I have been taking Amitriptyline at 5mg for a week, slowly tritating up. The first secondary effects (increased anxiety, body twitches,sedation) are now kind of gone which is good.
My question is the following: when did you start to feel your light sensitivity was cured with Amitriptyline, and at what dose ? My problem is with the aggressive sun. Triggers me every time!
And I totally avoid shops.
I notice that I can start looking at my computer at low brightness now. However the sun glares still bother me very much.
Hi Marina. As I am sure you will appreciate a week isn’t long enough to achieve much. Amitriptyline is excellent for light sensitivity. I have written up extensively elsewhere on here about light sensitivity of to give it the correct title photophobia. Use the Search facility to check it out. One good keyword would be Kathleen Digre. She’s not a sufferer posting but an American eye expert and I think I have posted links. Another keyword to use would be photophobia. Although most people use the term light sensitivity that in medical circles actually refers to the skin reaction akin to sunburn. Photophobia is where the light actually makes you squint away fro light of it physically hurts the eyes of in case of MAvers makes us ten times more dizzy and off balance. I suffered photophobia extremely badly to the extent going out in bright light I would fall to the ground unable to stand. All written up in bits through my diary. Unfortunately I was far too unwell to document it real time.
Dosages to achieve some success vary considerably individual to individual. Impossible to quote with accuracy. Some people do well in low doses, 30mg or less and done see improvement in various symptoms in under one month. In general I would suspect 2-3 months to be more usual. Meanwhile don’t cut out bright light entirely if you can avoid it but minimise that strongest sunlight by sitting away from it or drawing a blind partially across. Whatever you do do not start wearing sunglasses indoors. Outside fine and a wide brimmed hat too if necessary. Btw you will most probably find the photophobia will reduce very gradually as your light level tolerance increases. From my own experience it’s not going to just stop suddenly. You will have to be aware of it for some time to come. @jess38 is another sufferer and she takes Amitriptyline so perhaps she can comment too.
Thanks a lot for the advice, I do tend to wear sunglasses outdoor. Maybe it’s a vicious cycle (in the sense I am fleeing light)
Indeed maybe the reason why I didn’t find how long it takes to get rid of the symptom + at what does is because… It depends for everyone
I am still curious to hear from other MAVer on this, but will arm myself with patience ! I am keeping a diary so that I can be able to assess what Ami helped. For sure 1 week is too soon.
Will also search for the Eye specialist you mentioned and read more in depth you diary for that specific symptom
Imho don’t avoid shops. Exposure is the only way to compensate. It might take years but don’t hide because if you do it’s likely to take even longer.
I saw a huge improvement at 20mg. 10mg was not enough for me. Note that even 20mg didn’t fix malls and supermarkets for me, only time did (though who knows, the Ami might have assisted compensation by limiting the number of migraines. Once you’ve hit a migraine I suspect compensation is stopped)
Sun was fine on its own (sun is rarely strong in U.K.! ) but problems neurologically if getting a mixture both sun and artificial light at same time. Eg working in an office or coworking space near the window. That eased over time for me too.
Bottom line, imho is that you should only take drugs to prevent migraines and severe symptoms. Taking too much will probably slow compensation. Taking them for too long will also inhibit compensation.
This approach was backed up by my neuro-oto who told me taking Amitriptyline forever was not healthy. It turned out that she was right and taking them very long term was unnecessary (more than 2.5 years in my case)
Drugs are rarely a cure for all the symptoms of MAV and for those whose symptoms wane, I suspect that is as much about compensation and recovery in general rather than the direct action of the drug, though the drugs help to dampen the extreme fluctuations.
I accept there maybe some sufferers whose underlying condition doesn’t get better and those people may have to rely on drugs indefinitely. I suspect the vast majority can get out of med-jail though.
Making me wish I had stayed in the UK
It’s true that I am more noticing the sun issue side of things eversince I moved back to my parent’s place (in FR), orientated east, without anything, building or tree blocking the sun in the mornings
I am starting to understand Count Dracula more and more.
Joked aside, about taking drugs forever, I think one must be very courageous to titrate down something working for them !! I’m not there yet but I can imagine it’s a difficult decision.
You are fine with sunglasses outdoors. You should have protection from UV rays anyway. Everyone should.
The opposite certainly does apply. The more you protect your eyes from light and the darker the environment they remain in the more sensitive to light they will become. With me it was only increased medication that eventually gave me a high enough tolerance threshold to once again tolerate increasingly more light. My symptoms were too severe to tolerate certain light levels at all for long enough to build up any resistance. Habituation which is the opposite of Avoidance (many specialists insist on Trigger Avoidance and that’s all triggers from food to environmental ones) should gradually increase tolerance/reduce symptoms whichever way you think of it but sometimes the side effects prove intolerable in themselves. I well remember a VRT body instructing me in brief 10 minute supermarket visits which involved no actual shopping which was supposed to rehabituate me to the environment. Ten minutes in a supermarket resulted in ten days bedridden unable to walk. Trigger Avoidance was the only way forwards for me but we are all different because we are all differently afflicted.
Of course the Supermarket Syndrome reaction is much more complex than photophobia. Although both stem from the general hypersensitivity caused by the condition supermarket reaction is more Visual Vertigo than straight photophobia. A lot of people experience a lot of Visual Vertigo but never experience true photophobia, others suffer both but only experience photophobia as part of an acute migraineous type event. Chronic 24/7 photophobia is less common or so opticians have told me. The only ‘cure’ is to find and stop the root cause as one reads everywhere - when looking for a cure that is! Even then from my own experience I suspect many find the susceptibility remains on long into the future. I have read that’s because once these pathways are opened they remain that way which apparently is true for other susceptibilities caused by Central Sensitisation. Interestingly I really thought mine had virtually gone although I always wear Transitions these days and a brimmed hat outdoors. On Thursday I walked outside for 90 minutes in full bright winter sunshine. Not a cloud in the sky and even stood in conversation with someone backlit by the sun, no problems at all. Today thick fog got me. Fifteen minutes and the reflected light off thick fog left me really dizzy and feeling nauseous. You don’t necessarily even need sun.
