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Locomotive_Skull
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Hello. I was searching around for Clusterheadaches on the web and found this site. I must admit, I am suprised to find an actual community of "cluster heads".
I am not sure what kind of help I can offer, but it is an awesome site and I would like to hang around. I am not much of a forum user, but I find it rather comforting that most of you have something in common with me. As most of you probably know, a non-clusterheadache sufferer has no actual clue as to how painfull they can be, and it is nice to be able to communicate with persons who can relate.
A litle background=
I have suffered from these "headaches" for a long time, and never heard the term "cluster headache" until just recently. I had not been to a doctor about my head for several years. A few weeks ago, I started to get them on the left side ( In thirteen years, this never happened ) and got a little freaked out. I had my wife make an appt. with a young doctor in town ( she is a pharmacy tech and knows all the docs ) and he showed me some paperwork on clusters after a brief description to him about my head.
I was completely taken back when I read the information on clusters. There was no doubt whatsoever that this is what I suffer from. He told me they were rather rare, and docs were just starting to become familiar with them. All the meds he could offer from his arsenal were ones I have taken before except Imitrex. I was under the impression that I was a migraine sufferer for a long time. I have learned alot about the differences however. Anyways, He gave me some Imitrex pills and about 10 sample shots. The pills are useless, the shots kickstart my heart, make me sweat profusley and give me the shakes. My headache is gone within minutes of the shot, but comes back hours later. I will keep what's left of the shots for emergency purposes. I am in heart-atack country as it is, and don't like the way those shots make my ticker hum.
Anyhoot, sorry for the long post. Please don't confuse being a little excited about this site with having diarrhea of the mouth.
Thanks for listening folks!
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scotg.
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Re: New to your board.
« Reply #1 on: Jun 18th, 2003, 4:26pm » |
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Hey welcome, I just recently found this site after years myself, and i too found it to be the same. Hey check out the imitrex tip to the left. It breaks down the shot into two or three smaller ones. Might help ease the heart thing a bit. Glad your hear... Scot
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jonny
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Welcome aboard, Loco
Grab an oar and head for the back of the boat, take a seat and start rowing...this way I wont have to call for the coot master general to start swinging at your head to kill the beast.
Just remember, im King around these here parts ...LOL ;D
Seriously...you will learn alot about whats in your head here, welcome!!
...................................jonny
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Linda_Howell
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Re: New to your board.
« Reply #3 on: Jun 18th, 2003, 4:38pm » |
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Everyone here identifies wholeheartedly with your 1st. paragraph.
Contribute what you can, and just know that we're all to help each other deal with these HA's.
Love your screen name.....
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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cathy
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Re: New to your board.
« Reply #4 on: Jun 18th, 2003, 4:40pm » |
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Welcome aboard...sorry yr having to join the crew but you'll not find a better one...
btw...as a non-clusterhead sufferer I would just like to politely point out that I do have a liddle inkling of what a clusterhead sufferer goes through.... 
Cathy a supporter
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Live4Fun
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Re: New to your board.
« Reply #5 on: Jun 18th, 2003, 4:41pm » |
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Welcome aboard Loco! Sorry you have to be here though 
Like jonny said... grab an oar, start rowing with us, we need all the oar power we can get!
Bryan
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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cbolony
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Re: New to your board.
« Reply #6 on: Jun 18th, 2003, 4:56pm » |
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Locomotive_Skull Welcome to the board
Quote:| the shots kickstart my heart, make me sweat profusley and give me the shakes. My headache is gone within minutes of the shot, but comes back hours later |
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That happens when you use the imitrex for the first time.
Get that warm feeling going to you head feels nice when the CH is gone in about 5-10 mins.Take scotg.advice
and go to the left side of the board and click on imtrex tip.
And yes jonny is KING of this board ;D
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Charlie
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Re: New to your board.
« Reply #7 on: Jun 18th, 2003, 5:00pm » |
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Welcome Loco. Glad you chugged on over.
