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Migraine vs. Photosensitive Epilepsy

So, I am at a lost, is it a migraine or something else???

I have been suffering from “migraines” since adolescence (mother and brother are both suffers) and I have become desperate for help.  My migraines are usually triggered by stress, certain foods (chocolate, grapes, etc), and visual disturbances (flashing lights).  Since I have been able to wean out the specific foods that trigger my migraines and I have been fairly good with regulating my stress, the only thing I CANNOT seem to control are the visual issues I encounter in the environment.

Now, I say I suffer from migraines, because that is what the doctor diagnosed me with.  BUT, I have grave concerns that there is something else going on.  I am in my late 20’s, very active, and I work in a school setting.  Every since I was in my early teens, doctors have tried many different medications to help me with my “migraines”.  I have never had any success with medication and the only solution I have found that helps over the past 20 years is to isolate myself from the world for about an hour and pray that it goes away.  My first reason why I think I am not having migraines is that I have never found medication that works and I have tried many different brands, types, dosages, and over different time.

My second reason for suspecting that I may be having more than just migraines is the way they develop.  I am extremely sensitive to any glare, flash, bright light, and/or odd pattern that can come directly into my vision or even get into my peripheral vision.  The light can be direct or bounce off of any reflective surface (tile, tops of desks, dry erase board, shiny paint on walls, windows, computer screen, etc.  The result is either an immediate blinding (starts off small and then the blind spot increases over time to where I am completely blind in both eyes) or a day or two later I will get the same result.  Or sometimes, it will continue to reoccur both immediately and then days later.  The blinding aspect is very debilitating and heaven forbid if I am driving or in public, because I become nonfunctional.  I usually can tell that an onset is going to occur by either a blind spot in my vision OR I have a deep, big yawn.  I know that migraine suffers can have “auras” but the intensity, frequency, and feelings I get seem really debilitating.  I often feel panicked, confused, exhausted when the visual occurrence begins, and like I mentioned, migraine medicine does not have any impact on decreasing this.  What is also strange is that sometimes I will get the migraine pain 30 minutes into the blinding episode BUT sometimes I do not and my vision will come back and I can move on with my day.

 I hate that I keep going doctor-to-doctor (never seen a neurologist, only family doctors) trying to find help for this but it is getting extremely exhausting for myself and husband (who has to shield me and plan an escape if there is any visual disturbances in my environment).  Does anyone have a suggestion? Should I continue to waste my time and money trying to find out what is going on? OR is it just simply a typical migraine and I should deal with the process and put my life on hold until it returns back to normal after one of these episodes? I just want a solution and want this to stop impacting my life, either way.

Comments

Runner Girl, I do not remember who, when or where, but do remember that for people who are sensitive to bright lights, wearing tinted glasses would help lower the brightness on the person's eyes, and decrease the symptoms that individuals were experiencing. I spent some time searching the Internet and one of the search results led to the website of http://www.allaboutvision.com/. One of the topics listed on that website was information about… Photophobia (Light Sensitivity). Here is a small portion about it. Photophobia, or light sensitivity, is an intolerance of light. Sources such as sunlight, fluorescent light and incandescent light all can cause discomfort, along with a need to squint or close your eyes. Headaches also may accompany light sensitivity.

I don't know exactly what the symptoms you are experiencing are related to, so you might want to spend time looking over more of the information available on that website, to see if your symptoms are mostly related to Photophobia, or some other condition related to problems and diseases of vision.

If you have not done so already, you might want to schedule an appointment to see an optometrist.

Bruce (I'm not a doctor, but instead, an epilepsy support group leader, epilepsy advocate, who has epilepsy.)

Hi Runner Girl,

I have had migraines since the final year of university (between 25-30 years), and I have had epilepsy all my life (58 years).

Epilepsy and migraines greatly overlap, with the length of time one of the easier differentials: i.e., longer than 5 minutes, call it a migraine, and less than 5 minutes call it a seizure. As the sensations before, during, and after a seizure often includes migraines with "short-lived" sensations during the actual seizure, the short-lived sensations increases the chances that epilepsy is involved with the migraines.

