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Topic: New to the Board, but not the pain (Read 268 times) |
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stedmom
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New to the Board, but not the pain
« on: Dec 2nd, 2002, 4:57pm » |
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First let me say that I was delighted to find this site. 5 years ago there was nothing like this. I've been a CH sufferer for 25 years, and my remissions usually last 5-7 years. I've been pf for 5 years until about a week ago. The headaches started out mild, like a lamb, but unfortunately they're roaring now. I tried the same treatment that worked for me last time, Medrol dose pak and verapamil. But this time the steroid sent my heart rate and blood pressure out the roof, so I had to back down the dose. In 10 days, I think I've had 2 pf nights. I'm finding that even during the day I have a constant sensation of discomfort in the area that hurts so severely during the headache. Does anyone else experience this.
My headaches almost always occur during the night (or when I'm asleep). I took a nap last Sunday afternoon and got woke up by one then. I've read somewhere that it's somehow associated with REM sleep.
Also, in the past I was able to lie quietly and wait on the medication (Imitrex) to kick in, and placing an extremely hot wash cloth over my left eye seemed to help too. But this time, there's no lying still. My poor hubby feels so helpless as I sit in the bed "rocking and rolling" with pain. I've been reading the posts about orgasm, and I've kept it secret from him until today  , but after last night, I think I'm ready to try even that. I just told him he may want to be out of swinging reach when he suggests it to me, as I may not be very receptive during the middle of an attack. 
At any rate, I'm here, and I'm not happy about it, so if any of you can make me feel any better about this, bring it on. At least there's this place now, and I can communicate with someone who doesn't think I'm just whining about a little headache. No one who hasn't experenced this really understands, do they?
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Azrael
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Re: New to the Board, but not the pain
« Reply #1 on: Dec 2nd, 2002, 5:12pm » |
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Welcome to the board! Sorry that the beast is using your cranium as a punching bag, while wearing spiked gloves. Good luck!
PFDAN............................................... Drk^Angel
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domm
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Re: New to the Board, but not the pain
« Reply #2 on: Dec 2nd, 2002, 5:58pm » |
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stedmom - welcome to the board, but sorry you felt compelled to seek us out. You sound like you've been through the drill before, so all I can offer is support and an ear to listen. There are tons of possibilities for new methods of dealing with the beast. Read through them and try a few. I'm sure something will help with the pain. I'm sure you've read Charlie's exercise technique. Give it a try. Many experience some relief from it.
Stick around and help us row the boat
PFDANs
domm
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Jabeen
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Re: New to the Board, but not the pain
« Reply #3 on: Dec 2nd, 2002, 9:43pm » |
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I had my first attack at 45 and after a rough year-I was PF for 5 years. Since I had no long term experience with CH's I thought after 5 years they might be gone forever-no such luck. I did the same thing you mentioned-as soon as they started again, I went back to the meds that worked for me the first time. Luckily they worked again and I am still not PF, but I get mild ones every 10 days or so-very tolerable. I did participate in a cluster e-mail group 5 years ago-but nothing like this one. This has great info and lots of helpful, experienced people. Good luck- 
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Charlie
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Re: New to the Board, but not the pain
« Reply #4 on: Dec 3rd, 2002, 12:10am » |
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Welcome aboard and look around. There is a ton of good ideas here of which this is one:
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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stedmom
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Re: New to the Board, but not the pain
« Reply #5 on: Dec 3rd, 2002, 9:57am » |
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Charlie, thanks for the words of encouragement. I don't know that I'm up to what you suggested with the redirection of blood, but I'll certainly give it a try. I've never been one to accomplish things like hypnosis, etc. About the only time I've ever been able to truly focus was during labor with my first child, and I was scared to death. Little did I know that that pain was nothing compared to what life had in store for me! 
My attacks are becoming somewhat erratic this time. I've had the typical one between 1:30 and 3:30 am, but I've also had them just as I went to sleep, and on Thanksgiving day, I even had one prior to going to bed.
I'm also finding that I have constant discomfort in the affected area of my head. I'm noticing that my concentration is affected, and even my ability to think clearly. Yesterday while driving home, I was thinking, "my head sure does hurt, I'm gonna take some Tylenol before I go to bed tonight". Now is that dumb or what? Why not take it right now, stupid! This is what I mean by I'm not thinking right. Have you ever done anything quite that dumb? Please tell me you have .
Okay, gotta get to work now. Thanks again for your time. 
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echo
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Re: New to the Board, but not the pain
« Reply #6 on: Dec 3rd, 2002, 10:11am » |
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Sorry to read that the beast has returned to torment your life. Hopefully his visit will be short lived and he will go back into hiding permently.
Welcome to the board.
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Roxy
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Re: New to the Board, but not the pain
« Reply #7 on: Dec 3rd, 2002, 10:56am » |
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Welcome to the site, just so sorry you had a reason to find it. And yes, when you're in so much pain your brain really short circuits. Before I found this board, I really thought I was going a little nuts (well, at least nuttier than before).
Read everything you can on this site...IT WILL HELP!
Your husband, no matter how sympathetic...still doesn't understand what it's like to be hit with these. No one can understand unless they've been through it. The people here really understand and can help you.
PF wishes,
Roxy
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Mark C
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Re: New to the Board, but not the pain
« Reply #8 on: Dec 3rd, 2002, 11:22am » |
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Welcome SM,
I don't know about making you feel better but I can give you a resounding
HELL YEAH.
Sorry you need us but glad you found us.
Tremendous amounts of CH information avaliable at the links on the left of this site and the OUCH site, read up. Good Luck,
Mark
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catlind
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Re: New to the Board, but not the pain
« Reply #9 on: Dec 3rd, 2002, 4:03pm » |
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Welcome aboard Stedmom and sorry you had need to find this port in the storm. In the immortal words of our King Jonny, grab an oar and start rowin
You have found a great place to put down anchor. A wonderful crew lives here in clusterville, and we will do what we can to help you through the storm. Read read and read some more. There is a wealth of experience and info here. I'm sure some of it will help you even when meds fail you
Cat
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Charlie
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Re: New to the Board, but not the pain
« Reply #10 on: Dec 3rd, 2002, 7:27pm » |
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Glad you are sticking around.
Bear in mind that my technique is entirely physical and has nothing to do with hypnosis. It sounds a little mystical but believe me, it ain't so.
Somewhere around here is something that will help. I promise.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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