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Topic: Octreotide (Read 475 times) |
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Charlie_C
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Hello
Has anyone heard of the drug Octreotide?
I've heard it is used to treat severe headaches which stem from a problem with a gland situated next to the hypothalmus.
I might get involved with a trial.
Any help?
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oringkid
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Maybe I am missing something, but how on earth would this help with CH?????
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nancyc
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Friends don't let friends post drunk on mbs......
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Re: Octreotide
« Reply #3 on: Apr 17th, 2002, 11:58am » |
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How can we explain anything we take works for chs? All I know is that the hypothalamus controls your hormones ...this drug is connected to your growth hormone...how does it work? Who knows? Who cares if it works and the side effects are not toxic....and when Dr. Goadsby does a study on something...my ears perk up...that is one Doc that is for clusterheads...and the only one to really study our condition..I think I am in love with him lol.... ;D
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Greg_A
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Sounds like Doc G is really serious on the CH stuff. Pretty much everything i read on the net he has some involvement with it.
Anything is worth a try. The answer may be right there in front of everyones nose and we dont know it.
Could be a certain spice, food, drink, med, something. After all look at all the different things people have tried and gotten some relief. Maybe if we combine a little bit of everything into a small pill or something we will be all set.
Who knows.....
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oringkid
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ok... so your saying that since it is used to curb the extra density causes by the am...gly thing (should have written it down huh? hehe) It might actually control the extra density that Dr. Goadsby describes that seems to be in the hypothalamus of a Cluster sufferer?
Ok... I can see that. I guess I got hung up on the anti-diarrhea part of the drug.
But, I would imagine that it could cause some major clogging if you don't have diarrhea so you would have to use a laxative/stool softener in conjunction.
Charlie, did your doctor say whether this is being considered as a preventative, abortive or a (dare I say it?) cure?
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Charlie_C
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Oringkid et al
I've not gone through my doctor for this. I've got off my arse and got in touch with Dr Goadsby myself. Dr Matharu is working with him and is coordinating the trials. I'm to get in touch when the next episode begins, and not take any meds other than O2 or Imigran injections.
I think it's going to be used as an alternative to Imigran. Let's keep those fingers crossed. I don't want another bout too soon, but I really want to see whether this stuff works!
As for the workings of the drug - I dont' think even they know, it's testing a theory based on some pretty sensible assumptions.
you're right about Goadsby though, he seems to be the fella.
Miraculous cure? I laugh in the face of a miracle cure - or rather I snicker quietly behind its back secretly believing it to be possible....
take care
Charlie
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oringkid
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Wow, I hope it works! Course I don't want you to go back in cycle just to try it though!
It will be interesting to see how/if it works.
Is there a specific place that Dr. G posts his findings? I would imagine if they are doing this clinical trial that they are going to have some info...
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Charlie_C
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I think you just have to keep your eye on this space. If you pu this name in to a google search, you'll find a lot. Or if you search through University college London, and their neurology dept, there'll be more.
Don't think we can hold our breath that long, but it's usefu l to remain as positive as possible!
Hope you stay well and thank fo rthe sentiments!
Charlie
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Linda T
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Re: Octreotide
« Reply #9 on: Apr 24th, 2002, 6:58pm » |
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Hey Charlie - good going! Just wanted to post a quick note to wish you luck. I too, of course, don't want you to go into cycle before your time, but I do ask that you keep us posted. Sounds interesting.
As always, PFDAN to all Linda T.
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What a long, strange trip it's been!
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