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This morning's KIP scale level :-)



Hi all. New guy here. CH since 1983, July 18th, to be exact. 32+ Years. I guess the "old wive's stories" that it goes away when one gets old are not working here. So, CH-er since before it was called CH. It was called - You need glasses - or - you name it.. including a rectal exam. I kid you not!


None the less, there is a commonality among all the self-prescribed treatments I have used. They work like a charm... but only for a few cycles, if that many.


Here we go:

-OTC NS anti-inflamatories. You name it. I've taken them, and in massive amounts. Glad my liver survived the massive amounts of Tylenol I took between 1983 and 1987.


For a while (maybe 5-8 cycles?)  4 advils (200 mg ea.) + 2 actifeds (the old type, which had tripolidine) every 4 hrs. Eventually, Naproxen came into the OTC market. So... 2 advils + 1 naproxen + 2 actifeds.


-Creative "others":

1) Cubensis: it worked well for several years. However, it seems that over the years it takes more and more doses, and at progressively higher concentrations to elicit a long-term effect.


2) Morning Glory seeds: That's my new thing. I am still studying its short-, mid- and long-term effect. I have only taken it once before. Well, now too, with this cycle that just started.


Previously, I took 3 doses (40-80 seeds) over a period of a week. "Da Beast" went away after a couple of weeks, didn't come back until last week, 1.5 yrs later.


Parenthetically noting, the effect of any of the so called "creative treatments" is never immediate. In my case, it takes a buffer 1-2 weeks after the last dose for the episode to end... like clockwork. So, for me instead of a cycle lasting anywhere between 12 and 28 weeks, cycles may last 3-5 weeks when I used the "creative" approach. This depends on how soon treatment is applied once I get over my eternal state of denial regarding my diagnosed ailment.


Interestingly enough, for this cycle the return of "Da Beast" was like no other time before. This time it was very, very gradual, and spread over 1 month, or so. All the usual signs of it showing its ugly face were there, but, this time, it was just a little bit more of such every few days, and spread over a 1 month period. Eventually, pain started ever so slightly, maybe KIP 2, and lasting just a bit longer each time. As if receptor physiology was being affected a few receptors at the time.


So, what to do... what to do? I had about 1/2 of the seeds left from the first trial stored in the freezer, maybe 250 seeds. I had forgotten the dosage size, so I ground about 80, did the hydrolization process, filtered it, and downed the damned awfully tasting concoction. A bit lighter than usual side effect was experienced. However, no KIP 10 the next morning, which is the usual side effect of the seeds. The seeds were old, and likely loosing some of their potency is what I thought.


The signs of da beast kept showing up. I prepared another 80 seeds 2 days later, and figured that longer hydrolization period would extract more of the desirable agent from the overly aged seeds. 24 hr hydrolization in the fridge. Filtered it, downed it. No side effects what so ever. I figured the seeds were toast. Da beast is still rolling in, now like a damned flesh-and-blood 700-pound gargoyle going through the jungle with a flame thrower in one hand and a machete in the other.


Last 100+ seeds. Screw long hydrolization, and even filtration. Grounded them, put them in water, shook the container a few times over 1 hr period, and drunk the concoction right out of the jar, down to the last nasty tasting little granule and seed hull. BTW, I had not eaten anything during the prior 18 hrs. So, a totally empty stomach received this crap.


Their side effect hit me like a freight train (and I hate every bit of it. Reality is king with me). BTW, never listen to old Pink Floyd (pre-Dark Side of the Moon) after taking the seeds' tea. Too freaking depressing! None-the-less, Focus (an old hippie era band from Holland) is fantastic for this. This condition lasted for about 4 hrs, with the gradual landing of the "glider" well after midnight. Fell sleep. No KIP 10 the next morning, though.


The last 2 days after the seeds have been amazing. Not even the ever-so-present "loose lead ball rolling around on the side of my head affected". But, this morning KIP 11! I am being optimistic in that such is a good sign, since that is what it is supposed to happen when the seeds' tea is effective. My thinking is that given the whopping dose I took two days ago, the wake up KIP 11 beast that follows must have been slightly delayed. Finger crossed!


If you have read this far, here is a trick I learned by a mixture of logical deduction and chance. About 4 years ago, I went to my "magician" Doc, my usual walk-in clinic doc, as part of my bi-annual fact finding doc visit to find if anything had been discovered to treat the beast. I call him "the magician" because back in 1998 I fell ill, very. Lost about 40 lbs in a little over 2 weeks due to this mysterious ailment that the three specialist I visited previously concurred was pneumonia, and treated it accordingly without improvement. I went in to see "the magician". He took one look at me and said - you have a gastric ulcer... Prescribed accordingly, and in a week I was back on my feet!


