Discussions By Condition: I cannot get a diagnosis.

Very extreme photophobia

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • November 23, 2006
  • 00:00 PM

When I was 5 years old I had meningitis. After this I slowly got more and more sensitive to light. Today, 13 years later, my photophobia is so extreme that I can't go out in the sun. Even when the sky is grey I have to wear sunglasses, and sometimes I even have to wear a mask to block out all light. It is only getting worse as the time passes. Is there anything to do in this matter?

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10 Replies:

  • the way that i can relate to your problem is that i have photo phobia but for a very different reason. i have seizures from the sun filtering through the trees and buildings, etc, anything that gives off a strobe effect.i have had this since i was 13 and i am now 49.i've lived my whole life in fear of the sun! i dont go out in the winter except between 10-4. before and after that the sun is too low and strobes are in abound!i have had some counseling for this. i've been told i have post traumatic stress sydrome from this. i have had seizures literally from this and that was quite trramatic and lead me to live in very sheltered life! it sucks!do you have any medical reason for being afraid? are you at risk for developing this again from the sun? have you been told by a dr. to avoid sun exposure? if not then you really have a paranoia of this. like me, this will run your life and ruin your whole life.do you want to live your life in a box? i dont think you do. if you have no medical reason for being affrain then you need to seek some counseling. you need to mybe even try some anti anxiety meds.your phobia is going to rule your life. believe me after living my whole thus far in such shelter. i think of alll that i have lost in my life. the fun i missed out. the restrictions. believe me it sucks in hindsight. so get go some help now!!! dont go another day with this controling and running your life! LIFE IS TOO SHORT TO LIVE IT IN FEAR!
    Anonymous 42789 Replies
    • November 23, 2006
    • 02:07 PM
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  • I do not actually fear the light. I want to walk into the light without getting blinded, without this tormenting pain rushing burning in my eyes. I really want to see the light of day just like everyone else. I fear being forced to live my life in shadows and darkness as you do. I have been to an optician and a few eye doctors. But in my country technology is a bit behind the development, and the waiting lists are long. I waited half a year to visit the first eye doctor, who directed me to one connected to a hospital. He didn't have time before after half a year, so I sought one at another hospital far away. I waited 2 months and were there today. He told me there was nothing to do. He had never seen anything like it. I am now looking for other alternatives. If there is a treatment for this kind I have, I will do anything to get that treatment!
    Anonymous 42789 Replies
    • November 23, 2006
    • 02:53 PM
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  • Firstly, in reply to the initial post. You sound as though you have photosensitivity. Some people are so bad they break out in blisters. They have been force to live nocternal lives. I am very mild photosensitive, tinted specticles, and I feel as though the energy is being drained from my body when I go out in the full sun, and I get sunburn very easily. Often people ask me if I have been fishing or something as i have a red face at times and I do look burnt and I havent been in the sun longer then half a minute bouts. But no it is photosensitivity.Browse the web to see if you can find anything on photosensitivity.Post #2, you don't sound like a case of post trauma syndrome. There are individuals who have seizures like you from the strobe effect. Search strobe seizures or something along those lines. I dont know if there is some type of med for this. It has been likened to a form of epilepsy, in fact, i remember some years back a TV advert being taken off the air that had a stobe affect to catch the viewers attention, but it actually ended up causing those with this stobe syndrome to have seizure. No this is no mere fear of yours, if you are fearful it is purely from knowing what will happen to you when subject to stobe affect. I am sure that with an electon reading of your brain (ECG I think it is called) under strobe affect, the specialists will be able to determine if you have a form of epilepsy or other neurological disturbance. And do not take any epilepsy med unless you have concrete result that you have a form of epilepsy, and even then research any meds you are given to double check you are on the right meds, taking wrong med could lead to epilepsy.All the best to both of you.Agape,searchingsam
    Anonymous 42789 Replies
    • November 23, 2006
    • 03:31 PM
    • 0
