Pinkfloyd wrote on Jan 11^th, 2009 at 1:15am:



i've been pf since i busted over a year ago. i'm glad i stuck around and i'm glad you put your hart behind this bob.

it's great to see your making pro gress

It's been a long time since I first started reading up on this forum, and an even longer time I've been suffering from CH, so I felt it might be pertinent to post some of my experiences, partly as I've just had my first complete remission in 15 years.

I've been a recreational user of psychedelics for nearly thirty years now, in varying amounts over the years, but generally a few full-dose trips a year, and plenty of milder ones too inbetween. Since 1993, I've been suffering CH every year between Sept 21st and December 21st - Fall Equinox to Winter Solstice.

Naturally, it took me some years before I became aware of the significance of the cycle, and it was actually picking mushrooms and experiencing the headaches at the same time year on year that made me realise something was going on. Ironically, I initially thought I was getting migraines from staring too hard at the ground!

Once I realised that the season itself was the trigger, and the rapidly-shortening days enabled me to predict when they would start, I then assumed I must be suffering from SAD, though experienced no symptoms whatseoever of that ailment, other than the time of onset.

Thankfully the internet eventually gave me the ability to diagnose the condition properly, and I approached various GPs over the years, some of whom were aware, others not, of CH. Various pills were tried with no success - Pizotifen, Sumatriptan, etc. Sumatriptan in particular caused very uncomfortable chest-tightening, that was almost as scary as the headache, though nowhere near as painful - more on that later.

My headaches generally came twice a day - around 4-5am, and then 12 hours later again. Not suprisingly, the loss of sleep and insane pain caused problems at work until a doctor's note at least confirmed to my employer that I wasn't faking it.

All the time, I'd been thinking about the significance of the fact that my headaches were less painful whenever I took mushrooms or LSD, or I just didn't have one at all, but I obviously hadn't made the link at all with daylength. Once I found the online research on treating CH with psychedelics, I decided to give it a go.

For the last four years, I tried with varying degrees of success, to get a handle on the problem - sometimes the headaches would stop for a week and then return, and once I actually moved the entire CH season back one month, but I never got them too stop, just fade in frequency for a while, or be lessened in intensity. Eventually I realised that my haphazard dosing times were probably the cause of the lack of success in stopping a cycle, as I was clearly feeling some benefit, but not succeeding where it mattered most.

The most eye-opening revelation for me was an experimental dose of a potent (and illegal) local anaesthetic, which I had assumed would be the worst thing possible. Not only did I have my first complete night's sleep in months, but the CH I had shortly after was incredibly mild, and stopped almost as soon as it had started.

I began using Melatonin a few years ago, in an attempt to suppress the night-time headaches, and within days, they had ceased. The daytime headaches continued however, which though interesting, was still frustrating! Still, that was half the headaches gone, with virtually no side-effects (as far as I could tell).

So last August, I decided to tackle the problem once and for all. Given that mushrooms were less reliable in terms of dosage, and the stability over time made me question the efficiacy, I decided to focus on using LSD instead, as it was reliably measured (liquid), and easy to ingest. It was also fairly weak, though high quality, and so one drop delivered (I'm guessing, based on effects) about 25mcg - not enough for psychedelic use, but perfect for this experiment.

Every Saturday, at lunchtime, I took one drop from the bottle - Saturday being the easiest day to manage it on for all sorts of reasons, but I figured the regular schedule was crucial, and less than one week separation counter-productive. Every night, beginning at the same time in August, I took 3mg of Melatonin.

Since that date, I have not had one proper cluster headache - a few shadows, and few 'visual migraines', but not a single CH. I decided to stop after the period would normally end, and settled for today as the last day of treatment.

My only concern with this, and it may be coincidental, but around the peak of my normal season (mid-November), I began experiencing what I believed to be early symptoms of angina (squeezing pressure in the top of the chest, and tingling pain in left arm) when out walking. Normally I'm very fit, and can walk miles in any day, but this issue began to worry me, as it seemed to have come from 'nowhere'.

I'm awaiting an appointment with a heart specialist to have checks made, and if I do have angina, so be it, and will deal with that as appropriate. However, my GP gave me a nitro spray on prescription 'just in case', though he hasn't actually diagnosed me with angina yet. I explained to him the dangers of nitro for CH sufferers, and got the blank look so familar to me on these matters!

So given my 'angina' feels identical to my single experience with Sumatriptan, is it at all possible that my self-medication with LSD is actually inducing mild angina as a side-effect - ie vasoconstriction? There is some family history of angina, so I'm not trying to avoid the issue, it just seems puzzling that it would 'come on' so quickly, and right in the middle of my CH season.

