pay for it, but it's manageable.

Only side effect has been bowel movements going from 2 a day to once. (was warned about potential constipation issues)..so not really an inconvenience at all.
Would I pay for it out of my own pocket? Marginal. But it's definitely improved my quality of life.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 December, 2018, 02:57:19 pm
Interesting. Do you think you'll get more improvement over time perhaps?

I know what you mean about not logging 1 or 2 out of 10 stuff, I suspect I don't even notice a lot of my "migraines" cos my baseline is not great or I'm blocking out other more significant pain by dint of ignoring it.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 03 January, 2019, 06:28:56 am
Dunno. Just injected round 2.
Changed to a pharmacy near work for my regular triptan prescriptions. Only 3 mins walk away, so it made sense.
1st time, they lost it and I had to wait 15 mins while having an increasing line of irate (other customers) behind me.
2nd time, they queried why I was refilling already."I got chronic migraines. Please contact my neurologist if you have concerns about my medication".
3rd time, I had to pretty much argue with the chief pharmacist. If they at least pretended to be concerned about my well-being, I could accept it, but they don't and it just seems to be a power-trip.
I think I'm changing back.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 03 January, 2019, 02:48:46 pm
Boo to annoying pharmacy, not what you need. I am very lucky the GP and pharmacy have almost never made errors in our prescriptions for 10 years and always help me get the 1 or 2 glitches fixed.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 03 January, 2019, 03:13:51 pm
Boots are reporting 'manufacturer cannot supply' for 50mg Topiramate tablets. Been told this twice now. I keep a supply in hand so I'm not running low yet,  not yet . . .
This is worrying, it has been going on for months.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 12 January, 2019, 04:09:21 am
5 days free...and today may just have been my cold. (Took a triptan and it did nothing...took a Sudafed as my nose turned into a fountain and the headache went away).
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 24 January, 2019, 06:32:21 am
Ok, so despite working 7 days a week 12 hour days under a lot of stress and pressure, I've seen a 30-35% reduction. Severity is down, triptans effectiveness is up.
I sleep better and I poop better.  It's not a cure, but it's a significant improvement. This is after 2 doses. Would love to see what low pressure, more healthy lifestyle would do to it. (which is still a month or so away).
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 14 February, 2019, 10:15:51 pm
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 14 February, 2019, 11:22:46 pm
You can have migraines with just aura and no headache etc. I rarely get aura - maybe once every 2 years or so, but often don't get a headache after, just severe photosensitivity...

Delighted to see improvement for you Jakob. My review with migraine clinic was pushed from Feb to April so we'll see what they say then. I'm still struggling with lighting (more cheap shit flickering LEDs everywhere) and have given up on all the drugs including triptans which were worse than the migraines.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 15 February, 2019, 01:28:38 pm
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.
And again today, this time for the first time ever with a headache.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 15 February, 2019, 02:26:25 pm
I occasionally had patchy blind spots without headache.
Don't think I've had this since I stopped working >15 years ago.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 17 February, 2019, 02:18:40 pm
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.
And again today, this time for the first time ever with a headache.
And today. Nothing for a year and now 3 in 4 days. The novelty is beginning to wear off.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 17 February, 2019, 05:13:46 pm
GWS Salvatore!
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 06 March, 2019, 10:58:55 pm
Had myself a delightful flashy migraine job on Sunday, think that's the first in 13 months since the three back to back just after Gran's funeral in early Feb 2018...  I am still definitely not right. Blue lenses definitely help. Have just stayed in them at work although I don't usually do my student work in them cos they're a bit less friendly (can't see/read my face so well).

It was weird at work on Monday, I couldn't handwrite properly, my grapho-motor skills (and general motor skills) were awful. Fortunately I work with largely dyslexic students who are sympathetic to "I'm having spelling fail today". Weird cos my spelling is normally amazing and I could spell while typing at that point (although today typing isn't so great).

Brains... Fascinating.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 06 March, 2019, 11:16:28 pm
Much neurology was learned from patchy brain fail.

Both MS and migraine can cause very curious weirdnesses.

Clever folk can pinpoint the exact location of the brainfail.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 06 March, 2019, 11:27:19 pm
Add to that the fact my vision already makes neurologists go "eh?" cos in theory it shouldn't work as well as it does but it does work till it doesn't. I suspect migraines largely reduce my ability to compensate so I see the distortion which is my norm. 
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 06 March, 2019, 11:48:56 pm
Suspect your brain does a lot of 'filling in' when not migrained.

I know mine does for my left eye, whose bitmap is moth-eaten.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 07 March, 2019, 10:11:18 pm
*nods* when I'm tired without migraine it is harder to converge and stop my double vision being annoying. Apparently adults with lifelong double vision shouldn't notice it ever, but that's clearly bollocks as I've always noticed it...
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 07 March, 2019, 10:15:40 pm
Seldom get double vision but am fascinated how brain 'colours in' desaturated left eye view through closed but not covered right eye - lid giving 'red' input. (Covering obliterates this.)
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 07 March, 2019, 10:28:32 pm
Back in the 1990s, video cameras had mono CRT viewfinders (which were much better than this modern pixellated rubbish).  You could get interesting effects when comparing your vision in one eye, the other eye and both eyes immediately after using one for a prolonged period.

Title: Re: Optical Symptoms - Migraines
Post by: yorkie on 07 March, 2019, 11:38:36 pm


Apparently adults with lifelong double vision shouldn't notice it ever, but that's clearly bollocks as I've always noticed it...

I would agree that it is bollocks. I have had quite bad double vision since birth and I have always noticed mine (51.5 years and counting, so far!)

I have also suffered with migraines for decades - sometimes aura, sometimes headache, sometimes both. 
Funnily enough, I haven't had a migraine since giving up playing large brass musical instruments in top section contesting brass bands about 5 years ago. Don't know if they're linked. Don't care anymore, either!
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 23 March, 2019, 11:17:52 am
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.

One yesterday morning - it must have started while I was asleep, because I only caught the tail end of it when I woke up.

And again this morning while buying handlebar tape. I've delayed cycling home until it's over, which it nearly is.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 24 May, 2019, 06:45:42 am
So, I went to Japan for vacation for 3 weeks.  This trip did have several alcoholic encounters, but for spme reason, the overprocessed Japanese beer has always been kind to my migraines...and it was the same this more.
More curiously, I only had 1 non-alcohol related migraine....but the moment I got back, *bang*, hello chronic headache.
I conveniently forgot my toothpaste and had to buy a (by my taste) weird Japanese one....could I really be allergic to Colgate?
I shall experiment!
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 24 May, 2019, 07:32:09 am
So, I went to Japan for vacation for 3 weeks.  This trip did have several alcoholic encounters, but for spme reason, the overprocessed Japanese beer has always been kind to my migraines...and it was the same this more.
More curiously, I only had 1 non-alcohol related migraine....but the moment I got back, *bang*, hello chronic headache.
I conveniently forgot my toothpaste and had to buy a (by my taste) weird Japanese one....could I really be allergic to Colgate?
I shall experiment!
check for eugenol content.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 24 May, 2019, 08:17:37 pm
Googled for alternative toothpaste...and promptly ended up on anti-vaxxer like sites....will require more careful research, I think
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 03 June, 2019, 05:24:17 am
So, I'm starting to suspect I may be allergic to dogs. Last years trip, I spent the majority of my time in dog house holds. This year, I met one dog in 3 weeks.
At home, we're kinda/sorta semi-separated (It's complicated!). It means we have 2 households and Hana, our Great Dane, splits time, depending on schedules, etc. She's been with my wife all week and I slowly improved over the week....went there this weekend, and I'm definitely reacting to something.
I think it's time to go to the GP and ask for an allergy test.
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 03 June, 2019, 12:52:43 pm
I think it's time to go to the GP and ask for an allergy test.