Like you, I was dumbfounded at the number of clusterheads and the great community. This place is unique for medical support boards. Lots of wonderful information and more friendly and bizarre people than I expected. I suppose it's the delight of finding others who know exactly what you're going through. Also, it's finding that there really are things you can do to at least cope with this horror. I found the place addictive too. Stick around and feel free to rant and rave or just let us know how things are going.
Here is a link to a letter that you can copy that will help you to get others to understand that this syndrome has little to do with a headache:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a technique that I used very successfully and others have had success too:
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
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Mark C
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Onward through the fog.
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Re: New to your board.
« Reply #8 on: Jun 18th, 2003, 7:41pm » |
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WELCOME
Fuck all this rowing....I think I found the OUCH yacht and it's got a MOTOR!
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Click The Flag
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stevegeebe
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Re: New to your board.
« Reply #9 on: Jun 18th, 2003, 7:56pm » |
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Loco....Look at this shit by Mark. Are you in the right place or what?
Welcome to the Tribe.
Steve G
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Locomotive_Skull
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Thanks guys.
Quote:
That's right on the money. As well as "The Devil" anology you guys have. I think sometimes people not understanding, is probably the most frustrating part. Don't get me wrong, I aint' looking for a pity party from anyone (including those around here), I just wish sometimes others (like my wife) actually understand that not only does this hurt, but I carry a pyschological burden because of it as well. I know I do. I don't go around pissing and moaning, or feeling sorry for myself, but I know it affects the way I think about certian things, or affects my emotions from time to time.
Anyhoot, Just let me know if I ramble too much about myself, or talk about things taboo amongst the community.
I have a few questions that may sound like rhetoric to some of you, or stupid, but I aint' asking for shits and giggles. Maybe after searching your forum I will find the right places to ask peticular questions.
1. Can any of you put them off? Stall them until later? I.E., I am at work, the plant manager is going over something important with me, then it starts. I can postpone it, but it WILL come back later.
2. Do any of you have the problem with drinking a few beers, then triggering one? I read some about this and it happens to me every time.
3. Do any of you have them on either side? Both sides at the same time? I have never had them at the same time, but lately, the right side will stop, then the left kicks right in.
4. Do any of you wake up in the middle of the night with one? I do like clockwork.
5. How many of you get them every day? I would be what Simon Bower reffered to as "chronic". The most I went without one was 9 days. I remember the headache I suffered quite well on the 10th day.
Charlie, I think sometimes I do that, but not really realizing it. Here is an example=
I will be doing my usual "fish flop", thrashing around voodoo dance, then right in the middle, I will stop. I will get on my knees and put my head face down on the couch or bed. I will hold my forehead very tightly and concentrate REAL hard on a single thought. Any subject will do. From bulding a fence around my house to something at work. It's almost like I feel far away for a few moments, and the pain is somewhere else. As soon as I break this concentration, I float right back into it.
I have never tried the "blood flow" medatation, but will tonight. I am willing to take any advice from any of you.
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Linda_Howell
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Re: New to your board.
« Reply #11 on: Jun 18th, 2003, 8:37pm » |
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2. Alcohol is a definite trigger for episodics.
3. Most of us get them on a particular side. Only a few of us have reported getting them on both sides at the same time. Very rare thank God.
4.always
5. I have been hit every day for the last 11 yrs. (out of 16) with no less than 3
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Linda_Howell
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Re: New to your board.
« Reply #12 on: Jun 18th, 2003, 8:39pm » |
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Oh......a p.s.
These are NOT stupid questions.
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Live4Fun
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Re: New to your board.
« Reply #13 on: Jun 18th, 2003, 8:46pm » |
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Here are answers to your questions, from my experience:
1. If you can put them off til later, you have mastered some technique unknown to me. I know I fight and fight if I feel one coming on, but if it wants to come, it's gonna come. If you have learned a technique to hold them off until a more opportune time, please please share with us. I would like to know how to do that
2. Absolutely, alcohol is a key trigger.
3. I get them only on the right side, but some do have them on both sides, but as far as I know only one side at a time, never both at once.
