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tommyD
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An Alternative
« on: Sep 13th, 2003, 11:05am » |
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I’ve been hanging around this meds board, off and on, since it started, and around CH.com since before there was a seperate board for meds. I’ve learned a lot here. It’s my favorite part of CH.com
I read a lot of success stories about abortives like oxygen and Imitrex, about preventives like verapamil, and combos of verap and Prednisone or Lithium. I read of non-med treatments and stop-gap tricks - ice, heat, water, exercise. Many have found relief here. I did.
But I also read about a lot of problems - trusted treatments that stop working, folks who have tried everything over the years ith no long-term success, treatments that are termed “successful” because they lessen the frequency or the pain just a little. And I read about some of the nasty side effects of Prednisone, Lithium, ergotamines... Even mostly innocuous meds like sumatriptan, verapamil and O2 (fire!) can have problems.
When everything has stopped working, or you just can deal with the expense or the insurance company, when you can get your doctor to prescribe something that works...there is an alternative.
It’s not for everyone. It does have its risks. It is illegal in most (but not all!) places. Some folks should not use it because of the “side effects” or the legal ramifications. One must do the reasearch and make his or her own decision.
Start here: http://www.clusterbusters.com
-tommyD
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5-string
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Re: An Alternative
« Reply #2 on: Sep 15th, 2003, 1:05pm » |
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Is there anyone out there who has tried this without success?
Is the only drawback the fact that it's "MUSHROOMS"?
My issue is that I have a past with alcohol and drug abuse.
Mostly with alcohol. I don't want to risk anything. Now I know mushrooms fall into a different catagory. I know what they are, I've eatin them before. I don't associate them with the things I have a tendency to over indulge in. Prescription pain meds are a different story. I know better than to touch them.
If mushrooms have a overwhelmingly high success rate, I'll consider them. I just don't want to end up in front of a judge"again" trying to explain myself. But these headaches really suck, and if this treatment does work it would be worth it.
I'm curious as to why more people here have'nt tried this if it makes these things go away. I've read through the clusterbusters sight a few times and this question always comes back to me.
Please enlighten me..
....Mark...
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ave
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Re: An Alternative
« Reply #3 on: Sep 15th, 2003, 2:17pm » |
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There are some people for whom mushrooms do not work, there are people who won't take them because they are subject to drug spotchecks, there are people who cannot take them because of lost of meds thay have to take for other stuff.
With mushrooms it is difficult to overindulge I am told, because there is an interval of 405 days after a dose, when a next dose will do nothing at all for you.
You'll have to wait.
Also, you do not need to take a recreational dose. Go to www.clusterbusters.com and really read about it, okay?
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Mastifflvr28
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Re: An Alternative
« Reply #4 on: Sep 15th, 2003, 2:18pm » |
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hey Mark,
Yes, there are reports of NO success.
If you go to the clusterbusters site and on the right hand site at the bottom there are "archives" of posts about shrooms. Success and not.
I totally understand your reasoning for NOT trying...like any other cluster med, works for some and not for others.
I know this doesn't help you with your descision...you just gotta research as much as possible and make a descision one way or another.
Good luck, and sorry I couldn't be more help.
Mast
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Mastifflvr28 (aka Michelle A.)
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vig
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Re: An Alternative
« Reply #5 on: Sep 15th, 2003, 3:41pm » |
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I make a lot of excuses... at work, at home, you name it.
I miss out on a lot of good things in life.
Holding a job is a challenge
Some days, even driving is an adventure.
I'm not sure I'll ever make a good parent.
This gets worse every time through an episode.
I'm gradually wearing down.
If I'm going to have any hope, I need to consider the alternatives. I hate living like this.
tough choices, all of us.
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Pinkfloyd
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Re: An Alternative
« Reply #6 on: Sep 15th, 2003, 4:07pm » |
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The success rate "appears" to be very high.
Ave, I think it was just a typo on your part but it is NOT a 405 day interval between doses. It's a 5 day interval between what is "normal for most," their first dose and the the 2nd dose, which for many people, is all that is needed. Two doses, five days between each one.
Just like Imitrex and verapamil, there are people that for one reason or another, should not try them.
Why will people take 2 or 3 times as much imitrex in a day than is considered safe? Why will people mix Imitrex and DHE or Sansert, risking serotonin poisoning? We all see limits that we are willing to cross.
