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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Time for the 75-80% to stand up and be counted
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Time for the 75-80% to stand up and be counted (Read 166662 times)
Sophie
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Re: Time for the 75-80% to stand up and be counted
Reply #175 - Jul 15th, 2008 at 4:50pm  
I do not feel that anyone is pushing the choice of using CB treatment for CH. I believe it is important to share the knowledge of what has helped me, and others. I would not feel right by sitting back and not offering the information. In fact it would be a crime not to share. Sometimes we have to bend a law, written by man. And as long as we aren't hurting anyone and we are in our own place, I really don't think there is any harm.
Chosing a natural, ageless medicine vs obeying a 20 year old law, is a very simple choice for me to make.
But this thread isn't about that. It is about being counted and I have already been counted, unless you want to count me twice---but that might be illegal.

             Sophie/aka StellaBlue
                                        but my friends call me Leslie
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Charlotte
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Re: Time for the 75-80% to stand up and be counted
Reply #176 - Jul 16th, 2008 at 8:11am  
Michael cleared that up, way back.  He misunderstood and thought the post was saying cluster busting was the only way. 

Charlotte
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Sophie
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Re: Time for the 75-80% to stand up and be counted
Reply #177 - Jul 16th, 2008 at 8:22pm  
Oh well, in that case---nevermind.
                                                   Sophie
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WHERE ARE WE GOING?&&AND WHY AM I IN THIS HANDBASKET?&&&&Cluster Buster
 
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Denise
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Re: Time for the 75-80% to stand up and be counted
Reply #178 - Jul 16th, 2008 at 11:21pm  
Everyone has there opinions and I respect them all but heres mine . Legality .....Fu#k Legality . It should be illegal to stand by and watch people beat there heads , pull out chunks of hair,Pray for death and witholding a cure or treatment . I have watched my wife go through this bullshit for 25 years . I cant wait to try the shrooms on her in hopes of some alternative to the fuc#in pain. If a dentist pulled your tooth with no novacaine would that be legal? If a doctor amputated your leg with no anestetics would that be legal. Morality ? Let me see ...We sell porn in every liquor store in america, We have convicted child molesters with more rights than we have living in our neighborhoods , We sell alcohol til people are 6 ft under, you can pay for sex legally, should I continue? We are trying to comfort someone in the most painful condition you can imagine , were not trying to get high.Stand up for what you believe in ! I believe my wife deserves to be treated with any means that will help her condition. The government spends to much time wondering whats legal or moral or injust instead of what is obvious. I would love for george bush to come spend a week caring for my wife by the same rules I have to . Deal with the insurance companies that take my premium every month but withold meds. Talk til your blue in the face to doctors, Try to live the american dream on 1 income because clusters arent a disability. In respects to this condition the government can kiss my big white ass!!! They can lock me up for caring for my wife ! Ok thats my vent now heres an idea for those worried about the testing process. We have a large enough group to have a volunteer to dose and go take a drug test in 24 hours and then in 48hrs and see what the results are, I understand how some are concerned because I get random tested every year. There has to be someone that isnt working or own there own business that can test . Those that are willing could chip in to pay for the testing . I believe the test is around $300.00  . We only need 20 supporters x 15.00 . Hell I spend that much on red bull for my wife every week.. If we could confirm that the test is negative after 24-48 hours ... 2 vacation days or a weekend and you could try it if you desired without fear of a negative test. Its a thought !  Information is power my brother and sisters. Thats all I got !  
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« Last Edit: Jul 17th, 2008 at 3:03am by Denise »  
 
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CHvsTN
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Re: Time for the 75-80% to stand up and be counted
Reply #179 - Jul 17th, 2008 at 10:17am  
I've got to say that RC seeds have saved my life - whether that's a good or bad thing is debatable, but I'm happy to stand up and be counted. I'm by no means cured, but my CHs attacks are all MUCH shorter, less frequent, and MUCH less severe.

I must add that I've never taken any other kind of medication for CHs because I was misdiagnosed for years. By the time I found out about CHs, the wonderful PinkFs of this world had already discovered the benefits of RC and I immediately jumped on board - so I've nothing to compare things to.

Anyway, even if it's illegal and the 75-80% of us get jailed, at least it's easy (...or so I've been led to believe) to get drugs on the inside. In my opinion, even life behind bars with RC seeds is preferable to a life of hell on the outside.