Good idea.  It's helpful to know what you are and aren't allergic to.  I was surprised to learn that I'm not at all allergic to cats, but make up for it with all the pollen, and a horrendous reaction to house dust.  When I was younger and more prone to acute respiratory problems my dog allergy never showed up simply because I was too terrified of them to get exposed.
Title: Re: Optical Symptoms - Migraines
Post by: Mrs Pingu on 06 June, 2019, 08:41:27 pm
I'm having what I assume is aura now. Like some sort of flashy wavy northern lights out the side of one eye. It's quite distracting.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 06 June, 2019, 08:56:14 pm
Ugh hope it passes soon and you don't get nasty headache or pain.

I've had 3-4 days of constant severe photosensitivity not helped by an hour in my opticians waiting for lens cutting/swapping under their evil lighting.
Title: Re: Optical Symptoms - Migraines
Post by: Mrs Pingu on 06 June, 2019, 09:38:30 pm
Only had it a couple of times. No headache thankfully. It seems to have passed now.
Tonight's one was preceded by a view that looked like I'd looked directly into the sun, even though I was indoors at the time, which confused me.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 20 June, 2019, 05:19:48 pm
Damn migraines are back.

Not serious yet, just continuous low level headache, vague dizziness and memory fog. Some dysphasia
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 26 June, 2019, 04:38:38 pm
I've been sending scrambled birthday messages to Wow because I was hitting the wrong keys and could not see the right half of the world properly.

I think I'm better now.

Please forgive any gobbledygook!

I don't have a headache...
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 26 June, 2019, 09:29:20 pm
Ugh, hope your vision's back to normal and you don't get any other postdrome symptoms. I don't usually get much of a headache, more just pressure or occasionally weird jaw pain.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 26 June, 2019, 09:38:13 pm
I'm very much back to normal now, thanks!

I generally need to be VERY stressed to have this.

I was.

I'm sure Wow will forgive my typing.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 26 June, 2019, 11:34:22 pm
Sorry you had so much stress to trigger a migraine. I'm sure Wow will understand.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 05 July, 2019, 02:44:49 pm
Migraine clinic appointment yesterday was a waste of time cos NICE have delayed their decision (https://www.nice.org.uk/guidance/indevelopment/gid-ta10302) on CGRPs the latest meds (https://www.migrainetrust.org/living-with-migraine/treatments/calcitonin-gene-related-peptide-pathway-monoclonal-antibodies/)... Nurse had been hoping for a decision by the time she saw me as my appt has been put back once from Feb to May then to July cos of hospital access issues ...

I've failed on at least 3 prophylactic treatment classes (anti depressant, beta blocker and anti-epileptic) and Nurse doesn't think botox is going to help and it would require several injections at the hospital with evil flickering lights (which I'm in legal complaint with them about now).

I had to have this appt at a different healthcentre cos hospital can't provide a spare room for me to wait in without evil flickering lighting in a fucking migraine clinic and they're refusing to fix the evil lighting (which I am pushing for). Healthcentre was 50% better, only evil lighting in corridor but I won't be able to access any treatment at there... So that's an element to add to complaint (I'm trying to get the trust to comply with the basics of the accessible information standard and Equality Act with simple not expensive changes to practice which they should be doing anyway).
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 05 July, 2019, 03:04:12 pm
That really is shit, barakta!

Really hope you get better treatment and environment!
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 05 July, 2019, 09:45:41 pm
Thanks. I've got the nurse to send me/GP the protocol for propanalol for migraine as I figure retrying that is worth a try as the last time I used it was 1994 and from talking to the nurse I probably wasn't on a high enough dose for long enough. Also it doesn't involve blood tests and I suspect my GP would agree to prescribe. Worst case it doesn't help or has side effects...
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 06 July, 2019, 12:06:39 am
Good luck! Propranolol is cheap (I think but Brexit/Trumponomics might change this) so your GP won't be deterred on this count.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 06 October, 2019, 08:26:56 am
Super early days, but I started on a keto diet last Sunday...I had migraine Monday and since then, nada.  Had a couple of warning signs, but ignored them and they turned out to be nothing.
While weightloss was the primary reason, I was also keen to try it because there's some suggestion that it can help with chronic migraines and so far so good?.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 06 October, 2019, 02:21:09 pm
[Anecdata] My migraines have been very sporadic an AGES apart but more often associated with travel and disrupted eating than much else. Intermittent high carbing might be a factor.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 23 October, 2019, 03:55:26 am
3.5 weeks in and it's ~2 mild/medium migraines a week. Huge improvement.
I shall have a croissant on Sunday to mark the 4 week mark and see how I react then.
Also seeing my neurologist on Friday, so I'd be curious to what he has to say.
Title: Re: Optical Symptoms - Migraines
Post by: chrisbainbridge on 25 October, 2019, 10:55:21 pm
Interesting as a very high fat diet was once prescribed for epilepsy. Whilst not similar they are both nerve problems.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 27 October, 2019, 09:22:31 pm
Actually, that's partly what led me to try it. While there wasn't enough data on migraines, there was on epilepsy, which suggested that it did something to the brain.
8 days without a migraine. This is the longest since I started keeping diary (2+ years).
Title: Re: Optical Symptoms - Migraines
Post by: Mrs Pingu on 27 October, 2019, 10:12:11 pm
 :thumbsup:
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 October, 2019, 07:26:27 pm
Interesting. I've heard lots of stuff about the overlaps between epilepsy and migraine. And certainly anecdotally many epileptics experience similar visual stress symptoms to migraineurs even if they're not officially photosensitively triggered.
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 30 October, 2019, 09:36:17 am
I'm a long time lurked but rare commentator in migraine corner because as bad as my family think mine are they're nothing like how you good people suffer. I only get one debilitating attack a month out seems. Although I feel like I'm in a state of getting a second for 2 weeks.

Had one Sunday about 10am. I was able to safely drive the van home by 1pm. A couple of years ago my migraine completely changed. From having a uniform pattern of attack. It's now going fast at times. I'm also noticing I've had periods of mild light sensitivity with no other migraine types of symptoms.

This all worries me. I liked my uniform nature of migraines. It has been almost constant since it first appeared with a fury at school decades back. It comforts me to know ahead of time my migraine cycle so I have the opening to getting over it in mind.

Very predictable until past year. Then milder attacks. Even the Triptan I have sometimes worked. Worse than my bad,  predictable attacks of old.

