Hi,

Name's Hayley, I have been living with PTC/IIH for a little over a year as a diagnosed patient but I'm sure I probably had it for a few years before that. Because I had a lot of the signs and symptoms I have now but they were a lot worse because I didn't have treatment, not saying that today is to much better but at least I have some help, but I need more.
P.S. so their anyone out there that can help plz do

Hi Hayley, and welcome to the group! I would recommend having a look around the site..maybe start in the Useful Guides and Print Outs section. There is an information sheet called IIH A Little Bit of History that's a good resource for basic info. There are also guides for talking to people (friends, family, physicians) about your IIH, as well as examples for tracking and managing your IIH.

Feel free to post throughout the site. If you need assistance, you can also send a private message to any of the Admin or Moderators..we'll do our best to help you through this difficult and overwhelming time.

Take care,

Julie

Hi Hayley and a warm welcome to the group. Everyone here knows how you feel and what you're going through, as you read through other members introductions you'll see a common thread in them all, which may be familiar to you and your experience. We're here for you and will do all we can to support and help you.

Hi, Hayley,

Welcome to the board and sorry you have the IIH. However, you have come to a great support group that has many knowledgeable people. You will find a great deal of care and love here!

If you don't mind me asking, what are your primary symptoms and issues that cause you the most problems? My issues are predominantly eye-related and visual, with retrobulbar pain, trouble moving my eyes, and all kinds of visual distortions, including diplopia. I also struggle a lot with fatigue. What are your treatments? Diamox dominates, but so many cannot tolerate it. Have you found anything that seems to help more than others?

Again, welcome to the forum. Hopefully, we can help each other out and find some ways to manage this thing.

Hi Hayley, and ,



I hope you will drop in again and have a chat. We understand the frustration of dealing with PTC/IIH, so feel free to come by any time.

Hi Hayley! Welcome to the group! We're glad you've found us. I hope that you find this site to be a great source of information and support, as I do. Let us know if you have any questions or if you just need to vent ... we're here! *hugs*