Hi Everyone So, I am newly diagnosed with IIH and I have a lot of questions. I have read so many stories of people suffering with their symptoms that I feel very lucky. I went to the optometrist on my 31st birthday last month to get contacts....a little treat to myself. I have worn glasses since I was a teen so I have had regular eye check ups. My last one was about 2.5 years ago. When they dilated my eyes the optometrist kept looking back and forth and finally said that something wasn't right with my optic nerves and he would like to do some additional testing. I said, sure why not. They did multiple tests, took some pictures, etc. My visual field test showed an increased blind spot and so the doctor asked if i would mind meeting with their neuro opthamologist. Again, I thought why not. There starts the drama :( After some more testing and looking in my eyes the neuro opthamologist diagnosed me with papilledema. He also did an ultrasound that same day to rule out pseudo papilledema and buried drusen. Happy B-day to me! He started talking about possible brain tumors and pseudo tumor cerebri and ordered an mri. I had to wait almost a week for my mri. I won't lie...I did a lot of crying during that week. I have two children and I was scared that i was going to have a brain tumor. Luckily my mri was normal, with the exception of an empty sella. So I was referred to a neurologist next. After visiting with the neuro they decided to do the spinal tap to confirm iih. My opening pressure was 430. This was two days ago and yesterday I was started on Diamox.
So, a little about myself. I am 31, overweight (with a ton of weight gained over past 8 years...a lot of yo yo weight..up and down). I do get headaches but nothing that i couldn't handle with a couple of extra strength excedrin. Over the past 4 months I have noticed my headaches don't go away like they used to and sometimes last for 2 days. I don't have any blurry vision but I do suffer from unexplained nausea and extreme fatigue.
And here is my problem. I am still convinced there is nothing wrong with me. I have been told that I need to fix this and I can't let it go...but I don't feel overly sick. Does anyone else feel like this? I know this medicine can cause side effects and I feel like I am going to make myself feel sicker. Is 430 even that high of a pressure? I am not trying to underplay it because I have read your stories and everyone has so many more symptoms than me....I keep telling myself maybe it was a mistake. Maybe the dr misdiagnosed the papilledema and maybe the empty sella has always been like that and maybe the person doing the lumbar puncture made a mistake...lol wishful thinking??? Well thats my story! Thanks for listening

Welcome to the group! I understand your reluctance if you're not feeling sick, but your vision has already been affected. If left untreated you could eventually lose your sight and develop more symptoms, so it's good they caught it early.

Everyone's "normal" is different, but it's usually between 100-200..yours was significantly high. Symptoms vary..some people just have pain, some just have visual disturbances. There is nausea, fatigue, and a whole slew of odd and/or debilitating symptoms, but everyone's different. It's one of the reasons that IIH is so difficult to treat.

There are people that respond well and only have one "episode" of IIH, so you can always hope that is your case. You have visual disturbances with swollen optic nerves, so they really just did the spinal tap to confirm the diagnosis. Losing weight can help to reverse symptoms for some, so maybe try the meds until you can lose some weight and see if it helps.

Check out the site and let us know if you have any questions..we'll do our best to help you figure it all out. I would start with the Useful Guides and Printouts section.


Julie