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Topic: ARICEPT - There is hope! A cure at hand? (Read 1672 times) |
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rodolfo hecht lucari
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ARICEPT - There is hope! A cure at hand?
« on: Mar 12th, 2002, 10:19am » |
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Dear friends and collegue sufferers. I think I have really great news.
One year ago I learned that an Italian MD, Federigo Sicuteri (the most well known specialist in headaches in Forence, Italy) was using a medicin against the Alzheimer desease as a trial/test to cure migraine and, possibly, CH.
Lured by the perspective of no or little side effects, although discouraged by nearly 30 years of desperate and fruitless fight, I decided to give it a try.
The medicin is Aricept (donepezil hydrochloride) and is a reversible inhibitor of the enzyme acetylcholinesterase, normally used in the Alzheimer desease cure.
Last year I started the cure 15 days before the presumed beginning of the cluster (Aricept 5 mg once a day). The cluster appeared - although not in its full glory and might - after 20 days or so. The attacks were 50% less frequent and sort of decapitated but still pretty much there. After consulting the MD I went to Aricept 10mg once a day. The attacks were 70% less frequent and the decapitation affect always more astounding. I am sure You will understand and appreciate what I am telling you guys, but this is the miracle: the Cluster is there, but it is somehow tamed, each attack is milder and milder.
Last year's CH was over in 40 days (as opposed to 90-120) with maybe some 15-20 "big ones" (as opposed to 100 - 200 shocking attacks with plenty of use of Imitrex).
THIS YEAR NOW.
This year (CH expected in January) I meant to start the Aricept cure in late November, so to anticipate the crisis let's say by 45 days. But I had to undergo minor surgery in December, so I delayed the start of the cure until Jan 5 2002, and the CH had just started.
I went rapidly from 5 mg. to 10 mg. (in just 10 days, whilst the previous year I stayed with 5 mg. for over 45 days) and here are the results.
Difficult to explain, but I want you to let it dawn on you: this stuff works. In a week or so the attacks were already somewhat bearable, the peaks decapitated in a spectacular fashion: CH nearly a "bearable" desease. The whole cluster disappeared in 40 days, with maybe 3-4 big ones, 2 shots of Imitrex. Unbelievable.
You should do 3 months of Aricept, then stop 1 month, and so on.
What I did is just use it during the months when I expect CH.
I also have a summer CH (a lighter model), that I decided not to treat. The CH came and was mild as expected.
But the most remarkable thing about this cure is that you feel it working: you litterally feel the monster coming, as usual, everything is familiar, the symptoms, the pace, the other feelings, you are there just as usual, waiting to be struck by the demon and........behold! You are wrong, suddenly for the first time in so many decades you are wrong!!!!! it is not a monster, not a demon, just pain, lovely, bearable, near-normal pain. Something we can live repeat live with.
Take this real serious. The email address of the Italian Doctor is
Professor Federigo Sicuteri
sicuteri@iol.it
take good care
rodolfo hecht
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Karla
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #1 on: Mar 12th, 2002, 2:35pm » |
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Thanks for sharing this wonderful report of good news! I am so glad to hear that you are not in alot of pain and are able to tame the beast. I am curious if this is a medicine that can be used daily for chronics?
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Karla
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rodolfo hecht lucari
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #2 on: Mar 13th, 2002, 3:34am » |
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on Mar 12th, 2002, 2:35pm, Karla wrote:| Thanks for sharing this wonderful report of good news! I am so glad to hear that you are not in alot of pain and are able to tame the beast. I am curious if this is a medicine that can be used daily for chronics? |
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In its original purpose Aricept is used once a day every day - obviously by quite old people. Therefore, as the medicin carries no spectacular side effects, the suggested daily use should give no other particular consequence.
If I were you Karla, I would ask your md to prescibe Aricept (probably 5-7.5mg. according to your weight). If it doesn't work after let's say 2 months no big deal. If it does, well... it can change your life.
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dannyboy
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #4 on: Mar 14th, 2002, 4:18am » |
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I have a dream that one day a post like this will trigger a chain of events that will look something like this ...
1) The president of OUCH will commission the team of OUCH doctors to investigate the possible problems associated with this drug to OUCH's own satisfaction
2) Once satisfied, the president would request participation in the study from OUCH and CH.com members.
3) Members of OUCH would take prefference in the research study over non-members as support for the project flowed in. Chronic sufferers would also take preference over episodics, as those for whom 'nothing works' would take preference over those that do find relief in other avenues.
4)The OUCH research team would form a null hypothesis and design the research.
4) The group of sufferers chosen for the sample group would commence taking the drug in a double blind placeabo (sp?) controlled study.