It's a pity that this site's on-line survey started before we (or most of us?) knew about the ClusterBusters options, otherwise we'd have better statistics, and could be closer to defining dosage, frequency, etc.

Best regards and pf days,
RT
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... and by opposing, end them.
 
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CArl
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Re: Time for the 75-80% to stand up and be counted
Reply #180 - Jul 17th, 2008 at 11:50am  
Kate is a UK sufferer. I first met her several years ago now in the OUCH (UK) chat room.
She was at her wits end with pain.
She had never taken drugs recreationally, & was a little apprehensive to say the least.

With her permission, here's her latest update.

CArl....




Hello Everyone, its been quite a while since I've posted. I suppose
I didn't want to jinx anything. After turning chronic for a year I
successfully became painfree thanks to a mixture of LSD, shrooms and
seeds. I assumed that I had returned to my episodic status and was
ecstatic. This was all two years and eight months ago!
I did have a freak year once and went two years and six months, but my
cycle was always every two years without fail.
Luckily for me I always get a couple of 'warning' attacks....mild and
short lasting. These showed up in February and I immediately dosed with
shrooms. I did this again five days later following up with a dose of
seeds. My cycle was stoped in its tracks and I've been completely
painfree ever since. All my usual triggers such as flying ect. haven't
produced even a mild headache. After twenty six years I'm not living in
fear of the next cycle.
Starting down this road and detoxing was the hardest thing I ever did
but SO worth it in the end. I certainly couldn't of done it without the
help and support I received from fellow clusterbusters for which I will
always be grateful.
Good luck to anybody starting on this course. Kate x
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Sandra von der Laage
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Re: Time for the 75-80% to stand up and be counted
Reply #181 - Jul 17th, 2008 at 12:22pm  
Have any controlled scientific studies been conducted on the effects of hallucinogenics upon cluster headaches?  What I have been reading are anecdotal reports, which are not scientifically valid.  I have read that your Harvard University has for a number of years been proposing a scientific study of hallucinogenics and their usefulness in ameliorating the pain of cluster headaches, but thus far no such experiment has been approved.  If anyone has the answer please let me know the status of the experiment.  Thank you.
Sandra
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thebbz
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Re: Time for the 75-80% to stand up and be counted
Reply #182 - Jul 17th, 2008 at 12:31pm  
Last I heard they were working on protocols for clinial trials.
John Halpern MD Mclean/Harvard.
all the best
thebb Wink
Anecdotal works for me. Nothing experimental about it. My opinion.

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Read for yourself
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« Last Edit: Jul 17th, 2008 at 12:58pm by N/A »  
 
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Sandra von der Laage
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Re: Time for the 75-80% to stand up and be counted
Reply #183 - Jul 17th, 2008 at 1:02pm  
Thank you for giving me the citation to read.  Unfortunately, it appears to be more anecdotal evidence.  Has a formal research proticol been written and submitted for approval yet?  This is what I am most interested in; if you could send me a copy of that I would appreciate it very much.  Thanks you.
Sandra
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thebbz
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Re: Time for the 75-80% to stand up and be counted
Reply #184 - Jul 17th, 2008 at 1:13pm  
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Read this my German friend.
It will be anecdotal until the actual case study begins.....we have to start somewhere. The initial case study done seems hardly anecdotal to me. But that just me.
all the best
thebb
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« Last Edit: Jul 17th, 2008 at 1:18pm by N/A »  
 
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nani
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Re: Time for the 75-80% to stand up and be counted
Reply #185 - Jul 17th, 2008 at 1:19pm  
From the Spring 2008 Clusterbusters Report:

We have an ambitious timeline for 2008. We plan to present the protocols to the hospital IRBs
sometime in the Spring. The IRBs are likely to require modifications. If these adjustments are not
too complicated, we could gain approval within a few months (no guarantees, though), and then
we send the protocols to the FDA, which has a required 30-day turn-around for response. Other
issues before starting include: sourcing our test compounds, securing our Schedule I Registrations
for this research from DEA, and, quite importantly, raising the rest of the funds necessary for
completing this research. Thank you for the donation of $26,000 to my laboratory: these funds
were critical to preserve my position and ability to push forward with this research. If all goes
according to plan now, the next donations will be for doing these important first clinical studies
for CH patients with psilocybin and lysergic acid diethylamide. Please help find donors for this
Clusterbusters' sponsored research! This ambitious 2008 timeline achieved will be a special
celebration for the Third Annual Meeting of Clusterbusters and will fulfill some of the promise of
hope we all are trying to bring to Ch'ers out there everywhere.
~John Halpern MD
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Brew
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Re: Time for the 75-80% to stand up and be counted
Reply #186 - Jul 17th, 2008 at 1:51pm  
nani wrote on Jul 17th, 2008 at 1:19pm:
From the Spring 2008 Clusterbusters Report:

