I decided to try schrooms again, they worked for me in the past, but they are hard to find and I had no luck growing them. I was getting killed by the beast so I went to a great friend and found what I needed.

With that said;

I knew I had to get off the triptons, so I could dose effectively in hopes to kill the beast and I was scared to death, I was still getting hit pretty regularly and I was taking 1 to 2 injections a day along with an amerge 2.5 everyday but I decided to just "man up" so I haven't had anything resembling a tripton since the 18th. I got hit pretty hard on the 19th at about 8pm and just worked through it, it lasted about 45 min.

I since haven't even had a CH. WTF???

Were the triptons making my CH worse? Because frankly I am just amazed, I haven't been PF since the end of February.

Is it just a coincidence?

Any thoughts on this crazy-ness?

I'm still going to dose with the schrooms to make sure I kill the beast.

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

Thanks Lance, I am one happy guy today. Slept great feel good no shadows, I've got a busy day today and I'm excited to get started. Hope your feeling well too.

Norm

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.

Quote:

No-one on clusterbusters seems to talk about the potential downsides of taking even a small amount of psychoactive substances...

Why don't you enlighten us?

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


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.

I would be very interested in any citations you can produce showing what the statistical probability is for developing HPPD with low-level doses of hallucinogens in the treatment of CH. I'm sure others would be, too.

One more question: how on earth do you hit the sack with a Kip 10?

ETA: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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   ;D

Yep. You caught me. It was somewhat dismissive. Because I've yet to encounter anyone who has ended up as you describe by using low level hallucinogens for treatment of CH. And I've encountered hundreds of them.

Time to put your money where your mouth is.

BTW, you're not helping your credibility gap by stating that you lie down with a Kip 10.

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.

Jerk, maybe. Personal attack - hardly. I just don't believe you when you can type and think pretty well, say you're going to lie down, and claim at the same time you're experiencing a K10. I'm calling bullsh!t. That's all.

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

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.

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

Brew wrote on Apr 26^th, 2011 at 7:44pm:

Jerk, maybe. Personal attack - hardly. I just don't believe you when you can type and think pretty well, say you're going to lie down, and claim at the same time you're experiencing a K10. I'm calling bullsh!t. That's all.

I know I'm a jerk...often...so I know one when I see one. I didn't see one here.

As to sleeping or lying down through a KIP 10, by KIP definition sleeping and being still are not possible above a 6. That tells me the KIP scale is either misuderstood or misapplied here. I've seen that on other threads, too. Part of the usefulness of the scale is how it defines our pain levels by the unique experiences of a Cluster attack. I can sleep through a migraine, a toothache, a hangnail, and even a really bad fever. I can't ignore, type during or lie down when the beast wants to dance. Just sayin'. Blessings. lance

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.

River rat, in response to your original post I may well agree with you but I'm not sure I'm brave enough to stay away from the triptans as I have no oxygen to use. I didn't realise till I had a neuro appointment a few months after my cycle ended. I reviewed my headache diary and saw I had way more hits the more Imigran I used. Didn't have an alternative and it may have been coincidence but I noticed it. Just not brave enough to test it yet!  ;D