Click this link to read a post I like on the clusterheadaches.com message board...

Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Clusterbuster Conference Aug 15^th, 2009 at 7:15pm Just paid my registration and am really looking forward to it! mel edited to add: Who else is going?
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Clusterbuster Conference Reply #1 - Aug 16^th, 2009 at 11:24am I am.... I believe Bill Mingus, Nani and oh yeah...BobW will be there.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Clusterbuster Conference Reply #2 - Aug 16^th, 2009 at 12:21pm I am - Saturday only. In and out, same day.
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Clusterbuster Conference Reply #3 - Aug 16^th, 2009 at 1:29pm Wonderful! Can't wait!!!
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

gAnDo

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Re: Clusterbuster Conference
Reply #4 - Aug 16^th, 2009 at 4:13pm

So these guys are for real with their LSD fixes etc? I was sceptical...
Instead of going through what I emailed to them (found them through Wikipedia - then found this place) I will just copy the email here.

If you cant be assed reading it, it basically says I had a bit of a crazy drug addled childhood and think maybe psycadelic drugs caused my headaches and may not be the answer. Of course I have no proof of that.

Quote:

Hi, Sorry to contact you out of the blue.

I am 29 years old and have been suffering from 'migraines' as I used to call them, on and off since I was about 20 years old.

Recently, after quite a bit of too-ing and fro-ing with my local GP I was referred to the local hospital. They put me on Pizotifen, which, believe it or not, worked fookin amazingly! For about 4 months I was totally sore head free.

But now, they are back.

2 or 3 times I have been told by various GPs they think I have 'cluster headaches' due to the pain I get behind my my right eye and temple and the nose running/red eye etc.

I went back and now I have been referred to the Infirmary specialist (about 2 weeks ago) plus put back on Zolmitriptan (since this seemed to help me in the past - which it does if I can predict when the sore heads are going to happen. But its not as easy as that!) but since it is the NHS I dont really have any hope of being seen for at least 6 months. Zolmitriptan Ive been using before I go to sleep since it seems to stop me waking with a sore head.

Tonight was the first time I actually looked on wikipedia to see about 'cluster headaches' and found myself reading about you guys with LSD etc. Strange fix I recon!

This isnt the reason Im writing. The reason is... I grew up since I was 15 years old taking recreational drugs. And maybe they caused this? Dont get me wrong, I didnt take heroin etc. I started with dope at about 15, then onto amphetamines, then MDMA about 16 then coke about 17 and huge crazy mixtures of them for quite afew years. Funnily enough, I stopped smoking dope at rouhgly 20 years old cos I got crazy paranoid. I was clever enough to see it was the dope that made me like that.

And yeah LSD too but not much. But if you know anythng about the drug scene in 97 xtc was full of LSD? at least stuff that made you trip crazy style....

Your clusterbusters website seems to be looking for some natural fix...or to sell something. I dont care. All I wanted to do was put to you my experience with drugs in my younger days and maybe make you thing that the things were CAUSED by and not CURED by crazy drugs. And possibly if you treat people who have been effected by these things in the past, you may just make them even worse!

At the end of the day, Im still stuck with this fucked up ilness, and need to wait many months before Im told 'we cant help you' as Im sure they will, but maybe, if one of you reply, you can at least give me some sort of help.

Sorry for the speech, but its a thing close to my heart as you can imagine.

Cheers

BUT I would be VERY interested to hear stories from people who had LSD to fix cluster headaches. Not just the hallucination stories Tongue

Who knows, it may work.

*please excuse the profanities, I had a few beers but what I said was tue Smiley

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« Last Edit: Aug 16^th, 2009 at 4:14pm by gAnDo »

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Clusterbuster Conference Reply #5 - Aug 16^th, 2009 at 4:20pm gAnDo wrote on Aug 16^th, 2009 at 4:13pm: if one of you reply, you can at least give me some sort of help. Have you read up on the link to the left side of the screen: oxygen info ? It is a life saver for many of us. Chuck
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gAnDo

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Re: Clusterbuster Conference
Reply #6 - Aug 16^th, 2009 at 4:27pm

I did mate thanks

Read it earlier when the forums were down.

Sounds like a breath of fresh air (ha) but seriously its something I want to try, although I want to wait until I have been to see the hospital specialist docs as am not a fan of self medication.

Funnily enough I have found in the past that when I run out of pain killers and need them when in work, I need to make a brisk 10 minute walk to the chemist to get them and even though my heads really painful in there, when I get back to work its better.... Increased oxygen in my brain due to walking excercise maybe?

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Karla

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Re: Clusterbuster Conference
Reply #7 - Aug 16^th, 2009 at 4:37pm

gAnDo, I suffered from 8 cluster headaches every day. Each a level 10+ lasting 1 1/2 hrs long. That is 16 hours of 10+ pain for the day. I am chronic and repeated this ritual everyday. I had tried everything out there as a preventative and abortive and nothing was working for me. I was desperate. I took a small dose of shrooms and ate them. I had a slight buzz but no high by any means. It gave me several weeks of pain free living. That means 0 ha. Drs. could not even offer me that. I used to take coke, acid, meth, pot, alcahol etc in the years of 80-93. I quit doing all drugs in 93 and in 98 I developed ch. I dont think my earlier drug use caused ch. But I do know that I had a very successful time using shrooms. I know of others lsd, shrooms, lsa seeds, kidzu, etc and had amazing success stories with stopping ch dead in its tracks. You use such low doses you don't trip. There are drs and researchers in Harvard studing the effects of shrooms and ch. Dont knock it until you have tried it the recomended way with a ch diagnosis and you have tried everything under the sun the drs have given you and nothing is left and all hope is lost and your looking at a revolver. It can be a life saving alternative.

