NeuroTalk Support Groups - Newly Diagnosed w/ Pseudotumor Cerebri

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- - Newly Diagnosed w/ Pseudotumor Cerebri (https://www.neurotalk.org/new-member-introductions/197716-newly-diagnosed-pseudotumor-cerebri.html)

Newly Diagnosed w/ Pseudotumor Cerebri

Hoping to find people who know more about what this is like. My spouse and family are very supportive. I was fortunate that as soon as the headaches started, I assumed a vision issue because of some intermittent double vision and I was diagnosed early.

I just started Acetazolamide. My concern is that I've heard the condition can come back after treatment and pregnancy can be a trigger. I would like to have children, so hoping to hear from people with this diagnosis who later had children and what issues (if any) came up.

http://neurotalk.psychcentral.com/pi...pictureid=7746
:hug: :welcome_sign: To NeuroTalk! :hug:

Nice to meet you!!

http://dl4.glitter-graphics.net/pub/...cipnj00p92.jpg

PTC_2013

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Quote:

Originally Posted by PTC_2013 (Post 1032311)

Hey PTC_2013, do you use facebook? There are several support groups especially for Pseudotumor cerebri (idiopathic intracranial hypertension) patients, who would be glad to help you.

**

There are many others.

I am from Germany. We just founded an association for this disease to increase awareness, competence and research on this topic.

Keep your head up
Andreas

Quote:

Originally Posted by PTC_2013 (Post 1032311)

I had my tubes tied but from what I learned and heard from three neurologists is this condition does not resolve on it's own wiithout treatment. That can be medication.. Like DIAMOX, LASIX or even prednisone. Or they can do serial spinal taps ( weekly) to keep the pressure down.. if all that fails, then you get a shunt. this condition is a threat to your eyesight! Don't ignore it.. FYI Just becuz a CT or MrI scan is clean does not mean you don't have it.. a spinal tap can check the pressure. I have been in the ER many times with what I call a sickening headache where I am also very dizzy and vomit alot. Yes it can come back... and very obese woman are prone to it. I have it but thats becuz I have brain defects.