Another worry I have is occasional visual effects in left eye. It's like my eyesight is failing but it's very migraine like. That happens very often. Could that be migraine related or is it just eyesight related? Is it optician or gp visit symptom?
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 30 October, 2019, 09:46:44 am
Another worry I have is occasional visual effects in left eye. It's like my eyesight is failing but it's very migraine like. That happens very often. Could that be migraine related or is it just eyesight related? Is it optician or gp visit symptom?

On the eyes-are-precious principle, I'd suggest getting an optiquack to eliminate obvious physical symptoms first, if only because it's quick and easy to get appointments with them.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 30 October, 2019, 10:33:18 am
What Kim said. Opti ducks have the equipment for measuring issues with your eyes, and the specialist training for checking issues.

Might well be migraine-related. But get a real medical professional to check (and rule out) eye illnesses first.
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 30 October, 2019, 12:44:15 pm
Optiquack? Is that gp or ophthalmic technician at specsavers? Seriously,  English guy who has three specsavers franchise in the next town to mine that I use is very,  very good and gives you advice that all other opticians should have given me for the last 30+ years but didn't. High prescription and high risk for detached retinas. He told me that info plus the symptoms and recommended action. A&E because early diagnosis allows for saving sight,  even repair apparently.

Find a good optician sent and insist on only seeing them. Worth doing imho.

Anyway,  doctor or optician? Don't understand optiquack term sorry.
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 30 October, 2019, 01:37:18 pm
'optiquack' is sheddispeak for optician, sorry.
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 30 October, 2019, 06:59:32 pm
Sheddispeak?

This could carry on and on if we're not careful.  :)
Title: Re: Optical Symptoms - Migraines
Post by: Kim on 30 October, 2019, 07:07:45 pm
uk.rec.sheds aka Ye Shedde, a place from the days when the internet was black&white 7-bit ASCII, and threading worked properly.

It's a bit like a combination of YACF's The Pub and The Knowledge forums, and several forumites are veterans.  Word play, especially that based on ROT13 (https://en.wikipedia.org/wiki/ROT13), is strongly encouraged.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 30 October, 2019, 07:20:38 pm
Certainly, Tim Hall, Mr Larrington, me and a few others were Sheddi.

Some of us still hang around a sheddy Facebook group.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 04 November, 2019, 11:07:53 pm
So, this weekends trip/tournament meant I ended up blowing up my carb budget and somewhat predictably, the migraines returned.
The next test is to see if I can get rid of them again!. Back on keto as of yesterday evening, but last time it took a good 3 weeks to clear the migraines completely. (Although with significant improvement the first week).

Title: Re: Optical Symptoms - Migraines
Post by: andrew_s on 08 November, 2019, 02:14:34 am
Super early days, but I started on a keto diet last Sunday...I had migraine Monday and since then, nada.  Had a couple of warning signs, but ignored them and they turned out to be nothing.
While weightloss was the primary reason, I was also keen to try it because there's some suggestion that it can help with chronic migraines and so far so good?.
I'm just reading a New Scientist article about keto helping with migraines (24 aug, prior to recycling).
74% of people had less than half the normal number of migraine affected days while on a keto diet, it says.
About double the best alternative drugs, though short term so far.

Is that what prompted your choice?
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 08 November, 2019, 08:45:28 am
Similar to the Atkins diet? Didn't dr Atkins die obese and with a heart attack? Doesn't keto diet fly in the face of decades of medical nutritional advice? Do the boffins now advise this diet for some people now?

I've got a few things I live with that diet change could help.  IBS (AKA the gp hasn't a clue and wants to move on to the next patient) and migraines. Really I need help but things being as they are I'm not going to get any so the keto might be interesting to me.

Up front I don't like diets. Eat healthily and exercise, do that and I always believe you shouldn't need a diet. Plus the low carb diets scream quackery to me. Wherever I've missed out carbs I have no energy.

At the weekends sheer laziness often means breakfast is 3 or 4 scrambled eggs. I find without at least 2 slices of buttered toast as well I'm shaking with low energy before lunch. I struggle to see how you can get enough energy from fat if you're active.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 08 November, 2019, 08:46:34 am
Super early days, but I started on a keto diet last Sunday...I had migraine Monday and since then, nada.  Had a couple of warning signs, but ignored them and they turned out to be nothing.
While weightloss was the primary reason, I was also keen to try it because there's some suggestion that it can help with chronic migraines and so far so good?.
I'm just reading a New Scientist article about keto helping with migraines (24 aug, prior to recycling).
74% of people had less than half the normal number of migraine affected days while on a keto diet, it says.
About double the best alternative drugs, though short term so far.

Is that what prompted your choice?
If my migraines had been reduced to just a half, I would still be non-functional. Walking with a stick, not able to drive. Frequency was 5-10 times a day with multiple side effects.

The 'best drug', once we'd found the one (and dosage) that worked, reduced the incidence to a few times a month, and reduced the 'power' of the migraine.

Migraine is a term covering multiple neurological conditions and articles like that in the New Scientist draw no distinction between the types of condition. Doesn't help people really.
Title: Re: Optical Symptoms - Migraines
Post by: andrew_s on 08 November, 2019, 04:05:56 pm
Didn't dr Atkins die obese and with a heart attack?
Tripped over a paving slab and bashed his head, iirc
No walking helmet worn  ;).
Title: Re: Optical Symptoms - Migraines
Post by: TPMB12 on 08 November, 2019, 11:33:05 pm
Yes he died after falling but there was mistakenly leaked medical records that said he had heart problems and arterial issues.  The records had a weight that puts him in three clinically obese status. The Atkins lobby defend him with as much vigour as those opposing him. His good name is worth $100 million apparently so good reason to defend that. However when the most vigorous opponents come from vegetarian lobby. Not exactly trustworthy neither imho.

Anyway, all irrelevant to me. I think I've not got the temperament to do a diet. I eat what I need to eat and nothing more. It's why I've always been within ideal BMI limits and with a waistline that is 32 to 34" . For someone my size that's good.  I've got energy for what I need energy for.

IBS is just a tag for digestive tract issues that have no obvious cause. In my case I've never found out what causes it other than pork (bacon,  sausages and salamis are ok). Every time I think I've worked out something else i then go through a period when it stops affecting me. FODMAP  is something I might get around to doing. I'd prefer to do it through medical guidance. One gp gave me the recommendation to try increasing fibre intake then if that didn't work she'd consider sending me to a nutritionist.  It didn't work and made me a lot worse. Or something made it worse that coincided with taking soluble fibre products.

Right now it's better. I only have a bloating every other week. Most nights after dinner I'm windy. A whole evening of it. It's not bloating me though so no discomfort other than knowing you're as polluting as a cow on a diet of baked beans! I'm no longer embarrassed by it when among family though.

Sorry for the crudeness.

As to low carb diets,  whether they work for you or not they're a commitment. You have to do it right to get such things to work. Does anyone actually do it strictly all the time? It's probably a very restrictive diet.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 08 November, 2019, 11:40:28 pm
Isn't this better served in the 2 other keto threads?
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 14 February, 2020, 06:29:30 am
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.
And again today, this time for the first time ever with a headache.
And today. Nothing for a year and now 3 in 4 days. The novelty is beginning to wear off.