4. Sleeping in an elevated position can help fight them off a little, IME.
5. I am episodic, thank god, the demon leaves me alone for 9 months a year.
Never feel bad for asking questions. That is why we are here. There is a LOT to read on this site and sometimes you just can't cover it all. Plus, IMHO it is easier and more comforting to discuss with other people than to just read what has been written about in the past.
Once again, welcome to Clusterville!
Bryan
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| « Last Edit: Jun 18th, 2003, 8:51pm by Live4Fun » |
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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Not4Hire
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Re: New to your board.
« Reply #14 on: Jun 18th, 2003, 8:54pm » |
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hey LocoSkull... between the *jokes* and the *static* you will find that the peeps here have a whole shitload of good information.... jonny said "go to the back of the boat and start rowin'..."
....good advice as far as rowin'... but I prefer that you go to the *front*....when the Captain (DJ) wants to waterski... well, the *propwash* get's a little ....ugly......heh
...just remember this little *mantra*..... This MOFO will NOT kill ME....I will make it thru AGAIN.....This MOFO will NOT kill ME....I will make it thru AGAIN.....This MOFO will NOT kill ME....I will make it thru AGAIN.....
good luck bro.... hope you find your *key*....
check this out:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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don
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Quote:
That should be the first and last time you ever refer to the board as "yours". From here on in it is "ours" to you. You are one of us.
Welcome aboard pal. Glad to see you found your way home.
(There is a small fee though. Please send 5 vestal virgins to......Ah fuck it. That never works! )
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| « Last Edit: Jun 18th, 2003, 9:12pm by don » |
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Linda_Howell
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Re: New to your board.
« Reply #16 on: Jun 18th, 2003, 9:18pm » |
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And Don, our illustrious President is the ONLY one who knows what the word VESTAL means.
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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don
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Actually I don't but thanks for thinking of me. lmao
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cootie
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Re: New to your board.
« Reply #18 on: Jun 18th, 2003, 9:45pm » |
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Hey loco...welcome.....don't worry I won't wack ya with my oar....you found a good place here ! Send Don a box of multi color'd sparkly thongs......with days of the week on each one.  Thong doctor Pam 
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Charlie
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Re: New to your board.
« Reply #19 on: Jun 18th, 2003, 11:02pm » |
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Glad you have had some success Loco. Simon's letter is amazing.
Try the technique but lose any notion that is has anything to do with meditation. It's entirely physical. This thing can now and then stop a cluster dead in a few seconds. I lived for that. It can almost always shorten them. Once you get it to work, you'll be hooked. It's always worth the try. Exercise is another way too but I find the technique more reliable.
Good luck.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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brain_cramps
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Re: New to your board.
« Reply #20 on: Jun 19th, 2003, 12:28am » |
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Loco:
Like is said so often: Sorry you had to look for us, but glad you found us. Now you are one of us.
Sounds like you've been doing some reading already. Read, read, read and then read some more. As far as questions go... everyone here is willing to help as much as possible.
PFDAN,
grant 
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catlind
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Re: New to your board.
« Reply #21 on: Jun 19th, 2003, 6:38am » |
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Welcome aboard loco. Not much I can add to what everyone has already said. You have found a home where you can vent, rage, cry, rejoice, ask questions, and learn about your affliction.
Not a better group of knowledgeable people out there than this group
Cat
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Donna
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Re: New to your board.
« Reply #22 on: Jun 19th, 2003, 7:45am » |
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Very glad you found Clusterville. Welcome. Hopefully the Imitrex trick will help........and the next important thing is the O2. Read all about it. Ask any questions as none are stupid.
If you're wondering about DJ, read his intro at the start of this site.
And don, "vestal" isn't spelt right.....and it doesn't have a "t" in it.
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BlackDog
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Re: New to your board.
« Reply #23 on: Jun 19th, 2003, 10:25am » |
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Hi Loco,
WELCOME to you. Glad to have you, but sorry you had to join the party. This place will help your life. Good luck buddy!
Darren
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don
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OK OK ! Skip the vestal (sp) virgin thing already.
Any ole virgin will do.
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