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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> After 4 years, the beast is back (bringing clues?)
        
(Message started by: entelechy on Jul 9^th, 2005, 7:44pm)

Title: After 4 years, the beast is back (bringing clues?)
Post by entelechy on Jul 9^th, 2005, 7:44pm

I've been away, as has the beast, for over 4 years. I kept up a regular donation to OUCH as a sort of superstitious act of faith, but began to believe it was gone for good. Now another shadow lurks - two down today, more on the way I suppose. By golly does it come back fast! Yup, it's the old monster again... early days, so it's still warming up I suspect. But I thought I might throw in a few pennysworth of thoughts on what's happened to possibly trigger them again, on the off chance it gives some clues or insights. The last time I (thought) I posted on animal protein, but couldn't find it in a search. But browsing through the board again raised some very interesting stuff. So here goes, quick version... (the shadow is beating its wings, and I've just taken my first line abortificant - in the absence of anything else more specifically targeted at CH, all such drugs long cleared out: 3 Codis - dispersible aspirin/codeine - in a shot of coke. If I'm lucky, I'll be okay in 5 or 10 minutes, if not, I'll come back to update when the bugger's gone).

Last time I was here I don't remember reading anything about shrooms, but as a youth (I'm in my early 40s) I took them quite often, alongside various other recreationals. It took me years to sort out a proper diagnosis of CH and I self-medicated - lots of aspirin etc - haphazardly for a long time, so I can't figure any relationship with shrooms. But four years ago, after many years off the illucinogenics/hallucinogenics, I took some ayahuasca tea... and would compare its effects most closely to those of mushrooms. Somewhat later, as a regrettable side effect of that tea session (side effects, side effects, hey?) I also took, on and off, olanzipine and depakote for their ah mainstream purposes. One way or another, four years or so passed.

So why is the beast back?

I can only think about the most distinctive thing I did prior to its return which was to spend a month - the longest time I've been away from home in my adult life, working in the tropics in South Asia. There I reverted to a largely vegetarian diet of dhall (lentil curry), rice, a chilli-rich (capsaicin) side dish and papadoms. Pretty much every day (I like it!). Although I ate some meat once, and a little cheese on occasion, apart from milk in tea, that was the sum total of my animal protein intake.

On my return I splurged on favourites, especially cheese (fondues, toasties etc.) in large quantity. Within days, the beast is back...

My last 'finding' was that, as well as removing alcohol from my diet during an episode, that (based on a remark in a book about diet and pain, I'm afraid I can't remember anything more about it) by becoming strictly vegan - no animal products at all - and bunging lots of tabasco in the vegetable soup I was more or less eating all the time I was able to significantly reduce the intensity of the pain and the duration of the individual headaches, and possibly the length of the cluster too. Difficult to be precise becaus e as the episode progresses, I also started getting a lot of serious cranio-/osteopathy/deep tissue massage which seemed to help.

Not sure if that ramble sparks any ideas, thoughts or is of any use, but hope it might be, of course...

So I guess I go and root through to find some old olanzipine, and see if they're still flogging shrooms openly in London markets... and visit the doctor to find out if they've reintroduced ergotamine inhalers (withdrawn the last time I inquired, rather irritatingly) and start browsing the site again, trying to find some new things to try - the lidocaine/teething gel in nostril thing sounds interesting - and rediscover the exact spot on the neck to apply pressure on to mitigate the worse effects of the monster and stock up on vegetable soups and make sure I'm never knowingly not carrying Codis and Coke and generally hunker down to rediscover the beast and its proportions and all that jazz.

I'd add that it's nice to be back, but of course it isn't. But it's good to see that the community thrives (until there's a cure, which would be transform the community into ex-clusterheads

All the best,

John

PS I did post, I think here, long long ago and inadvertantly made a remark which didn't recognise that a lot of people here are chronic rather than episodic sufferers (of which I am one). I guess the idea of chronic CH is kind of beyond belief to me, but anyway, whatever I said was clumsily put, and I felt duly chastised, and pretty much kept shtum thereafter. So please forgive any unintended errors of netiquette, CH protocol or such like. Any errors are entirely the fault of the author - that's right: Mr Monster Cluster Headache himself. Although it seems my Codis-and-coke and swig of tabasco (thanks for the tip) have aborted this one for now... Cheers.