Just had another one, from 5:30 till 6:00. About half way through it was like the coast of southern Norway, with flashing fjords.  I came to this thread to see when my last one was, and there was one a year ago to the day. A year ago it was followed by a couple more, so we'll see what happens.
Title: Re: Optical Symptoms - Migraines
Post by: Paul on 14 February, 2020, 06:45:51 am
That’s pretty weird. And interesting. Are you deducing anything?
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 14 February, 2020, 09:02:30 am
Same time of year for the last 3 years, but in my youth I had them at other times of the year - I remember one after playing football when the ground was baked hard, so it couldn't have been winter, and also when on a remote beach in Scotland, probably in August. So at the moment I'd guess it's probably coincidence, but we'll see what happens in a year's time. 
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 14 February, 2020, 09:58:33 am
And now another one.

Is a Valentine's Day Migraine a thing?
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 15 February, 2020, 12:49:52 pm
And now another one.

Is a Valentine's Day Migraine a thing?

And another this morning.
Title: Re: Optical Symptoms - Migraines
Post by: Genosse Brymbo on 15 February, 2020, 03:25:46 pm
And now another one.

Is a Valentine's Day Migraine a thing?

And another this morning.
If so, then it's the Valentine's gift which just keeps on giving.  Sorry to hear you're suffering, John.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 15 February, 2020, 05:38:38 pm
Changed any lighting in your house or place of work or places you hang out lately?  Under any unusual stress? Change of diet?

I find migraine is very unpredictable and indeed my PragmaticTM migraine nurse says there is limited rhyme or reason for them and they treat it like a black box with "some things cause migraines in some people some of the time sometimes" (drives me nuts, I want to science this stuff).
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 16 February, 2020, 02:42:35 pm
Changed any lighting in your house or place of work or places you hang out lately?  Under any unusual stress? Change of diet?

I find migraine is very unpredictable and indeed my PragmaticTM migraine nurse says there is limited rhyme or reason for them and they treat it like a black box with "some things cause migraines in some people some of the time sometimes" (drives me nuts, I want to science this stuff).

Nothing unusual at all. They just happen.

Quote from: Genosse Brymbo link=topic=43629.msg2466463#msg2466463
Sorry to hear you're suffering, John.
Genosse Dave!

I should stress that 'suffering' is overstating it. What I experience is nothing more than a mild annoyance and only lasts 30 mins or so - on a scale of 1 to 10 a solid 1. I never imagined it was anything to do with migraine, but that's what a neurologist said it was, and who am I to argue. As mrcharly wrote:
Quote
Migraine is a term covering multiple neurological conditions

BTW one more yesterday and three so far today (a record).
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 26 February, 2020, 04:25:08 pm
BTW one more yesterday and three so far today (a record).

Nothing for nearly 2 weeks now, so I expect I'll be fine until Valentine's Day 2021.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 10 August, 2020, 02:56:22 pm
I've been having 1-2 migraines a week since lockdown and trying to hear/view video stuff even with professional captioning and or BSL triggers them horribly. I also can't do my job and narrowly avoided losing it entirely (and I'm losing hours and pay).

My Feb clinic appt got bounced to August. NICE has approved a CGRP treatment (Ajovy fremanezumab-vfrm). I emailed my nurse to find out if there was progress or if I should postpone this appt (save me risking travelling etc). I get an out of office dated late March saying she's off sick following surgery with no known return date.

I then get an actual reply from the nurse who is an excellent human and unlike the hospital in general is good at replying to email. She's having chemo, the entire advanced migraine care seems to have stopped in her absence and she doesn't know when she's returning. No decision has been made on hospital giving Ajovy and even if they did agree to use it, it would involve applying to the Trust and CCG for each patient for approval.

I've been under this clinic for 3 years, at my 1st appointment I was told "CGRPs are coming soon, we think they're what you need". Even at best case we're talking 6-9 months for a new appointment and then however long applying to an NHS Trust and CCG for funding takes... So call it at least 12 months.

I am seriously considering DPAing my notes out of this useless Trust and asking my GP to refer me to another Migraine clinic (I already ask GP never to refer me into this Trust again cos they suck - I've got an outstanding ombudsman complaint with them too). In fact I'm going to email the GP now and ask their view cos I'm sick of my brain imploding and nothing being done.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 10 August, 2020, 04:18:29 pm
Oh barakta, this really sucks!
I feel really sorry for sick nurse, who must feel guilty for being sick, which is beyond her control.

I really hope you can get somebody to manage you with sense, sympathy and not too much dogma.

I'm amazed you can look at BSL at all; waving arms give me the heebie-jeebies! (I appreciate how privileged I am as a hearie...)
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 10 August, 2020, 05:30:47 pm
I feel sorry for sick nurse too, she shouldn't really be answering emails but she always did answer at weird hours which is a sign of bad workaholic habits and stress of running an entire clinic by herself. I know they managed to get more nurses, but this one does all the coordination, research links and wrangling the funding. I am so cross with the hospital for letting this happen - but suspect if I complained it would land on the wrong person which I do not want. Also this is the shit hospital I have a live case with the PHSO about cos they are terrible at accessibility AND their complaints system and humans are shoddy and shit.

Sadly there doesn't seem to be any other NHS migraine services and the treatment I'm after is super expensive and difficult to get. I suspect GP is going to say "sorry, but nothing else out there".

Lovely nurse is getting admin to postpone my appointment to 2021 and we'll see 'if' she comes back :(.

The trick with BSL is to look at the face, the hands are secondary but yes, even for people with better vision than mine, following BSL all day is tiring and that's well discussed in deaf circles. I quite like BSL for realtime speech and love it for poetry and music cos it's more synchronous than captions but obviously I have to stay focused constantly and I do struggle. Captions can be more lagged and these days I get visual stress from the lines of text so even large fonts can be hard to read.
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 11 August, 2020, 12:13:58 pm
Sounds not dissimilar to my experience at KCH. Once I emailed the research fellow who'd been treating me only to discover a couple of months later that he'd left and not put an out of office on or forwarded his emails, so my emails had been disappearing into the ether. I wait a very long time for appointments. I'm having more success with the latest research fellow who eventually answers emails and has taken pity on me and has been giving me greater occipital nerve blocks every few months, or at least he was before COVID hit. I was on flunarizine for a while but had to come off it as it was giving me symptoms of anxiety and depression (and it took weeks for that to lift even after stopping it).

I'm under the care of Prof Peter Goadsby's team; he led the team that developed one of the injectables and gave the formula to pharma companies for free to develop. So I've never bothered trying to go elsewhere as I reckon all NHS teams will be similarly pressured and he seems to know what he's talking about.

They've never seemed keen on giving me any of the newest injectable treatments. I came very close last year but then the month I was due to get it I had a spectacularly good month where I only had four migraines, and when they heard that they pulled back. I struggled to hold back the tears when that happened. They seem keen to follow NICE guidelines of them being for chronic sufferers only, and as my worst month was 13 migraine days, I'm 2 days short, officially. I know they see people from all over the country so I probably seem ok in comparison to some of the very worst cases.