There are many other complications that could clearly make this difficult to separate out, and I'm not overweight, very fit, though I smoke - mostly cannabis these days, rather than tobacco. It's also been very cold lately, and I've had some level of emotional stress - all triggers of angina.

At the moment, the relief from no CHs vastly outweighs the pain of the 'angina', but I'm aware that angina can be fatal, whereas CH not, so I don't want to ignore it. Also I'm aware that virtually all my 'treatment' has been with illegal substances, and in the case of the LSD, almost impossible to verify absolutely in terms of purity and dosage, but experience suggests to me that it's legit, and pure. Notwhithstanding, I appreciate that it might be difficult for others to empathize or understand, and very difficult for most to replicate.

I'm just wondering, if I haven't bored everyone stupid with this, whether anyone else has experienced similar CH/angina polarity, and given that nitro will cure one and cause the other, what hope I have of treating the angina painlessly? Going back into a full CH cycle now would not only be totally depressing, but very inconvenient!

Thanks for your time.

I wrote this back in June:

The DAY Blake goes out of remission I'll be on the phone begging a 'buster' to help me dose him!!!!!  

Well, Blake's remission ended.

We're standing up to be counted.  

Results:  Very good.....actually GREAT!

Again, thank you Bob and all the busters for your continued work.

With gratitude,
Jackie & Blake

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.

Here here!!!!  Standup and be counted!  And I will stand up for this individual.   Are some of you offended?  I do not understand, this is not a push to "use" drugs, it is a declaration of something that this individual feels passionately about- the well being of other clusterheads.  I have wanted to write something similar myself, but I am a new comer.  I have often been frustrated (but still love it) with this site because of that!  I originally found the information here, but when I look at the cluster survey I am dismayed to see the statistics for this treatment are not included.  Illegality aside, this is by far the best treatment.  There are studies that provide insight as to the pathiophysiological mode in which pyscs work to treat cluster sufferers. It is because of the push by clusterheads that these studies are being performed, which may eventually lead to more studies and a cure!  This is why these statistics are important.
I've said this before- What medication can you take once or twice a year ($30-$40) with no side effects, FOR ANY AILMENT?  I am not claiming supiriority, or trying to cram shrooms down anyones face, everytime I'm on here someone says O2, O2 (which has not worked for me), why am I not insulted?  I cannot use Immetrix because of heart attack (probably induced from the immetrix SIDE EFFECT) I am not offended by the whole section dedicated to it.  I certainly would not withhold information about it (immetrix)to others if I felt it would help them. As a 30 year sufferer who has found relief ONLY through the conservative use of psilicybin, without any other ill effects it does make me wonder why more individuals do not try this, and why we can't talk about it?  Illegal smegall!!!

ArcticSpirals, you can put your fears to rest- these particular hallucinogens are classified as "ANTI-addictive".  Also, it's not like you'll be floating around singing Pink Floyd tunes for three days- so why does work even have to know about it?   

Yes, it is hard to find out about..it's a shame we still have to sneak around about it at all, when it has such a high success rate and no long-term side effects, which can hardly be said for most of the stuff we have to use.  It's even MUCH safer than your advil!! 

Its information I gald to recieve, no hurt in that. I do take milk thistle as a daily in fear of my liver just cuttin out on me. Anyhow thanks!

>sigh<  okay, I'm an advocate because it works so well for most everyone who tries it, and it's the only thing that has helped me at all (I've gotten about a week at most of relief at a time, and I'm on some other meds that counterract it, but that's better than nothing.)

But can't I be supportive of something I believe in for the simple fact of the amazing statistics on it?  Why do you feel the need to pick apart my post, like you've caught me in a lie or something?  That really makes me sad.

Yes, that adds up to about 18 hours a day.  some days are better, some are worse, but that's the average.  I put that on there to remind some folks of why I'm here...for support for a horrible disease that's tearing my life and my family apart.  Now, are you satisfied?

Sadder, More Depressed Paige

That's the point- nothing works for me!  

Let me clarify, though...(I just hate writing long posts, because I know what a pain they can be to read, so I've tried to be brief and give cliff's notes- but I'm always pleasantly surprised when you folks seem to really pay attention to what I've been going through!    I'll try to keep it concise, though.)

Okay, so this cycle started in June, and worked it's way up in intensity and regularity to where I was having regular 2-3 hour long hits about 6 times a day; but mine ramp up and down less abruptly than most of you, AND it seems to have turned on my migraines full-blast- so there's been the nauseous migraine stuff every day in the background.

My doc tried everything she could throw at me, including oxygen several times; stuff either makes me sick, or I have no reaction at all.  Keep in mind, too, that I've already tried all the usual migraine meds over the years for the migraines (a lifelong prob for all the women in my family) and none worked...also, my suspected first cycle ever 3 years ago they said "migraines" and tried it all and nothing worked for it then, either.  Same pattern- about 6 or 7 months of all day long pain.