Anyway, this time it was different. I received the usual look of skepticism about my symptoms, and from none other than from "the magician". Oh no... - I thought. He said - Do you know how many CH sufferers I've seen in my 35 years of practice? I just shrugged my shoulders. He responded by making a zero-sign with his finger and index. Man... there goes the magician, too....


He sent me to a pain specialist. I had never been to one. So, I happily went, dropped my $170 with the receptionist, since I am self-employed, hence no health insurance (payment required up front for us state-of-liberty individuals by docs.) I was being hopeful that an actual "pain specialist" would come up with something. His BS became evident by the end of his first sentence.


He sent me home with a prescription for Topomax, and another for Fiorocet. Pharmacy told me they wanted a little over $300 for the Topo, and that the Fiorocet was about $15. I said no to the Topo, and only bought the Fiorocet. At this painful point, as many of you know, if somebody told me that eating road kill that had been pooped on by hawks and crows, subsequently left to dry in the middle of a public bathroom in NYC works... I at least take a couple of bites...  That is, if I can f-ing afford to buy the pooped-on roadkill...


The Beast showed up. I took 1 Fiorocet, just 1... It aborted the attack in less than 1 minute flat! What in the world is in this sheeet!?!?! Of course, research followed. Components: Tylenol, which stopped working for me back in the early 1980's, a barbiturate, which has nothing to do with this problem, just makes you stupid enough for you not to care that yer f-ing head is exploding, and caffeine, 200 mg/tablet? (about 2-cups of coffee worth/tablet)... Caffeine?!?!


Well, here come all the stories about rebound HA's and caffeine. Yes, I know about it... Pls spare me the lecture. I went through about 2/3 of the tablets prescribed, and the beast was gone in about 8 weeks. No, it didn't cure the cycle. What I figured is that it helped avoid the possible swelling (if there is such) associated with the beast, hence the irritation factor, improving my disposition (which I've found helps me shorten my cycles) and perhaps shortened the cycle?


6 Months later the beast showed up again. I finished the last 1/3 of the Fiorocet (this time it took a bit longer than 1 minute to abort an attack), called the doc for more. He wanted me to come in again... I thought - to call in for a refill at the pharmacy?!?! F-that. He just wanted another $170 to tell me the usual - U f-ed.. That's gonna be $170... thank you... So, I went to Walmart, and got a bottle with 100 caffeine tablets for about $3? Each tablet has 200 mg of caffeine, the exact same dose size of each Fiorocet tablet. "Stay Awake" is its shelf name at Walmart.


In so far, I am, at least for now, able to manage my attacks with something as simple as a large (and extremely, extremely cheap) dose of caffeine. Of course, it is following the same course as all previous treatments, and requires 2 tablets instead of 1 per attack, and it takes about 5 minutes to resolve an attack, instead of 30 seconds as it used to.


One thing that I do these days to help the caffeine be distributed faster systemically is 50 push ups after taking the caffeine tablets. It helps not only with the faster systemic distribution of the caffeine ingested, but also with: 1) O2 intake, which is known to have some positive impact during an attack for some sufferers, as well as 2) result in the body's production of its natural "soother", endorphin.  Further, in order to increase the impact of caffeine during an attack, I abstain from any caffeine intake when I am not in a cycle.


The Non-Rx, Non-OTC, Non-Creative Approach - Endorphin and Camel aspects. The longest remission period I have experienced since 1981, is 3.5 years. No Rx, OTC, ethical, creative, or otherwise were involved, no ailment-specifically-targeted treatments involved either. As the result of entering mid-life crisis, and the unreasonable mind set of wanting to live for ever that follows once one realizes life's finite quantity, I quit smoking, and was running about 3-5 miles every other day. I didn't have an cycle, or even a single attack during that period of time.


The Beast returned within 1 month after I quit running, and began smoking again. This is simply the data I have. I understand that many say that smoking has nothing to do with it. I can share this much; if I am at the onset of an attack and light up, the attack comes quicker and stronger. If I light up in the middle of the attack, it gets stronger and lasts lots longer, while having a direct correlation for me with the - Oh God! attacks (KIP 600,000?).


Once again, I cannot over-emphasize enough that this is the case for me, and me alone. Some may share this data. Some may have not experienced an increase in frequency, duration, and/or intensity attack-smoking correlation. And that's is exactly the thing about the Beast. There are so many variants, and correlating/conflicting data from sufferers as a whole that it seems as an unsurmountable task to find a solution for all.



