I just had to write this down, it's really odd.
I just found out yesterday that a cousin I don't really see that often.......well don't really see at all, was diagnosed with IIH only FOUR months ago! I was diagnosed just over ONE month ago! :shock: She found me on Facebook and couldn't believe what I'd been writing with regard to my recent issues, and then she dropped the bombshell.
She is my dad's-brothers-daughter.........is this condition genetic? Should I be concerned for my son's health?

Kerry

hi Kerry;
there are many cases of IIH running in families. if you ask my son's EX neurologist, he tells me IIH is not familial. and that my son doesn't have it. however my son's pressure is elevated also and I believe he has it; he has autism. and while my mother never has been tested, she has all the same symptoms I do which are all symptoms of IIH. I think the link in my family has to do with the craniofacial anatomy we inherited from my mother. so if your son looks like you, I would definitely watch him for problems. how old is he?

interesting that you and your cousin have it (you are both female) but it was inherited through both of your fathers who are brothers (both male). as if there is something protective about being male. there is one study showing that IIH is associated with sleep apnea and low testosterone in men. so will they (your father and uncle) get it as their testosterone drops and their sleep apnea worsens with age? just another link between IIH and sleep apnea, so don't ignore the possibility in you, even if you don't snore. any sleep problems at all and I would get tested.
Deb

Kerry,
The more I talk about having IIH and the more personal research I have done in my own family it turns out 3 other women also had this in my own family. I am positive that it runs in families after doing my own research. Keep us posted. I would like to start some research of my own in depth about the link between family members and this disease bc I don't think at present there is much to confirm this. However, I am positive it is a prominent problem. We are here for you! Keep us posted and anything you note that is similar symptom wise write them down to keep track.

Wow, it really does seem like I'm hearing more and more about multiple members of the same families having IIH. I always heard that there was no familial link, but who knows. For me personally, I am the only person on either side of my family (and in the known history of my family tree) who has/had IIH.

My sister was diagnosed 6 months ago with IIH, 23 years, after I was first diagnosed. We are seeing this more and more often now that there are other family members presenting with IIH. It hasn't been proven to be genetic as yet, but research is ongoing so I think in the future they will find that maybe it is.

it seems obvious that it WOULD be familial. what are some of the things that would increase ICP? venous stenosis, increased collapsibility of veins creating higher pressure in the cranial veins, altered cranial anatomy that might lead to the same (narrowing of the jugular foramen, pressure on the vein from the styloid process, craniosynostosis or other skull malformations) ALL anatomical problems, ALL inherited from our parents. oh, and of course, don't let me forget, sleep apnea (associated with IIH). which is caused by narrowing of the upper airway, this anatomical variation being inherited from our parents. most docs still don't realize OSA is familial but there are several papers showing it is. another thing which likely increases the risk of OSA is increased collapsibility of the tissues of the upper airway, caused by more stretchy connective tissue. this would also contribute to increased collapsibility of the cranial veins. I can imagine that this would also predispose someone to IIH if they become obese. I have not seen this theory anywhere, but it only makes sense: if there is more fatty tissue in the neck, it would crowd the jugular vein and lead to increased pressure in the venous system which would prevent normal CSF drainage. this is the same mechanism for how obesity increases the risk of OSA. in fact they will measure your neck circumference when you go to the sleep doctor. the increased fatty tissue compromises the airway and decreases its diameter.

it is amazing to me how little thought goes on for many doctors. they just do everything by rote and parrot what they have learned, information that is 20 yrs old. as a society we can only grow as fast as our slowest members. frustrating.

Deb

Just a reminder, to help with the research, please register with ihrf.