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  • I'M SORRY! that is what i was NOT sure of if it was true pain or just a pshycological fear. now i know. maybe you can try POLARIZED sun glasses. they work wonders for blocking out glare and bright light. they sell them at walgreens or a good eye store. but be informed they are slightly costly but if they help well worth the money. give it a try at least to see if it might help even a slight bit. i wish you so much luck. i can truly feel for you tho for different reason the outcome has been the same. God bless you!I do not actually fear the light. I want to walk into the light without getting blinded, without this tormenting pain rushing burning in my eyes. I really want to see the light of day just like everyone else. I fear being forced to live my life in shadows and darkness as you do. I have been to an optician and a few eye doctors. But in my country technology is a bit behind the development, and the waiting lists are long. I waited half a year to visit the first eye doctor, who directed me to one connected to a hospital. He didn't have time before after half a year, so I sought one at another hospital far away. I waited 2 months and were there today. He told me there was nothing to do. He had never seen anything like it. I am now looking for other alternatives. If there is a treatment for this kind I have, I will do anything to get that treatment!
    Anonymous 42789 Replies
    • November 23, 2006
    • 10:32 PM
    • 0
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  • i was diagnosed with it but barely fit the scale. i dont think i have it either. but my fear of having one is so extreme that i live a very sheltered life! if that is not bad enough i also have hypoglycemia and anxiety stuff. both of these mimick the anxiety (aura) i would get before a seizure and makes it that much worse!!! i have had EEG's done they are always normal looking but once when i was early teens it was abnormal. i was on meds for several years and i was still afraid of everything. i wear the polarized sunglasses and it helps alot. still in my mind the fear constantly lingers. i am starting a course of celexa, an ssri for anxiety to see if it might help with some of this. i just started a job at kohls too and i've had low blood sugar symptoms while working and had to run to eat something dispite having eating 2 1/2 hours prior. felt like the aura of the seizures. i wanted to run out of the store! so hard to live a normal life with it, anxiety and hypoglycemia. but hey i could be alot worse off, right? i exercise an hour a day too! i am thankful for the health i DO have!Firstly, in reply to the initial post. You sound as though you have photosensitivity. Some people are so bad they break out in blisters. They have been force to live nocternal lives. I am very mild photosensitive, tinted specticles, and I feel as though the energy is being drained from my body when I go out in the full sun, and I get sunburn very easily. Often people ask me if I have been fishing or something as i have a red face at times and I do look burnt and I havent been in the sun longer then half a minute bouts. But no it is photosensitivity.Browse the web to see if you can find anything on photosensitivity.Post #2, you don't sound like a case of post trauma syndrome. There are individuals who have seizures like you from the strobe effect. Search strobe seizures or something along those lines. I dont know if there is some type of med for this. It has been likened to a form of epilepsy, in fact, i remember some years back a TV advert being taken off the air that had a stobe affect to catch the viewers attention, but it actually ended up causing those with this stobe syndrome to have seizure. No this is no mere fear of yours, if you are fearful it is purely from knowing what will happen to you when subject to stobe affect. I am sure that with an electon reading of your brain (ECG I think it is called) under strobe affect, the specialists will be able to determine if you have a form of epilepsy or other neurological disturbance. And do not take any epilepsy med unless you have concrete result that you have a form of epilepsy, and even then research any meds you are given to double check you are on the right meds, taking wrong med could lead to epilepsy.All the best to both of you.Agape,searchingsam
    Anonymous 42789 Replies
    • November 23, 2006
    • 10:38 PM
    • 0
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  • I'M SORRY! that is what i was NOT sure of if it was true pain or just a pshycological fear. now i know. maybe you can try POLARIZED sun glasses. they work wonders for blocking out glare and bright light. they sell them at walgreens or a good eye store. but be informed they are slightly costly but if they help well worth the money. give it a try at least to see if it might help even a slight bit. i wish you so much luck. i can truly feel for you tho for different reason the outcome has been the same. God bless you!It's okay. I already do use polarized sun glasses. I wouldn't be able to get anywhere without them, but it's not always enough. Sometimes total isolation from any light is a necessity, and it is only getting worse. But thank you anyways. (:
    Anonymous 42789 Replies
    • January 26, 2007
    • 06:32 PM
    • 0
