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(Message started by: dentedgirl on Sep 14^th, 2002, 5:59pm)

Title: I'm new here
Post by dentedgirl on Sep 14^th, 2002, 5:59pm

Hello people. Don't be fooled by the user name. I am not a girl. My wife found this forum and registered with her name. My name is Mike and I am 29 years old. I have been a sufferer of "cluster" headaches for 10 years. I would be considered a "chronic" sufferer. I have headaches almost daily. They used to be on the right side of the head and lasting for about one hour. I have now been promoted to the left side also and about an extra hour. I can't help much with the medicine part of these headaches. The only meds I have ever taken were Cafergot, Verapamil, (spic), Stadol (nose spray) and Imitrex ( shots and pills). The only one of these to work seemed to be the Imitrex shot.
I have two different types of headaches. (Pain wise). Most are very bad but some are rather mild. I probably don't need to waste anytime describing how painfull these are so here are some things that I do to help ride them out=

1. Masterbation.( I am not a pervert, so don't take this the wrong way). 75% of the time, If I am able to get an erection, masterbating relieves alot of the pain and can make my headaches GO AWAY!
2. Drinking. The first couple drinks bring on a severe headache (the WORST!), but after, if I can continue to drink, and get drunk, I can go several days without a headache. I used to drink heavy one day, one day later, drink heavy agian and would be able to go at least a week without a headache.
3. Talking outloud. When I suffer a headache when I talk outloud, weather it be yelling or just foaming at the mouth seems to alievate some of my pain.
4. Moving very quickly. Shaking my legs very fast or my head and swinging my arms around quickly seems to help.
Not too much else. Could some of you respond to this post and let me know if anyone else has similiar patterns or habits. Please don't think I am some sort of FREAK. I just get these suckers REALLY bad and have for A LONG TIME!
P.S. Can anyone in here postpone their headaches? Like know it's coming, move around or pinch certian parts of the face and make it go away, but it comes back later even worse???

Please let me know if any of you have similiar habits.
Mike
P.S.S. I have a nickname for my headaches, The Butcher, do any of you?

Title: Re: I'm new here
Post by 2late on Sep 14^th, 2002, 6:21pm

masturbation & drinkin' as abortives? i don't think so,you sure you get clusters? last thing on my mind when the beast is visiting is a hard-on. oh well,welcome to the board. ..............2late

Title: Re: I'm new here
Post by domm on Sep 14^th, 2002, 6:28pm

Mike - welcome to the board, sorry you felt compelled to seek us out. Make sure you check out all of the resources available here (the buttons on the left) and the OUCH website (also to the left). You'll find a whole host of potential methods for aborting and staving off the beast on this board and on the medications board (there's a lively discussion going on about "the Big "O" on the meds board) so you're not alone.

You didn't list Oxygen as one of the things you've tried. If you haven't tried it, do so. Its a lifesaver for me and many others.
Good luck in finding the proper set of meds and things to do to stop the beast
domm

Title: Re: I'm new here
Post by Charlie on Sep 14^th, 2002, 8:21pm

Mike:

The masturbation thing has been discussed several times and it's buried in the archives somewhere. I think it has something to do with the vascular components of CH. My circulatory technique is a vascular thing. I think anything that forces blood to other areas, exercise, masturbation, etc, helps. So far as I know, alcohol isn't considered much of an abortive. Here is the circulatory thing:

Dr. Wright's Circulatory Feedback

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 very 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. 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 for this to take hold but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is 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. I like to keep at it a few minutes longer than seems necessary to insure success.

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: I'm new here
Post by dentedgirl on Sep 15^th, 2002, 3:44pm

Hello people. Thanks for the response.

"masturbation & drinkin' as abortives? i don't think so,you sure you get clusters?"

Drinking would not be considered an "abortive". Let me say this agian, after the first few drinks, I get a severe headache. The bitch of the bunch. If I can make it clear in about an hour, I go on drinking and usually get shitfaced. I won't have a headache for several days afterward. I would go routine with this, one day drinking, one day off ect...
I can go up too two weeks without a headache doing this. Now I hardly drink, because I don't want the first headache.

I get clusters. There is no doubt about it. 10 years this month. Give or take a few hundred I figure I have had around 3,000 of my little presents from the butcher and I see no end in sight.

As far as the masterbation thing goes...sorry I had to make such a bad first impression but it's a fact.
I see it this way, it's more of a focus issue rather than just wanting a hard-on. I focus very hard ( and it is VERY difficult ), but I have been doing it for so long it's almost natural. I figure the focusing on certian things, and certian things only helps just in itself, let alone the tension reliever after I get going. Sometimes It does not work.
I usually have tons of thoughts rushing thru my mind during my attacks, and tend to make them more severe.
If I can try to remain calm, Shake my legs and talk outloud about something, the pain may not be as bad.