Some people are happy to have a medication that reduces their attacks from eight a day to *only* three a day, thereby saving their home and only losing their car. Being able to attend their son's graduation and *only* missing his birthday and prom night. When we find ourselves in deep throws of pain, we are often very thankful for small favors, and rightfully so. The question remains are we to be content with such strides?
I think the main reason many people don't try it is the combination of it's being illegal and from all the horror stories of how dangerous it is.
To that I offer the following.....
Teenager Dies from Acetaminophen Overdose
A Common Misconception Proves Fatal
A grieving mother in Moore, Oklahoma, is determined that her Migraineur daughter's death teach others to take over-the-counter medications seriously and take them with care.
On June 24, 2003, 17-year-old Kellie Lynn McWilliams was suffering with pain from a Migraine attack and turned to Tylenol for pain relief. In pain and probably tired and groggy, Kellie took approximately 20 of the 500 mg acetaminophen capsules. That translates to ingesting 10 grams of acetaminophen; the maximum recommended within 24 hours is four grams.
When Kellie became ill, repeatedly vomiting, she was taken to the hospital. She told her mother, "I thought it was OK. It's just Tylenol, Ma." The side effects of the overdose caused kidney and liver damage resulting in organ failure, which caused her death on June 28. According to Dr. Bill Banner, Medical Director of the Oklahoma Poison Control Center, an antidote is available, but it has to be administered within 18 hours of taking the acetaminophen.
The Managing Director of the Oklahoma Poison Control Center pointed out, "People think analgesics are safe, but they don't read the labels and they easily can make dosage errors ... fatal errors."
Kellie's mother, Jody McWilliams said, "If I can save one girl's life with her story ... that's all I want to do."
The American Association of Poison Control Centers shows the following statistics for reported acetaminophen poisonings in 2001:
Total reported exposures: 57,516
Reported exposures, under the age of 19: 40,774
Unintentional overdoses: 35,705
Intentional overdoses: 20,002
Total treated for the exposure: 24,934
Impact on health from the incident: none, 15,029; minor, 6,223; moderate, 3,138; major, 829; fatal: 120
We often discuss acetaminophen in relation to rebound headaches. This is another vital issue of which we must all be aware, not only with acetaminophen, but with all our medications. When we're in the midst of pain from a headache or Migraine, our thinking is not always clear. It can be difficult to keep track of how much of which medications we take and the times we take them.
Resources:
"Teenager Accidentally Overdoses On Over-The-Counter Analgesic." The Associated Press. ChannelOklahoma.com. July 2, 2003.
__________
Please notice the number following the word FATAL.
That was in one year.
I defy anyone to document 10 deaths related to psilocybin in the last 40 years.......
Not possible to find them you say? OK, try finding three.
While you're at it, try to find a legal drug that is less toxic than psilocybin or that has fewer documented side effects or deaths.
I'll wait....
For those of you waiting around for others to try out new medications, feel free to at least root them on as if they were your home football team. If they can, they'll find a cure before your children are diagnosed with clusters.
I'm sure that many people willing to take a chance, start doing so out of purely selfish reasons, like saving their own lives and staving off their families financial and emotional ruin. Hopefully though, they'll save you, your children, and/or your grandchildren future pain in the process.
OTOH, I've noticed a few people that have basically completely rid themselves of clusters now for years, and still post here, for no other reason than to help others and make this a readily available treatment for everyone else.
PF
Sorry folks. Who left this darn soapbox here anyway???? 
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5-string
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Re: An Alternative
« Reply #7 on: Sep 15th, 2003, 6:34pm » |
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Thanks for the input. This sight is the best...
After being out of work 6 weeks because of this I'm willing to consider almost anything.
I do know through experience the worst re-action to eating too many mushrooms was being stuck on a farm because I did'nt drive myself there but did'nt want to leave because the livestock had all the answers.  I was younger then and have since realized that cattle are not that smart. Even though they don't need a neuclear device to feel safe. 
The research continues. I will re-read the clusterbuster sight again. Who ever put that up, I thank you for your time..
...Mark..
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bh205
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Re: An Alternative
« Reply #8 on: Sep 16th, 2003, 7:25pm » |
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i have been a ch sufferer for many years now and have tried almost everything. last year i tried mushrooms for ch relief instead of recreationaly like i have as a teen. i havent had a ch in almost 2 years and my cycles are generally 12 - 14 month cycles. i think i am starting to get shadows again, but i do belive that they have helped me. and everything that i have read about most of the pharmacy drugs i have tired have scared me. mushrooms are much more safe than anything that is produced by a drug company.
