Wow, what a great question! Many of our old posts in here address this very question for most of our many members.

In my case I'm suspecting some inflammatory/autoimmune process, like Lupus, Behcet's, etc. But, so far nothing's positive on blood tests. I have flare ups. Next time I have a really bad one I'll go into the doc and ask the tests be run again.

Various people have various guesses about their particular root cause - sleep apnea, venous stenosis, coagulation disorders, Chiari 0.... the list goes on and on.

I'd encourage you to go in and read old posts. The titles of the threads don't always reflect what's inside so it can some time and effort but it might be worth it. There's a wealth of info.

Hey Sea on the inflam comment. Have you tried vit k.?

I believe mine was brain gut.

I wish I knew.
I was knocked unconscious when I was 2.
I got a concussion from it.
Also, my mother says it's my dad's fault, he was physically abusive when I was a child.
I refuse to believe that it's my father's fault.
But, I've never had anything other than this.

I believe mine was from birth control and some acne medications.

canam, I'll tell you that my mother had many head injuries from abuse, as a child. but I didn't. I had a concussion, but my first IIH symptoms predate this. my son has not had a head injury. all 3 of us have IIH. it's familial in our case, therefore I don't think my mother's head injuries caused hers. and I think it's caused by our craniofacial anatomy. related to mouth breathing and long faces, compression of airway and neck structures as a result. sound familiar?

so, RN, I think in my family's case, it's related to sleep apnea but probably also neck/jaw anatomy and compression of the jugular veins. I don't have any proof of this, but we all look the same. everyone across generations with this face has had issues, whether mild or overt.

I also have had a host of autoimmune issues surfacing before my diagnosis. I had Sarcoidosis of the lungs which led to Preeclampsia during my pregnancy (some say it may be autoimmune). Around the time that the headaches began, my body erupted in a rash that as of now, has been diagnosed as Eczema. With it came the headaches, body aches and other discomforts.

It leveled out a bit a few months ago but is now coming back. Like SeaSprite, I suspect something autoimmune. I have several of the Lupus requirements for diagnosis, but not the 7 of 11 and I also don't have the blood work to back it.

Autoimmune conditions can sometimes hide for years. A person can have enough symptoms to suffer without the proof the doctors need to for diagnosis.

Good luck getting to the bottom of your's! Maybe you'll discover something that can help the rest of us : )

I am not sure how mine started, but I suspect mine might be secondary to an unknown infection. We were camping in the woods with friends and when we returned I had sinus symptoms, fever and a terrible headache and ear pain. My girlfriend and her son who camped with us also had headache and fever. Just tired. My doctor diagnosed sinus infection and said there was fluid in my ear. As the week went on and my headache and ear pain worsened, my doc upped the antibiotic to Levaquin. Then I broke out in shingles above my right eye and over to my temple. Add valtrex to the meds. I became lethargic, disorientated, slept the whole day, couldn't wake myself. Couldn't talk to anyone, it was too confusing. Could text my husband, who was away with the kids when I really bottomed out. I couldn't hit the right letters or spell correctly. A friend took me to the er where I spent 9 days. My first ct scan showed a shadowy area so an MRI was done. The shadowy area didn't show up and I was told my MRI was normal. Although when I received a copy of the report later it said there was a narrowing of the transverse venous sinus. It was 7 months later before I was properly diagnosed.
I have tested negative for Lyme and bird flu. Did I have a stroke? Some unknown virus? Did I have a mild case, possibly from sleep apnea, and the illness or meds pushed me over the edge? I don't know although I suspect something happened. The neuro ophthalmologist I saw also thinks mine is probably secondary. Levaquin is now known to increase cranial pressure. It's a mystery.

Nichole;
most women who have preeclampsia have sleep apnea.

I too had autoimmune disease with onset just before my IIH symptoms began. Graves disease. I have a positive ANA and anticardiolipin antibodies. they get better when I am on CPAP, interestingly.

take a look at these references on Lupus and IIH:
http://www.ncbi.nlm.nih.gov/pubmed/?term=18221986
http://www.ncbi.nlm.nih.gov/pubmed/?term=17479654
http://www.ncbi.nlm.nih.gov/pubmed/?term=8528233

Amber,

Acne medications (i.e., retinol products and antibiotics) are directly linked to IH, so your guess is probably correct.

Since retinol binds to fat cells (adipose tissue), and retinol has a direct link to IH, and since having extra fat cells (being overweight) has a direct link (in some unknown way) to IH, then it seems logical that theories regarding IH that have anything to do with something going wrong with respect to "fact cell binding" are all reasonable theories.

More than one researcher believes that the answer lies with something going wrong with retinol binding proteins (RBP), and as I recall, specifically RBP4 which is a retinol mediator.

Kind regards,
Cottages

Mine coincided with a 14-day course of Levaquin, so I strongly suspect this was the trigger. Since IIH is rare, I am sure I had a predisposition for the condition.

What were some of your other symptoms RN?

I've wondered about the vancomycin I was on for a little over a month, for hospital-acquired c-diff. It's not when symptoms started, but it is in the vicinity of when they began escalating.

What came before my diagnosis of IIH? Three sinus surguries,,lots of antibiotics and extreme stress.My ex husband left me right before my shunt was put in and I had to deal with all that while dealing with a troubled child and a divorce. I think when we have IIH,it makes us more vulnerable to any type of stressors.

Bolan, I had a very abrupt onset of being unable to concentrate properly, dizziness, feeling of weakness, slightly diminished sensation everywhere, mild Reynauds in my hands and feet, changes in vision that are hard to describe (things look off in a dimensional sort of way, busy visual environments are overwhelming, very sensitive to florescent lights which cause visual dimming), abnormal sensations (i.e. during a medical test the dr used an alcohol wipe which usually would feel cool but it felt hot to me), mild intermittent left sided chest pain, hot flashes...honestly, there are probably a few more little things I am not even thinking of! The most major symptom is fatigue - not that I need to sleep a lot, but have little energy and overexertion can make me feel a lot worse. It was and is very bizarre. I could literally tell you the day and time this all started. I had received the flu vaccine several weeks prior and until I find evidence to the contrary I will remain suspicious that it triggered a strange response in me.

I realize that a lot of these things could exist with IIH but a lot are also atypical. My IIH was diagnosed 18 months later and looking back I suspect I had had it for at least six months but am not sure when it started. I had an LP shortly after becoming ill in the first place and while OP was not measured, my CSF dripped out in a normal way. Given how I felt at that time compared with how I felt when IIH was diagnosed and OP was clearly high, I have a hard time believing IIH was the initial cause of my symptoms.

My NO diagnosed my visual symptoms as a separate disorder called ambient focal disorder. It is usually associated with brain injury, vestibular (inner ear) problems, and even chronic fatigue and autism. I asked her whether she thought mine was linked to IIH or my chronic fatigue and she thought the chronic fatigue - she said she has lots of patients with IIH and none of them have ambient focal d/o. If anyone else has the same type of visual problems I'd be very interested in hearing it!