Ya know, I look at the list of subject headers here and I see people extolling the virtues of Imitrex, Depakote, Lithium, Clomid, Lidocaine, Verapamil, Sansert, Suboccipital injections, and surgery. Worried about side effects, not being able to afford them because of a lack of insurance, their meds stopping to work at all, etc.

None of these things, including Imitrex and oxygen, have the success of psychedelics in the treatment of clusters. You can believe me or not. Believe the dozens of people that have testified to their effectiveness, or not. They've been talked about here for YEARS and the effectiveness remains the same....75-80% of people using them, BREAK their cycles early. People that have been chronic for years, are now episodic and happy about it. Episodes they can control or eliminate.

Do you want to treat one attack out of the 1000 you'll be having this cycle? Inject some imitrex. Want to treat those 1000 attacks with oxygen......fine, order 20 M tanks. Considering to permanently sever some nerves? Even that has a lower percentage of success than psychedelics.

You may have another option.

Have you been taking Lithium and Verapamil every day for the last 20 years and still need an 02 tank? Have you been taking depakote or topamax or imitrex every day for the last 15 years?
Still in pain every day but thankful to the medical profession for lessening that pain by 50%?

You may have another option.

Some of you have valid reasons (if you have a reason, it's valid to me) for not trying them. I understand. Fine. I wish you well all the same and hope that whatever you try works well. We all have to be satisfied with the choices we make. If you choose a more conventional route, fine.

For those considering the options at clusterbusters.com, please consider this....

Over the last 6 years, I've had two cycles. Not the usual 12 (2 per year) That's 10 cycles eliminated.....not the usual 3-4 months of clusters, 4-5 attacks a day. Gone...never started.
That's approximately (minimum) 3600 attacks eliminated....3600 attacks that I didn't have to feel happy about only lasting 15 minutes thanks to 02.

I think it's time for everyone else that has found help with psychedelics, to let everyone here know about it. Maybe it'll help to keep a thread on page one for a while so new people can read about this option. For those that can't step forward, for any reason, that's fine. I understand. For those that can, and have in the past, please stand up and be counted.

Bobw
P.S. Yes, the 20% that haven't been helped are more than welcome to let us know. (except BobP because he just didn't do it right) 

i am planning to give a whirl for next cycle- My husband and i have read details on the clusterbusters site-    i want to try to rc seeds.  However- i may be pm you for details on how and when to dose soon-  Are you up for helping a newbie to clusterbusting?

nani wrote on Jun 7^th, 2008 at 7:49pm:


So I see!  

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

Hi

I am very offended by what you posted, what you posted is rude and  degrading,
and in many ways claiming you and only you have the “miraculous”
answer to our common malady!

This is not only unacceptable, it is beyond any  proper
behaviour with any group with a common interest!

You might possess some knowledge, you might possess a possible answer,
but you cannot imply that the only ones using the “CB” way are the ones
that have seen the light, this reminds me of a different kind of fundamentalism…

The research (or being part of a research group) some of us, (hopefully for all of us)
do, is to find an answer, an answer we all (most of us) can share.

I did point out more than once that the “CB” way could (and seems to be)
a good way to reduce and even eliminate our pains, and not only once
I have pointed it out in my country and in other places, the potential of using
“CB”, with some good reasaults, interest, and curiosity.

but  IT IS ILLEGAL!!!!

and therefore it is out of the question for some of us, whether for  ideological reasons
or simply for practical reasons.

I cannot use the “CB” ways!!  I like my job, I need my job!  and I have the age where
losing my job will jeopardize my future, as well as all what is dear to me.
And this thought, or better said alternative, is worse than having  “CH”!!!!

I am invited to a Pain and Anaesthesiology Meeting in Switzerland,
and I was going to talk about CH and also about the “CB” alternative, as a very good
alternative (if legalized), but now after reading your last posting I have the distinct feeling
that I will drop the CB part, and most likely not attend the meeting, posts like this turn me off,
to try and promote our cause, it makes me rethink my commitment to the CH world,
and its needs

YOUR WAY (even so it might be a good way)  IS NOT THE ONLY WAY!!!!

Michael

BobW, would you be so kind as to post:

1- The benefits of psychedelic therapy.
2- The side effects of psychedelic therapy.
3- The contraindication of psychedelic therapy : who should use it and who shouldnt and why.
4- The fact that psychedelic substance is currently deemed illegal and what are the risk involved with law enforcement.
5- The long term side effects of psychedelic therapy.
6- The list of what you recommend can be used : RC seeds, magic mushrooms, LSD.
7- Any research, study results available up to date on psychedelic therapy.
8- For the 20% that failed psychedelic treatment, what would be the reason why ?
9- Why the need to detox completely before trying psychedelic and why no med ( such as imitrex ) should be used in while on psychedelic treatment.

I think that would really help the people making an informed decision to try or not to try psychedelic substance for CH.

Thank you very much.

Some time ago, I recall reading that there was a randomized, placebo-controlled study on either psilocybin or LSA in the works.  (Can't recall which it was.)

Any word?

Best,

George

I have posted this morning, (my time) answering Bobs post,
I have had a long conversation with Alien space guy…….
and I take this opportunity to make it clear that I in no way
intended to attack Bob, nor do I question his (good) intentions,
All I try to say is that I perceived his post as he (and other CB’s) is the “only
one” that has seen the light, and the ones that don’t use the CB way
are to be sorry for, because they have not seen the light……

I do apologize to you Bob, I did not once said your way could
be a plausible way, but as long as it is on the ILLEGAL list I can
not use it for practical reasons, nor can I promote it (full harted)
for ethical reasons….. but I do mention it as an alternative, and
point your CB website where ever I can

Michael

I find this topic very interesting.  I am wondering if any of the ClusterBusters have tried other psychedelics such as peyote, ayuasca, or salvia?  Salvia is actually still legal in some states...