We have an ambitious timeline for 2008. We plan to present the protocols to the hospital IRBs
sometime in the Spring. The IRBs are likely to require modifications. If these adjustments are not
too complicated, we could gain approval within a few months (no guarantees, though), and then
we send the protocols to the FDA, which has a required 30-day turn-around for response. Other
issues before starting include: sourcing our test compounds, securing our Schedule I Registrations
for this research from DEA, and, quite importantly, raising the rest of the funds necessary for
completing this research. Thank you for the donation of $26,000 to my laboratory: these funds
were critical to preserve my position and ability to push forward with this research. If all goes
according to plan now, the next donations will be for doing these important first clinical studies
for CH patients with psilocybin and lysergic acid diethylamide. Please help find donors for this
Clusterbusters' sponsored research! This ambitious 2008 timeline achieved will be a special
celebration for the Third Annual Meeting of Clusterbusters and will fulfill some of the promise of
hope we all are trying to bring to Ch'ers out there everywhere.
~John Halpern MD

And it is via this avenue that hallucinogens will eventually become legal in the treatment of CH, at which time I will be first in line.

I hope it happens quickly - too much anecdotal evidence out there means too many subjects won't be able to participate in the studies once they come a'knocking.
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Superdave
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Re: Time for the 75-80% to stand up and be counted
Reply #187 - Jul 19th, 2008 at 1:03pm  
I am be happy to be counted.
But not so thrilled about being judged.

How anyone, especially clusterheads, could speak negatively about the Clusterbusters project is beyond me.

There will be no line to stand in (first or last) without the people that are sticking their necks out now to be counted.
There will be no research without support and the money to make it happen.

Whether or not you are willing to use clusterbusting to find relief from CH, please support Bobw the CBer’s and MAPS, it just might be the answer we're all looking for....................... Huh


Superdave Cool
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Wow! you mean it's just in my head?
 
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The Spaniard
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Re: Time for the 75-80% to stand up and be counted
Reply #188 - Jul 21st, 2008 at 7:11pm  
Wow.

I wasn´t aware of this at all. Never did use any hallucinogens before, but if the testimonials are to be believed, the small dosage long term effect is as good a reason to try them for CHeads as any.

I found where to get Psilocybe cubensis, Mexican or Equador variant. You can even grow them easily yourself. Very tempting to try this and see if the clusters stay away for ever.

To walk in the shadow of Castaneda and Huxley...

About the law: they should make a law against inhuman pain. If I do this I will certainly NOT take the law into account. Self preservation trumps any law I say.

And I´ll repeat that in any court.
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tyrannosaurus
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Count me in.
Reply #189 - Jul 22nd, 2008 at 11:28pm  
I'm in my thirties, and I've had CH's in cycles since I was 17.

Last year, I had a particularly severe cycle where I was getting at the very least, 4 per 24 hours, every day. Bad ones.

One dosage of HWR seeds ended it. The only side-effect was slight nausea and a general feeling of discomfort and uneasiness.

In the weeks after, I occasionally had mild headaches that could be dealt with with a well-timed pair of aspirins. I was amazed that the seeds actually worked, and it was a great feeling knowing that they were gone.

The CH's have started again, a year later, so I haven't been 'cured' by any means. But I believe in HWR seeds and their effectiveness.

The legality of this medication is a non-issue. If these medications were legal to consume, the medical sector would have no problem

a) conducting proper testing with results everyone would be happy with and

b) finding a way to make it so expensive that insurance won't cover it.

Also, the fact that it these medications are illegal to consume will keep a large percentage of people of whom it has benefited from 'standing up to be counted'.

I hope that the skeptical crowd understands that this has absolutely nothing to do with recreational use or a subversive mentality. This is a real medicine that works for some people, and it should be studied further.




