Discouraged at the sister site CH.com

[Bonkers]

This is a completely different type of treatment and it's difficult for me not to see it in a completely different light. Almost every CH medicine that has been effective for most patients - save oxygen - has been hazardous to human health. The careful use of psychedelics has been shown to have a 70-80% success rate and (I hope I don't get beat up for saying this) they're as physically innocuous as oxygen. Sorry, but I just can't seem to get oxygen, lithium, shrooms and Imitrex all in the same bucket.

[lucidity-]

as physically innocuous as oxygen

Let's not forget that oxygen, while safe for people, is not without its risks. It's highly explosive. I've heard stories of people with a cigarette in one hand and oxygen mask in the other.

Also, a two-second search on google news produced this story:

GULFPORT, MS (WLOX) - Gulfport firefighters battled a house fire on 31st Street late Wednesday afternoon.

Residents nearby said they heard a loud boom around 4pm. Police believe an oxygen tank exploded, causing the fire.

It's believed one person was inside the home. An American Medical Response ambulance was on the scene.

I'm sure there's lots more every year.

[lucidity-]

My point is absolutely to be careful when using oxygen; note that I said it is safe for people. I was trying pretty directly to draw the connection between it being explosive and people smoking while using it. To be clear: I absolutely and totally do not discourage the use of oxygen! In the first place, I am not a doctor, and I would not tell anyone to go against their doctor's orders. In the second place, I think both the short-term and  long-term side-effect profiles of oxygen (which, as far as I know, are both zilch) is really, really preferable to most of the alternatives (just a few I've seen recently are more headaches, worse headaches, and the need for hip replacement.)

Getting out of bed in the morning is a risk; you can fall and break your neck. The risks of cars or street-crossing would be totally irrelevant to the thread; note that I was quoting Bonkers, who had just called oxygen innocuous.

My gig is certainly not to disagree or make obscure points, although my points will probably be obscure at times because that's just the way my mind works, I'm curious about a lot of different things, and I remember a lot of random trivia. If any individual feels that I'm getting old, they are more than welcome to ignore me. I feel comfortable given the number of 'good point' posts to my credit that the general sentiment is not that I'm here to be disagreeable or show off. One of the reasons I love this board so much, and took to it so quickly, was that there was a welcomeness to different points of view, instead of the usual flood 'me too' and 'i agree' posts. Also, when there is debate, it seems rational and well substantiated, instead of the usual ridiculous flame wars full of ad hominem attacks and unsourced "facts."

Sorry if I rubbed you the wrong way. I promise my intention in being here is not to be President and Founding Member of the Piss Off Jay Hedges Today Club. From everything I've seen, you've been a wonderful help to many people, Carole comes to mind off the top of my head, and I do recall that you offered to help me get oxygen if I wanted to give it a shot.

As a final note, I wasn't trying to make this a pro-oxygen / anti-oxygen / let's take sides and circle the wagons thing. I think it's a statement about where our culture is today that people so quickly frame things in those terms.

[Bonkers]

Please, please, I don't want to fight - just to maybe add a little information. And, I don't mean to be petty. I just think it's interesting to note that oxygen is NOT explosive. It's not even flammable. It supports the combustion of things that are flammable. A spark in the presence of a lot of oxygen and a bunch of stuff that's flammable is what creates an explosion.

[lucidity-]

Bonkers, I bow to your superior erudition and greater precision.

[Cassidy]

OK, I have a question. The heat index was 110 degrees around here yesterday, before the 85 mph winds blew thru and the lights went out.

I saw on the news, can't remember if it was local of national, but someone had an 02 tank in their car. Temp. inside the car went sky high and the tank and car exploded.

So what was explosive? The 02? or something else like the pressure of the tank in extreme heat? Or what?

I do not want to fight, I just was pondering the cause of the explosion.

And what the hell is erudition?

So many questions, so late at night. Leslie

[lucidity-]

Cassidy: In this case, it was, at least initially, the pressure in the tank ruptured the tank. Gay-Lussac's Law states that by increasing the temperature of the gas, the molecules' speeds increase meaning an increased amount of collisions with the container walls. There's a good reason aerosol cans say do not dispose in fire, do not store in heat above X degrees, etc. Depending on the size of the tank, and the size of the car, and how airtight it was, the materials comprising the interior may have flashed when the atmospheric concentration of oxygen shot up. For example, in a atmosphere with a high enough concentration of oxygen, flesh itself will burn. Take a look into Apollo 1. This is used as a weapon in Kim Stanley Robinson's excellent Mars trilogy - the bad guys ramp up the oxygen in the tent colonies and send in incendiary flares.

Erudition is "profound scholarly knowledge."

[Cassidy]

Lucidity-,

Thank you for that information.

I believe it would be smart to have a deep respect for 02 tanks and handle with care. In this situation, in regards to clusters, when some may say 02 is their best friend, treat her gentle. Sometimes I feel that is not stressed enough.

                                                        Leslie

[Chad]

I just want to chime in: I absolutely agree with the consensus that is emerging here: different strokes for different folks.

Bingo on that one!

