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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Cluster Busters?????
        
(Message started by: Biker on Jun 30^th, 2004, 11:36pm)

Title: Cluster Busters?????
Post by Biker on Jun 30^th, 2004, 11:36pm

I finially settled into an ebb in the episodes long enough to read the new posts, and cluster busters. Its been less than an exciting time between the headaches. I was up to 120mg. of verapamil 5 times a day, and sucking on the oxygen bottle from the welding shop, while the imitrex kicks in. Episodes day and night. Its been a rough sweaty time. Long periods of time in the shower seemed to help a bit. Now, Im feeling dizzy when I stand up, and some numbness in my hands and feet. Too much verapamil---time to cut back some. I doubt my cycle is broken, but the episodes seem to have lessened in frequency and intensity. I have to feel for the folks who get no relief. Clusterbusters???? has anyone really had any luck with the mushrooms??? I picked a bunch over 20 years ago just for a kick. Never thought they may be good for anything other than a weekend experiment. If the shrooms show promise, I think it may be worth a trip down south to the cow pastures. Its pretty hard to explain to those who dont know, when they see me under attack. We've had some cooler days in West Virginia, but I hear the heat is comming back again. The hot days seem to bring on the headaches more often. I have had CH in all seasons, but mostly in the summer. I suppose everyone is affected differently by different drugs, but from what I gather in ClusterBusters, the mushrooms may be sort of a cure for some folks. Anything would be better than dancing with the devil. Personal feedback from mushroom users is most welcome. Thanks.

Title: Re: Cluster Busters?????
Post by JDH on Jun 30^th, 2004, 11:49pm

Biker,
Sorry to hear that you're dealing with it again.
Go here http://www.clusterbusters.com/ for info on 'shrooms.
good luck,

Jim

Title: Re: Cluster Busters?????
Post by miapet on Jul 1^st, 2004, 12:25am

Biker . ..read my thread on the medications/treatments board titled: No Longer Chronic . . .D was chronic for like 20 years . . he has been p/f for 7 weeks and counting. There are numerous other success stories documented . . .I'm sure others will come along and share their information with you!
*positive light and energy*
miapet

Title: Re: Cluster Busters?????
Post by D on Jul 1^st, 2004, 3:32pm

They work!

A damn sight better than all the pharmaceuticals the doctors dish out like aspirin to anyone who walks in with clusterheadache, and, with far less effects on every single aspect of your psysiology, psychology, and quality of life.

End of story...

Peace and Positive Energy

D

Title: Re: Cluster Busters?????
Post by eyes_afire on Jul 1^st, 2004, 7:01pm

Hi Biker,

If you're one of the lucky mushroomheads (and there are a good many lucky ones), then one or two doses may derail an entire cycle. I wouldn't call the treatment a cure. For a few of us unlucky bastards, the best we can hope is that the shrooms provide some temporary help every few days. Many mushroomheads fall somewhere in between... which means you shouldn't give up too easily and may have to be persistent. For me, it was a no-brainer... it was certainly worth trying, even if it is not my preferred treatment at the moment. It certainly had a positive effect for me, but it did not last long. It's probably safer than many synthetic drugs, but unfortunately I'm still forced to bow down and worship the synthetic drugs (verapamil).

--- Steve

Title: Re: Cluster Busters?????
Post by chrismo on Jul 2^nd, 2004, 4:39am

YEAH SHROOMS!!!

I honestly feel they brought my life back to the way its supposed to be. I love them for the gift they've given me.

Title: Re: Cluster Busters?????
Post by forgetfulnot on Jul 2^nd, 2004, 2:06pm

Try it, it won't hurt and could very well help. ;)

Lee

Title: Re: Cluster Busters?????
Post by Jayne on Jul 3^rd, 2004, 3:29pm

on 07/02/04 at 14:06:12, forgetfulnot wrote:

Try it, it won't hurt and could very well help. ;)

Lee

errr... I disagree with that. I know I am the minority here, but the shrooms did not help me and they turned me into a chronic sufferer. I hope my feedback was welcome...it seems if you give shrooms a negative comment you get flamed around here. My exeperience is just as valuable information me thinks.

Title: Re: Cluster Busters?????
Post by forgetfulnot on Jul 3^rd, 2004, 4:26pm

on 07/03/04 at 15:29:10, Jayne wrote:

errr... I disagree with that. I know I am the minority here, but the shrooms did not help me and they turned me into a chronic sufferer. I hope my feedback was welcome...it seems if you give shrooms a negative comment you get flamed around here. My experience is just as valuable information me thinks.

