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London calling!

Hi to all users of the site. I have just recently been diagonised with ‘migraine with extreme photophobia’ ,which means i am very sensitive to any lights even daylight. The light triggers my migraine cuasing dizziness. It has worsened over the last six months to a point where i am virtually housebound. Even walking to the end of the street is scary.
The neurologist (i am English by the way), after three years of tests, finally diagnosed migraine with extreme photophobia and prescribed Amitriptyline. Starting with 10 mg and increasing to 50 mg , which after 2 months i am taking.
Unfortunately they have been of little help, i am a little less dizzy around the house but once i got outside its just the same.
Can anyone identify with my symptoms or offer advice on different meds particularly effective with light sensitivity? Would much appreciate any help.
EVERTON.

Hello,

I just wrote you a very long post which got lost! Anyway, an abridged version is this. I am also in the UK - London. I have MAV with severe photophobia. My condition is controlled a fair amount with propranonol - a beta bloker - 80 mg a day. I am very drug intolerant and this is the only drug that has helped. So far I have been unable to go high enough on it due to side effects to see if it would eliminate the problem completely. I don’t think there is a specific drug that helps with the photophobia, it’s just a case of hitting on the right migraine drug for you and if it eases the migraine it will ease the photophobia. I have had the condition for 8 yrs and since getting it under control with drugs have had long periods where I am 95%. At worst the photophobia means I am intolerant to all light - computer - daylight - but especially sunshine. Even at my best sunshine will trigger symptoms.

I was finding it so disabling I did some research and discovered that you can get tinted contact lenses for photophobia. These differ from tinted lenses used for aesthetic reasons which tint over the iris and are clear over the pupil. These lenses are tinted over the pupil as well and so protect your eye from the light whilst still allowing you to see. Metaphorically speaking it’s like wearing sunglasess on your eyeball. These work better than sunglasses which let light in at the side and never offered me enough protection. I have seen numerous neurologists and no one ever suggested this, I had to route out the info for myself.

I talked to my optician who found a manufacturer in the uk. He has to order them for me as they don’t supply direct to a customer. They’re not cheap - £160 ish and last a year, however they have made a huge difference to my life. I decided to get the darkest tint in the darkest colour - brown. They make my eyes look a bit amber - not unpleasant although slightly strange, not that I care, it’s better than the alternative. In summer I wear both the lenses and sunglasses. I got the darkest sunglasses I could find and had them polarised so they protect from glare. With these two precautions I can actually spend whole days out in the sun with little problem. I recently went to Thailand and although I still avoid sitting out of the shade, it meant I could enjoy my holiday without becoming really ill. In a nutshell, light is a huge problem for me, the less light getting in, the less of a trigger is occurring, which means the migraine doesn’t ramp up.

It’s possible that if you find the right drug and can tolerate enough of it that the problem might go without the need for this. However if you want the details I could ask my optician. I’m sure if you took the details to your optician they would be able to order them for you.

The lenses work better outside than inside where things can become a bit dark. In that respect it’s like wearing sunglasses in the house. With a situation as severe as yours you might be able to tolerate them indoors too. The lenses are thicker than disposable daily contacts and can be a bit uncomfortable at times, but nothing that’s not tolerable. If you don’t wear contact lenses as a rule (I do) I’m sure they would be able to make them without a prescription.

As a matter of interest, when your symptoms get very bad, do you find that rather than light simply being uncomfortable, everything starts to look freakishly bright?

H

Although not as bad as both of yours sounds, I’m very light-sensitive during a MAV spell too ansd as a contact lens wearer, am interested in the tinted lens thing. I tend to wear my sunglasses a lot and am sure people think I’m odd or am some kind of celebrity :lol: . I even keep my sunlasses on in Sainsbury’s as I can’t bear the fluorescent lights. Also, flickering candles in restaurants drive me nuts and I hate facing a window when indoors.

DizzyIzzy (also London region - maybe we have weird light quality here!)

I met a lady for the first time, years ago, I went to her house. She was sat in front of a window with bright sunlight coming in. If it had been one of my old friends I would have asked them to close the curtains, on this occasion, I didnt and I got a severe vertigo attack within a short time of talking to her. The sun doesnt affect me outside in this way.