Currently hovering around 6-8 migraines a month, definitely linked to my cycle. Fewer than normal probably because I don't have to sit in a noisy office with flouro lighting while COVID wfh is happening. Prof Goadsby has me taking naproxen preemptively for around a week a month to help avoid menstrual migraines, but when your cycle isn't exactly regular this is easier said than done.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 12 August, 2020, 01:39:54 pm
I've only ever seen the specialist nurse, there is apparently a neurologist involved but... I was referred directly by neuro-ophthalmology who are the only ones not scared of my weird eyes (rare eye movement disorder).  I'm a bit sceptical about it all to be honest cos it does seem to be completely "stab around in the dark" mentality.

I have almost constant migrainous sumptoms so I hit chronic and I am lucky they're not acute with pain etc, but they're hard to manage cos I have zero tolerance to bad lighting (most offices), the photophobia is a pain and I've lost jobs over it. I'd like to talk to a neuro about why they think my brain did this cos *shrug* isn't a good enough answer for me.

I'll talk to pain management and see if they can nerve block the shoulders on the grounds I think that's one migraine trigger they could nuke for me along with everything else and I'd do better off the celecoxib meds in general (they could be worsening my migraine) as they're bad for kidneys/heart etc.

There's a lot of scams out there with migraines in the private sector, cos people are so desperate. It seems to be a really poorly understood area of medicine.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 08 September, 2020, 12:32:29 am
So, it has unfortunately also become increasingly clear that one of my triggers is chocolate.
Being on a (mostly) low carb diet, dark chocolate (85%+)was one of the few treats I could have without blowing my carb budget but I had sorta noticed that it always got worse when I had chocolate in the house.
 This week, I found some keto-friendly snacks, with chocolate, of course and a week of migraines have accompanied it.
I know I *can* tolerate it in moderate amount, but clearly not daily.
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 15 October, 2020, 02:26:38 pm
https://www.migrainetrust.org/nice-gives-chronic-and-episodic-migraine-patients-access-to-ground-breaking-new-drug/

Exciting times for me, if I can just get hold of my neurologist and get him to let me have this new drug.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 15 October, 2020, 08:53:57 pm
There was another CGRP approved drug back in June or so https://www.medicines.org.uk/emc/product/10386/smpc#gref

But when I emailed my migraine nurse she said there had been no hospital decision on prescribing it and they would probably have to apply for Trust and CCG funding approval. Not helped by lead nurse being off long term sick (answering emails :( ) and so no decision made till her return; IF she returns at all...

Let us know how you get on, cos if your hospital does it, I may well kick mine.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 17 October, 2020, 12:50:51 am
I was on Aimovig for a while and while initial results were promising, mine returned to full strength/frequency after a few months.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 17 October, 2020, 02:40:20 pm
Sorry to hear that Jakob, I wonder how many people will find the new CGRPs aren't quite the AMAZE they've been sold as...  Have they suggested trying a different CGRP for you as there's now at least 2 in England so I presume similarly for Scotland.

I'm considering requesting a change of migraine clinic as mine is at a shitty awful hospital and it's 3.5yrs and no actual progress except "CGRPs are coming" and now they've been approved x2 in England now, the nurse is off sick and no decision has been made on funding other than "probably have to get trust and CCG funding".
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 21 October, 2020, 02:27:43 pm
There was another CGRP approved drug back in June or so https://www.medicines.org.uk/emc/product/10386/smpc#gref

But when I emailed my migraine nurse she said there had been no hospital decision on prescribing it and they would probably have to apply for Trust and CCG funding approval. Not helped by lead nurse being off long term sick (answering emails :( ) and so no decision made till her return; IF she returns at all...

Let us know how you get on, cos if your hospital does it, I may well kick mine.

Interesting; when I had my telephone appointment in September they implied I wasn't eligible for any of the new drugs unless I went private. When I asked how much that would cost they hemmed and hawwed and said they would look at getting me put into a clinical trial. A month later (after chasing) the clinical trials manager emailed me with a load of questions (questions which could very easily be answered by getting permission to look at my medical records, but why do that when they can get me to spend half an hour writing them in an email).

Thus far my email asking about the new drugs has been ignored which is standard.

Your situation sounds pretty crap if it's reliant on one person making the decisions.

I attended an online seminar the other where the Prof who's care I'm under spoke. He said that migraines tend to go in cycles anyway (ie you have good months and bad months, even good years and bad years) and that's why sometimes it looks like a drug is working when you first start it and then stops working - it was never working in the first place, you were just at the start of a good cycle.

Title: Re: Optical Symptoms - Migraines
Post by: barakta on 22 October, 2020, 12:41:48 am
My migraine clinic is odd, run almost entirely by a nurse practitioner, Julie, whose competence I can't really assess, she's an overworker, hence emails at weekends or when she should be off long term sick! There is a neurologist but no one seems to see her.

Julie thinks much of my balance stuff is migrainous which may be true, who knows - who cares? My logic is that much of my sensory input is completely distorted or whacky, so my poor old brain gets a bit splodey at times.

The problem is with Julie off long term sick, no one is there to DRIVE through hospital processes to get new treatments approved/considered. There's a chance Julie may not return and then 'fuck knows' what will happen.

I've only been waiting for these CGRP meds since May 2017! 3.5 years.

Fortunately dropping one of my other meds seems to have reduced my migraine trigger sensitivity by a huge amount and I've realised it was also bolloxing my balance so I ditched it and am taking amitriptyline for 4-5 weeks for a "brain reboot" of sorts which I've done several times before...

I am torn between waiting for this hospital and talking to my GP about seeing if there's another migraine service in the area that is worth talking to. The current hospital is shit, they flat out refuse to comply with the law on disability accessibility so I have taken them to the Parliamentary and Health Services Ombudsman (PHSO) cos they were so utterly awful and shit.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 22 October, 2020, 07:21:39 am
Well, going back on a stricter keto diet has seemingly mostly fixed it again.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 22 October, 2020, 12:24:00 pm
I guess that's useful if restrictive!

I didn't stay on keto long enough to tell. In some ways I could go back to that and see over the next several weeks maybe.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 02 November, 2020, 12:48:15 pm
At the other end of the migraine scale, nothing since February then last week a half hour of the usual visual disturbance - no nausea, headache or anything remotely debilitating. It was a neurologist who told me it was form of migraine, and coincidentally I had been reminded of the consultation when the hospital where it took place (the Cambridge Hospital in Aldershot, now closed and derelict) appeared on Who Do You Think You Are? as an example of a WW1 miltary hospital.

(https://live.staticflickr.com/65535/50558002378_dee96f904b.jpg) (https://flic.kr/p/2k2CYGb)
Title: Re: Optical Symptoms - Migraines
Post by: Ginger Cat on 22 November, 2020, 07:04:55 pm
Just a quick reminder to always pay attention to the lights and whether they are "normal."

I very occasionally get optical migraines- usually when tired, stressed, in the wrong part of my cycle and coming down with something.

A month or so ago I had some lights, initially thought it was an optical migraine but didn't develop like usual. So I got meself off to the opticians- I am very shortsighted so at risk of retinal detachment.

It transpired that the symptoms were of a "posterior vitreous detachment" (which has same early symptoms as retinal detachment) and my retina was fine- TBH, I suspected that as after a couple of days the flashing lights in the corner of my vision stopped and a large new floater appeared. I really HATE having a dilated-pupil eye exam though (due to bad memories from childhood). That said, following the PVD, I remain at (even) higher risk for retinal detachment for 3 months or so afterwards.

