My name is Traci. I'm a mother of two (my son is 17 and daughter is almost 13) and have had IIH since 2007. I have had 4 lp's to drain fluid but am currently managing fairly well on diamox. I was recently diagnosed with stage 4 endometriosis and this presents some challenges to my IIH. I'm still visiting doctors to decide on the best treatment route for the endo but the hormones that are typically used will complicate the IIH. I'm not completely sure how it will turn out so I joined this forum to get more ideas and information. I live in a small rural area in the Upper Peninsula of Michigan and we don't have a lot of cutting edge information in medicine when it comes to disorders like this. I think in the states, we still call IIH by the old name, psuedotumor cerebri and that causes confusion in itself. Even nurses upon admission into the hospital think I have an actual brain tumor. *sigh*

Hello Traci and a welcome to the group. Our members are very friendly and supportive and understand the problems you face everyday with IIH. We have lots of helpful booklets which you can download and print, as well as other helpful information.

We encourage members to keep a medication log and symptom log, which not only helps you but will also give your Neurologist a complete account of what has been happening with you since they saw you last.

We also encourage members to join our members journal section where you can keep your own online journal to share with other members. We have Group Huddle so you can ask questions of other members or tell them how you feel by having a rant when you feel that you have no one who listens to you.

You have your IIH voice here, and we always listen. Feel free to ask questions and our Admin and Moderators will always point you in the right direction if you have any problems.

Good luck with the Endo process and hopefully it wont be problematic and aggravate the IIH.

Heidi

Hi Traci and

Has spring finally arrived in the UP? Just kidding!! I used to drive truck and unless it was July or August, I was prepared for cold winter nights when I drove up the UP. Beautiful country though!!

What a time of it you are having. I too hope that treating the endo doesn't affect the IIH (my docs also call it pseudotumor). Don't recall reading anyone else dealing with this. It doesn't surprise me though, with PCOS being linked with IIH, the hormorne factor seems to play a role. Perhaps the docs at IHRF in Oregon/Washington might have some suggestions. You may want to try to email them.

Wishing you the best.

Hi Traci! Sorry I'm so late in welcoming you to the group ... but better late than never, I suppose! We're glad you've found us and look forward to getting to know you. I'm in the US too, and I also find that most doctors call IIH "pseudotumor" ... seems like our whole country is behind the times on this! :P