I wanted to reach out to all of you and see how everyone is doing and what you'd like to see/get out of this group. I would love a supportive place for folks with our conditions that are working towards getting healthy.
Here we can introduce ourselves, our families, and diagnosis stories.
Hi, I have been an IIH sufferer for the past year, I was on Diamox but got taken off it and was told to continue with Nortriptyline to try and reduce the headaches. However, the Nortriptyline made me extremely tired and as a student nurse I just couldn't cope with the tiredness all the time. So know I am trying to lose…
I'm so happy to see people finding this group! I hope we can support each other during our health journeys and fighting this awful condition. As the group grows, which I find so bittersweet. I find myself in need of a moderator to help me out. If anyone is interested please let me know!
I can't remember Saturday (3 days ago). Sunday is spotty, mostly gone too. By yesterday, I was able to function well enough to work a simple job, although I kept forgetting things/transposing numbers, and was a bit off-balance. What happened? On Friday I tried to push through warning signs that I was spiking my…
Hi, I am 18, a freshman in college, and am engaged to be married first week in January of next year. Of course with a wedding coming up I want to loose weight to look better in my dress and in pictures, but also having PTC does not help. I have battled with it for over a year and it's like a constant battle that I can…
Hello All, I sincerely hope this group has been quiet due to lots of folks getting their IIH/PTC resolved. Seriously, I aspire to that for all of us. Meanwhile, it is -12 degrees F outside where I am, and will be staying cold for some time. Yesterday I was out for a lovely walk/jog, and though bundled up, really enjoying…
Good to see a group on here for IIH. I was diagnosed last week after doctors thinking that I had viral meningitis. CT scan, MRI an a lumbar puncture later and I was told I had Idiopathic Intracranial Hypertension. I have been prescribed 500mg diamox per day, the pins and needles in the hands definitely took a few days to…
I was diagnoised with PTC in November after suffering a long while with terrible debilitating headaches, vertigo, nausea, and blurred vision. I was finally evaluated by a neurologist and diagnoised. Since then I have been trying to lose weight, but it's difficult because exercise makes me nauseous and my head pounds. Do…
