Hey River Rat. If he doesn't chime in on this, I would suggest you pm Bob Johnson on this. There have been some threads about triptan's either increasing the duration or frequency of hits. Since I alternate use between migranal and imitrex (not daily) I haven't had that experience yet. Could dropping the trex have aborted your cycle? I don't know. But I'm glad something worked. Blessings. lance

Hey River Rat,

I'm a bit anti-shrooms anyhow - I've had two friends with HPPD (Hallucinogenic Persistant Perceptive Disorder), one of whom killed herself and the other who is still hanging in there after two failed attempts. If you think CH is difficult to live with, be warned that severe HPPD is essentially perma-tripping, whether your eyes are open or shut. No-one on clusterbusters seems to talk about the potential downsides of taking even a small amount of psychoactive substances - and you may be comfortable with the amount you think you're going to take - but if you don't need to, I'd avoid taking 'extras'.

Meanwhile, I'm at the end of my rope. After 5 years of chronic clusters + TN, and now a serious back injury, I'm wondering about flying to a country where mushrooms are legal and taking them myself.

best,

John.

for example, HPPD. for other examples, LMGTFY (let me google that for you): Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


I'm led to understand that the long term side effects of hallucinogens are generally worse for people who take them in quantity and for recreational purposes only, but while I'm really, really glad they work perfectly for some people and really well for others, and can give a period of remission or complete remission, I think the 'cons' info should be in the same places as the 'pros' info.

got a kip 10 so hitting the sack. hope i've not come across too badly. just don't want to see anyone go from one suicide-inducing illness to another. pm me anytime, brew.

It felt very much like that was intended to be a dismissive approach instead of a real engagement. HPPD isn't the only potential side-effect of hallucinogen usage. There isn't enough research into cluster headache treatment full stop - we're years away from third degree studies.

i go to the sack, I lie in it, I wait for the sun to come up while trying not to scream or whimper loudly enough to wake my wife up   

We all dear with attacks differently. I've learnt that the stiller and quieter I am, the better I deal with the pain. After 5 chronic years, it's the only coping technique I have.                        

You don't want to hear that a treatment that has worked for you might not work for everyone, that's fine. But there's no need to resort to personal attacks and be a jerk about it. 

...another personal attack follows. glad I've found the ignore button - and after another 4 hour attack which didn't abort with anything, I'd just ask you to think before you greet other new members with such a horrible attitude. oddly I figured this was a place I could get support, rather than torn down. I've got cluster tic syndrome so some headaches (like last night) present closer to TN than the 'wonky pacing squinty type', and thankfully, when I have these, I can think, I can type and I can lie down. It doesn't stop me from feeling like someone is running a 9" needle in and out through my eye socket & all 3 branches of my trigeminal nerve. but hey. whatever floats your boat.

MrHorse wrote on Apr 26^th, 2011 at 6:43pm:

You most certainly need to learn how to differentiate between an attack on ideas vs. an attack on your person.

With regards to using hallucinogenic substances, even in the low doses used to treat clusters, there is a great deal of advice warning away anyone with the propensity to mental and psychological disorders.

An entire range of people are told not to use this treatment if they suffer any form of psychosis, schizophrenia, mental illness etc. and in many cases have been advised to avoid the treatment if said propensities even exist within one's family.

The conditions mentioned are real, and can manifest, although I've heard of no reports of any such occurrences, and that is very likely because the folks at Clusterbusters are very careful about disseminating that kind of warning to anyone new to the treatment.

As with ANY treatment for a medical condition, it is never a good idea to try something on your own without consulting with those who have knowledge and expertise - in this case, that resource is primarily through Clusterbusters and the sufferers who have spent countless hours, months and years researching the treatment, as well as the medical professionals and researchers involved.

Be an educated and informed patient, and don't let desperation be the guiding and deciding factor in your choice of treatments.

Cat

ETA:  The article cited by MrHorse discusses serotonin repeatedly, yet doesn't go as in-depth into the 5-HT receptors and completely ignores the next level down of CGRP receptors;  Triptans also have dramatic effects on serotonin and the 5-HTs - so much so that every triptan carries the warning statements regarding serotonin syndrome - a potentially deadly condition - which statistics show to occur far too frequently for comfort, yet the use of hallucinogens to treat clusters has not, to my knowledge, resulted in any cases of serotonin syndrome.