5) The OUCH research team would write up the results and submit them to HEADACHE and CEPHALELGIA (sp).
6) Finally the president of OUCH would become the first non medical doctor to win a nobel prize in medicine, and would also be awarded the Victorian Cross, a medal for bravery from the French Foreign Legion as well as a Purple Heart, an honourary Green Beret and a complimentary curteousy car from Ferrari for the rest of his/her life.
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BobG
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #5 on: Mar 14th, 2002, 7:34pm » |
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Yeah, sure dannyboy. Like that will ever happen! The OUCH president would never be seen in a damnned foreign car. Go Honda!
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Riccardo
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It's surely....
« Reply #6 on: Mar 15th, 2002, 3:37am » |
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...a good try for us.
I know (he's also on the OUCH-Italy board) and respect Rodolfo, and Doc Sicuteri is one of the best CH researchers in Italy.
About the side effects (BobG) I think that are not so serious, because of the normal use of this med: any bad effect become huge with Alzheimer's patients, due to the age and the bad affliction they also have.
Nothing in USA about this acetylcoline inhibitor, related to CH?
Ciao friends
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Riccardo OUCH-Italia
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Riccardo
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This time I wholeheartedly agree with Daniel
« Reply #7 on: Mar 15th, 2002, 8:47am » |
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Daniel has suggested a reasonable, efficient and useful thing.
And I don't mean that's mandatory for this med, but IS a good thing.
Any comment here?
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Riccardo OUCH-Italia
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nancyc
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #8 on: Mar 15th, 2002, 9:21am » |
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I agree with Daniel's suggestion...it sounds like a great project....the folks in the study would need to see Doctors that would work with our OUCH Doctors....the reason being, that the OUCH doctors could not prescribe medications to someone who is not a patient of theirs . ..but if we have our own Doctors in contact with OUCH doctors , then we could do this...I think it would be a big step in involving OUCH in research....and working together to help all clusterheads. Riccardo, do we have Doctors associated with OUCH that you think would be interested in something like this?
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| « Last Edit: Mar 15th, 2002, 9:24am by nancyc » |
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Margi
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #9 on: Mar 15th, 2002, 12:19pm » |
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Um, WHAT OUCH doctors are we talking about here? Other than Doc Greg and Doug Wright being members of OUCH, this is the first I've heard of OUCH doctors.
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #10 on: Mar 15th, 2002, 1:24pm » |
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Also in case we could have dozens of "OUCH Doctors" this is not the way to perform all this.
Each patient have to organize this with HIS doctor , under the survey of an OUCH committee.
After each test, patients and their own doctors will report to the committee the results.
This is my opinion
Ciao
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Riccardo OUCH-Italia
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #11 on: Mar 15th, 2002, 1:29pm » |
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Oh, ok, Riccky - thanks for explaining that. From Daniel's and Nancy's posts, I was under the impression that they thought we already had a team of OUCH doctors in place. I misunderstood.
I asked our neuro the other day if he'd heard of any studies being done here in Canada with Aricept, as they are in Italy. He dismissed me with a wave of his hand, saying 'that's an Alzheimers drug.' No room for discussion.
*sigh* we've got a long road to travel, huh?
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kathy copelin, ch.com 8/8/06
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rodolfo hecht lucari
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #12 on: Mar 17th, 2002, 3:42am » |
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I would like to add some other remark, having listened to the reactions generated. First of all, as explained, this is a trial approach: of course therefore it is not an existing protocol, and no existing neuro would suggest it. But maybe if doctors interview Sicuteri (who is a very well known scientist in this field, has studued it all his life, as opposed to most of your private neuros) they could deal with the rationale that is behind his intuition and decide for themselves wether it makes sense.
Further, and specially in this field, great advances tend to ba made with a trial & error approach following an intuition.
I remember it has to do with the principle that also makes triptans effective for ch. By the way, if migraine and ch are not related - as many seem to firmly believe in this site - then why is Imitrex the only remedy against tragedy, when Imitrex is designed, dosed, marketed for migraine.
The above introduces another fascinating issue, somehow below the radar, even among this community: the pitiful ethical standards of the pharmaceutical industry. I mean, we ch are probably the people that suffer most, it is said. But Glaxo does not believe it is worth creating an injectable Imitrex that is dosed for us (2-3 mg opposed to 6, could change our attacks, we could cure 4-6 a day as opposed to 2), because we are too few, no serious money involved.
Makes me want to puke. Shame on Glaxo.
