Retinitis Pigmentosa Support Group

Does anyone have bad headaches or migraines associated with RP?

Since we have new members now...Anyone get headaches or migraines associated with RP? I get some related to stress, weather, or other factors, but what about from RP itself?

I've been getting headaches but mine aren't from the RP directly. I have major sinus and allergies problems this time of yr and the antibiotic eyedrops they have me on to make sure that whatever was causing whiteblood cells in my eye fluid has the drawback of increasing the eye pressure.

I've had doctors argue over this one with me. I have in the past had major migraines and every time they kick in is when I have a progression of vision loss. I don't know if it's the vision loss causing the headaches or the headaches causing the vision loss, but they do coincide with each other. Eye strain from vision loss is my guess. Who knows. I've had every Doctor tell me that RP is not painful but I beg to differ. I have eye pain a lot of times. Especially after an eye exam where they feel the need to shine the brightest light they can find in my eyes and stay there for an hour looking around in awe of the RP. I hate doctors, but I think you may have figured that one out already.LOL

Thanks Beth. I find that light causes my headaches including bright sunlight. When I have an eye exam and my eyes are dilated, the blurry vision causes bad headaches. I had the ERG (?) done years ago to confirm the diagnosis of RP, it caused a major migraine for days afterward. I saw a neurologist who recognized the fact that I have RP, but had a very strong opinion that my headaches and migraines definitely had nothing to do with RP. I quit seeing him.

I get headaches once or twice a year, not bad, just normal ones, but I feel they are triggered by a run of late nights with lack of sleep or a lack of water.

Lucky you, Rob, one or two a year.....