Who here has pseudotumor cerebri???

[bethaniet586]

I am just curious to see how many people have pseudotumor cerebri on this forum...?

[Cath278]

Can you believe its been almost a year since bethaniet first posted about IIH/PTC? At my last count there were 14 of us.We really should keep in touch, to share our experiences and maybe benefit from each others journeys. I know this site has been a God send for me.I dont know anyone who has this illness except me, in Ireland.( to the best of my knowledge!). This illness is a very difficult one to learn to deal with and with its myriad of symptoms, it is comforting to touch base with fellow sufferers. If I can help anyone, just drop me a line.I will do my best. Here's wishing you all a good day, Cath278.

[lundy101]

Another fellow ptc here. I have a lumbar shunt and it worked fine up until about 3 weeks ago. Had a lp and now my pressure is too low. So, now I am on another journey to fix me again.

[mamita00]

Hi to all the "new" ones I haven't met yet, I'm Kim. Sorry you're stuck in such a terrible club. And of course a big hello to my "old" friends too. I want to know, do any of you just suddenly get so tired that you can barely fight it? It comes on so suddenly any time, any where. I will just go right out and not realize it or remember falling asleep. Way freaky because it certainly puts a strain on driving or even holding my baby.

Also, to anyone with a shunt who was not in immediate danger- what made you make that leap? I know it may sound kinda silly considering....  I'm just so torn. So sick of feeling this way. Constant headache, living in sunglasses, neck pain/pressure. My medicines are really topping out, depakote at 1,000 mg, gabapentin 600 mg, and topamax 200 mg. This just doesn't end
.
Anyhow, that's me in a nutshell at this moment. I hope everyone else is having a better go than I am. ~ Hugs~ Kim

[Meisja]

I just want to say a quick thank you for the warm welcome! I'll be back to answer the questions and say hi when I'm feeling a little better. I have at least 3 more days coming up this week at the hospital- yay! (ugh)

Take care, all.

[Henricogirl]

Thanks for the tip about the ADA. I already had an IEP before this whole mess stared so we put some accomedations on there. And yes i am  phreakin' hilarious I find it better to put humer into it. Its the only way I can go day to day without being bumd out. Also its just in my make-up as Tori. Im always laughing it off. One day I cant get out of bed the next Im joking about it with my freinds.  Its how I cope. Plus, welcome Isn't this place great so many people who really understand and dont feel sorry for you.

[Cath278]

Welcome Meisja to our commuity! This is a great site for support and information.I admire your courage and   I second all that TJRasta has said and if you need any thing, give me a call. Cath278