My name is Linda and I and I have got to say I am living in limbo at the moment. I went for a routine eye test and because I was having some trouble focusing in February and was told that my optic nerve was swollen. I was then referred to Opthamology at our local hospital where I ended up been admitted for an emergency CT scan. As you can imagine I spent the afternoon thinking everything horrible that I could possibly have wrong with me. I was then told they had not found anything but because there was obviously something that was causing my optic nerve to swell and they were going to do a lumbar puncture to check pressure on my spine. Everything went fine with the lumbar puncture, in fact my vision cleared quite dramatically afterwards. My pressure was 36 when they did the lumbar puncture and I was sent home the same night and put on a course of Diamox and told I would be getting a Neurologists appointment in the next few weeks. I was initially put on 500mg for a week then the course has been upped to 100mg. I have been suffering from quite a lot of the side effects pins and needles. tiredness, wooshing in the ears. I am aware that these can all be symptoms of IIH but considering I did not have any of these prior to the lumbar puncture I am assuming that it is the tablets. Unfortunately I am not seeing the Neurologist until 28 May as they have said that they did everything they could in hospital. All the doctors that dealt with me in hospital were fantastic but I never actually saw a Neurologist so apart from speaking to my own doctor about this I have not had anyone sit me down and talk me through this. My own doctor has been brilliant and he has signed me off sick until after I have seen the Neurologist. I have so many questions and everything I have found out about this illness is fro the internet including the fact that certain acne drugs can be a contributing factor, isotretinoin, which I took last year for 6 months. Although I have not officially being diagnosed with this illness, I think it is highly lightly what I have got but at this moment in time I cannot help wondering what the future holds for me, how long I am going to be off work, on Diamox and how I am going to manage to live with some of he side effects.

Hi Linda! Welcome to the group! I'm glad you found us and hope that you will find this site to be a great source of information and support. I know that I have!

Sorry to hear that you're having to wait such a long time to have your diagnosis confirmed by the neurologist. It sure sounds like IIH with the CT scan being clear and your opening pressure on the lumbar puncture being high ... and the fact that they've gone ahead and started you on Diamox. But I know it will be helpful when you can talk it all out with the specialist and get all of your questions answered.

Diamox is a tough medicine, I have to be honest with you. I've been on it for 2 and a half years now, and I'm grateful for it because it's done well for me in controlling the pressure. But the side effects can be a real pain! Recently I was able to decrease my dosage from 1500mg down to 1000mg and that has helped a lot with cutting down on the real bad side effects, like the balance and coordination problems. The pins and needles, I still have!

You are still in the early stages of starting the Diamox, and for me, it got somewhat easier with the fatigue and all, after I was on it for a while and my body adjusted to it. Hopefully it will be the same for you. I look forward to getting to know you.

Hi Linda! I have to agree.. I think you'll feel better once you're able to talk to the neurologist. There is a guide that can help you with that conversation in the Useful Guides and Print Outs section. It's encouraging that they moved so quickly with tests & medications, but I'm sure you'll feel better once diagnosis is confirmed & you know the treatment plan.

I think it's important to keep in mind that there are people that just have short term bouts with IIH & people that have successful treatments. I'm sure you've seen a lot of scary things online, so I think it's important to point out people who aren't suffering aren't generally posting on these sites..the results are a little skewed because most of us are also looking for answers.

It's also important to note that although we have similar stories IIH affects everyone very differently. I'd like to be able to tell you that if you do abc you'll get back to work in six weeks, but it all depends on your symptoms and response to treatment..it can be a little trial & error, so just take care of yourself & try to be patient.

We'll be here to support & guide you any way we can. There's a lot of information on this site or you can visit ihrfoundation.org for more in depth explanations. Feel free to post any questions or concerns & we'll do our best to help you. You can also send a private message to anyone of the moderators or administrative team.

Keep us posted & take care,
Julie