Does anyone have daily light sensitivity? Photophobia?

Hi all

Everything I read about photophobia and migraine lists it as a symptom of the headache itself but is it common for migraine sufferers to experience this everyday?

I literally can’t walk into the sun without my head and behind my eyes hurting for a bit. The more I move my eyes around the worse it gets.

I literally can’t go outside at all anyday without this happening.

Is this common for migrainers? I originally thought light sensitivity was more periodic around headaches?

Thanks.

Nic

Hi Aussiegirl

I have light sensitivity every day. I’m like a vampire - love the dark! I keep the lights off as much as possible and filter the outside light by keeping the blinds/curtains closed most of the day. Instead of overhead lights, I have table lamps that I use so the lights are much more filtered and don’t seem to affect me as much.

When I’m out, the bright lights of shops, etc. really get me but there’s nothing I can do about it. I didn’t find that sunglasses really helped - they just made me self concious and awkward and hats give me more severe headaches. I just suffer on through as I have to get out of the house or I’ll go insane!

I will say that I do prefer natural sunlight - maybe my body is craving vitamin D after the horrid year we’ve had in the UK. The sunlight doesn’t seem to affect me too badly, but I wear sunglasses when I’m outside on the few days when it gets too bright :slight_smile:

That being said, I am a migraine sufferer and have been for 16 years, although it is much more under control now with Topamax. One of my main symptoms of migraines has always been light sensitivity, so that has definitely not waned with VM. But I do believe that everyone’s light sensitivity is different - there is a different thread where others are reacting to grey days, so everyone is different!

Best wishes

Jennifer

Hi. I too am part of the vampire set - I definitely prefer grey days, shades down, sunglasses… These symptoms can be around every day - mine are & have been for years. (Note - I’m not on any preventive meds yet.)

You sound normal to me :slight_smile:

Best,
Molly

Me too, and so much worse premenstrual!!! I wear a head visor, sunglasses and am still bothered!!

Pam

Hi Aussiegirl,
I also suffer with light sensitivity everyday. I always wear sunglasses when outside and often when I am shopping as the
lighting in most of the shops are very bright and can often cause my eyes to ‘play up’. The light doesn’t only hurt my
eyes but also can cause my vision to become blurred and I then become disorientated, thats when I know it’s time to
head for home where I keep my place as dark as possible. I have the blinds in the house closed, day and night and I also keep
the outside blinds pulled down to keep the light to a minimum. I rarely have the overhead lighting turned on in the house and
prefer to have lamps on with a very low wattage bulb in them. The television and computer screens are also a problem so
I have the brightness turned down fairly low to try and help my sensitivity.
I’m sorry you suffer with this as it’s so difficult to avoid the light whether it be sunlight or artificial light.
Take care.
Annie (DizzyDayz) :slight_smile:

I also suffer from light sensitivity. I wear sunglasses almost all the time outside alhough I have been seen a small imrovement over the past few months. I Typically wear them in grocerery stores, on cloudy,dreary days and on bright sunny days although I perfer the sunny days.

Teri.

Hi Aussiegirl ,

Although i have been a member of the forum for a couple of years , i rarely post due to major problems with computer screens .
But photophobia is particularly relevant to me , in fact i have severe photophobia to the extent i have been virtually housebound for the past two years . I have had MAV for nearly seven years but was only diagnosed three years ago when the condition worsened considerably . To say it has ruined my life is an understatement .
I can’t tolerate any daylight whether it’s sunny or dull for more than ten minutes - and thats wearing sunglasses . I have constant dizziness and disequalibrium and a whole plethora of other symptoms , mainly visual . Any exposure to daylight results in an instant exacerbation of the symptoms . More than ten minutes of walking in daylight can send me crashing to the floor and on a couple of occasions even temporary vision loss !
I attend the headache clinic at the UCLH . I have tried eight different meds with no meaningful improvement and my consultant Dr. Young seems to be at a loss but to be honest i feel he’ s totally incompetent at medicating .
Fortunately i 'm an ebullient person and don’t see it as the end of the line as far as a cure , just the end of the line for this particular Dr . Bring on Dr. S .
Incidentally i would appreciate some feedback from other board members with similar photophobic symptoms and what meds they have tried with any degree of success .
Thanks

P.S. Aussiegirl , i hope i haven 't alarmed you , your photophobia is quite mild and very likely will successfly be treated with the right doctor and meds.

