Hello there, my name is Gina, and I have IIH. I have been recently diagnosed, but have been telling my doctors for over a year that this is what I have. They finally decided to listen to me. I guess I'm what is considered the "typical" patient... Female, 42, overweight, no apparent cause. But I have been having the strangest of reactions because of this, and also because of the meds they've put me on. I seem to be getting the "rare" side effects from the meds, and even some that no one has ever heard of before. That seems to be me. My goal in joining this group is to get support and information from other patients and caregivers/friends about what they've experienced because of this disorder. I have about a hundred questions that my doctors just can't answer because they've never been personally involved/affected by this disorder. I've gotten lots of "medical" info, but nothing personal, and I have no one to talk with about this. I hope I've found a place for coping and answers and friendship.

Hello Gina and a very warm you have indeed come to the right place. you have definitely been on a bit of a rollercoaster and no wonder your off. Unfortunately we all seem to have the same experience which considering all the information there now is, you'd think you'd want to go through all this. PErhaps they should have IIH doctor workshops so they can at least all be informed.

Feel free to ask as many questions as you need to, hopefully we can as many of them as we can, and get answers to some we might not, for you. We have lots of information in the Informational links section, as well as some guidesheets and helpful coping methods, that have been created based on experience.

We have also contacted Working With chronic Illnesses Inc, and they are happy to help IIH sufferers with free legal and insurance information and assistance. They don't just deal with people who are employed they deal with a lot of issues that sufferers have a hard time with such:

• How to get your own medical records.
• How to get and keep health insurance.
• How to get health insurance coverage for particular treatments, drugs, and/or therapies.
• How to get private disability insurance coverage.
• How to get Social Security Disability Income.
• How to assert your rights under the Americans with Disabilities Act.
• How to assert your rights under the Family and Medical Leave Act.
• How to ensure that schools accommodate students with chronic illnesses.



We are part of the IH Brain Pain Team and also in partnership with the Brain and Spine Foundation. So hopefully we have lots to offer, to help you have a better time of it with IIH.

Hi Gina very sorry to know what u r going thru and I wish u get back to normal asap.... Well my wife has been facing the same problem since May'11 she has lost her peripheral vision and the doctors have stopped any further meds saying that she cant improve anymore....

can u plz tell me what is ur condition now and what treatment u r going under....??????

many thanx
Shivang

Hello

and welcome, I've recently Joined this group and find it nice and relaxed :-) xx hope to catch up with you soon xxx