Hi everyone!!

My name is Katie. I am 26 and I was diagnosed with PTC in August. What a roller coaster ride these last couple of months have been!!

In April/May, I started having issues with my vision. I figured it was stress due to life and tried my best to ignore it. When it got worse, I went to my eye doctor and he sent me to a specialist. The specialist confirmed that both of my optic nerves were swollen and could be because of different reasons. I had an MRI done and it was fine. So, I went to see a neurologist. After the first opening pressure reading of over 30, I was dianosed with PTC and put on diamox.

I have had two more LP. The second one resulted in a CSF leak and bed rest for a week. The third LP was good. Opening pressure was 23 and I don't have to see my neurologist til January and the swelling in my optic nerves is gone for now. 1000 mg of diamox a day seems to be the ticket.

I am slowing trying to get back to a "normal" life, whatever that is. In January, we start talking about reducing the diamox and that's got me a little worried but I will cross that bridge when I get there!

Hi Katie, and ,

Glad to hear that you are having good luck on the Diamox. I would be a little hesitant about cutting back so soon too. Having IIH is not something that ever goes away completely. It can go into remission, and for many, many years at a time, but we have to maintain a watchful eye. If your doc absolutely insists on cutting back on the Diamox in January, see if they will let you do it very gradually and by little amounts at a time. So often we have heard from others who were doing fine and then cut back on their meds only to have the IIH come roaring back and you end up chasing your tail.

By the way, the opening pressure numbers are merely a guideline. My opening pressures have been between 22 and 24 and I have IIH. With my programmable shunt valve, we have found that even 13 was too high and dropped the pressure even lower. My headaches have finally stopped!! My valve is set at 9, and I still take 250 mg of Diamox everyday.

Glad you were able to get that leak stopped. Having low pressure can be even worse than high for symptoms.

Hi Katie, welcome to the group! I'm glad to hear they've been able to stop the swelling and get things under control w/ Diamox. I agree w/ Linda and would be leery about reducing the Diamox too soon. It's the reason your vision and symptoms are under control, so no need to make any changes unless you're having a lot of side effects or something. I would definitely mention it, if your neurologist suggests taking you off the Diamox again.

You may want to check the Useful Guides and Printouts section for ideas on how to speak w/ your neurologist. Take a look around the site and let us know if you have any questions or concerns. We'll do our best to help you!

Take care,
Julie