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Otreotide

Funny enough, i have a friend with it, considering it is so rare and it affects her sight worse than mine esp night driving. I have never had headaches (my doc couldn't believe that) but it originally started with lightening flashes in the side of my vision then progressed to me waking up blind in one eye and the vision would gradually return from like a pinpoint out until it was back to normal.
Like i say, the first time it took about three LPs to get it down and boy, was i sick! Couldnt stand upright for about a week without being sick but after that i've had two more episodes but years apart luckily. I was told overweight and female seems the criteria for BIH but no explanation why. Hormonal would make sense, originally they just treated me with diuretics and told me to go on a diet - and here i am 20 years later about 4 stone heavier than i was then ~sigh~. I'm seeing my friend next week, will pass the info on tho, thanks for posting :)
 
ano - im about 8 stone heavier than when they diagnosed me - its makes it more dificult because you know you have got too! i never heard of the condition b4 i got it and since i was diagnosed turns out a few ppl i know have got it too! pass the word on hun and tell her to not give up even if her doctor tells her its not possable - it is! and keep pushing for it! xxx
 
Keeley I hope the drug works for you and enables you to avoid the shunt.

love and hugs
Rebirthxx
 
Keeley, I'm hoping you are getting on with this injection ok...

I didn't want to inject either long term, but said, what the heck if it helps then we have to do it.

We are with you and keep us posted and you know we are all with you.... we'll get you through and your wls.

Love and hugs xxx
 
thanks bev! your like my guiding angel hun and im soo glad ive come to know you! luv ya loads! thanks for being you xxxxxxxxxxx
im getting on ok with the injection i think - its causing problems with my number 2s yesterday, i was getting belly ache like when you get the runs but when i went it wasnt runny - it was yellow and hurt my bum for abit after - sorry for the info, lol but its not right at all! not been today tho so that might have passed too - felt abit sick this morning and my head went funny when i had the injection earlier but im ok now! dunno if its wishfull thinking but my eyes seem abit clearer!
 
dunno if its wishfull thinking but my eyes seem abit clearer!
:clap: Lets hope :D
If it is affecting the pressure already, then the edges of your retinas may be relaxing back again instead of rolling but that's quick...maybe it is that effective and why 6 months treatment can cure it,,,, excellent news.
How are they going to monitor it, more LPs or just rely on your judgement re your eyesight for the moment? Do you go for field of vision tests?
My neurologist discharged me a couple of years ago, basically saying that i'm the best judge of whether i am getting symptoms and just to come back if i thought there was a problem, better than them doing unnecessary LPs with the risks. I thought that was very sensible approach :)

BTW told my friend about the drug, sent her that neuro article about it being sucessful in 24/26 patients and as she has just moved to Bristol, she has to re-register at the local hosptial so is going to take it with her. So thanks again (from her) x
 
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