Being extremely short-sighted, I have a regular optician and they had previously made sure I understood the early symptoms of retinal detachment and the need for a fast response.

BUT- if you didnt know the difference you might wait too long before seeing an optician.The early stage visuals are not massively dissimilar albeit migraine is in both eyes and the PVD appeared in one eye (not always easy to be sure if one or both eyes involved though).   

GC
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 25 November, 2020, 10:11:08 am
There's a podcast called 'Heads up' about migraines and yesterday they spoke about the 'Boom and Bust' cycle and concept of pacing which I guess is very similar to the Spoons analogy.

I definitely recognised myself in that when I have good days I try and do All The Things to 'make up' for all I missed on the bad days (whether that is work, housework, exercise or whatever). I really do struggle psychologically with just how useless I am on a bad day - even with meds, the postdrome pretty much wipes the rest of the day out for me if not the next day too and I find it infuriating even after all these years.

In other news the clinical trials manager contacted me to say there might be a trial I'm eligible for but it's all stopped because Covid, and to ask him again in January.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 01 December, 2020, 07:51:37 am
Just some more confirmation that it's a combination of carbs and chocolate that will set of my migraines.
5 day road trip, where low carb is near impossible, followed by a 'how much chocolate can I actually tolerate' experiment (answer: not a lot), had them back near daily. Low carb (and no chocolate) has chased them away again.
I have also gained weight again, so as good as time as any to get strict on the keto (again).
Title: Re: Optical Symptoms - Migraines
Post by: matthew on 02 February, 2021, 02:54:13 pm
Dam, after a significant period without one of these, I currently have a scintillating arc running anticlockwise from 2 o'clock to 5 o'clock in my left eye. No other symptoms except that I was struggling with blind spots when viewing my laptop screen.

Might by an interesting drive home from work later.
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 02 February, 2021, 04:20:53 pm
My sister is currently in hospital after a migraine, which may or may not be incidental to her condition.

She's coming up to 74 and has had migraines all her life. She and I have been the only regular sufferers from our siblings, 6 of us in all. Mine used to be really bad: visual disturbance, headache, vomiting, sleep, then a gradual recovery over 2 or 3 days. Hers were generally worse than mine, involving disorientation and slurred speech. Both of us have experienced a lessening of symptoms over a long period.

Last week she had a bad one. It started in the early evening, and she went to bed. A couple of hours later her partner checked on her and she was completely incoherent. This worried him, he dialled 111 and the person he spoke to decided she was sufficiently bad to warrant an ambulance. They took her into hospital (Addenbrookes) and conducted tests: they thought she may have had a stroke or a bleed on the brain. The tests, which included a lumbar puncture, showed no stroke or brain bleed, so they sent her home. That was on Thursday.

On Friday they phoned her and said "Come straight back into hospital!" It seems that the lumbar puncture had detected a herpes infection in her spinal fluid and the doctors were worried by the risk of meningitis. Apparently it wasn't the usual chicken pox/shingles version of the herpes virus but I know no more than that. She is now in for a fortnight where she is being treated twice daily with intravenous anti-virals. She has had an MRI scan and that has detected "broken blood vessels" in her brain, but she was no more specific than that. She's pretty bored as she feels fine but can't go anywhere because the hospital has been divided into Covid and non-Covid areas. Her ward is on the ground floor, which is a bit of a pain because if you are in a tower block just looking out the window is very entertaining, especially if you can watch over a fine city like Cambridge, or watch the traffic jams building up on the M11/A14.

Her case has proved sufficiently interesting that she has had some research types coming to see her.

I had a natter with her yesterday and she seemed to cheer up after a call from her baby brother.

Edit: apparently the broken blood vessels could be down to high blood pressure, high cholesterol or old age. She told me she's never been diagnosed with high BP, had never had a cholesterol test and didn't feel old. We agreed that it was weird, being the same age as old people.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 02 February, 2021, 08:08:22 pm
I'm sorry to hear of migraine experiences upthread!

I've started gabapentin for pain management and it's giving me migraines on dose change for about 2 days. I'm doing tiny doses and tiny changes over several days per dose to see if we can avoid pissing off my special snowflake brain on side effects which I get from EVERYthing pain management related. It is like topiramate lite for those days tho, especially long work days staring at Stupid Fucking Windows 10 which is too fucking bright, has bad fonts and windows without a proper edge so I can't see stuff properly.
Title: Re: Optical Symptoms - Migraines
Post by: matthew on 02 February, 2021, 08:36:02 pm
I am very fortunate that I get visual symptoms only with a mild follow on headache. It is hard to concentrate during the event but seems to be mild and short lived.
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 02 February, 2021, 09:44:46 pm
I'm like mathew, with even less headache.
I've had nothing for ages, touch wood!
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 06 February, 2021, 06:37:42 pm
Just had a natter with my sister, who still feels perfectly OK and was pretty cheerful. She's over a week into her anti-viral treatment now so hopes the next lumbar puncture will show that the infection has gone.

She has been suffering from PNS, which stands for Patronising Nurse Syndrome. It seems that when you get past a certain age (and I don't know what that is, but I have a strong suspicion that it's younger for women than it is for men) that some medical staff have a bedside manner in which they treat you like an imbecile. In this case, the Patronising Nurse came to see her, knelt beside the chair she was sitting in and held her hand and told her that she had some really bad news. My sister's heart sank as she thought they had found something terminal. But the "really bad news" this nurse was imparting was that my sister had to stay in hospital for a fortnight for the treatment and another round of tests.

My nephew's wife, also a nurse, used to treat Phyllis in exactly the same way. Phyllis was very polite and never told her to fuck right off with her patronising attitude, but she really didn't like it. And she was about 25 years older than my sister is now.

In my book, on a scale of 1 to 10 of "really bad news", having to stay in hospital for a fortnight when you don't actually feel ill is probably somewhere between 1 and 2.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 09 February, 2021, 10:14:42 pm
If 2021 is like 2020 2019 and 2018 (https://yacf.co.uk/forum/index.php?topic=43629.msg2466024#msg2466024) I can expect a 'scintillating arc' (© matthew) or two in the next few days.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 09 February, 2021, 11:39:51 pm
Gabapentin is on the migraine inducing naughty step with celecoxib, paracetamol, topiramate and zonisamide. I was off sick yesterday which if it wasn't "a disability sickness" could have caused me issues with newjob as I'm still on probation. Boss was very pleased I'd explicitly stated "is a disability wot I disclosed" on my self cert cos he can apparently tell HR to nob off if they get annoyed. Cos apparently normal humans aren't allowed to get sick for 6 months when starting a new job.

Have a nasty feeling pregabalin will do the same. Migraine nurse is unusually for her not answering emails (last I heard she was having chemo for cancer so :( ).

I have GP appt on Friday with excellent GP. But I can't risk pregabalin causing more sick leave till May. Fucking brain and its special snowflakery.
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 10 February, 2021, 10:14:58 am
Managed precisely one (1) telephone appointment with a specialist last year in which they said that they could either recommend me for a medical trial for one of the new drugs or try melatonin as a preventive. Clinical trials have apparently been paused due to high covid cases. Really I am not sure why I am being pushed towards clinical trials when NICE have just approved the new drugs for NHS use for my circs anyway.