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Greg
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Re: Time for the 75-80% to stand up and be counted
Reply #190 - Jul 23rd, 2008 at 3:41pm  
Going to my brothers house today to try mushrooms. I am now 2 weeks into my cycle having on average of 2 attacks per day (waking in the morning and usually after lunch). I will post results after i get home. I love all u guys and wish everyone a pain free day.

                             Greg
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Re: Time for the 75-80% to stand up and be counted
Reply #191 - Jul 24th, 2008 at 9:55am  
I've done shrooms, morning glory seeds, and hawian baby woodrose seeds, they haven't helped me much.  HOWEVER, I've only tried while IN cycle, but I will try to dose this year BEFORE cycle to see if it will work.  I let you all know in November.  Wink
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Time for the 75-80% to stand up and be counted
Reply #192 - Jul 24th, 2008 at 10:28am  
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Chronic sufferers have reported relief from cluster attacks for up to two weeks using the hallucinogens, and episodic sufferers report a single dose of LSD can cure cluster headaches for as long as a year.
Lobbying by Clusterbusters has helped spur legitimate research like that now being pursued at Harvard.
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thebbz
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Re: Time for the 75-80% to stand up and be counted
Reply #193 - Jul 24th, 2008 at 12:59pm  
Quote:
and episodic sufferers report a single dose of LSD can cure cluster headaches for as long as a year.

Episodic sufferers report a single dose of LSD can alleviate all cluster headache for as long as a year.
I fixed it for ya.
There is no cure for CH...yet
thebb
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Greg
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Re: Time for the 75-80% to stand up and be counted
Reply #194 - Jul 24th, 2008 at 1:56pm  
  Ok I tried the mushrooms yesterday 2 weeks into my cycle. Tripped hard enough to get the giggles and slight visuals (eg. defined outlinings, minor color variants, its definitly cool to look at lights and patterns). Slept like a baby last night... and so far not even a shadow today. I will keep updating my progress.
  On another note i was prescribed imitrex today and 9 pills cost me 240$. Does anyone know how i could posibly ge them cheaper through canada or any other means besides having insurance?

    Wishing everyone a pain free day,
                                                         Greg
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CArl
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Re: Time for the 75-80% to stand up and be counted
Reply #195 - Jul 25th, 2008 at 11:40am  
The Spaniard wrote on Jul 21st, 2008 at 7:11pm:
Wow.

I wasn´t aware of this at all.


A good enough reason why IMHO this topic should be kept on page one.

At least untill 2009 anyway.... Smiley

Best of luck Spaniard.

CArl...
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Greg
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Re: Time for the 75-80% to stand up and be counted
Reply #196 - Jul 25th, 2008 at 1:24pm  
Well it's been 2 days now since my last episode. Not 1 headache yet.. Smiley I feel slight shadows in the morning (could be paranoia) but not anything that even requires caffine. So far the CB has worked out for me, even being over 2 weeks in a cycle that normally last 5-8 weeks. The best part of it all is i'm sleeping soundly at night.  Smiley   
I wish everyone pain free days, and i will keep you posted on my progress. Also if anyone wants any info on the way i prep. or take the mushrooms just let me know.
                                                   Greg
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Re: Time for the 75-80% to stand up and be counted
Reply #197 - Jul 25th, 2008 at 5:01pm  
Too good to be true... Undecided I awoke to a 6 taking a nap this afternoon. I'm not gonna say it didn't help me but its definitly not a permanent cure (for me). I will say if it cuts down on the frequency of my ch i will definitly call it a treatment. It was still worth it, having a 2 day break in mid cycle. I don't know if i'll get back on schedual with the usual 2 or 3 a day, (hopefully not) only time will tell.
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Re: Time for the 75-80% to stand up and be counted
Reply #198 - Jul 25th, 2008 at 8:13pm  
Greg wrote on Jul 25th, 2008 at 5:01pm:
Too good to be true... Undecided I awoke to a 6 taking a nap this afternoon. I'm not gonna say it didn't help me but its definitly not a permanent cure (for me). I will say if it cuts down on the frequency of my ch i will definitly call it a treatment. It was still worth it, having a 2 day break in mid cycle. I don't know if i'll get back on schedual with the usual 2 or 3 a day, (hopefully not) only time will tell.



give it a week or two.
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coach_bill
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Re: Time for the 75-80% to stand up and be counted
Reply #199 - Jul 25th, 2008 at 10:09pm  
what johny said, im glad you got some quick relief, but you will need 2 or 3 follow up doses.  Wink That should do the trick. Coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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