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New kid - hello all


slow-mo joe
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Hello everyone

As the new kid I thought I would introduce myself.  I've been suffering head pain since childhood and I’m now in my early forties.  Have been through the frustration and disbelief of G.P.s either not knowing, not understanding or not believing.  Finally four years ago whilst living abroad I found a wonderful neurologist.  We met while I was in hospital suffering the worst head pain episode I have ever known – they tell me that my brain was actually swelling and for a short amount of time they thought I was on my way.  I have had all the tests you know of plus one or two that I could never even imagine.  My head pain cycles like classic cluster headaches and I become light and sound sensitive like migraine.  I have known myself to vomit from pain only twice in thirty something years and I have no visual distortions.  I have lost days, weeks, months because of this.  The treatments I have tried would make a long list which you all know.  Online research led me here and I’ve been reading these boards for a while but only just registered now.  I have recently successfully used lsd to rid myself of pain, something which I am not comfortable with but as we all know, desperation is as desperation does.  It has not broken my cycle and I suspect this may be down to the tiny doses I am using.  Also I notice that using this treatment two days in a row, the second day it has less power – some kind of tolerance I suspect. 

So yeah, hello everyone.  I’m sorry you are here but I’m glad for the company.  I’ll keep my eye on these boards and add whatever useful information I come across including my own direct experience. 

Cheers!

slow-mo joe   

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hey joe, welcome, and thanks for posting and standing by.  looking forward to your input.  as you probably know, paper is generally considered the best busting agent. but if you conclude you're using too little to really make a long-term difference out of reluctance to "trip," you might consider seeds, from which you can get a stronger dose (than a very low dose of lsd) without psychedelic effects.

are you taking no pharmaceutical meds right now?  you have oxygen?

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Hi CH,

Thanks for the reply.  My reason for keeping my dose so low is partly, as you say, reluctance to yes, "trip".  Also partly that it took a long time and a lot of effort to locate this medicine and I don't want to waste it as conventional pain killers, both OTC and prescription, do nothing probably 80% of the time.  Having said that, I live in optimism so often take them anyway, hoping to find myself in the other 20%.  Apart from that I am currently not on any regime but am looking at a prescription for Frovatriptan which my G.P. has just today written for me.  Any advice or knowledge about this would be appreciated.  I have never tried oxygen therapy.  Discussed it with the doctor and we agreed that it is a possible route to explore.  I currently have access to a few HBW seeds but have never tried them.  Any other peoples experience with these would be gratefully received as well.  Who knows where we may be by the end of the week...    

Cheers!

slow-mo joe

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joe, oxygen is the most important thing you can have to abort your headaches.  This shouldn't even be a discussion with your GP: just get the prescription and get started.  More here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

As Ting says in her post, "busting" is using these agents to stop cycles or prevent cycles.  It can help with aborting them, but stopping/preventing them, by using effective doses spaced about five days apart, is generally preferable.  It is strongly believed here that triptans will block the effectiveness of busting, so (for purposes of busting) that's where the oxygen comes in, enabling you to get along between doses without resorting to meds that block busting.

HBWR is a pain to work with.  If you want to bust, you can buy RC seeds relatively inexpensively.  You might want to look over the files that tommyd has created to maybe get a better sense of all this.  They're in the "Clusterbuster files" section of this board.  Here's a general one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

Here's one on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

Here's one on things that block busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

In my opinion, if the Frovatriptan is in tablet form, it probably won't help you unless your headaches are very predictable and you can take it in advance.  If it's injectable it might help more . . . but it sounds like maybe you've experienced some of the side effects of triptans.  Others will have wiser things to say about this than I do.

Strongly recommend that you get the oxygen ASAP.  I know virtually everyone else here agrees about that.  If you don't want to bust (or even if you do) and you haven't tried it yet, the anti-inflammatory "vitamin D3" regimen has helped quite a few people, and even though you've already tried a lot of OTC remedies, it could be worth a shot for you. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

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Your from UK? Just sounded like it maybe. If your from UK, i have a very good friend over there, a fellow sufferer i got to know attending the Clusterbusters convention. I could introduce the two of you, he is a very good man, very helpful as well. It is a life changer to speak or meet other CH`ers. I`m fromm Norway.

RC seeds are very easy to use and buy as well. For me they have been very effective. I went from LSD to Shrooms and now RC seeds only. I get online them from Allsalvia Uk. Very easy. Bang them with an hammer, soak them in water, drink it and then go to sleep. And sleep like a baby. Or better... LOL. Fist time i tried them i woke up and my arms hurt, i had been sleeping in the same position for 9 hours or something like that. Would usualy sleep around 4 h max every night, and that was not 4 straight hours.

You siffered this allot longer than me, i can`t imagine what you`ve been trough. I was chronic over night and i got hit every day and night every third h. Now 2 years after i`m a CrossFit`er, had several flights and even as far as to the Chicago, and in genearl just loving my life pain free. I do RS seeds once a month or even every sec months sometimes. It is not stopping me anymore and it is not dominating my life or most important of all my 8 year old daughters life in any way. Just cause of this treatment. Pretty amazing or what? :)

You certainbly came to the right place. Very excited for you :)

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Hey Joe,

Where you goin' with that - ahem SORRY I came way too close to reflexively inserting a rudely inappropriate song lyric there.  :-[

What I really wish to say is how happy I am to see the absolute FIRST RATE advice you're getting here!!

Yes yes YES to all the RC, O2, etc. advice above.

Most of us CH'ers find that only the injectible or inhaler triptans work, the pills don't. They do block the receptors that make busting possible, so triptans are not a particularly popular option around here. High flow 100% O2 is much more highly regarded as an abortive, due to it's non toxicity, and the fact that it doesn't interfere with busting.

This site/forum is where a lot of long time sufferers find out how to suffer no more (or a lot less). Glad you've landed here!

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Hi Mojo,

Welcome to ClusterBusters. In that you've just recently found this site, you might do well to watch this video of talk given by our fearless leader Bob Wold:

It will give you some insight into what we're doing here and why, and how we do it. With any luck at all, you'll be in a much better place a month from now than you are today. Good luck!

Ron

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