So far, the only things that have helped at all:
1) my ADD meds.  This could be interesting.  First I was on Vyvanse, a time-release pro-drug; when the cycle started, my body started blazing through the stuff, and instead of 12 hours it was lasting about 3.  So she switched me over to instant release Dextroamphetamine (adderall generic) and I was dosing 40mg three times a day.  As I would acclimate to the drug throughout the day, hits would break through, but for the morning to about 2pm I would be (relatively) okay...BUT it took a tremendous toll on my body.  

2)Floricet.  I know, I know, narcotics=bad.   I would only take it once in a while, and it did help some; unfortunately, it would make it VERY hard to get up in the morning, or function much at all, so it was only a last resort when I really needed a break.  However, it's inconclusive as to whether it was helping the CH or just helping the overall crap factor.

3)the hallucinogens.  I've dosed 5 times now, twice with shrooms and 3 times with RC seeds.  Each time I do it, I'll get from one to two weeks of reprieve from both the CH and the migraines; but I'm on zoloft, and it's a pain in the patoot to detox, so I've been stingy about doing it...also, I don't look forward to the seeds because they taste SO BAD!!!    However, I feel so great after the shrooms, both emotionally and physically, that I think I'm going to get a grow kit (it's been way too dry around here to find much.)  Somewhere on the board I've spoken more about my history with them, so I won't go into that again.

So that brings me to the present day- after the toll it all took on me last semester (and doing 12 hours of studio art classes)  I'm dialing it back.  I'm back on a normal dose of the ADD meds,  i stopped using the Floricet, and I'm taking occassional dramamine to take the edge off the nausea (I've also cut all my Graphic Design classes so I'm not on the computer as much.) 

My next plan is to start getting more regular and frequent with my shroom or seed dosing.  I thought again that i had kicked it after my last seed dose, but it's back...and now the pattern and style of hit is changing...as of the past few weeks, I really can't tell what's going on.  But I've gotten bitten so many times after thinking it was over that I'm loathe to make any predictions.  Like yesterday was hell- I got a hit at 9am and it lasted all day; but today was pretty okay until about 4pm.   

The good news is that I've gotten in with DARS here on campus, and they are looking into what they can do to help.  They might at least be able to get me in to see a neurologist and and get the diagnosis down pat.  My doc is pretty confident, but as a University Health Center GP she doesn't feel she has the authority to push this much more. 

>phew< So that's where I'm at...hopefully with DARS I can get somewhere, and maybe with more regular dosing I can kick the beast.  And I'm sorry if I sound gruff sometimes;  actually, half the time I'm just being funny, but it doesn't come off so well in type, does it?    And some days I can't cope much at all...but we all know about that all too well.  You know, my therapist is in awe of each and every one of you; he deals with chronic pain patients a lot, but had never run across CH before, and he is amazed at the strength and tenacity of this group of folks- he really gives us props for what we go through, and he totally agrees that no one but a fellow sufferer could understand what we go through.  And he is very grateful that I have a group like this to be a part of, and so am I. 
Peace y'all,
Paige

Damn, Paige....you are all messed up

Let's see....clusters, migraines, add, art student ....wow. I bet that's like the half of it....

Just hang in there, and be 'radar', and you will have major support around here.  

UnderTheRadar wrote on Feb 10^th, 2009 at 1:59am:

Yep, I love it! Go Samir!

Glad there wasn't any misunderstanding.

Now please return my red Swingline stapler, if you please.

Thanks~ like I said, information is a blessing. Gives me ideas, areas to go search and explore.
I'm not an addict of more than smokes and embarrassingly~ computer games...but I worry I will find something as an escape instead of a cure. Which is why I consider my gaming an addiction.
I returned my first bottle of vicodin because I was taking one for foot pain and two for inlaws
I have been reading..alot ..and found out there is a new mushroom farm close by and she quietly mentioned she does medicinal's as well. I think I will take more time to research. Thanks for the info, and encouragement.

I'm mostly "shadowing" in the 3-6 range now, constantly, with occasional breakthrough Satan hits (as of the last 2 weeks, that is...still no real pattern.)  And i get a migraine about two out of three days.  I'm wondering if dosing again will help. 

I must add that whatever these things are that I am calling shadows, they DO come with pain- I've seen some folks describe their shadows as all the symptoms but withOUT pain, but these do hurt- just nowhere near the thugs I've been getting...but now the hits that do break through are like mack trucks- fast and hard.    It's been pretty damp around here lately, though, so maybe I'll get lucky this weekend!