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

Title: Optical Symptoms - Migraines
Post by: Peter on February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 04, 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 February 05, 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 February 05, 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 February 05, 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 February 05, 2011, 10:34:41 pm
Michael Fish Hurricane,,,,,,,,,,,,,,, Do people realise the import of that?
Title: Re: Optical Symptoms - Migraines
Post by: redshift on February 05, 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 February 06, 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 February 06, 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 February 06, 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 February 06, 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 February 07, 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 August 12, 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 August 12, 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 August 12, 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 August 12, 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 August 12, 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 August 12, 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 August 13, 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: 'breff on August 15, 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 August 16, 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 August 26, 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 August 26, 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 August 27, 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 August 27, 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 September 03, 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: 'breff on September 04, 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 September 04, 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 September 04, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 24, 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 January 25, 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 January 25, 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 January 25, 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 January 26, 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 January 27, 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 January 28, 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 January 29, 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 January 29, 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 January 30, 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 January 30, 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 February 01, 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 February 02, 2018, 12:40:52 am
Good luck  :-\
Title: Re: Optical Symptoms - Migraines
Post by: mrcharly-YHT on February 02, 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 February 03, 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 February 28, 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 February 28, 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 February 28, 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 February 28, 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 February 28, 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 February 28, 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 February 28, 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 April 01, 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 April 02, 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 April 02, 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 April 09, 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 April 09, 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 April 09, 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 May 01, 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 May 01, 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 May 01, 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 May 03, 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 May 04, 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 May 09, 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 May 21, 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 May 21, 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 May 21, 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 May 22, 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 May 22, 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 May 26, 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 May 27, 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 May 28, 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 May 28, 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 December 05, 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 December 07, 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 December 08, 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 December 09, 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 December 28, 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 December 28, 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 January 03, 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 January 03, 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 January 03, 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 January 12, 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 January 24, 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 February 14, 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 February 14, 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 February 15, 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 February 15, 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 February 17, 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 February 17, 2019, 05:13:46 pm
GWS Salvatore!
Title: Re: Optical Symptoms - Migraines
Post by: barakta on March 06, 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 March 06, 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 March 06, 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 March 06, 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 March 07, 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 March 07, 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 March 07, 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 March 07, 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 March 23, 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.