Hi my name is Carole I'm 52 and was finally told that I had IIH after 16 months of docs and test ended up going to the Mayo Clinic as the Docs at home had no clue I am learning everything I can to learn about this but somethings I haven't heard or read that other people have this problem I retain all the fluid through my whole body and I don't sweat anymore I am on a low sodium diet if I stay between 100 and 500 mg a day it helps I also watch my fluid intake I can tell if my pressure is high beccause I swell up around my eyes if its really bad my whole face swells along with my legs arms and stomache I'm on a 1000 mg of Diamox and it has helped with the dizziness and my center vision is better so right now I'm taking it one day at a time at least I know I'm not crazy although the docs made me feel that way I have great support from friends family and work so I guess I'm pretty lucky

Hi Carole and welcome to the group. I'm so happy the Diamox seems to be working for you, and that you have great support at home and work. You have the right attitude about taking it one day at a time, that way it will make it easier to adapt to living with your IIH. You have a good awareness of what is happening to your body and that is a good first step to adapting.

I know what a relief it is when you finally get a diagnosis especially when it has taken such a long, long time to get there. I do have a problem with retaining fluid, and I do watch my salt intake which you are already doing. I don't know if this is an IIH thing, as women have all the hormonal things going on. Have you talked to your doctor about it?

When I was at the mayo clinic in Jan I asked my doc why I was so swollen I didn't even know who I was she said I don't know what you looked like before do you have a picture really you can't look at my face and see I'm sorry just sometimes I get so furstrated with the docs I have been told I have muscle spams put on pyscic drugs and the best was when my pressure in my head was so bad that it blew out my right ear drum and I had blood in both ears the ear nose throat doc said my ears were too messed up for him to do anything and gave me nexium for acid reflux really I try to stay positive but I haven't worked since dec now I'm waiting for the doc to give me a release so I can go back to work I think the retention has something to do with the IIH because if I eat to much sodium then my face sweels I get the pressure headaches and pressure in my ears I'm doing better the dizziness is way better still have some problems with thinking my central vision has come back but my perferell vision is still gone can't take the heat which sucks as summer is my favorite time of year so glad I found you all its hard to talk to your loved ones about this one I hate to worry them and its hard to understand unless you live it so all for listening

Hi Carole, and welcome to the forums.
I have problems too with swelling up. I don't add salt to anything that I eat and read labels to keep my sodium down, yet I swell up, all over, too. I take Lasix (Furosemide) in addition to the Diamox. I find that it really helps, gives me faster relief.
I hope that you are able to get your vision back. Sometimes it does reverse as the pressure goes down.
Keeping

Hi Carole, just wanted to add a quick welcome too! I also just found I have issues w/ water retention that affects my symptoms. I'm not sure it's related to IIH, but it seems a little too much of a coincidence. It's a side effect of a lot of meds and symptom for a lot of disorders, so I'm glad you're looking into it. A symptom log may help you sort things out. There are examples in Useful Guides and Print Outs.

I know it's taken a long time for you to get here, but hopefully you're on the right track now!

Julie

Hi Carole! Welcome to the group! Glad to have you with us! Glad that you found the Mayo Clinic and were able to get a proper diagnosis. I do notice fluid retention as a part of my symptoms, too. For me, it definitely follows a very "hormone-related" pattern each month, and my IIH symptoms tend to worsen along this same cycle as well. I'm afraid I haven't found any real great ways to control or relieve it, though like you, I do try to limit sodium. I think that does help some, when I can do it well.

*hugs* Welcome!