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(Message started by: awbootrear on Feb 22^nd, 2003, 9:26pm)

Title: new member: best pain killer?
Post by awbootrear on Feb 22^nd, 2003, 9:26pm

Hi group, delighted to have found you & great site. I'm 29 and have had classic ECH since ~12 (chopstick jammed in and above left eye, winter onset for 2 months@1/day, 1-2hrs each, EtOH/dehydration? definitely triggers), undoubtedly kip 9, though it sounds like many of you may be 9.5.

I've tried so many different preventative and acute treatments but usually resort back to Vicodin to ease pain. It doesn't really do anything for the CH per se, just makes the rest of me feel better to compensate - like a reward for putting up with the enigmatic bugger. Many of you have probably tested different pain killers - would you recommend anything over Vicodin?

Title: Re: new member: best pain killer?
Post by domm on Feb 22^nd, 2003, 9:52pm

awbootrear - I never found any OTC or prescribed pain killers than did anything for my CH, although I never got into the real heavy stuff.
The best pain killer - Oxygen and / or triptans
good luck
domm

Title: Re: new member: best pain killer?
Post by Charlie on Feb 22^nd, 2003, 10:30pm

Welcome aboard but sorry you had reason to look for us. Stick around because there are a lot of good things to be learned, some fun, and friends to be made.

That was a great description of the ineffectiveness of painkillers on CH. You are right and they take to long to work anyway.

What follows is a technique learned from my old neurologist. It's helped many people. Give it a try:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: new member: best pain killer?
Post by Mark C on Feb 22^nd, 2003, 10:37pm

Welcome aboard awbootrear,
Sorry you need us. I have suffered from CH since my early teens. I have done every drug known to man in excess, it should have killed me. Everything from IV Morphine to Demerol to Percosets.....everything. No medication designed to control pain has had an effect on my HA. The triptan family of drugs is the first thing to ever stop the beast. Go young man and surf the links here and on the OUCH site to begin your CH PHD. I will attach a favorite link to get you started.
PFDAN's
Mark

http://www.clusterheadaches.org/medications.htm

Title: Re: new member: best pain killer?
Post by RicoVon on Feb 22^nd, 2003, 11:15pm

Oxygen.... Nature's miracle!!
That don't work.... shoot the imitrex...

Title: Re: new member: best pain killer?
Post by cootie on Feb 23^rd, 2003, 2:33am

Hi awbootrear....I don't know of any pain killer that works for CH...I'm a supporter....but have never found vicoden to even TOUCH the HA's I get.....wish there was a miracle cure for us all !!!! Goodluck to ya.....O2 is something you should check into big time !!!! Vicoden's make me peuk.....blahhhhhh......Pam-that'd-rather-honk-then peuk

Title: Re: new member: best pain killer?
Post by 2late on Feb 23^rd, 2003, 6:58pm

had V's for 2 months after back surgery,worked wonders on my back didn't do a thing for my head, 02 & trex for me! .......2late

Title: Re: new member: best pain killer?
Post by jimash on Feb 23^rd, 2003, 8:23pm

I WISH someone would give me some damn Vicodin.
That said, While you are waiting for that drug to work,
pick up some 10pound hand weights.
lift them over your head repeatedly while breathing deeply.
Run in place while doing alternate curls with the weights until you feel some subsidence of the pain.
Sit in a dark room with your head free and your left arm elevated.
avoid tight collars and jewelry.
Jim

Title: Re: new member: best pain killer?
Post by awbootrear on Feb 23^rd, 2003, 9:29pm

Thanks heaps for all the replies.
I'll definitely try the blood diversion techniques.
Vicodin probably helps me somewhat thru euphoria rather than stopping the pain (better than nothing for me though), and yes, they are especially unpalatable when you chew them up to make them kick in faster!

