I alluded to this in my last post on a different thread. if you landed on your face, what happened to your jaw? could it have caused a change in jaw posture that affected your airway? also, if it damaged your cervical spine, a change in neck posture could affect your airway and your jugular venous resistance which could affect ICP.

you don't have to be obese to have sleep apnea. you can do everything else right but if you have sleep apnea it fouls everything up.

my son also has IIH. he was diagnosed at age 4. he has improved every time we did something for his sleep apnea. after each LP when the pressure dropped he would suddenly appear significantly less autistic. expanding his maxilla and making room for his tongue made a huge difference for him. He went from that deer in the headlights stare or appearing to be drugged, in pictures, to huge smiles and eye contact with the camera after the expansion. I have not seen results with osteopathic adjustments for myself but he is dependent on them. he says he feels the same after an adjustment as he does after an LP. it seems to be doing something to improve CSF drainage, is all I can think. you have to go to someone who does osteopathy "in the cranial field" almost 100% of their practice. you can find someone on the website cranialacademy.org

Sophiasmom06- I'm really eager to find common reasons why we suffer with IIH! Reading that your son, age four has it, is there any thought process as to "why" he suffers with this? As moms, we are eager to find answers, what has been your answer, or your inclination as to why he could have IIH? I've felt lost for so long, not having any answers, until the chiro made me think about my timeline and when things occurred, I'm not saying he is completely right yet, or wrong, but eager to just get some answers! Having this long wordage "diagnosis" without reasoning is crazy! I never took the birth control they could be linking it too, nor the antibiotic, and I'm guesing your son hasn't either... I think if we can find cause, we can find healing. And that is what I desire!

Sleep apnea, I hadn't thought of that! Maybe I'll steal my husbands breathing machine he uses for sleep apnea and give it a try! Thank you for the tip!

take a look at some of these papers:
https://independent.academia.edu/DeborahWardly

My mother has the same symptoms but won't get an LP. I don't know that it's the same thing for you or others, but in my family it seems to be a pattern that I think is related to our jaw anatomy.

you may or may not get relief from your husband's CPAP. CPAP made me worse. it is the pressure you have to breathe out against, that actually increases ICP, via a Valsalva. I did better with BiPAP, but ultimately it was a catch 22. This is why I had the jaw surgery. and my OSA was not eliminated, but I went into remission after 1 cm advancement of my mandible. I think that my tongue was compressing my jugular veins. I doubt there is a doctor on this planet who understands this. so I know you are eager to find answers, but unfortunately we still don't know a lot about this. but I do think that investigating OSA completely is important. I think that it is always a factor, even if it is not the only factor.

Hearing all of the stories, it has been making me think of what happened when mine started. The only thing I can remember is that I was diagnosed with fibromyalgia and RA not that long before being diagnosed with IIH. I have TMJ, and have had it my whole life, and I have an extra mandible bone. I can't afford jaw surgery so that is not an option for me to find out if that would work. I did get the VP shunt though because I couldn't get the pressure down enough to get the optic nerve swelling down. I have a CPAP, but I didn't get it until a few years after my shunt was placed. I don't think weight is the culprit, but it could have something to do with this starting up for people. I was told by a trial study dr that since I slowed down my activity after the military, that probably made my body to start attacking itself. When it rains, it pours. I haven't been the same since I was diagnosed with IIH, I had permanent vision loss in spots, which sucks.
I wish, just like every other sufferer, that they would learn more about this issue. I do see how it is so complex because there is no one person that is the same. Some people get great results from diamox, and others it doesn't affect. Some go into remission for a while, while others get no relief without a shunt. I so wish there was a way to figure out what causes this, that way no one has to deal with this, but it will take a lot of time. I just hope for the future, the treatment will get better, and the medical costs for it will decrease. I wouldn't have gotten treatment if there wasn't a trial study, I just wouldnt have had any way to afford the appointments, let alone the treatments.