At any rate, I have what some consider unreasonable aversion to Rx (no, no tree-hugging mind set sheet for me). I have seen plenty of tox studies while I was a research scientist in big pharma. Yikes!


Once again, I go to the "Doc" every 2-3 years to find out if I missed something in my constant independent research. A few "promising" things pop up here and there sometimes. Meanwhile, and as far as I know; nothing yet, folks. Sorry.


Wishing PFD to all of you!




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Hi dreamrider and welcome to the community!

Very thorough intro post,however, I didn’t see a mention of oxygen? As to new developments, read up on 5-MeO-DALT in the busting stories section....This process was developed by a member here a couple years ago and is being used by ch'ers worldwide with much success!

We began dancin with the Beast about the same time. ..early 84 here!

Dallas Denny

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My CH onset was 1980 so I guess this is the longtime CH vets thread so far.  :) Thing is though, I've been very lucky to experience ever expanding remissions, so compared to someone with yearly cycles, my onset would be the equivalent of more like 1990-something.


ANYHOO, that's a dam good and interesting post dreamrider, THANKS.


Especially since you go back a long time with CH like meself and DD, when you hear "oxygen" you may be likening it to the only way it was prescribed in the bad old days of yester-decades, which was low flow, rebreather, which wasn't so effective for a lot of us. Meh, come to think of it, as informed as you are, I suppose you're actually well aware of the high flow 100% O2 that has become heavily favored by modern day motivated CH'ers, but thought I'd cram my patented little mini-rant in there anyway.  :P


The morphing of the way your CH cycles behave sure is the same sort of thing I've seen a lot of other long time headbangers report.


Here's hoping that kip 11 slapback was indeed a final death throe for da beast for this cycle!  :o

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The O2 thing I have heard plenty about, and regarding the hi-flo dosage. 1) Can't get a doc to issue Rx (they want to go the "druggie" way), 2) Damned expensive compared to caffeine tab ($0.04/attack) + 50 pushups (arms may explode one of these days).


Regarding #1 above, and one of the things that really made up my mind in leaving pharmacology research, is that I concluded that most meds are "bad patches". Simply, they don't cure crap, while keeping the patient pumping billions of dollars into the healtchare industry for days, weeks, months, or even the rest of their lives since they were diagnosed with whatever.


What every body needs, and as unrealictic as this expection might be, is a cure, be it diabetis, cancer, or CH. Such will not be achieved for this, or any other man ailment for as long as there are "bad patches" making lots of people very wealthy. Example, as it specifically pertains to CH: Is there any rearch regarding the hypothalamic projections variations in CH sufferers? What is the role of such in Nuclei of Raphe as it pertains to CH and the projections before mentioned? Is there a genetic aberration involved in the CH development? What is the role of the GABA receptor in all this? Is there a transcription problem in protein synthesis of 5HT (name your sub-type of choice) receptors? Why is there mast cell involvement in CH attacks, as some papers suggest? Does that mean that the attack is in part an allergic reaction?!?!

Well, I look at it this (with the silver lining in mind, as always); at least there is no longer some quack putting a finger up my rear end to see if there are possibly polyps, or something up my rectum, which may be triggering my headaches...

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If you really wanted O2, you could either (a) try to persuade a doc with the substantive medical research; (B) find a doc who is not an idiot and who will prescribe it; or © set up an O2 system using welding O2, as many many people have done when (a) and (B) failed.  If you want information/assistance with any of those possibilities, let us know.

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G'evenin dreamrider!

Good info CHfather gave ya on the welding oxygen rig....I've been using it for over 6 years and it works great, you don't have to deal with idiot docs, and it doesn't cost any more if as much as medical O2!

During the course of an almost 16 week cycle this summer I spent a total of $80 on 3 large cylinders and still have half a tank in reserve for my next dance lessons with the Beast! In the past I leased tanks with $100 deposit, $6/mo lease, and $17/refill....my supplier quit leasing so I had to buy the cylinder this year for $300 and pay $20/refill.

I should add that it's only because I busted every 5 to 7 days through out the cycle that i was able to use that small amount of O2.....I can dispatch the majority of my hits in less than 5 minutes....busting and welding oxygen has more than likely saved my life!


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Dreamrider, I see so far some of the more popular and widely adopted newer therapies have been mentioned such as the D3 regimen - if I may suggest considering more of a focus on message boards than doctors for learning what's new (if you haven't already been doing so), that's where I've been noticing CH'ers finding their most effective strategies. Personally I've been partial to this message board.


The annual clusterbusters convention is good too for learning of the freshest developments from medical and non-medical expert types.

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