Everyone has their own experience Jayne, this aint a flame, but it could be (could, being the key word) you were going chronic anyway and the treatment had nothing to do with it. My experience was just the opposite, chronic to episodic. That too could just be a coincidence, who knows. I do know one thing for sure though, no cat shit for this boy. ;)

Lee

Sorry you feel that way Jayne, I inserted a comma after flame. Maybe it will read better now.

Lee

Title: Re: Cluster Busters?????
Post by miapet on Jul 3^rd, 2004, 8:59pm

sorry to hear you are chronic now . . . I would have to agree with forgetful though . . .you may have already been on that road . . . .whatever the reason . . I hope you get off that road, and have lots of p/f days and nights.
*positive light and energy*
miapet

Title: Re: Cluster Busters?????
Post by Pinkfloyd on Jul 3^rd, 2004, 9:32pm

on 07/03/04 at 15:29:10, Jayne wrote:

Yes Jayne, your experience is just as valuable, if not more so.

PF

Title: Re: Cluster Busters?????
Post by Jayne on Jul 3^rd, 2004, 10:34pm

on 07/03/04 at 21:32:47, Pinkfloyd wrote:

Yes Jayne, your experience is just as valuable, if not more so.

PF

Thank you Pinky!!!! I still pray for all the good work you are doing and maybe one day there will be a shrooming pill...I think they ought to call it the"Pinky" pill. [smiley=hug.gif]
If a pill came out I would most certainly try it again, as there would be no margin for error on my part.
I really and truly praise you for all that you do and how many people that you have helped.
Love you lots
Jayne

Title: Re: Cluster Busters?????
Post by ave on Jul 4^th, 2004, 4:12am

Interestingly, Jayne and others, there is a post onthis self same sub-board, about somebody who took a trex shot and went up to kip 10 in seconds...

The cluster is a wiley beast, and we still don't know the process that causes CH or what the meds that help really do.

Title: Re: Cluster Busters?????
Post by Jayne on Jul 5^th, 2004, 12:06pm

on 07/03/04 at 20:59:06, miapet wrote:

Miapet, with the greatest respect meant, I really feel that you and forgetful were patting me on the head and condescending me. I know what happened to me.
The first time I ever tried shrooms I was in remission. That very night I went into another cycle.
You know how it feels when someone tells you that stress causes your headaches and you should take yoga, well that's how it feels to me when you discounted my exeperience with shrooms. I was thinking about this last night and I was really upset. I don't want to fight with any of you but please don't pat me on the head again. I know what happened to me and I am an intelligent woman, and I know how to relay information about that experience.
I feel better that I have typed this and got it off my chest. That is why I have been cautious before about talking about what what happened to me. Oh Jayne had a bad experience, well it must have been in the cards anyway.
I appreciate all of Pinky and Flash's work and I know that I am the minority, but I don't need condescention when I speak.
I wish clusterbusters nothing but the best of luck as I know they are helping many many people.
Jayne

Title: Re: Cluster Busters?????
Post by Pinkfloyd on Jul 5^th, 2004, 2:12pm

on 07/03/04 at 22:34:01, Jayne wrote:

If a pill came out I would most certainly try it again, as there would be no margin for error on my part.
Jayne

Thank you Jayne. I do appreciate all your kind words and will accept them on behalf of everyone that has been involved in this.

Answering the question of why this works for some will probably answer the question of why it doesn't work for other's. The reverse would also be true. Finding the answer to either side of the coin will give us a good idea of what's on the flip side.
So, yes, data and information on successes and failures all help lead us in the right direction.
As a matter of fact, we probably can't answer why it works without also finding out why it doesn't.

Yes we are all different and when that light bulb finally goes off, it will shed some light for all of us.

The work being done is really dedicated to those people that haven't yet found an answer to their clusters. So, when there is a pill, it would more fitting to have a JS imprinted on it than be pink.

Be well,
PF

Title: Re: Cluster Busters?????
Post by miapet on Jul 5^th, 2004, 8:43pm

Jayne,
I, in no way meant to come off as condescending . . .nor as if I were patting you on the head . . . We all hear, more than we probably like, things like: it's where you were in your cycle . . or that probably didn't work, your cycle was probably ending/winding down then . . .
The truth be known, we don't know enough about CH .. .or why some people are episodic versus chronic . . .or why people may go from one to the other. I was only posting my thoughts.
I still hope, that whatever the reason behind all CH, that everyone finds something that works for them.
*positive light and energy*
miapet

Title: Re: Cluster Busters?????
Post by pamstroud on Jul 5^th, 2004, 9:05pm

on 07/05/04 at 12:06:42, Jayne wrote:

Jayne, if you had mentioned the above information (and you may have elsewhere), I am sure that none of us would have speculated that the mushrooms might not have been the agent. Given what you already said, and the fact that no one else has had this experience, it is a reasonable, if not inevitable, speculation. Since you were in possession of all the facts, I can see why it seemed condescending to you.

