my brother's dog recently had a flu shot and is now chronically ill in a similar way. did you develop autoantibodies? they think his condition is autoimmune. I have 3 different kinds of autoantibodies, and my son has IIH and has autoantibodies to his brain endothelial cells. interestingly we tested this because it is something seen in autism (he has) and in mothers of autistic kids. so I assume I have these antibodies also but the test is not covered by insurance and they still don't understand what it really means or what to do with the results. but endothelial cells are in the arachnoid granulations. makes me wonder if this may be an autoimmune cause of poor CSF drainage. it might explain my dramatic response to prednisone, that some on here also have but others don't. but I know it is only one piece to the puzzle. the biggest piece was OSA. btw I don't believe in "chronic fatigue". it's either from your IIH or your OSA or a combination of both.

hi there. i believe mine started from birth control pills/nyquil. i took bc pills and on day two or so was when the major headaches began. then i caught a cold, took nyquil and that made it ten times worse. even now after 20 years if i take any cold medication it increases the head pain. i'm also unable to take antibiotics and vitamins. they both increase the pressure significantly.

RN- I don't know if this is what you mean in regards to visual problems being off in a dimensional way but... when I was having visual disturbances one of the problems I had was like watching a 3d movie. Luckily this didn't happen often but it was very strange when it did! For example, I was vacuuming the carpet at my work at the end of the night and a small part of the carpet looked like it was raised up, like it was popping out from the rest of the carpet. Mostly though I just had flashing lights and tunnel vision upon waking. The "3d" thing was not an everyday problem.

I always told the NO about the visual disturbance, I called it Alice in wonderland, when it happened it was as if I was looking out of magnified lab goggles. Weird and disturbing isnt it.

What you are describing can possibly be a type of simple partial seizure. They do call it "Alice in Wonderland Syndrome" A seizure typically lasts under 5 minutes then goes away.

I remember we've talked about that in the past Sea, this only happened to me while I was symptomatic with IH. Its been over 2 years now since iI've experienced it. However, if it is seizure it changed because itis now the sensation of a memory trying to surface, then burnt rubber smell, and ends with disturbed feelings for hours to days.

Oh forgot to mention, last night I ate spaghetti with sausage, whooshing visited me. Food really makes a difference in my life. I knew better eating it, but thought I would experiment to see if eating foods I once did would make me still feel bad. They do!

sophiasmom, sorry to hear about the dog! I tested positive for autoantibodies to myelin protein zero and was borderline for collagenesterase. Both of which have been seen in autoimmune inner ear disease, though the relationship is still being studied. Those are the only two I tested positive for though there are certainly a lot that I haven't been tested for. That is interesting about that autoantibodies you and your son have...hmm. It's funny how young the field of medicine really is in the scheme of things, there is so much we don't know or understand yet.

When you say you don't believe in chronic fatigue, I'm assuming you mean chronic fatigue syndrome? I do not have that diagnosis, I reference chronic fatigue as a symptom rather than a diagnosis. An unfortunately symptom that exists in thousands of illnesses, ugh. It is my most troubling symptom actually.

Sounds like others have "weird" visual symptoms too, I wouldn't quite describe mine as 3D or Alice in Wonderland but honestly, I don't know how to describe it. My visual issue is constant rather than intermittent so maybe if I had episode of normal vision it would be easier for me to compare and quantify.

RN,just reading over these post and was wondering how to explain these symptoms to a doctor,without sounding totally looney. Sea also mentioned this strange sensations. Here is how I have been feeling for almost a MONTH! It is almost a feeling of being drugged. When I move,especially walking,I almost feel as if I am kinda floating. Also,my depth perception is off. When I go around corners,I have been bumping into the wall. Not dizzy,just not judging space right. My hearing is really messed up,as the tinnitis is very loud,but also am hearing or perceiving vibrations strangely. I almost have a spinning sensation,without the dizziness. It is very difficult to explain,but it has been awful.

yeah I don't believe in CFS. I think that many of the diagnoses that include fatigue are actually secondary to OSA, but no one knows. so it's probably not thousands. it's probably a handful outside of OSA/IIH. think about it. so the fatigue after having a case of mononucleosis.... isn't it likely it's due to sudden onset of worse OSA because of the tonsillar hypertrophy?

Sasha--- I had to go to 7 doctors to get a diagnosis and going over my symptoms everytime was torture!!! They all looked at me like I was crazy except for the ophthalmologist. (I was going to docs for the visual problems only as I've had headaches all my life) so everytime I talked about flashing lights and 3d vision they were like ok, hmmm. The ophthalmologist was really nice though, she was like trust me I've heard it all, nothing sounds crazy!