I Have Pseudotumor Cerebri

I was diagnosed with PTC Jan. 2010. I had had a headache for 2 weeks and went to the ER several times for some relief. Finally the last ER doctor sent me to a neurologist. After seeing him and the ophthalmologist they decided I had PTC. The started me on Diamox but my pressure was way to high so I had a LP and my headache was gone instantly. My headache was gone for about 2 1/2 weeks and then I started feeling the pressure again. Now I have started having headaches and am having my 2nd LP next week. They already have me taking 1000 mg of Diamox a day and it obviously is not helping. I am skeptical about getting a shunt b/c of everything I have read about them. Just wondering if there are any other treatments or specialist out there that I haven't read about. I really don't want to have a LP every month. Thanks for listening. 

abowron8 abowron8
26-30, F
3 Responses Feb 19, 2010

I know you don't feel lucky, but from all I read, you and I were both lucky to be correctly diagnosed in a relatively short time. I see doctors at Duke, in NC, and SO STRONGLY urge you to get there, or a Mayo Clinic, if you're not 100% confident in your current doctors. Also... I did (2000mg daily) Diamox, LP, OTC meds stuff for 2 solid years, and despite having needed 3 shunt revisions in 4months, I am very glad I finally decided to go that route. I encourage you to seek several opinions and not to give up until you have faith in your doctor and relief from your pain.

you and I are having the exact same experience, except I have had PTC for 2 years and was totally unaware, Im due for my 2nd LP soon. Im glad im not alone

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

Hello abowron8, I am sorry to hear that but believe it or not happy to see you were seemingly diagnosed so quickly. Being a long time shunt "owner" I have to say it sure beats those constant lp's!As far as treatments there are not so many choices and no specialists, other than neurologists and neuro opthalmologists who keep tabs on your symptoms/progress. (Read my story, Long time sufferer with PTC.) This is a tough disease, but you'll get through. <br />
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