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  • I know this is late, but I just found this.Unlike you, I have no known cause for my photophobia. I have gone to an opthamologist about it, and he said that the only thing that can be done is support (in other words, basically nothing).I use a pair of fitover sunglasses (I don't wear contacts so they must fit over my prescription glasses), as well as clip-ons and a black baseball hat. Combined, the two sunglasses generally help in 90% of situations. My hat blocks out any light coming from above, and is black so it doesn't reflect any light into my eyes. I wear it inside as well, to block flourescant light because that hurts my eyes as well. It's the other 10% of the time that I still need help with. In effect, I don't go outside in the middle of the day. It just hurts too much. I wear all of the above even on cloudy days.The other thing I did before I found my fitovers (which took me most of a year to find ones that fit decently and were the right tint) was to use a long cane. It's a blind person's cane, except that it was black instead of white so I wouldn't break the law. My cane allowed me to close my eyes outside and still walk safely. I know this is something that is not used often (if at all besides me) for this purpose, but it worked. Yes, I did get comments about faking and pretending, but the fact was, it worked and that's what counts. And sometimes I wish I could still use it, because my light sensitivity has not gotten better since I found good sunglasses. I know it's something you'll probably reject out of hand because of the stigma and such, but I thought I'd tell you so you have it as an option if it ever gets to that point.
    Anonymous 42789 Replies
    • October 16, 2007
    • 05:01 AM
    • 0
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  • Hi! I know this is reaaaaaaaaaaaaally lae but maybe you´ll check this someday in the future.I was born with a congenital condition, I don´t have enough conecells in my retine, so that causes, some symptoms, including my photophobia! So yeah, I´ve lived with it my whole life, i´m 26 right now! Being out in the sun is something i love to do but sometimes it would get so annoying to do, and working in fornt of the PC is annoying for my sight as well, my monitor needs to be at a realy low brightness and contrast! and walkign inside a supermarket or a mall, places that use really bright lights, all that is nerve wrecking!!What really helped me is using some tinted contact leses, and when i´m exposed to the sun, I use sunglasses as well!The colored contact lenses are just any common contacts you´ll find, but have the area that would fit your pupil tinted in dark red! Yeah, I get looked at sometimes, people don´t understand why my eyes have this red dot in the center but hey, i feel soo comforable using them!! and not everybody sees them anyway, some people don´t even notice them!I totally get that feeling you´re talking about, the exhaustion, the pain and it freaks me out as well, btu this has helped me a lot! well i REALLY HOPE that at this point you´ve found a solution for your problem! and i hope i got to help anybody else who suffers from thsi condition!!!
    Anonymous 42789 Replies Flag this Response
  • I have been looking for people like me. Not that I would wish there were others that are so sensitive to light! About two years ago I began having such sharp pain in my right eye from light - sunlight, contrasting light, headlights, TV, you name it. Now I have all dimmest lighting in the houses, closed binds, cardboard over windows in my office at work and wear glacier glasses (darkest I could find that completely seal all around).I have seen a Retinologist who found my eye is perfectly fine, MRI showed my brain is ok. Doctors concluded it must be migraine. But the pain would start at even a glance of light and not stop day or night for days, much longer than they say a migrain will last. Anyway, online the migraineurs kept telling me migrain is not what I have and I could find no one like me.Recently I found a new neurologist who had some new ideas. He did not think this was a migraine. I am going to see a neuro-opthamologist. I don't know if there will be any changes for me any time soon.I loved the suggestion of the contact lenses. Sunglasses don't seem to be enough. And lights catch me off gaurd all the time! I hate how I have been driven indoors to avoid the light - and when I am not inside how I just can't avoid everything. I find I close my eyes alot. I can totally see using a cane! I either suffer the pain when I open my eyes (or uncover with my hands), or trip. And at work I try to seem normal because I don't think people understand and I'm tired of trying to explain. So I suck it up and let it hurt a lot of the time. But Im sure I just seem weird if anyone sees me close my eyes walking toward windows or closing one eye, and the cardboard on my windows.Hang in there. You are not alone.
    Out of the Light 1 Replies Flag this Response
  • My mother also suffers from this extreme photophobia. It has been over a year now were it has just gotten worse and worse.
    She also have clip on's on her glasses, and sunglasses on top of those, and and apartment that is almost totally blacked out. She never goes out now.
    I have seached a lot on the net for a solution but it just seems freaking hopeless!

    Anyone who have found a solution?
    SimonDKDK 1 Replies
    • September 7, 2015
    • 08:14 PM
    • 0
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