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BillyJ.
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5-string,
I don't have the refferances handy but they are in
those archives mentioned above or in the links provided
there.
Mushrooms by their nature(limitted redose time)
are anti-addictive.I read somewhere in there that
halucinagetics(sp?) such as mushrooms, are being
expieramented with as an aid in treating drug and
alcohol addiction.
please read this- http://www.clusterheadaches.com/wwwboard/messages/56223.html
http://www.clusterheadaches.com/wwwboard/messages2/82.html
It does have THE greatest success rate as a preventative treatment.That does not mean it is 100%
but I believe it's close.
Why not more people doing it?-wel I think you would
be supprised if you knew how many are doing it.Many
post here,learn about shrooms and are never heard
from again.Because they've found thier 'cure'??
The ones here that refuse to try it all do so because
of personal reasons,i.e.drug screening by employer,
legality,morals,religous beliefs,ect.ect.
Why they won't try shrooms is their buisness,it's
their decission,and I DO Respect their decission.
Bottom line is - the choice is yours to make-choose wisely!
I hope this helps,Wishing you PF,
BillyJ
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jminmilwaukee
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Re: An Alternative
« Reply #10 on: Sep 17th, 2003, 7:46am » |
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Had to chime in on this one (nice rant pink). BTW - whose turn was it to watch pink?
I am one of the few that have tried and not had 100% success, more like 85 to 90%. (good kitty)
I am one of the few that have "stuck around" to try and help others.
I am one of the few that will not give up until this treatment has ether legal availability or a legal synthetic form (so the pharm co's can profit properly).
Hell, I even plan my vacations around this treatment. (Good thing they don't grow in Antartica).
Pink has a very good point. We are forging ahead (full speed) in an attempt to nail down that holy grail of SAFE, EFFECTIVE and affordable treatments.
Funny thing is, not many cheerleaders from the group that WILL someday benefit from our stubborn drive to get this done.
ANyway, almost got on Pink's box there (sorry pink).
You make the call.
jmin
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5-string
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Re: An Alternative
« Reply #11 on: Sep 17th, 2003, 2:38pm » |
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hmmmmmmmmmmmmmmmmm........................hmmmmmmmmmmmmmm....
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wayner57
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Re: An Alternative
« Reply #12 on: Sep 17th, 2003, 3:32pm » |
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I for one would like to try this alternative, but its just not available where I live or I do not know anyone that has any.
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Pinkfloyd
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Re: An Alternative
« Reply #13 on: Sep 17th, 2003, 4:38pm » |
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on Sep 17th, 2003, 3:32pm, wayner57 wrote:| I for one would like to try this alternative, but its just not available where I live or I do not know anyone that has any. |
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Well, if you think that giving conventional medicine 12 years worth of chances to help you, you could spend about $50.00 US, two or three hours of labor, and 4 or 5 weeks of tapping on a table waiting.....you could do it the safe way and grow your own. Not that I would ever suggest anyone should do such a thing but I've heard of it being done.
There is a place on the web that documents the process for purely educational purposes just in case it's ever legalized, if you'd like to see how other people used to do it before it was illegalized. 
www.clusterbusters.com
My dog tried growing them a while back and from the look on his face, he was successful. If my dog can do it...... 
pf
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"There is no passion so contagious as that of fear."
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Maddi41
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Mitch,
I was wondering how long have you suffered with CH and what other methods have you tried? I just found the site and I'm finding it to be very helpful.To know there are others out there that suffer with CH and I'm truly not alone in this, give me hope. I've suffered with with CH for 7 years now and feel that I've tried most everything offered with little success. Thanks to all who share their stories. For the first time in 7 years, it's a great feeling to know, there are others out there who truly do understand and knows all too well the pain one goes through. Thanks, Maddi
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Bob P
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Re: An Alternative
« Reply #15 on: Sep 19th, 2003, 11:01am » |
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5-string,
I am a shroom failure. Last cluster I dosed 4 times with not least hint of slowing my attacks.
I am also a recovering alcoholic. Taking the shrooms didn't knock me off the wagon. For me it's more dangerous to take pain killers (which don't work on CH but are fun recreationally). In fact, I didn't like the feeling of being spaced on the shrooms at all. I only continued to dose because I wanted the the clusters to stop.
