Author Topic: Optical Symptoms - Migraines  (Read 8552 times)

CrinklyLion

  • The one with devious, cake-pushing ways....
Re: Optical Symptoms - Migraines
« Reply #50 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.

Adam

  • It'll soon be summer
    • Charity ride Durness to Dover 18-25th June 2011
Re: Optical Symptoms - Migraines
« Reply #51 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)
“Life is like riding a bicycle. To keep your balance you must keep moving.” -Albert Einstein

SoreTween

  • Most of me survived the Pennine Bridleway.
Re: Optical Symptoms - Migraines
« Reply #52 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.
2018 targets: Survive
There is only one infinite resource in this universe; human stupidity.

MikeFromLFE

  • Previously known as Millimole
Re: Optical Symptoms - Migraines
« Reply #53 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.

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Too many angry people - breathe & relax.

ian

  • fatuously disingenuous
    • The Suburban Survival Guide
Re: Optical Symptoms - Migraines
« Reply #54 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.
!nataS pihsroW

Re: Optical Symptoms - Migraines
« Reply #55 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.

arabella

  • no se porque yo no lo se
Re: Optical Symptoms - Migraines
« Reply #56 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
In the dark, all views are the same.

Re: Optical Symptoms - Migraines
« Reply #57 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.

Re: Optical Symptoms - Migraines
« Reply #58 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.

Kim

  • 2nd in the world
Re: Optical Symptoms - Migraines
« Reply #59 on: February 02, 2018, 12:40:52 am »
Good luck  :-\
To ride the Windcheetah, first, you must embrace the cantilever...

Re: Optical Symptoms - Migraines
« Reply #60 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.
<i>Marmite slave</i>

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #61 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.

Re: Optical Symptoms - Migraines
« Reply #62 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

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #63 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.


barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #64 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.

Re: Optical Symptoms - Migraines
« Reply #65 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.).

Re: Optical Symptoms - Migraines
« Reply #66 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.
<i>Marmite slave</i>

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #67 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.

Re: Optical Symptoms - Migraines
« Reply #68 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.

Re: Optical Symptoms - Migraines
« Reply #69 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.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #70 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.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #71 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!

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #72 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. 

hellymedic

  • Just do it!
Re: Optical Symptoms - Migraines
« Reply #73 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  :(

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #74 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.