midwestbeth wrote on Jul 1^st, 2009 at 8:00am:

Bump, ended episode last of January first of Feb 09. Mushrooms did the trick again.
the bb

12 months an counting.....

I'll drink to that 

Hi all,

I suppose, if we're ever to change the legal status of perhaps the only truly effective therapy for this horrible affliction, that we should heed bobw's admonishment and "stand up and be counted."

This is the first time I've told our story publicly, but I think it's high time we joined the fray. I say "we" because I suffer along with my 25-year-old son Michael as he lays in his darkened room rocking, crying, sometimes screaming through 15-20 hours of every day. I'm 63 and retired so it's no trouble for me to be home to care for him.

His clusters began when he was 12 years old. We thought they were migraines since both my mother and I had them from our mid-teens till our early thirties. She had nothing to help her but by the mid-sixties I had found "Medihaler-Ergotamine" which remained in my pants-pocket till I was 30 and my migraines went away.

Michael was taking a shower when his first cluster struck. Like a lightning bolt, it knocked him to the ground (or rather, to the bottom of the bathtub). Scared the hell out of us! Over the next several years, he would have spells of headaches lasting from a couple of days to a couple of weeks. We tried all the drugs. Took all the tests. He was diagnosed with episodic cluster headaches about 8 years ago. Imitrex, oxygen and the narcotics all worked for varying lengths of time. The rest of them worked very little, if at all.

Then, about 4 years ago, he was involved in a particularly bad car accident where he suffered some head trauma. His headaches became chronic and increased exponentially in severity and duration. The pain was incredible. In the hospital, none of the drugs brought any relief - he was put into restraints and finally, with his neurologist's consent, an induced coma. After a week, when they brought him out of the coma, he seemed improved for a few days. Then they came back. We fired the neurologist and I took him to my pain doctor (I've had 5 vertebrae fused in my neck). He promised not to rest till he had eased Mike's suffering. And he has really tried. But to no avail. He currently has him taking 120mg. of methadone every day and it barely touches the pain.

Michael has what he calls a "background" headache which he carries around 24 hours a day. This "background" headache is interspersed with "spikes" which vary in intensity from the comparatively mild experience of feeling like someone is ripping out one of his eyeballs to that same experience intensifying till a lockjaw-like symptom occurs which precedes an abrupt loss of consciousness which can last from a few seconds to a few minutes. A "spike" usually wakes him about 4 o'clock in the morning. Any number of recurrences typically keep him abed till about 8 at night. He then gets up and watches a movie or two with his old man. Back to bed about 1 in the morning. That's his life. He can't work or go to school. He has no social life. His family's love has kept him from suicide. I respect and admire him more than you can imagine.

Then, a few months ago, I read an article in the journal "Neurology" entitled "Response of cluster headache to psilocybin and LSD." I now consider this article a "must read" for anyone suffering from, or caring for someone suffering from, the awful affliction of cluster headache.

I HAD to try this! I remembered these drugs from my "hippy" days - I grew up in the '60's - and knew that under the proper circumstances they could be taken safely, especially at sub-psychedelic dosages. So I tried to find some. I no longer take drugs recreationally, but I know people. I felt that with the people I know, along with the people my son knows, we were bound to be able to find something. No luck. We tried for nine months and couldn't find anything. Apparently, in Southern California at least, psychedelics have fallen out of favor.

Then, a couple of weeks ago, we got a phone call. Somebody knows a guy that knows a guy that knows a guy. He had heard of our plight and would give us a single dose of LSD for free. Whoopee!! I cut it in half. Michael took that half and we waited. 1/2 hour, nothing. 2 hours, 3 hours, nothing. We figured that he had either not taken enough - he experienced no psychedelic symptoms whatsoever - or that he was one of those people for whom the drug was ineffective.

Then, all of a sudden, Michael sat up, looked at me and said: "My headache's completely gone, background headache and all, completely gone." F___ing amazing! And it didn't come back, not even the background headache. We hoped that he might be one of the lucky ones who take one dose and the monster never returns. But such was not to be. On the fifth day it returned - with a vengeance. He had 5 glorious, headache-free days. He was full of joy and promise and hope. And then they came back. F___!! So far, we've been unable to find more psychedelics. But we will. And we know they work.

I find it utterly astonishing that our government is unwilling to allow legitimate testing to be conducted on these substances as they show such amazing promise in the fight against this devastating affliction that is responsible for so much suffering.

Best wishes for all,

Mike's Dad

bonkers wrote on Oct 7^th, 2009 at 5:51pm:

Not true. Such testing has been going on at Harvard for several years now, and more (BOL, a non-hallucinigenic, bromide form of LSD) is planned for next year.

There is hope.

Hi Brew and thanks for the correction. That's very good news.

Bonkers,

Sorry, I'm getting so used to everyone calling the seeds "RC" around here that I didn't think to mention their real name: Rivea Corymbosa.

Here's a link to a good thread for info on the subject including where to buy:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Brew wrote on Oct 7^th, 2009 at 9:09pm:

A small BOL trial was already done in Germany and I was lucky to be a part of it.
IMHO it works better than the seeds.
The seeds only give me a 4-8 weeks break (with still some hits), whereas the BOL gave me 6 months (with some minor hits in between).

Oliver

gizmo wrote on Oct 8^th, 2009 at 7:23am:


WOW wow wow wow that is COOl and encouraging!   

Can't help you with the detox thing.

Having never gone the RC route (or any other buster route, for that matter), I can only tell you what I've heard. Select the number of seeds that you feel is right for you, grind them up in a pepper mill selected just for this task (I would think Goodwill or Salvation Army thrift store), soak the ground seeds in a few ounces of H20 for a couple of hours, and drink it down. I don't think I'd want to chew them as they have a reputation for tasting awful. Spend the least amount of time on the taste buds.

Yeah, well I end up kind chewing the sludge mixture left in the bottom of the cup anyway. At least I do because I use a small amount of water hoping to get it over with quickly..........

Bonkers,

If the half dose of LSD did that well, I'd have him try 20-40 seeds anyway. They are so cheap, it's worth the experiment - or two or three or..........

However, I would first spend some serious time researching possible interactions of Metahdone with the seeds before proceeding.

Since I have absolutely no idea if there is a potential for a nasty collision, I certainly would not proceed without checking. But then I tend to take a conservative approach to medications/chemicals.

Marc

bonkers wrote on Oct 9^th, 2009 at 4:12pm:


Well that's the way I roll. They're just teeny tiny seeds, so it's like a little powder at the bottom of the cup. No biggie. They don't taste so bad IMO.