Diagnosis migraine

[barakta]

I have YetAnotherDiagnosis 

Migraine.

Doc also thinks I've had migraine all my life but cos after my first (hemiplegic) migraine tweenage me listened to my body recognised re-occurence of symptoms in flickering lights so avoided them like the PLAGUE and generally didn't spend a lot of time in overly bright spaces which were uncomfortable...

Doc also wonders if some of my balance disorder symptoms are migrainous. If we're going down that path then maybe the headaches and facepain I've attributed to ENT issues and 'fatigue from auditory processing' are also partly or wholly migrainous... What IS a headache anyway, so much of this is just in the noise of my normal experience.

Current migraine status: oversensitised - probably due to prolonged exposure to overly bright and bad lighting at exwork where funnily enough I wasn't allowed to listen to my body!

Sensitivity caused by overexposure to triggers also explains why despite VeryTrippyVisualVestibularIssuesTM I can now perceive flicker and have issues with brightness that I didn't have before.

Doc not sure if they will be able to get me back to pre-oversensitised state. 

Visual artefacts in my vision under flickering lights is a form of palinopsia - that may also not go away cos it's like floaters, psycho-perceptive, once you know they're there its hard to unsee them. At the moment they're a useful warning of unsafe to me lighting!

Referral for precautionary (Doc took time to say she's REALLY not worried) MRI and headache clinic for advice on 'headache/migraine' and followup in 3 months. In the meantime "avoid triggers"  (which are EVERYWHERE outside my house).

If bluspex (prescription colour Cerium lenses in my optical prescription) help then use them. I will probably try a prolonged period of time using them all the time to see what that does.

[mrcharly-YHT]

I've seen your news on this elsewhere.

'migraines' seem to be complex things. Not always associated with pain, for starters. Definitely can be cause of very odd perceptual disturbances (speaking from personal experience).

I had them when I was a teen, they had gone completely. The return (with a vengeance) was triggered by being spun round rapidly whilst flashing light were shone at me (a fairground ride). This didn't seem to surprise the neurologist.

Overly bright lighting is definitely a Bad Thing and I can confirm that the blue-filter spex are bloody brilliant.

[rr]

Mini has a migraine every time she goes into Chelmsford cathedral, we think due to the lighting in there.

Sent from my XT1562 using Tapatalk

[TPMB12]

Maybe that's why I hate going into churches. Or perhaps there's another reason not involving migraines.

Our school had a new wing built midway through my years there. As well as being well lit with big windows letting plenty of light in, they put in the new fangled whiteboards. Bright light, sunlight reflecting off car mirrors then reflecting off the whiteboard resulted in my very first set of migraines. I had it on and off but mostly whenever I got taught in the new wing. Fortunately after GCSEs not very often. BTW that was a long time ago. Whiteboards were new but they mostly used blackboards that turned on a loop. So you had to take notes quickly or the bit you're looking at disappeared behind the board.

For me early spring is worst. The time when you're first starting to get sunny days but the sun is still low in the sky. This means you end up driving or cycling into a low sun or worse away from it so you get sudden reflection in a mirror.

For me the worst bit is the aura. You know the feeling that sends a shudder through your body. It's like illness personified. A kind of sensitivity that's hard to describe or fix to any one thing. Light, sound, touch sensitivity plus a weird nausea that's not nausea. For me it signifies the beginning, middle and after the migraine for a few days. I can even get it several days before one hits. It's why I can so readily believe that a migraine starts several days before your headache, nausea, visual distortions, etc start.

[barakta]

TPMB12: The whiteboards issue is well known and understood, Arnold Wilkins has been writing on that for years. Occ Health slagged off evil-office for having whiteboards which were in a position to get sunlight reflected on them. The blinds are blackout ones rather than a mesh so they make rooms too dark and horrible to use - some of the rooms already feel unpleasant.

As far as I know sunlight in and of itself is not a significant trigger for me but flickering light through trees absolutely is. Evil-office main workspace had a massive South facing window with no blind for over 8 weeks "cos the architect didn't want one" so I did have sunlight blinding me a lot of the time as it was August - October so about when the sun was low in the horizon!   so maybe it has 'become' more of a trigger but I haven't noticed non flickering sunlight as a problem since - I can still tolerate that brightness unless very tired and sensitised.

The symptoms I gave to the doc of my eye/visual/cognitive symptoms was:
0-60 minutes
Immediate discomfort or pain in my eyes
Sensation of pressure mostly in left eye and forehead (develops rapidly)
Difficulty focussing – screen contents appearing blurred
Dizziness/lightheadedness
Headaches
Panic/anxiety (I don’t have these normally)
Deterioration of balance and proprioception
Difficulty speaking coherently

Frequent or 1hr+ exposure
Dry itchy eyes
Twitching in eyelid, especially left
Difficulty thinking clearly and inability to do complex work because brain wouldn’t work
Affected recall (my memory for text and student info usually superlative)
Working memory affected
Ability to process speech impaired

I suspect I need to reduce that 1hr+ to 5 mins for some kinds of lighting.

I generally avoided fairgrounds anyway cos of crowds and I decided aged 15 with my balance issues theme parks and rollercoasters was asking for trouble so have never been on one (parents both hate them). I have probably avoided many triggers by dint of immediate aversion effects.

Mr C are your blue lenses a specific prescribed or a generic colour?  Mine are a prescription colour from intuitive colourimetry. I don't really want to wear them all the time cos they are so dark that people can't see my eyes and they're large lenses for efficiency. I notice that people can't read my facial expression with them well which is difficult.

[mrcharly-YHT]

I have blue light filter lenses - the lenses have a coating (which is actually a yellow) that filters out a range of blue light radiated from most modern screens. They cut eyestrain down a lot for me when using computers.

These can be bought as 'gamer glasses' and we bought some for my stepson (he has mild CFS/ME) but he doesn't wear them enough for them to help him (bloody teenagers). Most of the top gamers now use them.

[barakta]

Ah yes the yellow tint lenses. I know you can get that in many optometrists. I didn't know they were popular with gamers but makes sense. We also know/suspect light sensitivity/reading/weird is a known thing in CFS.

I have also seen green migraine lenses in places. There are rose FL-41 ones which do appear to have some limited evidence behind them.  Wilkins' et al's research suggests the colour is specific which contraindicates a standard lens which is why when intuitive colourimetry clearly showed I had a strong preference for a colour I went with that over the FL-41s as I felt it had more chance of working. The science is ALL dubious, there isn't enough research into adults with enough different issues for my liking and it is very hard to remove bias from these kinds of study as a lot of it is self reported.

My lenses themselves are blue, very blue indeed, there's a bit of turquoise and green, but mostly blue. So this means they're letting blue light through and blocking yellow light I think.

I'm trying a few days in bluespecs only to see how I get on. I can't do anything else till I hear from the headache clinic and get that appointment through.

[mrcharly-YHT]

When you look at my lenses, they look blue (almost purple) - unless you view from the side - because the reflected/blocked light is blue.

Viewing reflected 'screen' light is startlingly blue. So I'm not sure if I have the 'bluespecs' that you have or not. I think in the trade they are 'Hoyt' blue lenses.

The science behind these is sound; modern screens given off wavelengths that penetrate the retina and aren't part of the useful visual spectrum.