everton
Sorry I can’t offer any help just some words of sympathy for your terrible plight. To be so totally cut off from the world must be just devastating. You say you can’t tolerate daylight - how do you cope at home? Can you cope with have the lights on ?
I have photophobic symptoms but nowhere near as bad as yours. I am OK outside with sunglasses. Any fluro lights make me dizzy almost instantly but wearing sunglasses does help for very short periods when shopping. Computer screens are also impossible except for the ipad which is OK as it doesn’t have the ‘strobing’. This has been a life-saver for me being able to keep ‘in touch’ with the world! Topamax, which I’m currently trialling seems to be helping a tad with the dizziness.
I admire your strength & determination to keep going to find a good doctor & med to help. Is your dr a neurologist who treats Vestibular Migraine (MAV?)
Barb

Hi Barb ,

Thanks for your sentiments , luckily i have my girlfriend and familly to give support but life is a daily challenge .
I only use incandescent bulbs , fluorescent are a non - starter . The blinds are kept half open for sanity sake but even this is a strain on my eyes . Computers are ok for about ten mins . Maybe i should try the ipads , i will definately look into that possibilty .

It started as a subtle light sensitivity to fluorescent lights in supermarkets etc. Then year on year it gradually got worse , now soon as i go out the door it’s like someone shining a huge spotlight into my eyes and after a few hundred yards i have to turn around , nosferatu eat your heart out ! Even night time is just as bad because of the street lighting .

The headache clinic i attend in London is highly regarded but not in my experience nor other board members. They specialize in headaches and migraine variants such as MAV , but i feel they don’t fully grasp my particular condition which is vital in medicating MAV .That’s why i 'm changing to Dr S .

Joe

I have terrible light sensitivity, mostly to outdoor lighting. It’s doesn’t really cause pain or headaches, but it is hard to keep my eyes open outside. I almost always wear shades outdoors. In bright sun I always feel ways more “off” and foggier too. I also see snow and phosphenes/white blood cells on bright objects. It’s pretty obvious that I now have a fear of the outdoors. I am currently on 150mgs of Topamax but that doesn’t seem to help with any of the sensitivity. It’s hard to believe that my eyes will ever return to normal at this rate…

Hi Joe
Glad to hear you have some support. Let us know how your consult with the ‘incredible’ Dr S! goes - he has helped so many people on our forum. Sorry - the ‘nosferatu’ joke went over my head!
Barb

I certainly do. I have to wear sunglasses everywhere including indoors, using computers, etc.

Hi joe t

Does the light ie. daylight , lights , computer screens etc. effect your balance and dizziness ?

Joe

— Begin quote from "everton"

Hi joe t

Does the light ie. daylight , lights , computer screens etc. effect your balance and dizziness ?

Joe

— End quote

It sure does. However, since I’ve been on the Migraine diet for the last few weeks my balance
is getting better in the daylight and most lighting. Not perfect though. Unfortunately, the computer
affects my balance and make the back of my head hurt. It also causes my pupils to dilate…especially
the left eye. I’ve also have had quite a bit of ruptured blood vessels after looking at the computer
for too long. The worse thing though is my photophobia at night time. Car headlights are brutal and
make me dizzy. Also, it’s just too hard to drive at night because the headlights are so bright with
MAV.

Thanks everyone. Definately sounds like I’m not alone. Gosh we deal with some crappy symptoms!

We are all like vampires! Imagine if we all lived in the same town. There would be no lights on anywhere, people wouldn’t be allowed to wear any patterned clothes or have bright pictures on walls, we wouldn’t even have to drink to stagger around together in the dark!

What a party :roll:

1 Like

Seems lots of MAV sufferers have daily light sensitivity on here. It’s much less common out in the real world according to various opticians I have known. We all associates light sensitivity with episodic migraine and the phrase ‘lying down in a darkened room’ comes readily to mind. Far less common amongst non migraineurs for sure. Not ever really thought about the ‘Why’ before but today I just happened on an Express newspaper article stating that photophobia is emerging as a symptom in one of the new variant strains and the doctor in question linked it to inflammation in the brain caused by COVID. That could well figure as the connection between photophobia and MAV too. I have always thought the rear head pressure and for that matter ear pressure felt much as one would imagine inflammation in those areas would feel. Apparently when photophobia occurs as a COVID symptom it recedes after about 14 days. Sore eyes were apparently another indication with COVID. Interesting stuff.

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I note from a recent Daily Mail article that according to the the State University of New York College of Optometry it has now been scientifically proven that Visual Contrast outside is far greater than indoors which may explain in part why some MAVers experience more trouble outside. I say in part because without professional help it’s often difficult to differentiate between true photophobia and other visual issues which can occur as a result of our hypersensitive sensory system.

After all my own experience of Photophobia I noted with great interest the reference to ‘lack of habituation’ in addition to ‘cortical hyper excitability in the first article.

https://jnnp.bmj.com/content/81/9/978

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Yes, we seem to suffer from an overly excitable brain. I can really relate to the lack of habituation. I have that a great deal when I am outside ! I really hate contrast.