idiopathic intarcranial hypertension

[mason127]

my daughter has been diagnosed with iih does this stay with her all her life

[aflorida79]

Hello, I was too recently diagnosed, after a long battle with different specialists that had no clue and made me feel like I was crazy, and even a recent coil embolization of my left jugular vein which was unnecessary.  I suggest you go to the IH foundation, where they can help you.  I am also including the email, they are wonderful and can direct you the right way and they respond within minutes.
There are also a few online support groups that have more information, this nasty condition is painful, and very little people, including doctors can understand it.  For once, you can look great in the outside, but you really feel like **** and hurting so much in the inside.  The medicines they give us, is not to actually cure this condition, its a medicine given to mountain climbers for altittude .... I really recommend you look into this research and support groups.  Good Luck!


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[Abhijeet Deshmukh, MD]

Hi.

Usually it takes a tumor or some disease of the lining of the brain to result in raised intracranial pressure. When we can not find a cause, a diagnosis of Idiopathic Intracranial Hypertension is given.

Your daughter must be having headaches, double vision and papilledema.

Most of the people suffering from IIH are cured with medicine. IIH usually has a benign course and does not need aggressive treatment. But it is a chronic condition. She will have to have a regular long term follow up.

Regards