On a more constructive note, here is what I would do. I would try and get from Sicuteri a rationale and publish it on this site, somone in charge here could react. Then we could set up a virtual trial, with the assistance of our personal doctors and obviously share the results with the community.
This might be more difficult in certain countries: for an example I think Italy is not a difficult place to convince your doctor to help (Riccardo maybe you can see how it works for you). In most other cases it's up to you. If you really want to try nobody will stop you.
Finally a consideration on existing protocols: they have not changed much in the past 20-30 years. Now the monster has a name, ch. Nothing really does anything good except Imitrex. With existing protocols I have suffered in my life probably over 5000 big ones.
Intelligent experimentation does not seem a big risk to me.
Have hope and fight!
Rodolfo
PS
I will provide hints and guidelines for the cure if you are interested. and have the guts.
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| « Last Edit: Mar 17th, 2002, 3:45am by tigrusha » |
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Riccardo
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #13 on: Mar 17th, 2002, 3:47am » |
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Wholeheartedly agree with Rodolfo (and not for ...nationalism"  )
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Riccardo OUCH-Italia
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nancyc
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #14 on: Mar 17th, 2002, 9:47am » |
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I dont know how to put your remark in a box like everyone else does...but i did want to respond to it, Rodolfo.....
You said....
"By the way, if migraine and ch are not related - as many seem to firmly believe in this site - then why is Imitrex the only remedy against tragedy, when Imitrex is designed, dosed, marketed for migraine."
I may be wrong but this is the way I understand it...correct me, guys, if I am wrong....According to Dr. Goadsby, when he did the MRI on a patient in the midst of a ch, he found that first of all, ch pain starts before dilation of the blood vessels..Cause of this is unknown.....after this pain, the blood vessels dilate like they do in a migraine...So, our initial pain starts before the dilation of the vessels...Also, migraines are not associated with a dysfunctional hypothalamus...I don't like to say they are related to migraines either but that is because then folks do not get a clear picture of what we are dealing with here...I am getting confused here...somebody help me out LOL... 
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #15 on: Mar 17th, 2002, 10:46am » |
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I think that Rodolfo means there are common traits between migraines and CH, e.g. the meds that avoid the quick compression/dilation of brain vessels.
And like Imitrex, may also be Aricept that can work for both.
To be honest, when I saw the Rodolfo sentence I said myself: "here we start a riot...." (Don't speak about you Nancy!  )
But Rodolfo (despite the fact I don't know him personally) has a 30 years of CH as background, and is new to this board. He don't know the "sensibility" to the word migraine here, and he just posted an idea.
WHAT WORKS FOR MIGRAINES CAN WORK FOR CH
And I agree with him. At least until we don't know exactly what causes CH, we have to be submitted to the things that work for migraine. Is an "effects" and not a "cause" cure, but, -until it function- we can go for it.
On the other hands, we are currently using meds for seizures, psycho- diseases, high blood pressure and so on.
And we know the serotonin involvement in our disease. Then, any med that can change the serotonin level -being a med for migraines, seizures, diarrhea or emorroids ... ;D- that work for us.... is a good med!
Ciao to all you. I start to like this thread! 
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Riccardo OUCH-Italia
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nancyc
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #16 on: Mar 17th, 2002, 11:06am » |
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You are rite, my serial kisser, this is a damn good thread...I am really glad Rodolfo told us about the Aricept. I plan to talk to this new neuro at the Medical College of Charleston, SC about it when I go on the 26th. Several good points have been brought up...one, that you mentioned Riccardo, is the fact of seizure meds working for some clusterheads...I have always wondered if that is why Charlie has been in remission for so long..because of all the seizure meds he has been on.....Also, one other question...dont' know where I heard this but I heard clusters were no longer classified under migraines ...Has anyone else heard this..that it is now a totally seperate neurological conditon...Have I been lied to? LOL... 
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Riccardo
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #17 on: Mar 17th, 2002, 11:15am » |
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It seems to me that EHF (and Goadsby too) have stated what you say in a document.
I'm at home, and no way to search for this document, but I think BobP, Ueli and many others will address you better than me
Kisses, Southern girl
(BTW, our common friend stays better!)
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Riccardo OUCH-Italia
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Bob P
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #18 on: Mar 17th, 2002, 12:57pm » |
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Here is a link to IHS classification of headaches. Mirgaine and cluster are two different, separate classifications:
http://www.clusterheadaches.org/ihs/classif.pdf
Migraine is class 1, cluster is class 3 - not a subtype of migraine.
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rodolfo hecht lucari
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #19 on: Mar 18th, 2002, 3:27am » |
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Just in order to clarify a little.
I am no doctor, nor do I want to teach anything to anyone. I respect all that I ignore, and I therefore have a lot to respect....