There a many on CH.com who cannot do this alternative therapy for whatever reason....maybe their jobs, they're afraid, worried that it is in most cases..it's illegal etc....

I went this route because I have experienced hallucinogens in college in a recreational sense and know i'm not going to freak out or anything.  As I wish to not feel that "trip" anymore, i'm lucky to have found the rivea corymbosa seeds as my first option in prevents. 

The bottom line is i'll do anything to rid of these cluster headaches and if that means I eat dog shit, trip, do weird exercises, whatever...i'll do what it takes to remove this pain from my head.

[Dallas Denny]

The bottom line is i'll do anything to rid of these cluster headaches and if that means I eat dog shit, trip, do weird exercises, whatever...i'll do what it takes to remove this pain from my head.

Bingo on this one as well Chad!!!   

I sooo hate it that , for whatever reason, "alts" are not an options for every sufferer!!!  Hopefully, our dreams of having BOL as a "legal" treatment will come true in the near future, those barriers will come down,  and everyone with this affliction will be able to experience the "Magic"!!!

DD

[lucidity-]

Denny, I agree it would be awesome if we could get every CH PF days. However, I think it would be a loss if that means the "magic" of the psychedelic experience is lost in favor of a "normal pill". I understand why people here are very careful how they advocate; there's enough stigma without being labelled druggies or hippies. However, if, as Bob suspects, many CH also have PTSD from their years of intense suffering (chronic and wracking pain, misdiagnoses from doctors, side-effects from treatments, disbelief and non-understanding from friends, family, and coworkers, etc.), I think there's a real benefit lost by the switch to BOL, because I don't think we're going to see the same sense of wellness with BOL we see with psilo or LSD. Only time and clinical trials / accumulated experience reports will tell. But I suspect that once BOL is available, the tiny window of opportunity to research with LSD/psilo/MDMA will slam shut. "Do your research with BOL; are you a pleasure-seeking druggie hippie or a scientist?"

[Dallas Denny]

"Do your research with BOL; are you a pleasure-seeking druggie hippie or a scientist?" 

Well lucidity-.......for 15 years of my life beginning in late 1968 I was indeed a peasure-seeking druggie........had some very enlightening experiences and some that were pretty damned dark and scarry!!  And at 63 years of age, I am now an "old hippie".....expect that will never change...lol!!!

However, if it weren't for CH in my life, I can assure you that I (and most here) would never have entertained even the thought of  revisiting these substances.   The "magic" I refer to is only associated with being PF and not with the psychedelic experience .......so for me, BOL will be the ultimate "magic"!!

DD

[lucidity-]

had some very enlightening experiences and some that were pretty damned dark and scarry!!

Same for me.

would never have entertained even the thought of  revisiting these substances

=(. I'll certainly always have a warm place in my heart for, and be willing to dance with, these substances. All I have to do is remember how I felt with my toes sunk into the wet grass, feeling the pouring rain run over my face, watching the entire sky change color eight times a second, not just yellows and blacks and blues, but oranges and greens and purples, while the lightning flashed wildly, connected to the universe and the divine, certain that the world was good, and so was I.

And just to clarify, my "Do your research..." quote is what I'm anticipating the scientific community will say to requests to do research with hallucinogens if BOL gets approved, it wasn't something I was saying, in case there was any confusion.

[Bejeeber]

My thoughts about BOL vs. LSD/Psilo is that there is no way doctors in the near future are going to prescribe hallucinogens to patients.

But if BOL was on the fast track to approval, it is quite conceivable that before long we could see docs prescribing it for CH.

Plus I'm amongst several others here so far who have reported they've had past psychedelic experiences, aren't afraid of them, will gladly embrace them to stop CH, but will only do it to be free of the CH, and otherwise would prefer not to go there anymore.

Let's get mainstream docs widely prescribing BOL (if it is proven to work), and if people want to pursue hallucinogens for CH and/or PTSD, let them take that on independently.

[lucidity-]

Bejeeber: *Nod* Suffice it to say, if BOL were put to a vote, I'd vote yes, despite my personal preference, because it's the "party position", and I understand the need behind that position. Getting people pain free is simply the top and absolute priority right now. Dealing with any other issue can be the "next thing on the agenda."

[Bonkers]

The psychedelic experience is attractive enough in its own right that I doubt we'll ever see it disappear. I too look back on the '60s and '70s fondly. I remember taking drugs that I didn't even know the names of. Those were fun times. But I don't want to go back. I'm not much closer to enlightenment now than I was in my 20's - but I am closer. Part of that may be do to tripping in the '60s and '70s; I don't know, I think I'd give the edge to time and the normal experiences of life. Some may consider tripping to be a side-benefit of taking these substances to treat their CH. That's cool. But anyone who busts their CHs with psychedelics and finds the hallucinatory aspect of that experience to be the most wondrous part of it - well, I'm afraid that they just didn't have CH to begin with. I would like us to consider our use of psychedelic drugs to bust CHs as a stopgap. An effective stopgap that we must use and provide to others to use to bust their CHs until the scientific/medical community comes up with BOL or something like it at a price point that makes it available to anyone, anytime, anywhere in the world that has CH. Until that happens, we're just gonna hafta grow our own medicine 'cause nothing else works.

