Psychedelic substances still being reported to have great benefits.

I got a short email from a kind person pointing me to information on LSD & Psilocybin as methods for treating clusters and letting me know that he had success with it. I realized I really haven't said much on the subject in this blog so I thought I would post my response to him.


Name Withheld,

We sure are the lucky (cursed) ones aren't we?

I am very glad to hear that you haven't had attacks in over a year. That is great! There have been a few times since I started getting Clusters (15-16 years ago) that I have had long natural reprieves... but you are right the evidence provided by you and other people willing to risk taking the substances mentioned seems to be much more than coincidental lulls in your cycles. I have known about this treatment for a many years and have been keeping up on the stories from people who have tried it to some degree. It's not at all surprising to me that those it has an effect for many people, they do dramatically change brain chemistry and my (wild) guess would be that they "reset" us cluster suffers in some way.

I guess I am a bit cautious of being on the wrong side of the law so I don't trust casual methods of acquiring what would be needed to try the experiment. Its funny because as a musician, I have been in bands since I was 17 and was constantly surrounded by it but I avoided getting involved in the culture myself so now all these years later I don't have any trusted contacts. heh. I would never order anything like that through the mail as some people do.... I just couldn't trust it.

I was very close a few months back to breaking down and asking around to my old band mates if they knew how to "acquire" still. I was ready to self medicate and try it... But the thing that stopped me was that I finally got into see a neurologist at a pain clinic that is supposed to be top notch and since I had tried to get an appointment with them before and been told I they were not taking new patients, I decided to give that a try. Well, I am committed to sticking to her treatment for the time being.... interestingly she has me on Anti-seizure medication and although I would not say that it made the clusters vanish... It did effect them. It made them inconsistent and "wavy", possibly less intense. So I get the "approved for use" mind altering substance and get little to no relief and you take the stuff doctors won't touch with a 10 foot pole and get great results. That sounds about par for the course...

Currently, My cycle is taking a long time to wind down as it has started doing over the last few years... I think this is natural as opposed to the result of the doctors treatment. So I am feeling pretty decent at the moment, but I guess if it starts ramping back up again I will most likely ask the doctor to put my treatment on hold and see if I can break the oncoming cycle using the methods you did.

Over the years, have gotten used to the clusters... I know what to expect, I know I will survive the attacks, and I know that I can bounce back... But as you know, nothing compares to that pain and I like any clusterhead will do anything to get free from it.

Good luck to you bud, I know what it's like and I am glad you are getting a (hopefully permanent) break from it.
Doc.


My current feeling on LSD & Psilocybin as a Cluster Headache Treatment is that there is something to it... too many people seem to be getting results. But I also know just how desperate cluster sufferers can be for something to finally take the pain away. I think sometimes we hurt so much that we squeeze our eyes tightly shut and imagine something works while trying to convince everyone else it works too. Then we can take comfort (if only for a while) that a "remedy" that may just be coincidental, or not work on more than a few people, is finally the answer... I hope serious study can be done, I really do. But I am not counting on it.

Meanwhile, I was not just blowing smoke, I do intend to try this myself at some point if possible. I may be a bitter, beaten, cluster-ridden, rag doll of a man... But I can still muster a bit of hope.

Recent history

I woke with a very bad pounding headache on the left side this morning. It had the features of a typical migraine (level 2-3) and started slowly ramping down after being awake for an hour or 2. I know I had been sleeping through it for a while because I remember almost waking up several times. I would say that at its most painful it may have ben a 3 or so in level.

I know I haven't been posting much in the last few weeks. Over all I am feeling much better. Around mid december the morning headaches and lingering clusters started to become only a minor annoyance. I was hopeful that I was finally leaving the cycle I seem to have been stuck in for a long time.

The last part of december I was having periods of headache free existence maybe even a few days in a row where I would only get twinges and the occasional quick spike. Those where interesting really I would just be doing everyday normal stuff when a harsh cluster like pain would spike and only last for maybe 20 sec total. Many times I would be talking with Katy and just sorta cry out a little "ahhh!" and then start the conversation where I left off. I'm glad she is so understanding of these things.

Well, That brings us to the new year and I unfortunately have been feeling lingering clusters growing in intensity more of the spikes and a return of the morning headaches. My hope is that this is just a short "dying gasp" of the cycle that has been clearly winding down and not the start of a fresh one.

Also I should mention I have had the odd aching/weak leg thing going on for several days now. I think if it weren't for my wakefulness medication I would be having problems staying awake during the day as that seems to accompany the leg thing.