Title: Re: After 4 years, the beast is back (bringing clu
Post by cheNY on Jul 9^th, 2005, 9:03pm

Sorry to hear about the return....... it's been 3+ yrs for me & are now going through a cycle, a long cycle. I think my trigger was a food or I should say a spice. I eat Indian a lot, started to eat at a new restaurant & after 2nd time, did not feel right. Sure enough, a few days later the monster came back. Coincidence? maybe. but i switched to organics about 3 plus yrs & are very health concience...... well what ever it may be, they are here.
I recommend Kudzu, 5 days into it & all good pretty much.
Try it.
Good luck....... & hang in there.

Title: Re: After 4 years, the beast is back (bringing clu
Post by Topical on Jul 10^th, 2005, 4:12am

Sorry, I am a little confused. Do you put the return down to eating meat and cheese?

I have to wonder if you had done some travelling across time zones if it may have also been a trigger. You kick your hypothalamus up into gear for readjusting to the time. Maybe that was a possible cause? Dunno.

If you think it was the meat and cheese then go vegan again and let us know the results. I hope it works for you! Sorry, but I do find veganism to be a little weird. Are vegans allowed to breast feed their children? Seriously....I always wanted to know.

Oops forgot to say. Welcome to the board and hope you get PF quickly again. Take care.

Title: Re: After 4 years, the beast is back (bringing clu
Post by hdido on Jul 15^th, 2005, 4:26am

Sorry to hear that you are getting hit again, John. I don't think that anything that you did, ate, drank, whatever brought the pain back. I had a sudden remission that lasted for a bit over a year-just woke up one morning and no pain. It returned a bit over a year later when I was driving my car and listening to Joan Jett singing "Star, Star". It is a part of this strange disease that people, particularly chronics, will go into sudden remissions that can last years. I began as an episodic and there was an 8 year gap between my first attack and my second. Best wishes that your remission returns or that you find a good neuro who can ease your pain.

Title: Re: After 4 years, the beast is back (bringing clu
Post by javi_spain on Jul 15^th, 2005, 6:52am

Hello Entelechy

Sorry to hear about your return to cycle, it must feel pretty bad to think you'd grown out of it and then discover that you hadn't.

One little question, do you think the fact that you took ayahuasca tea is connected in any way to your four-year remission or were these two event totally independent.

I know it is a long shot but maybe it worked for you in the same way that mushrooms or seeds work for others.

Pain free wishes.

Javi

Title: Re: After 4 years, the beast is back (bringing clu
Post by tommyD on Jul 15^th, 2005, 6:36pm

Ayahuasca contains DMT- dimethyltryptamine, a very potent hallucinogen. It is an indole-ring hallucinogen like psilocybin, LSD and LSA, so there's a good chance it could have ended the headaches. BUT - DMT experiences can be very intense and disturbing. This is really NOT a recreational drug,
Back in the '60's straight DMT was smoked and the tipr lasted only about half an hour. But the trips were so intense, it never got very popular. Ayahuasca includes an MAOI which allows the DMT to be taken orally. But taken this way, the trip can last several hours.

Might work great, but I wouldn't recommend it as a cluster treatment.

More info:
http://www.erowid.org/chemicals/ayahuasca/ayahuasca.shtml

http://www.erowid.org/chemicals/dmt/dmt.shtml

Title: Re: After 4 years, the beast is back (bringing clu
Post by entelechy on Jul 18^th, 2005, 7:16pm

Hi again.

AWOL

Sorry not to reply earlier, but for some reason the 'ch' of entelechy wasn't working, so now I'm on 'k' instead. There's a surprise. Couple of things.

ON VEGANISM

I don't hold a candle for veganism (I like the breast feeding remark, but believe hard core purists don't mind the offspring drinking the milk, but not others - so wetnurses would be off the agenda!), though have been vegetarian on occasions in the past - I have no problems being an omnivore, apart from some aspects of factory farming, it's just that a veggie diet in India/Sri Lanka immediately reduces the chances of "Delhi Belly" and other food-borne diseases. Plus I like dhall and pol sambol.

