Intracranial Hypertension

[crystalhanzelka]

I was diagnosed over a year ago with IH.  I have a friend who also has this.  She has had two brain bleeds with this disorder.  My question is how common is this?  How common is herniation?  My pressures have been 36,35,25,22,27.
I have stopped doing taps for a while because my optho-neuro feels it is not necessary at this point.  My optic nerves have reduced in swelling.  I just cannot get over the fear that at any moment my brain could start bleeding or herniate.  Is this a rare occurance or a common one.  Please help with any information you can.  Thank you for your time.
Crystal

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

While I can not predict the risks of intracranial hemorrhage in you, I will try to provide you with some useful information.

Intracranial hypertension (IH), can be either idiopathic (no identifiable cause) or less commonly can be secondary to an associated medical disorder (medication induced, certain diseases, which is rare). In some patients, abnormalities in the veins of the brain (called venous sinuses) such as narrowing or clots could potentially lead to bleeding, but this is also rare. Cerebral venous sinus abnormalities are best evaluated by an MRV.

Idiopathic IH is in general not considered to cause increased risk of mortality. Spontaneous hemorrhage in IH is rare, and while hemorrhage in patients with IH can occur as a complication of lumbar puncture, this is rare as well. Herniation is also very rare if the IH is really idiopathic, if there are no associated brain abnormalities; the risk of herniation following lumbar puncture is less than 1%.

IH itself is not associated with increased risk of seizures to my knowledge, though in cases when surgery is required for management of the IH, seizures may occur following surgery.

IH in general is not a common disorder, but in overweight/obese people, especially women, it is more common.

The most common and concerning complication of IH is optic nerve damage, and it sounds like you are on the right track seeing your eye doctor regularly.

Serial lumbar punctures are sometimes necessary, but in many patients, the treatment is with medications to decrease the amount of fluid around the brain, and these are mainly diuretics (such as acetazolamide or lasix) though other medications are also used (such as the seizure medication topamax, which acts to decrease the fluid produced in the brain, and in this case is not being used to treat or prevent seizures). If these medications are not effective, and optic nerve damage starts to appear, in some cases surgical management is necessary. Weight loss significantly improves IH.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[crystalhanzelka]

I also forgot to ask what are the chances of developing a seizure disorder with IH?  And is there an increased risk of mortality that you are aware of?
Youe service on here is invaluable.  Thank you!