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Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi

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gAnDo

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Re: Clusterbuster Conference
Reply #8 - Aug 16^th, 2009 at 5:20pm

Thanks for your reply.

As as I said, Im sceptical, but my mind is open to the options and its realy good to hear you got some respite, especially after the intensity of your headaches!

It sounds horrible (which Im really not trying to be) but Im glad Im not as bad as some people.... I dont think Id be here typing to you if it had been anywhere near as bad a you had it.

I dont have the capacity/contacts(lol) to get shrooms here in Scotland, but LSD I could find I suppose...

I will certianly give it a shot if the docs cant help. Still got 6 months to wait and see.

Oh, and while Im here I might as well say... Alchohol helps. Never a good thing to say, but I never have migranes hungover Embarrassed

(although I do when starting drinking)

*disclaimer - dont do it kids

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Clusterbuster Conference Reply #9 - Aug 16^th, 2009 at 5:53pm Quote: Oh, and while Im here I might as well say... Alchohol helps. Alcohol is an almost universal "TRIGGER" for a clusterheadache.
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gAnDo CH.com Newbie Offline The Lawnmower Man Posts: 7	Re: Clusterbuster Conference Reply #10 - Aug 16^th, 2009 at 6:00pm Stange eh. I pretty much drink every weekend but never thro the week and all week is when its the worst, although still happens at the weekends. I guess my next step is to stop for a month and see what happens then?
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Clusterbuster Conference Reply #11 - Aug 16^th, 2009 at 6:10pm Have you been diagnosed by a physician with cluster headaches? I read where you diagnosed yourself, but I must have missed the part where you got a diagnosis from a doctor.
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Redd

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Re: Clusterbuster Conference
Reply #12 - Aug 16^th, 2009 at 8:16pm

He stated Bill...

Quote:

I have been told by various GPs they think I have 'cluster headaches' due to the pain I get behind my my right eye and temple and the nose running/red eye etc.

Not an official Dx, but that was my first stumble upon CH.com, was when it was first mentioned to me by the GP, then awaiting my appt. with the Neuro.

Better he's proactive in his research than reactive..hey?

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« Last Edit: Aug 16^th, 2009 at 8:17pm by Redd »

"The goal of life living in agreement with Nature." ~Zeno

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Clusterbuster Conference Reply #13 - Aug 16^th, 2009 at 8:20pm I've nothing against research, but Quote: Oh, and while Im here I might as well say... Alchohol helps. Just making sure everything is copasetic.
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-johnny-

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Re: Clusterbuster Conference
Reply #14 - Aug 16^th, 2009 at 9:55pm

gAnDo wrote on Aug 16^th, 2009 at 4:13pm:

So these guys are for real with their LSD fixes etc? I was sceptical...

here ya go mate Wink

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scroll through the medications and treatments board. i've used this method and i swear by it.

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Pinkfloyd

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Re: Clusterbuster Conference
Reply #15 - Aug 17^th, 2009 at 12:55am

Melissa wrote on Aug 15^th, 2009 at 7:15pm:

Just paid my registration and am really looking forward to it!

mel

edited to add: Who else is going?

I'll try to get up a list soon. Wink

GaNDo....not sure where you emailed your letter to Clusterbusters but they normally come to me and I haven't seen it, if it was sent recently.

I would suggest you do lots of research. Both on cluster headaches as well as the treatment information found here, on Clusterbusters.com and at the OUCH button on the left hand side.

Bob

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"those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience."
- C.S. Lewis
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Shawn

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Re: Clusterbuster Conference
Reply #16 - Aug 17^th, 2009 at 2:57pm

It's pretty clear that everybody has a unique experience with this wonderful condition, so I'm not going to say you're wrong or right about your drug use being a contributing factor, but I do know of several people (including myself) who have been able to see some relief using the clusterbuster methods. I had one outstanding success where I went completely pain free for 6 months, but have not been able to duplicate that since then. However, I remain convinced that BobW is on to something important and I look forward to the day when mainstream medicine starts figuring out how/why this works, and how to get reliable results. Until then, for those of us who are chronic and have been literally at the end of our rope, any hope at all is better than nothing.

Thank you again Bob, your efforts have made more difference in my life than all of my doctors combined, and I'm not just saying that.

I wish I was able to go to the conference, but the budget gods have been pretty brutal this year. I'm still digging out from under my million dollar babies (technically, they were just under a million, but we got two so maybe I should call them my half-million-dollar babies)

-Shawn

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Pinkfloyd CH.com Hall of Famer Offline comfortably numb Posts: 1626 x0\|\|USA\|\|\|\|IL,Illinois Gender:	Re: Clusterbuster Conference Reply #17 - Aug 17^th, 2009 at 7:52pm Shawn wrote on Aug 17^th, 2009 at 2:57pm: I wish I was able to go to the conference, but the budget gods have been pretty brutal this year. -Shawn Thanks very much Shawn. We'll be a little closer to you next year so maybe you'll be able to make it in 2010. Hope so. be well, Bob
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