[lucidity-]

But anyone who busts their CHs with psychedelics and finds the hallucinatory aspect of that experience to be the most wondrous part of it - well, I'm afraid that they just didn't have CH to begin with.

I hear you. I'm probably migraine, not cluster, although it's an open question, and I won't really be able to figure it out unless I get another episode of attacks, and frankly, I'd rather stay attack free than be able to say with certainty which it is. My intellectual curiosity doesn't stretch to welcoming that level of pain. Certainly, if they made hallucinogens prescription, I would pity any fool who wished CH or migraine on himself as a way to get a script for them, and am quite certain that after the first attack he'd be begging the doctor to take the pills back if it meant losing the disease, no matter how wonderful the trips were. Pain is an evolutionary mechanism that gets organisms not to do things that lead to genes not being passed on, and it is extremely efficient at it. To our dismay, it also gets triggered for a host of other reasons.

[tingeling]

Experience's with hallucinogenic`s, yes, it may be pleasant and fun and all of that.

But, as a chronic f ex. For how long would normal grown up people consider it that fun, week after week, month after month, year after year?

I think that you get to a point, and that is more or less pretty fast, and exactly because of how powerful experience's with such a potent drug might be.

And we`re not a exhaustive source of intellectuality either, for what that reason mathers, not, due to this treatment.

Intelligence, intellect, yes, we all have it. But keeping up with reality and other living people around us, can be more important, than to explore the potential of our intellect. You got to have somebody to use it with as well. To adjust with your surroundings, is an important side of our human intelligence. Some consider it to be one of the most important part.

And i have to say, after being maybe lonely because of this condition, feelings of being outside from what everybody does, i would rather go outside, jumping on one foot with my neighbours, than sitting in having a intellectual conversation.

When you stepped out from the dark, and begin to once again form a normal life, that`s the only thing you long for. A normal life, not trip around a couple of times a month. If that continue to be your wish, then i would say you may have developed a problem, or should have some expert help to go on in your life, if you cant find out how to do so. And i then mean when we get more or less pain free.

When you lived with this pain everyday, year after year, you just want to be normal again. That`s all really.

And we need that. That`s why it would have been very nice to be able to just have a couple of drops with BOL in a glass of water. Wednesday, after work, between kids football practice. Then we function in everyday life. That`s life, simple as that.

That is what i longed for, all this years at least. That was my dream. To participate in everyday life.

I had my dream fulfilled thank`s to Cluster busters, BOL can make that happen in the future, just in a easier way to allot more people.

That`s how i see it :)

[alleyoop]

I had my dream fulfilled thank`s to Cluster busters, BOL can make that happen in the future, just in a easier way to allot more people.

That`s how i see it

tingeling, I've said it before and I'll say it again, you are wise beyond your years!

Even though your native language is not English, you have a way of expressing yourself that would make any intellectual take notice.  Your insights are truly inspiring!!

Thanks for being here and sharing. 

[jayhedges]

a chat room that might be of ineterest to any of you who are migraine sufferers...

http://www.healingwell.com/community/default.aspx?f=31&m=1639344

[tingeling]

Being CCH with 4-9 attacks a day, i had to get on a higher dosage. And that is also described at info about this treatment. It had gained such a foothold, so complete, there wasn`t a medicine that helped.

Small doses didn`t do a thing. I started low, to get the lowest dose working. That also slowed down the total remission, but gave me the chance to use smallest dosage needed.

But the recreational doses, doesn`t go any near that direction.

And as time goes, i will try to lower and lower it. Because i don`t go for any effect just for fun, only the therapeutic effect that helps us, the one we`re after.

[Guest]

The recommended dose of psilocybin for the treatment of CH typically produces no halucinagentic experience. I hope those sharing their tripping experiences don't confuse newbies, or inhibit the mission to have these treatments become endorsed by the medical comminuty.

So do you think that those of us who NEED!! higher doses of psilocybin to beat CH should refrain from posting our experiences then?

Where would you, & others be today if I, & others hadn't stuck our necks out several years ago to keep pushing for this treatment.

Many sufferers on this forum post there experiences of higher doses so newbies can have a better picture of what to expect, should they need to increase the dose size.

If whilst doing this, they enjoy the experience. WTF is the problem?

CArl...   

[tingeling]

If whilst doing this, they enjoy the experience.

Agree. Because when you first gonna do it, i certainly would like it to be as comfortable as possible.

Where would you, & others be today if I, & others hadn't stuck our necks out several years ago to keep pushing for this treatment.

And thank you so much for that. I wouldn`t have been here at all. Thank you.

I respect you guys more than anything.

Tingeling

[jayhedges]

CArl, I don't see you on this string so don't think my comments were in response to anything you said, atcually not aimed at anybody, just a comment.

[Bonkers]

I'd like to second tingeling's expression of gratitude toward CArl and other pioneers who had the courage to stand behind this amazing treatment before anybody knew about it and when everybody was afraid of it. What huge balls!

Forever thanks.