Christine

Hi Hanna,
Thanks for the reply. It’s such a relief to talk to someone with the same condition, it’s also music to my ears to hear that there are other meds outhere and solutions that work.
My migraine started 4yrs ago when i was 36 but it was only mild so it was hard to diagonose . Then last year it took a turn for the worse so the neurologist was able to diagnose. At the moment i am virtually housebound. I am sensitive to almost any light especially sunlight, the computer,tv etc even brightly coloured walls and pavining stones glare! Walking for more than a couple of minutes makes me dizzy and if i dont turn back i think i would probably pass out.
I am currently under Dr R. Davies at the UCL. She prescribed 10mg ami. working up to 50mg which i’m now taking but i think she did say there were other meds. but didn’t didn’t give me much imformation.What meds have you tried ?
I have done some research myself and you, thankfully confirm what i have read,ie that it’s trial and error. I have also read about the contact lenses but wasn’t sure whether they would work so its encouraging to hear that they do work. I have an app. with the opthalmologist next month so will ask him but thanks for the offer.
I am really happy for you that you have found a solution because i know how debilitating it can be. I had to stop work 6 months ago, any physical activities are a no-go and socialising even proves difficult. Does the light make you dizzy as well or do you just get headaches ?
Your reply has given me a boost and find it very encouraging, thanks.
Joe.

Hello Joe,

Yes the light makes me dizzy. Pretty much all of the sufferers on this board have dizziness and vertigo as their main symptoms - they have mostly been diagnosed with vestibular migraine, also known as migraine associated vertigo. It’s basically a type of migraine in which the main symptom (often along with numerous others) is dizziness/vertigo. I’m curious, did the neurologist not specifically diagnose you with this? It sounds like what you have. Some people on the board also get migraine headaches, but it is actually possible for the migraine to manifest simply as dizziness with no headache at all. Did yours start with dizziness, or did it start with headaches that then morphed in to dizziness?

I was also seen by Dr R Davies - has she moved to UCL? I saw her at the neurotology department in the national hospital of neurology and neurosurgery. She then referred me on to a neurologist in the same hospital for further drug management. She’s a neurotologist so specialises in dizziness and knows a fair bit about migraine management, but ultimately said to me that as the drugs I’d tried had failed I was better off in neurology. I really, really liked her; she’s clever, and she’s also very human which isn’t always the case with doctors. She gave me the MAV diagnosis. I’ve tried so many drugs it’s hardly worth listing them - with this condition one person’s cure is another person’s side effect nightmare. It’s a case of trial and error with each individual. I have very bad reflux so many drugs that might be ok for someone else cause too many stomach issues for me. I am also just super sensitive to drugs so prone to getting every side effect going.

The photosensitivity is horrible and very disabling. When I go in sunlight unprotected I tend to get very dizzy and lightheaded and then some pretty profound brainfog sets in, I feel like I can only think at a fifth of my normal speed. A neurologist once told me that migraine slows the brain and some people get this brainfog symptom - do you?

I’m sorry you are having such a horrible time. I’m sure a drug will help you, it can take time. If it’s any help or consolation, although the dizziness can be nasty and very disabling, I walk about and am active despite it, and although it can make you feel like you will pass out, I have never had that happen to me. Some people do get very housebound with this condition which is obviously depressing and frustrating for them. Sometimes it can be helpful not to give in to the understandable anxieties the condition brings on about being out and about and push through. Even if it’s only a small bit of activity a day to start with - walk to the corner shop etc…

H

Just for info, The National Hospital for Neurology and Neurosurgery became part of University College London Hospitals NHS Trust about 10 years ago I think it was, so it’s both NHNN and UCLH, although UCLH includes other hospitals e.g. Ear Nose and Throat Hospital, Middlesex Hopsital etc.

I saw Dr Davies’ colleague Dr Bamiou at the same place, and she was also really nice and understanding (and clever I hope!)

DI

Yes ,it is part of UCL. No Dr D. never actually used the term vertigo but i presume thats what she means, furthermore the symptoms you have described ,dizziness, brain fog etc is uncannily the same as mine. 90% of migraine is dizziness,the other 10% headaches,nausea and poor cognition.

The last consultation i had with Dr.D had to be done over the phone, i couldn’t make it in even with sunglasses so it was quite brief.It was only through research i came across this site and i’m glad i did.

On a brighter note i’m persisting with balance exercises {cawthorne} which are helping and tomorrow i go back to the docs and will ask for different meds, so fingers crossed.
joe

@Maina. I had never come across this before although there’s no reason it shouldn’t come up on a Search. Despite its obscure title this thread relates to some really extreme cases of Photophobia to which I can totally relate. I was easily as bad as @everton and indeed was housebound for an, unmeasured, but similar period of time. I would say I was totally intolerant to any light. I was even wearing a tennis visor against my own room lights at home. The improvement was very gradual but Propranolol seemed to work eventually.

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