Things that can definitely cause them:
alcohol, lack of fresh air
Things that didn't work for me:
no more alcohol, medical 02, Imitrex nasal, lidocaine nasal, ergotamine, maxalt, bee pollen, lots of fluids (though haven't tried the H2O torture)
Things that don't work but make me feel better:
vics, marijuana, caffeine, hot showers
Things that might have worked but unsure:
osteopathic cranial manipulation

Not looking forward to the shots either,
Alistair

Title: Re: new member: best pain killer?
Post by sailpappy on Feb 23^rd, 2003, 9:37pm

;D ;D Here it come's, the unpopular and unaccepted answer, I have been severe Chronic for 34 years, done every pain med made, Vicoden didn't work at all, in fact made them worse and made me sick to my stomach, vicoden is a brand name for Hydrocodone, many others by different names all the same drug-
Percocet- Oxycodone, same thing, many brands out there, same drug, some have Acenomeniphen, some have asprin, some have Ibuprophen
I have done every brand and they never helped, Done Demerol, Morphine,methadone,darvocet,darvon,Nubain,xylocaine novacaine, cocaine(pharmicutical),Sumatriptan(Imetrex) other triptans, the list is so long it would take me all night, but in the 33rd year I had a Neuro put me on Oxy Contin, it's time released and you have to be monitered closely for the first month or so, but this drug has been my silver bullet!
For the first time in 34 years I have been pain free from the Clusters, until this drug I never had a remission of more than a few hours! I learned to live with it, to endure it, but my quality of life was really bad, I couldn't leave the house without a cooler full of crushed ice in a gallon ziplok baggie.
Jonny keeps refering to this as the same thing as Heroin, I was a Heroin addict when I came home from Nam, because no one believed me about the attacks I could not get any medical attention to speak of. I took myself off the Heroin, not by force but by an educated decision. I have suffered both the pain of the clusters and the guilt of considering starting to take pain meds again, I stayed on Talwin for 6 years but it never stopped even 1 attack, just took the edge off, sort of!
I don't recomment this to anyone that has not exhausted all the resources for headache meds, but for me it has been the miracle that I waited a life time for!
There isno high from this medication, maybe if you melted it down and shot it up like a junkie you might get a high, but I take it like prescribed, right now I'm at 60mg per day. 30mg in the am and 30 mgs in the evening, they are 12 hour time release and I have been reducing my doseage to find the very minimum amount I can take and it still be affective
This is not a very popular subject here, while most here see no corallation between drinking beer and clusters, pain meds of any type are considered a taboo!
Just a bit of a warning before the Drug Gastpo start their campaign to stop you from thinking of that avenue!
Take it with a grain of salt Bro! Pappy
http://www.gifs.net/animate/sungulls.gif
http://www.gifs.net/animate/sailboat.gif

Title: Re: new member: best pain killer?
Post by Karla on Feb 23^rd, 2003, 10:27pm

After exhausting all avenues of medications to prevent my ha from occuring and failing time in again I finally decided to try something unconventional. I tried Methadone. I have been pain free for almost 5 months. This has been quite a miricle drug for me. I have no high and I am not experiencing any side effects except tiredness. I know of another person that tried it and had a very bad experience so as with all meds it effects us each differently.

Title: Re: new member: best pain killer?
Post by jimash on Feb 23^rd, 2003, 10:57pm

I am WAY sympathizing with the above posters.
The drug paranoia and propaganda is insane.
The only success I have ever had involved Pentobarbital. (Nembutal)
Phenobarbital does not hit the spot. Only pento will do.
If you were to research this drug on the internet you would think that
the Abbot Labs company made it only for use by drug abusers.
But that would be absurd, wouldn't it.
Now that Abbot cannot get the "Raw material" to produce enough of this drug to make the capsules that i take, (only ampules for Foetal surgery) I am having a HARD time getting any doctor to try to scientifically figure out what nerve this drug is caressing, and what other drug might do the same, REGARDLESS of some deluded dogooders fears .
Jim

Title: Re: new member: best pain killer?
Post by sailpappy on Feb 24^th, 2003, 12:20am

