Hi, just wanted to say hello as have just been diagnosed and wanting to find out about the condition, what to expect from treatment and quality of life

I was referred to ophthalmologist after the optomotrist identified papilloedema. While I have had some headaches and visual problems, they were not so much that I was worried. Since then, I have had numerous tests and scans, and yesterday LP with an opening pressure of 28mmH2O. MRI booked for next week and started on Diamox (hating the SE).

The diagnosis has been a bit of a scary time, but look forward to getting to know more about IIH and talking to people who are also living with the condition

Julia

Hi Julia;
welcome to the site.  there's lots of information here, and hopefully one of us will be around to answer any questions you have as they come up.  sorry about your diagnosis, I hope things go smoothly to bring your papilledema down.
Deb

Thanks Deb, me too

Hi Julia, welcome to the forum! The site is full of a lot of information, so check it out and let us know if you have any questions. You may want to start with the Useful Booklets and Guides in Living with IIH because there is a lot of information regarding the disease, treatments, etc.

I hope the MRI goes well and you adjust to side effects soon.

Take care,
Julie

Hey everyone, 
I am from Calgary, Alberta in Canada. I have never heard of this condition until I was diagnosed with it. I am still learning and scared, I just came across the website and I am excited to start learning and connect.
I was just diagnosed in the middle of November. My story is fast one, and all my symptoms happened in just a week and were severe. On Friday November 3, I lost a lot of my vision was blurry, i was seeing double and needed my husband's support for everything.The week prior I was dealing with lots of neck and back pain which I thought was just stress. So back to the Friday, I just seen a regular optomotrist who referred who referred me to a specialist. I was told not to worry and to just go home with self care. I should have went to the emergency but i waited until Monday in which the specialist called right away and told me to come, he did some tests and mentioned the term IIH to me but told me i need to be in the hospital . So I went to one hospital who did just a CT scan and ruled out tumors , and they did a Lumbar Puncture to try and take some pressure off my eyes and neck. My outgoing fluid was 59, the neuro student said that is one of the highest he has seen. They discharged me which was a mistake, they should have kept me but I was back and my vision went blurry again and the pain in my neck and shoulders was back. I had been referred to by a neuro opthalmologist who is currently still active with me and seeing me regular. So he admitted be to a different hospital with a better neuro team. They gave me an MRI which confirmed IIH. I underwent a few Lumbar Punctures, some were unsuccessful and I was put on a high dose of diamox. I then was put on a lumbar drain for 2 days to speed up recovery on my eyes which by the way I could see again. So I am currently on diamox 3,000mg a day 1,500 morning and 1,500 night time. the only side effect is tiredness but it's not stopping me from getting things done. I am going to try the weightless, they say the cure is weightloss, which is easier said then done.

hi Jessica;
I'm so sorry for what you have been going through.  I'm glad you are able to tolerate the Diamox.  is the tiredness getting better the longer you take the Diamox?  I could never tolerate it.  I got better after jaw surgery for my sleep apnea.  FYI you may want to post your note in a new thread, rather than having it in someone else's.  It took me a few moments to realize you were not Julia.  anyway, is the Diamox keeping your vision protected?
Deb

Hi Jessica! Welcome to the forum, too. IIH is definitely an adjustment, but can be manageable for some. We do encourage our members to be as healthy as possible, but just be aware that weight loss is not a cure. It helps some people, but others, like me, gain weight following diagnosis. They focus on weight loss because the largest population affected by IIH are overweight women of child bearing years and it takes treatment out of their hands. Weight loss definitely doesn't hurt and can at least make managing symptoms a little easier.

Check the site and let us know if you have any questions. You can post a New Topic in each section.