Hi All,

Michael's reaction to p.c. mushrooms is the same as it was to LSD; his headaches completely disappear a few hours after ingestion. He has taken the mushrooms 4 times now with the same reaction each time. The problem is that after 4 days they return, also the same as with LSD. We're in the process of altering the dosage and/or the spacing of his dosing in the hope of lengthening his PF time. One element of the problem is the Methadone he takes to partially numb the pain of CH. Methadone is the only drug that has helped him in the long term. It's very addictive and he's been taking it for a long time. He's going "cold turkey" out of necessity since an error in calculating his supply led him to take more of the narcotic than he should have on his birthday and on other occasions this month when he thought he could take more so as to hurt less. We're both at fault. Me for not monitoring his usage more closely. Him for taking more than he should have when he thought he had more than he did. It won't kill him but he's really miserable. In the long run it's a good thing because breaking an addiction like this by gradually weaning oneself from it voluntarily is rarely successful.

Can anyone out there offer any suggestions that could ease his discomfort while he's detoxing? He dosed yesterday so his CH's are gone for a few days. He's very lucky that the mushrooms work as well as they do for him. They completely eliminate the pain of his CH's, so all he has to deal with is the withdrawal. A lot of you would probably trade your CH's any day for narcotic withdrawal but any of you that have had to go through it know that it's far from easy and very uncomfortable. My son is really going through a rough time right now. If anyone can help, we would both very much appreciate it.

Thanks,

Ron

Thanks a lot Johnny. Your advise is very much appreciated. I'll let you know if any of it helps.

PF2U

Ron

bonkers wrote on Mar 1^st, 2010 at 1:49am:


your welcome ron. please let us know what you did, what worked and what didn't. good luck

hi Ron. i don't have an answer to your question, but i have been following your story with your son and i am encouraged by his progress with clusterbusting. i am curious as to how u procured your shoom spores as i note you are in san diego. i am also in CA and from what i have read no retailers will sell them to CA. please email me if u want to provide me some info. id love to find out. thanks.

Ron, I can't help you with any information on using shrooms, or anything other than rc seeds with the use of oxygen.

I know my CH is most definitely not like Michael's.  His is much more severe than mine, and, in all honesty, it is possible that his need to use Meth is interfering with all attempts of any kind, shrooms, O2, seeds, whatever to curb his CH.

All I can offer you and Michael is my support in whatever decisions you and Michael make.

I would, however, just because using oxygen now may not be helping, please do not rule it out for future use. 

My combination of rc seeds and oxygen use has kept me pain free for almost four years.  Again, I am not Michael, nor is my CH as severe as his seems to be.

Just don't rule out anything at this point.

Sandy

Sandy, we've found that his Methadone use has virtually no effect on Michael's use of the shrooms. It may well have effected the results of his attempts to use O2 and r.c. seeds. Along with our current success in using the shrooms, Michael has been able to drop his use of Methadone from 10/day to 6/day. He's using a Clonidine patch to help with the withdrawal and it's very effective. Give us a couple of more months and the Methadone will be a thing of the past.

Ron

You know, bejeeber, I really don't mean to boast but I think maybe I'm more proud of what I've been able to do to help my son with this horrible affliction than I am of maybe anything I've ever done. This running narrative of what we've been doing, I hope has been helpful to others. I would like at some point to find a way to ease the fears that others have of using these substances as weapons against CH. With enough support and positive reports from people like us who have been successful using these substances, maybe we can decriminalize their use for Clusterheads, much like what has been done with marijuana for cancer patients and those with glaucoma.

Ron 

Published online today:

Matthias Karst, John H Halpern, Michael Bernateck, and Torsten Passie: The non-hallucinogen 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache: An open, non-randomized case series. ''Cephalalgia.'' first published on March 26, 2010; [OnlineFirst PDF]

Free full text until March 31st, 2010

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

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

Ron, how is Michael doing?  Hoping things are getting a little better for him.

Please keep us posted.  We care about both of you.

Sandy

cluster wrote on Mar 26^th, 2010 at 5:14pm:


Very interesting, and very impressive.  Thank you for posting this.

Best wishes,

George

Thanks for the great news, cluster!

Hi Sandy_C,

Michael's doing extremely well, thank you. The Beast isn't dead but he's badly wounded. Michael's had several doses of shrooms, each with the same effect: He'll be lying in bed CH'ing, dose (2.5g seems right for him), 4-6 hours later his CH COMPLETELY disappears, he'll remain absolutely perfect for the next 3 days, spend 1 day with a mild headache, back to CH'ing. Each time the Beast returns, it's with less energy, less ability to do damage. Blacking out is a thing of the past. He's taking 1/2 as much methadone as he was 6 weeks ago. We have no idea what will happen; the shrooms may stop working; the Beast may get tired of getting beat-up and leave, never to return; we may reach a point where there is still some headache, but it's no big deal. Right now, he's getting better all the time and we couldn't be happier! We have no doubt that he will now be able to have a life. Glory, glory Hallelujah!

Love to All,

Ron 

Added April 8th, 2010: The following remarks were made refering to a message which has been deleted.
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Hi Paul,

excellent book, thank you very much! Unfortunately I couldn't find anything at all about cluster headache in it.

These are my three favourite "power tips" out of the 101:

Quote:


I'll try - and hope this helps. Any suggestions on how to eat carrots while wearing a gas mask?

The following tip is not quite as good as the other ones, because daytime napping may trigger cluster headache in some people:

Quote:


best wishes!

Hi Sandy_C,

I don't know how to do the little, yellow-face thingies, so just imagine 2 of 'em with great big smiles.

Hugs back,

Ron and Mike