They wrote to my GP stating that I should be prescribed melatonin. Nothing happened obvs so I got a telephone appointment which requires some tenacity.

GP said he's not allowed to prescribe melatonin off-licence and said I was to tell the specialist that. Asked why I wasn't doing the clinical trials. Pointed out small matter of Covid.

Emailed the headache clinic cc'ing in the most helpful specialist I've ever had (even though he's not the last one I spoke to, he's the one who made the mistake of giving me his email). Got an auto response saying they were very busy due to Covid redeployment and to contact my GP if the matter was urgent. Laughed tears of hysterical laughter.

Eventually the nice helpful specialist emailed me back asking for my phone number so that the hospital pharmacy could arrange delivery of some melatonin but warned this will take a few weeks.

Migraine days teetering dangerously close to chronic in the mean time (15 days a month or more, last 3 months have been 10-13 days).  Looking at the app where I record these things it seems it was similar last year. May always seems to be a good month though.
Title: Re: Optical Symptoms - Migraines
Post by: Peter on 10 February, 2021, 10:51:09 am
That sounds dire.  It's bad enough trying to get help when you are "well" but trying to do it while suffering from migraine.........!

Can only wish you all the best.

Peter
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 10 February, 2021, 12:57:13 pm
That sounds utterly pants to bounce to GP when GP can't do the thing (altho I'd be just as wary of GPs bullshitting as anything else as I've had off licence stuff). It may be GP isn't happy to, but that's not the same as "can't".

And yes, one of the downsides of Covid has been the suspension or possibly wrecking of many clinical trials.

I dunno why everyone is ignoring the NICE approved CGRPs. When I get hold of my lot again I'm going to push very hard on those.

I hope you get some melotonin and it helps at all soonest.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 14 February, 2021, 10:53:38 pm
Melatonin is available over the counter here...is that a prescription drug in the UK?
I've used it as a sleep aid...didn't realize it could potentially help with migraines:
https://www.healthline.com/health/migraine/melatonin-and-migraines#Other-Remedies-to-Treat-Migraines

I might cut the tables in half (5mg) and try. The full dose does leave me groggy in the morning, though.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 15 February, 2021, 12:32:51 am
Yeah, they're very cautious about melotonin here in the UK. I know people who buy it online for self-treating various things. Doctors seem very reluctant to prescribe it, although I know some autistic children with dysfunctional sleep who've got psych advice to prescribe and GPs will agree and find it helps.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 15 February, 2021, 07:02:16 am
Melatonin was prescribed to my teenage stepson, for ME/CFS.

I think that GP is talking out of their arse.
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 15 February, 2021, 10:05:27 am
Melatonin is available over the counter here...is that a prescription drug in the UK?
I've used it as a sleep aid...didn't realize it could potentially help with migraines:
https://www.healthline.com/health/migraine/melatonin-and-migraines#Other-Remedies-to-Treat-Migraines

I might cut the tables in half (5mg) and try. The full dose does leave me groggy in the morning, though.

I've been told to try 2mg a night, if I ever actually get any prescribed.

I've ordered it online from the states before, when the dog started to get dog-dementia which first manifested in getting up at night and becoming anxious. A low dose of melatonin gave her more peaceful nights for quite some time.

But I wanted to show that I was being a good patient and getting it through the proper channels  :demon: To be honest I'm not convinced it will do much but you have to show willing to work your way through everything.
Title: Re: Optical Symptoms - Migraines
Post by: Wowbagger on 15 February, 2021, 08:07:19 pm
My sister was discharged form hospital last Thursday but the suggestion was that she still has the herpes infection. It's possible it has been lying dormant for many years.
Title: Re: Optical Symptoms - Migraines
Post by: Notsototalnewbie on 02 March, 2021, 10:04:23 am
I received a large parcel from the hospital pharmacy. It contains six months supply of Melatonin, suggesting this is the length of time they'd like me to go away for.

The instructions also say to take 6mg a night and not 2mg as in the letter. I expect the new dose has come from the decent specialist who actually responded to my email and got onto the hospital pharmacy so I'm inclined to believe it.

It gives you really realistic, crazy dreams. It seems to be dragging memories up from my subconscious; I'm dreaming about people I haven't seen in years.
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 14 February, 2022, 10:06:51 am
If 2021 is like 2020 2019 and 2018 (https://yacf.co.uk/forum/index.php?topic=43629.msg2466024#msg2466024) I can expect a 'scintillating arc' (© matthew) or two in the next few days.

February 2021 was a migraine no-show, and this year I'd forgotten what time of year it was until Thursday when a scintillating patch slowly emerged from nowhere when I was in the fresh fruit aisle of Mr Sainsbury’s House of Toothy Comestibles, and spread out into the usual arc. As usual it was nothing more than a mild inconvenience, and was over by the time I had walked halfway home. But the mystery remains as to why it's always this time of year, to within 3 or 4 days.
Title: Re: Optical Symptoms - Migraines
Post by: rafletcher on 23 May, 2022, 10:38:25 am
I'd never had a migraine of amy sort until I was 62, about 3 years ago. Then I had around 1 optical migraine lasting maybe 10-15 minutes, no headache at all, once a year.  And then last week, I had 3 in 2 days, 2 in one evening, one the folowing morning. And then nothing.  I did google causes, which ranged from high blood pressure to bending down.  <shrugs>
Title: Re: Optical Symptoms - Migraines
Post by: MikeFromLFE on 23 May, 2022, 03:32:50 pm
I've posted somewhere on YACF about my recent experience of optical migraine.
I've not had anything for years, then all of a sudden two episodes.
I /think/ they might be connected to low level stress. Not enough for me to be 'stressed', but as a warning to chill.
We're all wired differently
Title: Re: Optical Symptoms - Migraines
Post by: Salvatore on 21 June, 2022, 10:10:37 am
Last week:

- Early hours of Wednesday. Normal Scintillating scotoma, over in 20-30 minutes, or when I fell back asleep.

- Breakfast time Wednesday. Normal Scintillating scotoma 20-30 minutes but left me with a slight headache . Not normally enough for me to reach for the medicine cabinet but as I was about to walk to the station and spend a few hours on a train I took a couple of paracetemol.

- Thursday mid morning, out for a walk with nuncio (up Mynydd Drummau, if you're interested). I was able to give him a running commentary. No headache, but for the first time as far as I can remember, there was also a tiny black spot just to the right of whatever I was looking at, as if a fly was buzzing along a few yards ahead of me. 20-30 minutes as per. The black spot reappeared for a short time some time in the afternoon, but without the scintillations.

Nothing since.



Title: Re: Optical Symptoms - Migraines
Post by: Nuncio on 21 June, 2022, 02:39:27 pm
Thursday mid morning, out for a walk with nuncio (up Mynydd Drummau, if you're interested). I was able to give him a running commentary.
A one-sided scintillating conversation.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 18 December, 2023, 01:58:32 pm
I've had a day and a half of difficulty spelling, typing and anything proprioception related (crashing into walls, tripping on things, falling into walls). I also couldn't read lines of text reliably and was mixing up lines all over the place (helpful when I was trying to help Kim proofread/sanity check BHPC hardware/software documentation).