A useful book generally available at PubMed is "The Epilepsies" by Panayiotopoulos, with the section mainly addressing migraine versus epilepsy at: http://www.ncbi.nlm.nih.gov/books/NBK2605/#ch12.s139

A very convenient Table is at: http://www.ncbi.nlm.nih.gov/books/NBK2605/table/ch12.t3/?report=objectonly

Many migraine medicines can aggravate epilepsy, while many anti-epileptic drugs (AEDs) can minimize migraines. I have both bouts of painless migraines and painful migraines, and when I take an AED occasionally for a migraine, the AED greatly helps, but when I take AEDs regularly for my epilepsy, the AEDs lose their effectiveness with my migraines, so I basically gave up on trying to reduce my migraines with my attempts to moderate my epileptic seizures. Regular Keppra works the best for me. Some of my migraines can be very long after intense seizures, but one very intense waxing and waning migraine for weeks with severe pain, to numbness, to bouts of blindness, turned out to be a frontal subdural hematoma from physical injuries during a very strong seizure.

Another useful book including a chapter on migraines versus epilepsy is "The Imitators of Epilepsy" by Kaplan & Fisher, and individual segements of this book is also at PubMed with more difficult access around:
http://www.ncbi.nlm.nih.gov/books/?term=migraines%20AND%20imitepil%5Bboo...

Tadzio

Hey Runnergirl,

It seems to me you are haveing seizures from PSE(Photosensitive Epilepsy).I say this because,I have photosensitive epilepsy myself.I wasent diagnosed with PSE till I was 16yrs old and wasent diagnosed with epilepsy till I was 13yrs old.Till this day my parent and I are convinced from my past all the symptoms I had that were considered "normal" to many specialists.Instead they charterized many types  of seizures.Though with some of the symptoms we found were not at all that normal till I was put on medication for seizures.0ne is with the same description you gave up above; being able to see one minuet then all of sudden your vision becomes cloudier till a point you cant see except for black.People who have PSE can be bothered by many things though not all of these Im going to list: Certain patterns,certain types of light like flourescent lighting,light natural or not that flickers or flashes(ex driving in a car passing trees can cause the sun to flicker,celing fans,the shimmer on shiny/reflective objects like a mirror,shimmer on water,strobes..etc.).What I would do to find out if you actually have PSE is to watch tv in a well lit room,reduce the brightness of the screen,and keep as far as back from the screen as possible.For other things in your environment you cant avoid like a fire alarm cover one of your eyes with your hand and try to avoid not being near the stimulus 0r wear blue tinted glasses.This reduced the glare of the stimulus your bothered by.0ne good thing to think positive about is when you have PSE it can get better overtime,at least thats what my neuro told me and sometimes people can out grow it.

For example when I was smaller I was severly affected with photosensitivity and because of it I had 20 - 30 sz a day.I was bothered by crt computers,crt tvs,flourescent lighting,strobes..etc.I was basically limited to only watching tv and movies from school at home,couldnt go to the movie theater bec of darkness,and had to be watched by a paraprofessional in school bec of the flourescent lighting and fire alarms,even though I wore tinted glases.It didnt help.Though as I got older I noticed my photosensitivity got better even according to my neurologist.My last EEG in 2009 it only shown 2 spikes!...better than the past EEG's.they were all over the place.To my neurologist he said your sz activity is improving,you may eventually be able to go to the movies,arcades..etc(which I did any way without his approval/soon as my parents noticed I got better).But,to answer your question I would definitly go see a neurologist or an epileptologist(a neurologist who only specializes in epilepsy).Migraines do overlap with epilepsy,aswell.People who have migraines that run in their family have a high increase risk of developing epilepsy or can have migraines with epilepsy too.0ne thing to remember is everyones different...with photosensitve triggers,treatments used for photosensitivity,and different seizures.There is a drug Depkote and Topamax that are used for migraines and seizures not sure you have tried them.To help you out I'll give you a few sites:

http://www.epilepsyfoundation.org/aboutepilepsy/seizures/photosensitivity/index.cfm

http://www.epilepsyfoundation.ning.org

http://www.epilepsymatters.com/english/faqphotosensitive.html

http://www.epilepsy.org.uk/info/photosensitive-epilepsy

Jessie90

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