Title: Re: Cluster Busters?????
Post by alleyoop49 on Jul 5^th, 2004, 10:04pm

I think it should be a PINK pill with JS printed on it!

Title: Re: Cluster Busters?????
Post by Bob P on Jul 6^th, 2004, 12:00pm

Jayne,

Lots of stories in both directions. I tried the treatment 4 times last cluster. It never helped me avoid one single attack and I wound up having the longest cluster in my 30 years of dealing with them (15 weeks, normal is 6-8 weeks). Is the longer cluster due to the treatment? I don't know for sure but I don't think so. Not long ago I spoke with a recently past president of OUCH and he told me that his last cluster went on and on. He tried the treatment many times, over and over, on and on. It turned into his longest cluster ever but finally ended. I joked with him, there you have it, the shrooms cause longer cycles. He is certain that the shrooms finally stopped his cluster and continue to keep them away.

Many accounts in both directions. Most simply based on what the user chooses to think. The real truth will come from the buster's Harvard study.

Till then, in my mind, it is another treatment worth looking at, but know, just like any other treatment, it may or may not work for you.

Title: Re: Cluster Busters?????
Post by Jayne on Jul 6^th, 2004, 3:29pm

Oh I understand all that Bob and I also applaud the efforts of clusterbusters. My complaint was in telling my story and some people pat me on the head and dismiss my experiences.
I am so happy for all those it has helped. I jump for joy when we fight the beast and beat him, however we do it.

Title: Re: Cluster Busters?????
Post by Bob P on Jul 6^th, 2004, 4:50pm

Ahhh. Kind of like the old, if it didn't work then you must have done it wrong approach?

I knew you knew that Jayne. I just wanted to tell the story.

Truthfully, your story is a real drag though.

Title: Re: Cluster Busters?????
Post by pam s on Jul 6^th, 2004, 9:27pm

on 07/06/04 at 16:50:32, Bob P wrote:

Ahhh. Kind of like the old, if it didn't work then you must have done it wrong approach?

If you read the post carefully, it would be more of the old, "if it didn't work' it could be (could, being the key word)" the wrong approach. Seems to me that the posters were simply trying to point out, based on the information originally provided, that there is still reason to hope.

pam

Title: Re: Cluster Busters?????
Post by Flounder on Jul 7^th, 2004, 1:19am

It works for me!!!

When I sat down with D and Miapet, D asked me, so this really works? I told him that all I can tell you for sure is that it works for me. It's been 4 yrs that I haven't had to see my neuro. This treatment changed my life. I can offer my experience with this treatment and all the awesome people at Clusterbusters are more than willing to walk you through this.

It's true that this doesn't work for everyone but from what I have seen the successes far out weigh the unsuccessful attempts.

Bob P, come on, you know you didn't do it right. You used a turkey injector to inoculate for cryin out loud. hehe. jfwy

Title: Re: Cluster Busters?????
Post by miapet on Jul 7^th, 2004, 2:44am

Flounder, we can never thank you enough for the time you spent with us that afternoon. D had listened to everything I had to say about it . . .but seeing you, and hearing how successful you had been with this treatment, really made the difference. He KNEW you were real . . .and, for the first time in well over 10 years he felt as if there was something that worked (the first 10 years, between being misdiagnosed and then being a guinea pig and trying EVERYTHING the docs said would work but didn't) . . .and it did! The h/as that happened after the first 2 doses were expected, and we worked through them . . and all of you were great at supporting us through that time! You, and the rest of the busters are very special people!!
Clusterbusters ROCK!
*positive light and energy*
miapet

Title: Re: Cluster Busters?????
Post by Bob P on Jul 7^th, 2004, 9:45am

on 07/07/04 at 01:19:08, Flounder wrote:

Bob P, come on, you know you didn't do it right. You used a turkey injector to inoculate for cryin out loud. hehe. jfwy

Actually, the ones I used to dose with the 4 times that it didn't work were from a picture perfect crop of B+
http://www.pahlow.net/albums/shrooms/

The most recent batch that I grew for use in my next cluster were from a spore print made from this first batch. I hadn't saved the syringe from the first batch so I bought a large syringe from a cooking store, the things made for injecting flavor stuff into meat. It is actually a pretty good tool for injecting with. The second batch did have some contamination and I trashed some of the cakes. Could have been from the injector, the print or just sloppy technique. Never the less, I did get enough crop for 3 or 4 doses. We will see.