Upon waking up this morning I had horrid even for me vertigo. I mentioned to friends in an online charity meeting at 10am that my brain is mash and I thought I had a headacheless-migraine.

I took a hefty dose of ibuprofen at 11am as I was all sinusy...

I have had an hour off work at 1pm (unusual to properly break cos term is hectic AF) to eat a proper lunch, soup and cheese on toast.

The face/head pain has just kicked in at 13:45ish.

Fuckety.

So it was clearly pre-drome but I have nothing I can medicate this much predome with given zolmitripan (only thing that does work) doesn't work on non-light triggered migraines and gives me horrendous nausea and vertigo.

Half tempted to bail from work to see if sleeping this off helps.

Also need to kick the hospital PALS again. 2.5 years waiting for migraine clinic appointment, I was chasing, PALS didn't respond to email (Oh Hai AIS and Equality Act you fucks) so I started flashing fangs.

The stupid hospital then admitted:
1) they had not recorded my AIS deafness needs (they run my audiology since 2011!) but promise it is done now
2) they THEN phoned me with a phone (not done then)
3) they sent me a fucking phone appointment with migraine clinic
4) then cancelled the clinic appointment but letters were confusing/messed up.

Replacement f2f appointment is 2 months later. Not fucking acceptable. Need to tell them to sort that or I'm going to LBA them cos the only way to make hospitals do access is sue them.

IF this neurologist tells me "be less stressed" I may well set fire to them.
Title: Re: Optical Symptoms - Migraines
Post by: HTFB on 18 December, 2023, 02:16:07 pm
You're not going to do anything useful if you can't read / speak coherently. And there's nothing to do but wait till it goes away.


This is a go home pass.

Go home.


It's what I do. Largely because when I don't, even if I could plough on with the task in hand, there's a high risk of someone coming to me with an urgent ad-hoc or a request for information and it's embarrassing just to burble random words at people. (In this way YACF differs from real life.)

At least with a headache you can diagnose yourself. Fritzing brain without headache can be hard to spot in time to be useful.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 19 December, 2023, 11:15:13 am
I bailed from work after sending a chaser to the hospital. Work easily owe me the time at the moment so...

See how today goes as I have student appointments and shit to catch up with. My job involves lots of working memory and executive function so if I am too unwell I'll make dangerous data protection errors so I will be careful.

Title: Re: Optical Symptoms - Migraines
Post by: barakta on 25 February, 2024, 11:36:11 pm
Migraine clinic appointment tomorrow, the one I've waited nearly 3 years to see (after being fucked about by the other one for 4 years).

Kim has printed my notes and last CrapMigraineClinic letter for them.

My expectations are extremely low, less disappointment that way.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 February, 2024, 02:44:05 pm
Appointment went better than expected:

I saw the consultant migraine neurologist himself. He was happy to read my 4 pages of med history and notes - easier than me remembering it all cos too much. It cut the questions down a bit.

Doc says I definitely have migraine (I was told I didn't as a teen and haven't had doctor confirmation since, only 'suspicion' and a nurse-led clinic which was clearly limited). We agree lighting is (and even pre worsening in 2015, was always) my biggest trigger. Nothing treats my attacks or chronic symptoms effectively.

I meet the tickbox requirements for CGRP monoclonal antibody treatments (https://migrainetrust.org/live-with-migraine/healthcare/treatments/calcitonin-gene-related-peptide-monoclonal-antibodies/) (which is what I was told I'd probably need in 2017).

As I've been "floating around" (aka doc is admitting my referral got lost somewhere in the system and I've been waiting since 2017) so he'll expedite that referral - probably ~8 weeks. CGRPs apparently don't have many side effects and officially 50% chance of 50% improvement, but anecdotally seeing 70-80% improvement (don't know if that was people or frequency).

Bonus points to the Doctor, he hadn't just heard of Emeritus Professor Arnold Wilkins and his work on precision tinted lenses and intuitive colourimetry, he knows Wilkins personally. I had given my spiel of "I know the science is very *handwave* but lenses are the only useful thing I have" cos many docs don't even know of it or think it's like the other less evidence based coloured lenses stuff.

It feels like this clinic/doc is trying to slay through a HUGE backlog as quickly and effectively as possible. I happen to know my ENTIRE old clinic was transferred to this one in 2021ish cos the old clinic closed down and I see students with 5/10/15 year histories and letters about migraine stuck with no effective treatment. The old clinic had a huge backlog of people 'awaiting' CGRPs but not able to get them cos that Trust couldn't organise themselves to sort it (I won't accept referrals to that trust at all now).
Title: Re: Optical Symptoms - Migraines
Post by: hellymedic on 28 February, 2024, 02:52:15 pm
PROGRESS!

So pleased you’ve not wasted your time today!

Good Luck!
Title: Re: Optical Symptoms - Migraines
Post by: andrewc on 28 February, 2024, 02:53:39 pm
Sounds promising. I hope they sort the new treatment out for you asap and that it gives you the relief you need.
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on 28 February, 2024, 03:34:34 pm
Fascinating.

I wonder if they work for all types of migraine.
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 28 February, 2024, 03:45:47 pm
I don't know, the criteria for access include 3-4 other treatment protocols failing and at least 15 days a month on average of migraine symptoms (I think I hit this largely cos I have fairly constant low level migrainosity). I am aware from previous discussions at my last clinic that symptoms of migraine are a spectrum, what they called the "fortification spectrum" so the scintillating scotoma are a fairly far-in symptom and not every migraine progresses that far for everyone (certainly the case for me, if I'm seeing aura of any kind that's a significant migraine for me, caused by longer exposure to triggers).

The doc explained to me that when someone has a migraine, if you took a blood sample from the jugular vein, there would be a high level of the CGRP molecule in it which is what seems to correlate/cause symptoms. This treatment aims to block the effect of the molecule in the body ?brain and therefore stop/reduce the symptoms. And possible cos migraines seem to be cumulative in trigger/escalation, if you can break the cycle, the brain becomes less hypersensitive.
Title: Re: Optical Symptoms - Migraines
Post by: Flite on 28 February, 2024, 04:13:06 pm
So pleased you have managed to see a consultant who listened to you, and will hopefully provide effective treatment
Title: Re: Optical Symptoms - Migraines
Post by: barakta on 29 February, 2024, 08:30:14 pm
The consultant I saw did this video with the Migraine Trust  (https://www.youtube.com/watch?v=bbqigdoeCGQ)in 2021.

I wish I'd been with it enough to look him up and find this before my appointment as I could have said I'd seen his video and given better notes. On the other hand, I didn't come across as trying to game anything, just my usual info overload :D...

Interesting outline of treatment options, dos/don'ts, the new CGRPs and botox stuff.
Title: Re: Optical Symptoms - Migraines
Post by: Jakob on 13 March, 2024, 10:03:16 pm
Fascinating.

I wonder if they work for all types of migraine.

They did initially for me, but stopped doing anything after about 4-5 months? Wonder how much of it was placebo effects.

Mine is now mostly controlled by a low carb diet.