Hi Everyone,
My name is Pam, and I was diagnosed the begining of October. It's all been sort of a whirlwind since.
I had decided to see an Opthamologist because of disturbances in my vision, who then hit the alarm button and sent me the next day to some sort of specialist who again hit the alarm button and sent me to Ohio State Medical via the emergency department. Both of whom said nothing more than I had papilledema/ swollen optic nerves. After the drs at OSU poked and proded and scared me senseless, MRI after MRI after CT scan they did a LP to find my pressure 44. The next day (10/06 ) they performed the fenestration and sent me home on diamox. Since then they have increased it twice, and added and increased lasix. My second LP was done 11/19 and my pressure was between 25-27 and now the side effects are catching up. The N.O. I see thinks that the relationship between my pressure being high compared to the amount of medicine Im on is not helpful and I am currently waiting for the phone call from the neurosurgeons office for my consultation. Until then I have opted to lower the meds inorder to control some of the side effects and "tough" it out through the holidays the best I can.
It is nice to know that the "cluster migraines" and all the little symptoms I've had forever and complained about seperately do actually add up, but holy cow. Part of me is still like what.. the.. heck.. just.. happened! Now Im focusing on shunt options and educating myself where thats concerned.
So glad I found this site,
Pam

Hi Pam! Welcome to the group! Wow, it sounds like you've been through a lot with your IH in a short time. *hugs* It's good that you're taking the time to educate yourself and weigh the options that you have going forward. It can all be very overwhelming at first. Our "Recommendations for You" section here on the forums can be a great place to start - tons of great resources there! And of course, we're all here to share our experiences and answer any questions you may have. Let us know how we can be helpful. Glad you're here!!

Hi Pam,
This disease cab take you on a roller coaster ride good bad or ugly but this group of loving people make it so much easier to cope... they have made it so much easier for me and if you don't inboxes something im she someone here has an answer or has had a similar situation... mostly we rant laugh and cry.. hugs and welcome

Hi Pam and

There is lots of info available on this site to help you learn everything you ever wanted to know about IIH and then some!!

OSU is a great place to be to be treated. We attended a conference at Nationwide Childrens a couple of years ago and many of the speakers were from OSU. Hope your docs are able to come up with a good plan soon.

Hi Pam and a very warm welcome to the group, I'm glad you found us. I'm not surprised you're shellshocked by this whole thing, and in such a short space of time too. We have lots of information and helpful booklets, and our members are all wonderfully, very supportive and helpful.

In group huddle you can have a much needed rant when you want one, who better to rant to than us! We all understand how you feel and are here to support you all the way. Feel free to ask questions and as many of them as you need to.

Heidi

Thanks everyone I appreciate the warm welcome.