Idiopathic intracranial hypertension

Posted , 3 users are following.

i was just diagnosed with Idiopathic intracranial hypertension today.. Anyone else have this? i was just put on diamox . Opthamologist says he doesnt think i will go blind but im so scared.. please help me 😦

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5 Replies

  • Posted

    yes I do. since 2014. The only thing I suffered from was pulsital tinnitus until last year. I needed my first brain surgery due to a csf leak in my sphenoid sinus and it was exposing a part of my brain. This august and September I have had stents placed in my left and right transverse sinuses due to stenosis caused by IIH also known as Pseudotumor cerebri. We will not know if its successful for another couple weeks. right now my headaches are worse than before. my eyesight got better with the stents and the tinnitus went away but the headaches and pressure still remain.

  • Posted

    I was diagnosed last September after having severe headaches and starting to lose my eye sight in the right eye from papilloedema and I was put on Diamox.

    I has side effects from the Diamox but didn't have too much of an issue dealing with them...some people have said they couldnt stand the effects. I just took them in stride.

    I was recently weened off my Diamox but I've still been having headaches, super tired, some tinnitus from time to time... so much better than I was a year ago but I still think I have a long way to go. I haven't been able to be physically active since I was diagnosed so I'm so much more weak than I've ever been. That's one of the most disappointing aspects for me since I used to run and lift... now, I still cant really even walk long distances or very fast without getting tired or getting a headache.

    I've been pretty lucky compared to other stories that I've read but its still tough... just take care if yourself and speak up about what you're feeling. Don't let your doctors brush you off. It's your body and you know when something isn't right. I'd been telling my doctor that I thought something was wrong for two years before I went somewhere else because I was tired of being ignored. I'm sure it wouldn't have gotten as bad as it did if I had been less passive with getting someone to listen to me.

    Good luck!!

    • Posted

      wow. i was similar. ive been having symptoms for months and every single doctor blew me off and i kinda just gave up at one point and then one day i just decided i cant live like this. i know something is wrong and someone needs to tell me what. so i emailed an opthamologist and told him my symptoms. he booked me for two weeks later and even said to me after looking at records he didnt think hed find anything. and then after looking in them for about less then a minute hes just like "have you ever heard of idiopathic intracraniel hypertension? and im like wow. i googled my symptoms once and that actually came up and i brought it up to my doctor but he said it wasnt that because its so rare.. I see my doctor in a week. I cant wait to look at him and just say " i told you so. You said i was making these symptoms up and everyone experienced them and i just had anxiety " !!!!

    • Posted

      im on diamox right now . Side effects are HORRIBLE. But if it works ill deal with it. Doc said im lucky because i caught it early and my swelling is very minimal

    • Posted

      "It's not that because it's rare"?! Seriously?! That's so frustrating... Uh, yeah, good idea. Rule it out cause it's uncommon...

      I refuse to go back and see the PCP I was seeing because she totally blew me off too. She would never listen to me. I would beg her to run tests and she wouldn't. I even went through some of my post-doctor appointment summaries in my insurance account and on one of the visits she even put that I was having a "depressive episode" ... Basically meaning my depression was leading me to conclude that something else was wrong... When really IIH is probably one of the causes of my depression >.<

      Once I started losing my vision I finally went to the eye doctor (which I didn't have insurance for but I was desperate) and he's the one that found my papilledema. Asked me if I'd been having a lot of headaches... "Oh yeah!" He called and Ophthalmologist he knows, said it was an emergency, and got me an appointment the next day. If it wasn't for him I'd still be arguing and on my way to permanent vision loss.

      It's such a shame that it has to come to a certain point for doctors to believe us. I'm sure there are some people that have a habit of being a hypochondriac but you'd think when someone has very specific complaints that at least something would be checked...

      Good luck with your Diamox! I know the symptoms are a b***h but if you can cope with them then it could very well help you a good bit. I think the two things I had the most struggle with was making food and drinks taste bad and the numbness and tingling in my hands, feet, and around my weird...

      We're here for you if you need any moral support! It's hard for the people around you to be sympathetic because you don't "look" sick. Sometimes I felt like people thought I was faking it. Don't let that discourage you. We are all still fighting so know you're not alone! ❤️

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