Anyway, growing them was fun. Brought back memories of my aluminum foil lined closet with the grow light in it. In my opinion, the shrooms are worth a try. I'll give it another go during my next cluster, if my 2 year old spore print will grow.
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| « Last Edit: Sep 19th, 2003, 11:01am by Bob P » |
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Roxy
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Re: An Alternative
« Reply #16 on: Sep 19th, 2003, 2:04pm » |
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I am what my neuro calls a hard core chronic. It took around 14 doses to put a dent in my ch's. No.....for me it wasn't fun dosing that much (especially the nice little woodstock dose I took... ;D). I don't like doing it, but I like it better than 10 shots of trex a day.
After so many doses, I finally went a month with only around 4-5 hits (that's 4-5 hits for the WHOLE month) . I'll take that any day. I did another dose last Monday night, and I've been hit every night since then, but just once a night. I would prefer for them to go away all together.....but, I'll take one hit a night. I've had shadows in the evening.....but, I'll take that over 5 hits in the evening.
Like Jeff, I'm not 100% cured.....don't know if I ever will be.....but life is much better after the alternative treatment. I'm just glad that I never gave up on it......and, yes....I envy those that it helps with just a dose or two..... .
Everyone has their own reasons for trying it or not trying it. I respect those decisions, no matter which way you chose. I do wish more people would try this treatment.....because I would really like to see more people stop hurting.
PFDAN,
Tracey
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| « Last Edit: Sep 19th, 2003, 3:39pm by Roxy » |
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jminmilwaukee
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Re: An Alternative
« Reply #17 on: Sep 19th, 2003, 5:13pm » |
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Hang in there Roxy, you know we are doing are best to nail this thing down. I cannot imagine bieng Chronic. As you know I am episodic and turned to the shrooms because I did not think I could live through many more episodes.
Baby steps for sure but steps in the right direction. THis is one of the reasons I have been hanging around this board for a while now. Trying to get the word out as much as possible and get this thing recognized as a legitamate treatment worth the research, time and money.
Jmin
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Flash
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Roxy,
After 14 doses you have as much experience of shrooms as I do and I've been using them for a decade!
Here are my thoughts...
First off despite what a lot of people are saying I would keep the doses VERY LOW but regular - like once every 7 days. Do not exceed level 1. Get it to just the point where you get the slightest effect.
You may recall that I've been consistently pushing this advice for your particular case for some time now. Do not dose more than once every 5 days.
Look at Henk to see how it's done. Henk was a chronic for years. He embarked on a regular weekly but very low dose of shrooms. When he noticed improvment he streched the dose out to once every 2 weeks, then once a month, then once every 2 months. This entire process took him 2 years to complete, but he got there in the end and I believe he is now on the 6 month maintenance dose. Several times he suffered temp setbacks and had to increase the frequency for a while.
That's how it's done.
Do not experiement by increasing the dose. One bad trip and you'll put yourself off these things for life - believe me.
I have NEVER had any advantage from a larger dose.
The idea is just to settle your head down. Big doses might shake it up too much. Stick to the plan I'be highlighted - very small regular doses and slowly increase the periods between doses. Just because you go 2 months without much grief doesn't mean you are suddenly episodic, keep on taking those maintenance doses only less frequently.
If you start to get hit more often then increase the frequency.
The key is to dose as LOW as possible then there is no big deal about taking these things on a weekly basis.
Hope this advice helps.
Flash
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BillyJ.
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ave
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Re: An Alternative
« Reply #20 on: Oct 7th, 2003, 12:19pm » |
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Good to see you backin here, Pink and Flash! Of course I did mean 4 to 5 days and not 405.
For those leary of the psychedelic effects of shrooms, let me add that I disliked the whole experience enourmously, that I still dislike it when I re-dose - and that I will continue taking them. I don't want to hurt again.
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Roxy
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Re: An Alternative
« Reply #21 on: Oct 7th, 2003, 4:05pm » |
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Hey Flash....thanks for the good advice. I'm following it to the letter.....just small doses once a week. Usually around .7 to .8 grams. I know I need to be patient, but it's hard to... ;D. I tend to make the doses smaller than I probably should, but I don't want the large doses. I know they don't do much for the head.
I'm still getting hit every night, usually just once or twice. The only nights I miss are on the nights I dose. I'm going to keep on the same track till I start skipping a night or two, and then try to stretch out the time.
I have this awful vision of never being able to stretch out the time between dosing...... , but I know it will happen sooner or later.
ave, LMAO....glad it's not 405 days!!!
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