Hi there, i was diagnosed with iih last year and still trying getting used to live with it. headaches every day, a horrible ringing in the ears, side effects from the diamox and the furosemide. and of course what frightens me most... the visual problems.
i don`t have an interesting story, the symptoms started about a month before i got the diagnosis. i had pain on both sides of my head, problems with walking and concentration, tinnitus, nausea and vomiting, i went to the ER when my vision started to disappear now and then, and when i saw something everything was covered with light spots of different colors swimming around before my eyes. the doctor on the ER did not examine me. and he just sent me home without even listening to my symptoms. i was scared of going blind since i sometimes lost my vision so i went to my usual doctor. she sendt me straight to the hospital where i got my diagnosis 4 days later. i am not stabilized and i am going up and down on my med. doses.
i really dont know what to write, but just ask!
i just dont want to be alone with this disease anymore. i have never met anyone with the same diagnosis, so how can people around me understand?
i was glad when i found this group, and saw it was actually active! i already understand more after i have read other posts in this group

(i am sorry about my poor english writing, but i am from norway +a bit tired)

good night

Hello Linda and a very warm to you.

I think you have found the perfect place for help and understanding, especially from others who have been down this road before. And your English is very, very good!!

Your symptoms sound like "classic" IIH, as is your treatment. I am afraid that much of this is trial and error. The docs try different meds, different combos of meds, and usually as a last resort, surgery. And of course it takes time to keep adjusting the meds and waiting for our body's to get used to the changes, and so on and on it goes. The main thing is to stay after it. Don't just let it slide and forget about it, especially when your vision could be at risk.

There are many useful pamplets, handouts and thread on this website (Heidi has done such a fantastic job!!)
that you can have others look at to get a better understanding of what we are going through, even how to talk to your docs about IIH.

So, sleep well tonight, know that you are no longer alone, and because we are worldwide there is a good chance someone will be awake to chat with you, anytime. Feel free to chat or ask or rant and rave. We understand.

Hi Linda,



I know you will find a lot of useful information from the members of this site and the site administration/moderators.

I am not sure I have much to offer you personally, except to say that I am with you and what you are going through because I am going through it too. I visit this site fairly regularly just so I can try to keep up with what is going on....I may not comment but I sure do a lot of the reading.

I wanted to say welcome and I know how you feel about being alone.

Hang in there.

A very warm welcome to the group I am so very pleased you found us. Unfortunately you seem to have gone through the same horrible process leading to diagnosis that we've all experienced. thank goodness you're at least now on the right track and more importantly medication to treat your IIH.

We have lots of information and helpful booklets, and if there is anything you need to know and haven't seen it, just ask any of the Moderators or Admin, and we will find it for you even if we don't have it on our site.

We have a Group Huddle, where you can ask questions and even have a much needed rant. We encourage you to use our Medication Log and our Symptom Log, because it is a good way to not only monitor your symptoms, but to also be able to keep your Doctor up to date with what you're experiencing.

We also have Members Journals, which gives you the opportunity to write about how you feel with your illness, sort of like a blog. It can be very therapeutic.

Once again welcome, and I look forward to getting to know you.

Heidi

thanks to all of you for welcoming me like this! It really means a lot to me

Hi Linda, sorry I'm late to the party..just wanted to say hi and welcome. We're glad you found us..please feel free to browse the site and let us know if you have any questions.

Take care,
Julie