wishing you all the health in the world little bear and that you can can live a healthy life soon once youve got rid of these terrible illness! IH is bad enough without a tumor so i cant imagine what your going through at the moment!
the shunts dont apeal to me at all as 9 times out of 10 they have bad reviews! a doctor i saw recently even admitted that ive done the right thing to refuse it too! diamox didnt do it for me either x
I have Chronic Intracranial Hypertension and a brain tumor (Craniophyignoma) I was also underweight and 14 when I was diagnosed. The VP shunts work 100000x's better than the LP shunts. And Diamox sucks :(
your right it does need propper research and the rest of it but this isnt a debate this is my opinion, if it works for me how many others could it work for? yet everone diagnosed with IH gets told there is no cure! well for some there is!
It's great that Octreotide has helped you. BUT, it is by NO MEANS a cure for everyone! I know several people that have tried Octreotide and ended up in a worse situation. Intracranial Hypertension is a VERY individualized illness, and what works for one patient may make another much, much worse. I urge ANYONE looking into Octreotide injections to study up on it...ask questions!! There is a large IH community on Facebook with many support groups. Please seek us out and join! You won't be sorry!
wishing you all the health in the world little bear and that you can can live a healthy life soon once youve got rid of these terrible illness! IH is bad enough without a tumor so i cant imagine what your going through at the moment!
the shunts dont apeal to me at all as 9 times out of 10 they have bad reviews! a doctor i saw recently even admitted that ive done the right thing to refuse it too! diamox didnt do it for me either x
TheKeeley86 1 month ago
I have Chronic Intracranial Hypertension and a brain tumor (Craniophyignoma) I was also underweight and 14 when I was diagnosed. The VP shunts work 100000x's better than the LP shunts. And Diamox sucks :(
Littlebear037 1 month ago
your right it does need propper research and the rest of it but this isnt a debate this is my opinion, if it works for me how many others could it work for? yet everone diagnosed with IH gets told there is no cure! well for some there is!
TheKeeley86 2 months ago
Totally agree with the last statement! It is by NO MEANS a cure for everyone! It needs proper research and is a totally unproven medication to date.
thefriendsbenefit 2 months ago
It's great that Octreotide has helped you. BUT, it is by NO MEANS a cure for everyone! I know several people that have tried Octreotide and ended up in a worse situation. Intracranial Hypertension is a VERY individualized illness, and what works for one patient may make another much, much worse. I urge ANYONE looking into Octreotide injections to study up on it...ask questions!! There is a large IH community on Facebook with many support groups. Please seek us out and join! You won't be sorry!
IHateIH 5 months ago