But in the last three clusters I had, I became convinced, possibly erroneously, on the basis of this observation of the link between animal proteins and pain in a popular alternative health book I don't recall, that removing cheese, dairy products, meat and fish from my diet reduced intensity, frequency and overall cluster duration... this time, I'm not so sure.

After 5 years, am somewhat out of practice, just coming back to some of the psychological pits along the way, and still not seen a doctor after 2 weeks (tomorrow I do) and therefore self-dosing on coca cola & Codis (dispersible aspirin/codeine) which is fine if you guzzle it in time, and up to about twice the recommended daily limit, then you start feeling weird.

Cold air good, though, which I'd forgotten (reminder thanks to www.clusterbusters.com), so a spell in the freezer seemed to help.

ON MAGIC MUSHROOMS

In an utterly irritating coincidence, I spent last night reading up on shrooms - and yes, I do think Ayahuasca may have helped on the clusters, much as it hindered in terms of some other, rather negative, psychological consequences - and learned today that as of midnight last night, they have now been made utterly (Class A, alongside Heroin, Cocaine and other 'baddies') illegal in the UK. What timing, eh?

ON COCAINE

I remember reading some years ago that Cocaine was a third line remedy in treating CH... " Third line preventive medications include; IV dyhydroergotamine (DHE) given repetitively, and cocaine drops used intranasally on a daily basis." (and further details below) "(http://www.headachedrugs.com/archives/preventivemeds.html) yet a search of this site found only one, irrelevant, reference. Did I miss something? Is this worth trying? The principal of nasally-induced anaesthesia in that general area of the game seems more or less robust? Or should I start with Lidocaine and work up to the Class A illegal drugs if that doesn't help?

ON KUDZU

This looks exciting, so I'll be grabbing some of that tomorrow after the doctor.

BOOKS?

Here we have a GP (General Practitioner) system, so I don't exactly have a Neurologist (let alone one I could fire!) as I rely on the National Health Service, free to all at point of service: a visit to a specialist is months of waiting usually. So I tend to find myself educating them about CH rather than the reverse. I left the last serious CH book I had with my last GP before I moved - I wondered if anyone had any recommendations or are online sources (like this and Ouch etc) the best of the best these days?

And now the shadows flicker, so I'm off, but many thanks to the kind and supportive replies to the above... it's profoundly heartening, reinforcing one's sense of the essential decency of humanity, a beacon even from - and to - the depths...

Title: Re: After 4 years, the beast is back (bringing clu
Post by Kris_in_SJ on Jul 18^th, 2005, 8:33pm

Welcome back. Check your email, my friend.

Kris

Title: Re: After 4 years, the beast is back (bringing clu
Post by hdido on Jul 19^th, 2005, 1:03am

Tried prescription cocaine drops-3% solution-didn't do a thing for CH pain, didn't even numb my nose. Had it while in-patient at a famous US CH clinic (no names, but it is in Chicago). They sent around a drug and alcohol counselor who, after asking me if I used illegal drugs and I told him no, accused me of lying because my urine tests had been coming back positive for cocaine. In rather colorful language I told him to read my goddamn chart to see what meds I was getting before making self-rightious accusations (he was one of those in-recovery type counsleors, not too bright-not generalizing, just HE was dumb) and threw him out of my room (figuratively); never even came back to apologize! For paying $15,000 for 2 weeks there, you would think that I would at least get that as there were no medical benefits from being there.

Title: Re: After 4 years, the beast is back (bringing clu
Post by Topical on Jul 19^th, 2005, 4:31am

If the cocaine solution didn't even numb your nose then it's still somewhat up in the air. I was given lidocaine in a similar fashion, 3 percent. It did nothing.

Its interesting that caffiene seems to help people although it is a stimulant. I wonder if cocaine will have an even better effect coupled with the numbing. Unfortunately, the only prescribed type will be in that liquid form which apparently doesn't work too well.

Maybe you can ask around the vegan community to see if others suffer from CH or migraines or if it lessens either affliction?

There are a number of other food triggers like possibly chocolate; meat or dairy can possibly be a trigger but I have not heard anything on that until your post. How about a trip over to a Micky D and let us know what happens? (just kidding)... :)