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   New to the site...not to the pain :-(
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MountainMan
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New to the site...not to the pain :-(
« on: Feb 3rd, 2003, 12:53am »
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Hello All!
  Well, to start with I've had the same pain as far back as I can remember (at least 7) and I'm 20 now.  When I was a kid it used to be so bad that I would leave my friends and drop in a ditch and start banging the ground or go into the woods (both were on the dirt road where we hung out) and roll around and punch my head.  At times it would be so bad that I felt like I was going to pass out.  After years of this, my parents finally took me to the doctor and they asked all sorts of questions and put me under the x-ray machine.  They found nothing, but said I should come back for more tests because it could possibly be a tumor.  He gave me all this sinus infection medication and sent me on my way.  Yeah, telling a 12 year old he may have a tumor is a good method of deterring a return visit.  So, since then I've been fighting the headahces and until today I thought it was just sinuses because they always seemed to come around the end of fall and beginning of spring and then pretty frequently in-between, epecially when the temperature changes, so I thought maybe it had something to do with humidity and my sinuses reaction?  I also thought the same because when I got my headaches my right nostril would get congested.  Today I was on WebMD because I have a severe sore throat and I was hoping to find what it was and it hit me to look up my headache symptons.  I found that I had every symptom listed for CH, and I'm pretty ticked off that it's taken this long to find something out, mostly my fault of course.  I guess I'm luckier than most sufferer's because taking 4 aspirin seem to be effective in dulling the pain for at least an hour or two before I get another one.  Then again, on bad days I've been known to take up to 20 aspirin trying to kill the pain and it just doesn't work.  All my friends and family think I'm addicted to aspirin because when I get my headaches I can't go anywhere without them or else I'm useless.  Maybe if I show them this website, they'll actually understand what I go through.  When I don't have anything I grind the palm of my hand into my right eye trying to soothe the pain to no avail.  I'm surprised I haven't squished anything yet.  Up to this point, I've never met anyone that has truly understood how painful the headaches are.  I'm a pretty well-built guy, but am no match for these headaches and it's really depressing sort of.  When they come at night is the worst, I kick the wall and bang my head into the pillow trying to make it go away so I can sleep.  If I can't find anything to take I stare at the ceiling and pound my head and ask what I did to deserve it.  Well, I'm really sorry to post such a long message, but I just got over one of the headaches and they just make me want to rant.  I really don't know how some of y'all have dealt with these things so long.  I'm looking ahead and I don't know how in the world I am going to deal with these things for the rest of my life.  As it is, everytime I get one, I get so frustrated that I make my chest swell and I feel as if my heat is going to explode on the spot.  Well, isn't it such a surprise that I feel another one coming?  Got to get out of here...Thanks for having such a great site and finally answering my questions!!!
Ben
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Re: New to the site...not to the pain :-(
« Reply #1 on: Feb 3rd, 2003, 2:58am »
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That's quite an intro. The one question I have is do you play any bluegrass?
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Mark C
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Re: New to the site...not to the pain :-(
« Reply #2 on: Feb 3rd, 2003, 3:58am »
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Welcome Ben,
Sorry you need us, but glad you are here. Sounds like you may be a Clusterhead, I hope not, but.....
I have attached a couple of links I hope help. Pull up a chair and stick around.
PFDAN's
Mark
 
http://www.clusterheadaches.org/library/general/index.htm

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

 
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suzy617
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Re: New to the site...not to the pain :-(
« Reply #3 on: Feb 3rd, 2003, 5:20am »
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Hi Ben and welcome to the board. There is tons of info in here for you to read. You'll learn more at this site then from any Dr. I would suggest you see a Neuro who can put you on some meds that can help you. Those cases of aspirin you ingest do nothing for the real CH but tear up your stomach. They may help with the shadows but thats about it. Stick around and read, read, read.
 
suzy
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Re: New to the site...not to the pain :-(
« Reply #4 on: Feb 3rd, 2003, 5:54pm »
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welcome MM Ben - you really need to get to a good neuro and get the right set of meds that are going to work for you. Go over to the OUCH website and click around in there. You'll find a list of recommended docs that someone else has run across. Probably one nearby.
Sorry you're here, but if it is CH, you're in the right place.
good luck and keep us posted
domm
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Charlie
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Re: New to the site...not to the pain :-(
« Reply #5 on: Feb 3rd, 2003, 6:10pm »
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Welcome Ben and that was quite a start. Sorry you had reason to find us but we know the kind of pain you have. It's indescribable.  
 
I agree; a good neurologist may be able to help. Stick around though as there are some good ideas around here.  Here is one I put to good use:
 
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.  
 
Also, here is link to a letter that you can print for friends and family. It is the best we have to help others to understand:
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
I wish you the best of luck - Charlie Strand
 
 
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Re: New to the site...not to the pain :-(
« Reply #6 on: Feb 3rd, 2003, 7:15pm »
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Hi Ben......you should find help here......I'd chill with the asprin tho.....spare your stomach the agony. Good luck to ya......Pam
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MountainMan
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Re: New to the site...not to the pain :-(
« Reply #7 on: Feb 3rd, 2003, 8:30pm »
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Yeah, sorry about the length of that first message, I've just had the headaches so long and not a clue what was really happening until now, so I had to get it out.  In reference to the Bluegrass comment, that's pretty funny, because I do play the sax and used to play jazz, bluegrass, and concert.  We've also got the Barking Spider band that plays a sort of bluegrass at the primitive rendezvous.  Anyways, I had more headaches today, and instead of popping aspirin, I just fought them.  They lasted about 20 minutes - 1 hour, which is about how long they usually lasted when I would take aspirin.  I also thought that when the headaches came back anywhere from 1 to 3 hours later that it was just the aspirin wearing off, I guess I've been wrong the whole time.  Thanks for the advice everyone  Smiley
-Ben
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