I didn't intend to start a debate on the nature of the beast: the fact is, however you classify it they are not able to cure it nor to indicate the cause of it. They deal with ipotheses, many times using a bottom-up approach.
To be so proud about the existing paradigm, with the corollary of its definitions and classifications makes me wonder: what is it about the paradigm and the protocols you are so fond of?
If the focus is so sharp and new intuitions are to be put aside, then why have they not cured you so far?
How many attacks has the protocol subsided?
Protocols in ch don' lead to healing in ch. not yet.
So definitions might just not be the problem. It is always about healing and the misteries involved. Always something new to learn, and to experience.
Two remarks, finally.
No one yet, except Riccardo, seems to wish to try, and this puzzles me.
Second, no one angry with Glaxo. Surrender?
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ave
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #20 on: Mar 18th, 2002, 4:05am » |
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Rodolfo,
1. in the past many people have raged against Glaxo for not issuing injections scaled to our needs. Check the archives if you are still wondering.
Check the Imitrex tip uinder the button left of the page for a really useful tip if you didn't know it already.
2. Imitrex is sadly NOT the only med that helps clusterheads. There is a number of sufferers for whom Imitrex just does NOT work.
3. To fight something, one must know exactly what one is fighting. If a doctor departs from the supposition that clusters are like migraines, he is barking up the wrong tree and could waste lots of precious time finding out nothing. And although that does not hurt the doctor it hurts us.
4. You say like so many of us, you'll try anything to get rid of the beast. . .
Clusterheads on the whole are incredibly brave. But giving up meds that work for meds that we don't know about yet... that is difficult.
So don't berate other sufferers for not jumping to the chance you offer all at once.
Some will try. And if it works, more of us will try. Just don't expect miracles of conversion in a week.
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dannyboy
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #21 on: Mar 18th, 2002, 8:42am » |
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Has anyone seen Pinky and Flash's virtual questionnairre for the shroom research? Its exactly what we need.
The question is, who do we know that has the capacity to put a scientifically rigourous questionnairre together for us? Rodlofo, can your doctor do it?
I feel that if we could get the questionnairre put together, and put it up on the board it will encourage people to get involved.
And even if the research methodology suggested by Riccardo is not scientifically rigourous enough for publication, its good enough to know whether it'll help poeple or not - like the shrooms.
And yes Rodolfo, you'd think OUCH would say more than ... "the IHS clasification clasifies a migraine as a numbu wun and a cluster as a numbu fwee" ... c'mon boob, this your cue, be leader for Gog's sake! Rally the troops, sound the war cry, gather the resources, put your old quibbles aside and lead the charge, because one day, it'll be one of those charges that solves the bloody thing ... who's the guy that has "I will find a cure" under his messages? Yeah him ... him for president half - erect.
Rodolfo, can your doctor do it?
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pinksharkmark
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #22 on: Mar 18th, 2002, 8:54am » |
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on Mar 18th, 2002, 8:42am, dannyboy wrote:| Has anyone seen Pinky and Flash's virtual questionnairre for the shroom research? Its exactly what we need. |
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I deserve no credit for the questionaire. Flash put together the list of questions, "earth" from erowid did the actual programming.
pinky
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Keep your diaper on Danny
« Reply #23 on: Mar 18th, 2002, 10:12am » |
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OUCH-Italia is already in touch with the good doctor to find out what thoughts are on the treatment. We'll share that with the membership to take to their doctors if they want to try the treatment. We'll keep in touch and collect data from anyone undergoing the treatment.
BTW - The shroom questionaire was done by Flash with input from Todd V and Bob P (the Pres and Vice Pres of OUCH). Flash did do the footwork. He just asked us for our input which we gave him.
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Flash
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Re: ARICEPT - There is hope! A cure at hand?
« Reply #24 on: Mar 19th, 2002, 8:55am » |
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The survey had input from several sources including BobP, Todd, pinky, and others - I honestly can't remember without going back an accessing all my old email.
EROWID also provided substantial input and turned the whole thing into reality.
The medication you describe here sounds similar to Methysergide, Predisone, and Verapamill, or at least the effects that those are supposed to achieve.
I personally would rather not take any medication for that length of time (3 months). Also I doubt this is a cure, unless it's going to affect the physical structure of the hypothalmus. It sounds like just another prophylactic treatment.
I should add that with the exception of hallucinogens and O2, I have refused Methysergide, Ergotamine, and Triptans. I used beta blockers twice but to be honest for all their impact the side effects weren't worth it.
CH is not dangerous - it's the treatments that kill.
Flash
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