Yes, I suffered from more of a visual vertigo which was made worse by artificial lighting. I am very sensitive to glare though and always have been.
I have been taking 40 mg of Amitriptyline for about 18 months and it’s helped me so much, it’s given me my life back. I tried to titrate down a few months ago, but think I attempted it too soon.
I’m still not 100 percent perfect but Amitriptyline will help you for sure. It takes time though, I started noticing small improvements straight away but with every increase of the meds I had bad setbacks for a couple of weeks. It takes time and a lot of patience but it is a fantastic med for MAV.
On Thursday I walked outside for 90 minutes in full bright winter sunshine. Not a cloud in the sky and even stood in conversation with someone backlit by the sun, no problems at all.
@Onandon03 if that is not success ! Thank you for sharing this story. Makes me hopeful I will get there some day.
Of course the Supermarket Syndrome reaction is much more complex than photophobia. Although both stem from the general hypersensitivity caused by the condition supermarket reaction is more Visual Vertigo than straight photophobia.
Had to Google the Supermarket Syndrome and oh boy this described exactly the experience.
This is not only photophobia, 100% agreed! I get sweaty, I start to feel oppressed, and this all happened with vestibular migraine. I used to feel sweaty and stressed while walking outside as well but it got better.
I have amended the title on your behalf. Let me know if it doesn’t suit.
@Diphthong is correct about the increased sensitivity to skin from sun being caused though. Amitriptyline isn’t the only culprit either. Other prescription drugs can do it too. Some PILs actually carry warnings advising patients to stay indoors away from peak sun times of day.
I am pretty much good now with sunny conditions. I must admit to wondering if it would ever return near normal but it has. But as I said above yesterday the fog ‘got’ me. I suspect many photophobic people retain a susceptibility for life. I don’t stay outside for extended periods without Transitions and a hat and don’t intend to. Prior to chronic MAV I never wore sunglasses or Transitions. I really would prefer not to go on wearing them because I so dislike them on others, I hate not being able to see people’s eyes, but somehow I doubt I will have the choice.
There are two types of Photophobia my ‘tame’ local optician tells me, ‘Glare’ and ‘Contrast’, for the latter think wide winter horizons, bleak colourless sky against dark winter landscape on sunless day. Conditions other than migraine also cause photophobia. ‘Supermarket Syndrome’ is much more associated with Visual Vertigo, repetitive patterns, lack of specific focal point and presence of complex environment plus fluorescent lighting. Far more likely to occur with people who are excessively Visually Dependent a condition which tends to occur more frequently in people with vestibular deficits, hence we MAVers commonly experience it.
Now you know bit more, which do you think you suffer with or is it both? Just from interest. Ami should help either way.
When you felt unwell in the fog, was there a lot of light that day?
After reading the description, I think both disturb me.
A very luminous setup in nature where the sun is hidden would also trigger me.
However, the glare will be more likely to make me dizzy/ feel pain behind my eyes and above my temples more quickly if that make sense.
I have a very low tolerance to glare.
And the worst is the car flashes at night!!
No. It was thick fog with very reduced visibility. Light reflects off the white fog just as it reflects off that featureless winter sky.
Car flashes at night. Lots of migraineurs have problems with flashing lights. Ostensibly moving cars which appear to be flashing at night may be similar? I can remember being quite blinded by reflected light from a raindrop on my bedroom window that was backlit from outside. I also remember noticing a rainbow of colour through that one raindrop I had never seen in a raindrop before. Never did check to see if all raindrops are the same, full of colour much like old fashioned marbles or whether that was just another part of some visual hallucination too.
We have identical weather here in South West England today. Reaction to this sort of lighting is common for photophobic people and not just MAV sufferers. It’s Contrast Sensitivity as opposed to Glare Sensitivity. I don’t think I ever found it painful but it can make me really dizzy and off balance and extremely nauseous. When I was first chronic and housebound I was feeling nauseous through all daylight hours. I used to wear amber anti glare driving glasses and a tennis visor all the time indoors. Then when the sun shone I would have to close curtains because it was too bright. That’s the Glare type. My photophobia was extreme.
The extra stimulation from the sunshine lowers the tolerance thresholds of a hypersensitive sensory system.
Marianne try to remember this site only covers a minute selection of sufferers. Not really that representative. However If you call up the Search facility there are others from the past who discuss this. Under ‘light sensitivity’ there is 50+ references. I checked. A few mention sunlight affecting them. It’s true most don’t. In my own case my sensitivity to outside light and sunshine came last, after my reacting to fluorescents in public buildings and supermarkets. I think it also receded before the reaction to artificial light too.
Discussing photophobia with my ‘tame’ optician he appears to have had quite vast experience of people, not specifically migraineurs, who regularly experience light sensitivity from various different sources. I personally know two non migraineurs who have suffered contrast photophobia - ie would react adversely to the light in the photo you posted - mother and daughter and they have both been like that all their life. The mother never had any trouble with artificial lighting but the daughter now in her 60’s has ever since she had labyrinthitis seven years ago. I don’t know whether you already know this but I understand anxiety can also associated with light sensitivity.