Anyways, I'll cut this short. I am new here so I been checking out the site. I am glad my wife found it. I have never met anyone else with the same condition.
Also, I know what it's like. The lot of you seem to also. I am new to this board, but not new to our little friend you call "The Beast". I am not looking for sympathy by no means, but you have mine.
Mike

Title: Re: I'm new here
Post by Jim R on Sep 15^th, 2002, 5:28pm

Welcome Mike. Agree with domm - if you haven't tried O2, please do so. As for drinking, unless I am on some pretty effective preventative medications, alcohol offers simply increasing pain until it gets to a KIP 10 and I end up in an ER somewhere. But, everyone is different and if that did work for you - great, but I see you have decided it's not worth it to bring on that first CH with drinking and I would tend to agree. Don't know about masturbation. I would have a very difficult time thinking of anything to get aroused when in pain like this and then it would be a question of if I got an erection, could I maintain it and do anything with it to get to the point of some relief (maybe caused by redirected blood flow or the release of enorphins...), but again - more power to you if you can and it helps! Anyway, welcome, sorry you have to be here, but be glad you found it for I believe you will find help, support and friends here. Jim R

Title: Re: I'm new here
Post by 2late on Sep 15^th, 2002, 5:51pm

mike, i guess i was just ignorant about the masturbation thing, apparently it has been been discussed around here, definately not an option for me (unless i'm out of cycle & my wife has a headache) as for drinkin' i can't bring myself to try always a trigger, any ch i can avoid i will. welcome to the board!!! .................2late

Title: Re: I'm new here
Post by Ted on Sep 15^th, 2002, 7:39pm

Drinking is like that with me too. It'll kick my head in hard but then if I stick to my gins, I mean guns, I'll get at the most 1-2 attacks a day to no attacks for 2 days. So it definitely brings it down for me. One question, Mr Girl. I think I've noticed a pattern that after the reprieve from pain my head ends up in a heavy "cycle" for a couple of days after that. Does that happen to you? try and notice if you see a pattern there.

Title: Re: I'm new here
Post by dentedgirl on Sep 15^th, 2002, 9:44pm

Hello people. I am not too sure if the people with "episode" attacks are the same as those of us who suffer daily when it comes to any sort of treatment. I am someone who has them daily, but the levels of pain vary in cycles. I.E., one week I think I am going to kill myself and the next week I can slither out like a punk and run around all day scared if it's coming back bigger and badder then before.
When I come down from a drinking binge,(headache free),here it comes, REAL bad for at least a week or two. Then back to the normal clockwork. Is that what you were talking about? I am new to all these labels and stuff so bear with me if I seem ignorant.
I have been looking around this site and I must say I am at a loss for words. I can't believe there are others who have the exact same symptoms and feelings about these headaches. Whoever wrote "The Devil" knows what time it is. All the symptoms found in this site hit very close to home and it's rather a shock.
Only one doctor I have been too gave me a sheet about cluster headaches. I didn't have to read far to realize that was what I have. Even small things like "taking an afternoon nap" brings on an attack, to big things like the one sidedness and the pain around the eye. Almost every single symptom is a part of my life.
Anyways, I am glad that others have them,(don't take it the wrong way!), only because my fears of some vein in my skull bursting wide open or some sort of hemorage are not as bad.
Mike

Title: Re: I'm new here
Post by Slydog on Sep 15^th, 2002, 10:28pm

Mike, I too worried that it was something severe wrong in my head, I was so relieved when I found this sight. Welcome aboard Slydog

Title: Re: I'm new here
Post by Jim R on Sep 16^th, 2002, 6:56am

Mike, I'm an episodic and have been for 23 years. I have rather long cycles - usually 5-6 months. During these cycles, the headaches are daily, multiple times per day - I have gone as high as 13/day before treatment, and the pain is just like those of chronics - we just get breaks between cycles whereas the chronics don't get any or get no more than 2 weeks off. Other than these differences, I believe we are exactly the same. The stats say 10% of us episodics go chronic and 25% of chronics go to episodic status (think those are the correct stats - please correct me anyone if I'm wrong here). In the past, I have occasionally said WTF and drank some beers, usually only to strongly regret it about an hour later and suffer KIP 9-10's becasue of my foolishness, so I have learned that it's simply not worth it - I almost always end up "paying the piper" or the BEAST in our cases. But, having said this - we're all different and what works for one may not work for another. But, be assured, we all understand the symptoms and the pain we all experience and this is why this MB works as well as it does. Good luck, Mike. - Jim R

Title: Re: I'm new here
Post by echo on Sep 16^th, 2002, 8:22am

Welcome to the board dentedgirl.
Too many headaches and you can changed yours to yanked johnson.

Getting a headache -- headed for the head. Naw.

Other MB'ers, don't know about you but I'm curious to read how the jmule will respond to this one. LOL

Title: Re: I'm new here
Post by NancyMcFree on Sep 16^th, 2002, 8:46am

Welcome to the board.

My husband prays for the day I want to do it with a headache. LOL. Actually, there have been a few posts addressing this issue. The relief comes from a relase of seratonin (sp??). There was a very good post on the Medications board about this. It's free, fun, what the hey !!!!!!!!

The O2 is a much more conventional way to relieve the headache, as well as Imitrex.

Keep UP with whatever works for you !!!!!!!!

Title: Re: I'm new here
Post by Drk^Angel on Sep 16^th, 2002, 1:03pm

Welcome to the board! Sorry that the beast has plugged an 1GHz CPU in your cranium, and is running it at twice the rated speed with no heatsink. Welcome to the family!

PFDAN......................... Drk^Angel