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Medlengough
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Arricept..Sympathetic Nerve Block...
« on: Oct 27th, 2002, 2:28pm »
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  Just thought I'd let everyone here know that my Doc started me  Arricept. Gave me three weeks worth till I see him again, so hope your prayers will be with me. I know I won't be able to judge it for at least two more weeks.
   The Sympathetic nerve block in the front of the neck couldn't be done because of the surgical staples that were mistakenly left there. Said the needle could hit the staples and run the needle into the carotid artery. Of course the staples being so close to the carotid artery and the oculosympathetic nerve is probably the problem causing the pain.
    Can't do an MRA because of the staples so I will be having a Doppler run on the Carotid arteries. Anyone ever been subscribed this? In the meantime, Doc is calling on one of his old students who is a surgeon to see if he will take the staples out. So far everyone we know doesn't want to take the task on. Doc said this guy owed him a few favors .
   I also asked about the Ocreatide, Human Growth Hormone suppressant, as a trial. I got a "maybe" answer, but of course it will have to wait until after the Arricept trial.
    Doc also gave me Methadone as we've tried everything else. I was really hopeful about it, but it doesn't seem to touch the pain , so it's staying pretty much in the bottle.
    I'll try to give an update in about a month.
         Sincerely,
         Medlengough
 
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rick
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Re: Arricept..Sympathetic Nerve Block...
« Reply #1 on: Oct 28th, 2002, 12:49am »
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Good luck.  I've been wondering for awhile about the effectiveness of Aricept after all the discussion on it earlier in the year.  Keep us posted, hopefully the results will be positive.
 
-Rick
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SteveY
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    srichards1958
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Re: Arricept..Sympathetic Nerve Block...
« Reply #2 on: Oct 28th, 2002, 9:45am »
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Re: Octreotide,
 
There was a recent study done at Queen Square in London on octreotide.
 
It's primary use is for killing the pain of pituitary gland tumors.
 
It was used as an abortive for CH, and those on the trial said it was as, or more effective than imitrex. It was given by self injection.
 
The pituitary gland controls the endocrine system and where is it? ???
 
Right next door to the hypothalamus, not near an extra cranial artery Danny. Wink
 
Steve
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Riccardo
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Re: Arricept..Sympathetic Nerve Block...
« Reply #3 on: Oct 29th, 2002, 8:20am »
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If you need some tips on Aricept, E-mail to Rodolfo (an Italian CH sufferer). He has used it for some years.
 
His E-mail is: hecht@mediapartners.it
 
Don't mind for Italian language, he knows English much better than me.....
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Riccardo OUCH-Italia
rodolfo
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Aricept brings hope - and a cure
« Reply #4 on: Oct 29th, 2002, 10:51am »
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you're the only other guy i know - besides me - that is trying Aricept.
this is my third year's experience and i believe this is the direction for the cure.
in my experience the dosage starts working at 10 mg. (effects with 5 mg are neglectable) and the effects are awesome in my view.
please please let me and all the others know how you are doing.
also imitrex works better in conjunction with Aricept.
you'll also need some sleeping drug to help you overcome the brain superactivity connected with Aricept.
Some mild benzodiazepin should help.
dreams will be very vivid.
 
pain (and fear) will subside.
 
i wish you all the best
 
a hug
 
rodolfo
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rick
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Re: Arricept..Sympathetic Nerve Block...
« Reply #5 on: Oct 29th, 2002, 11:02am »
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Rodolfo,
 
How many cycles have you successfully treated so far?
 
Peace,
 
-R
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rodolfo
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Re: Arricept..Sympathetic Nerve Block...
« Reply #6 on: Oct 29th, 2002, 11:22am »
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Rick:
 
difficult answer. I typically have 2 clusters per year (a giant one and a strong one) and many miniclusters in between.
although the cure says i should use aricept for 3 months and then stop for one, and so on all year long, what i have done is try to cure the "main" cluster, the monster one and live with the rest.
So i take Aricept 3 months and accept to suffer what is left to suffer. (I might upgrade this strategy to 6 mths per year now, given that the cure works well)
 
therefore the answer is i have cured three very powerful cycles sofar: dealing with the third in fact these days.
if you read my previous posts on the cure, I must say that i am receiving confirmation also this year.
 
Aricept is a "cure".  
 
hugs
 
rodolfo
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