I use methysergide judiciously, which is a legal psychedelic alternative. Not without its nasty side effects, which is why I use it judiciously, but legal nonetheless.

I still like my job, too.

You can count me Bobw!!

I was chronic from the day the beast showed up. Like many others, I went from Dr. to Dr. trying to figure out was the hell was happening to me, all the while terrified and hiding the pain I was in from my family.  Only after finding this site was I properly diagnosed.

I tried the traditional ch meds Rx by my Dr. and although they did provide relief from ch, I still did not have my life back due to the severe side effects I experienced.  I cannot take other ch meds such as Lithium due to a non-ch health issue.  Steroid tapers are no longer an option for me either.  Triptans are not a reasonable option beause I was getting hit 3+ times a day, everyday.  I did research each med before taking because I want to know what, if any side effects I may experience and with ch drugs there are many to look out for.

Only after trying the traditional meds and not finding relief did I consider the aternatives.  I was not going to give up the fight and because I was in so much pain, I was willing to try anything.  I first started with Kudzu and Taurine.  After 3 months, I was still in pain and only then did I consider RC seeds.

I've been "busting" for 6 months now and they have been mostly pf.  I still get the occasional Kip 7 and some minor hits, but most of them are taken care of by 02.  I never have experiened any "psychedelic" effects after ingesting the RC seeds.

I now have my life back!!!  RC seeds and 02 combined have helped  me when everything else I tried failed. 

This is my experience, YMMV.

Beth 


Michael,  I read and re-read Bobw's post several times and I fail to read anything rude or offensive.

Count me in, Bob!  Rc seeds and O2 work for me!

I don't think Bob (Pinkfloyd) meant anything whatsoever in the way that busting was the ONLY way to combat CH pain.  I thought his post was very relevant and informational.  At no point did he say that anyone HAD to try it or was stupid if they did not.

Whether you are chronic or episodic, the pain of a CH attack is debilitating to each and every one of us.  Many suffers have great success with the traditional treatments, yet many do not.  Having the option of trying alternative treatments is just another tool in the arsenal against CH, and should be looked upon that way.  As Bob said, busting may not be right for everyone for whatever reason, but that is an individual decision to be made.

This site, as well as the Clusterbuster site is devoted to supporting other clusterheads, and sharing information with others as to what works or does not work for us as individuals.  By the words "sharing information", I mean ALL information.  If even one person is helped by reading information about psychedelic  alternatives, then what's wrong with that?

Keep up the great work Pink!  Thanks

Sandy

Very first dose completely killed my CPH (episodic). No more 6 months on, 6 months off. NOTHING!!!

After the 5th or 6th dose, my 2 1/2 year long cycles no longer arrive. I have short cycles with short, relatively mild hits - that's about it, other than rogue hits (and the sympathy hits I get at all CH gatherings).

Ooh... did I forget to mention that I last dosed in.... 2002 or 2003?

Lizzie


edited to add: I use Zomig nasal to deal with the few rough hits that *do* come now.

First of all, let me say that if I offended anyone, I am sorry as that was
NOT my intention. If I was looking for lighting a fire under anyone, it
would be those that have changed their lives with one of the psychedelic treatments, wanting them to let others know.  
Again, it was never my intent to offend, only start a healthy and productive discussion.

I do have an attitude (opinion) about this treatment, it is born of frustration as I watch people suffer with this condition. It is an opinion I have shared with the medical community. I do appreciate all the people that that have put their time and effort into finding solutions.
The quest for answers is the basis of medical advances in treatment of any condition

Yes, myself and other CBers have been know to coming off "strong".
Passion is a strong emotion and I am passionate about this Cluster Headache treatment. My passion also extends to cases where when people show up here after suffering with clusters for 15 years and not ever had oxygen prescribed. This, IMHO, is needless and only prolongs their suffering.  
Evidently others feel the same when it comes to oxygen treatments, their posts could be called strong. It's a similar frustration that we feel.
If you have something that you feel will help people out of their pain...how vocal are you supposed to be? I don't apologize for passion, I admire it in others.

The legality is an understandable dilemma for many, it's this and other "roadblocks" that may keep a sufferer from trying this treatment.
I respect everyone's and anyone's choices, choices are based on their need, on their situation and their understanding.
One of the goals of ClusterBusters is to remove these barriers.  It's these roadblocks that may keep someone that wants to try
it, from trying it, that makes me so passionate, and frustrated. I'm not frustrated "at" those people that can't try it, I'm frustrated
"for" these people.

In all honesty, we are out here advocating specifically for those that have these roadblocks. I've spent a good part of my life the last 6 years, fighting to remove these roadblocks so that everyone can make an informed decision, based upon their own health concerns. So have a lot of other people. Many have put their own liberty at risk. Did Nani appear in that article because it would help her? no.

This research is going off many directions. (3 institutions in the US and Europe) The goals at Clusterbusters are simple. Find something that works better than what is currently available, where ever that may lead. "Polite" doesn't always get you there, though I try to be polite I may unintentionally not always come across that way.
When you've received hundreds of emails from people that have had their lives changed because of a treatment...any treatment, you need to tell others.  I'm sorry if I've lost all patience but my passion grows each day as another email arrives in my inbox.

Bobw
P.S. BobP....try crunchy this time