::) ::) Actually Nembutal is a drug that Vetranarian's use to Uthenize animals, My older sister was quite the Drug user and severe Alcoholic, she use to get it from a Vet frend of her's and shot it up IV. She also Died from substance abuse!
There use to be a product that was CaffergotPB, it had Phenabarbutol added and that helped some, but never totally abated an atack.
Like Karla, My Neuro tried me on Methadone as an alternative to Talwin, unfortunately thed didn't have the internet back then, Methadone was realitivly a new drug and in the PDR it said not to give Talwin to a Methadone user or it would throw them into severe withdrawl syndrome,it did not say anything about doing the reverse. I got 1 dose in me and began getting extremely ill, I was instructed to take the second dose and it caused my BP to drop out so bad they had to put me in one of those pressure suits that forces some pressure back until your system can recover!
Pretty scarry stuff Pappy

Title: Re: new member: best pain killer?
Post by awbootrear on Feb 24^th, 2003, 12:41am

Woah. I'm sorry to hear about your sister. Also about Nam and the heroin. And the clusters, too. That's heavy, man.
Well if it was the barbituates, they're also used for anesthesia at low doses as you probably know.
So I just wanted to say one more thing about the Vicodin because I don't want any of you to think I'm a junkie (I certainly don't take them during off periods): I know that it has helped me albeit in a minor way, lowering my kip level from 9 to 8 or from 8 to 7.
I haven't yet exhausted all alternatives fortunately...

Title: Re: new member: best pain killer?
Post by Svenn on Feb 24^th, 2003, 1:00am

Oxygene at 10L/minute minimum for 15minutes and if that does not help Imitrex-shots

This is God`s gift to us clusterheads

Svenn

Title: Re: new member: best pain killer?
Post by jimash on Feb 24^th, 2003, 1:53am

Pappy,
Actually Nembutal is a drug that Vetranarian's use to Uthenize animals, My older sister was quite the Drug user and severe Alcoholic, she use to get it from a Vet frend of her's and shot it up IV. She also Died from substance abuse!

You obviously have not read my story. I took nembutal every night for 9 years and it made me OK! It made my wife agree to have a baby and made me able to support them and buy a big home with a swimming pool instead of living in the ghetto and me working in a heavy metal club like we did before.

There use to be a product that was CaffergotPB, it had Phenabarbutol added and that helped some, but never totally abated an atack.

Ditto again my story CafergotPB which had pentobarbital (Nembutal) , not phenobarbital(which does not work)was the only thing that ever worked. Contrary to your above statements It was the standard for many years. Only really it was too much cafergot and not enough PB .When the proportions are reversed it is perfect for me . Sorry.
That is it. Only it. The one. Over and out . Good bye.
JIm

Title: Re: new member: best pain killer?
Post by miCHel on Feb 24^th, 2003, 10:10am

Hello Awbootrear,

Sorry you are here... but you are at the right place.

Just started a cycle this week after a two-year break (I guess I am a "lucky" one). Started taking Prednisone on the first day and, for the first time in my life, Verapamil at the same time.

So far, it has been incredibly succesful (a miracle I would say). Only a few "shadow" attacks this week. I know it's way to early to shout victory but, what the hell, I will take any good day I can. I did not have to use Imitrex shots yet (I keep them for the really bad ones).

Oh yeah! Over the last twenty years, I also have tried almost anything you can name OTC. Did absolutely nothing for me. I also tried Migranal (nose spray) twice, I swear it almost killed me. The two worse attacks of my life. But that's just me!

Good luck and keep us posted!

Title: Re: new member: best pain killer?
Post by brain_cramps on Feb 24^th, 2003, 10:27am

on 02/23/03 at 02:33:22, cootie wrote:

Vicoden's make me peuk.....

Pam: 'peuk'... Is that 'Puke' in French?

Title: Re: new member: best pain killer?
Post by scrumpies on Feb 25^th, 2003, 12:10pm

The best for me is Maxalt-mlt 10mg quick dissolve tabs. When the beast wakes me at night I take one and put it to rest in lest the 15 minutes. Its a wonder drug!

Lisa