Idiopathic Intracranial Hypertension

Also known as

Pseudotumor Cerebri


My Story:

Headaches. Endless Headaches. Then I started getting blurry vision. I was getting dizzy too. Almost like I was getting ready to faint. I went to the doc, got some bloodwork done and was told: "Everything came back alright". So I lived with it. Then one day I went to Dr. Abraham, an Optometrist in Salt Lake City, Utah and the man I feel I owe my life too, or at least my sanity. He was very thorough in his examination and he found my eye-nerves to be elevated, which nobody had noticed prior to my visit to him. He started the wheels turning and I went from getting an MRI to an Ultrasound of the eye. I was told I might have a Brain Tumor. It was a very scary time of waiting and tests. Finally I was sent to the University Optomologist Department where I was introduced to Dr. Warner, a surgeon. She checked me out and finally gave me a Spinal Tab. I was told I had a condition called Idiopathic Intracranial Hypertension.

Pseudotumor is rare, striking one of 100,000 people. Noone knows what it is caused from and nobody knows how to get rid of it. Pills would help. So I took something called Diamox and I started feeling better almost immediately. Some people aren't that lucky and need shunts put in. I was actually extremely lucky, cause if I watch what meds I take, I can keep it in remission.

I haven't had to take meds for this condition in a few years. I have had some symptoms, but when I start feeling things, I'm usually on some type of new med and I just quit taking it. There's not a lot known about this disease and a lot of docs really don't know what meds are causing it, so you have to be your own best advocate. Here in La Crosse they know very little about the condition and have prescribed Diamox in the past, just believing me and having me make an appointment with the Optomologist here, who really doesn't know a whole lot about what is going on here either.
Be careful about what you eat. A lot of the diet products that are out there can cause a flare. And not just the ones with ephedrin in it either. Really, if you have this condition, anything that may increase fluid pressure in your body can possibly cause pressure buildup in your brain as well.


For more information check out these sites:

Pseudotumor caused by Birthcontrol lawsuits

The National Eye Institute on Pseudotumor


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