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Topic: ARRRRRGGHHHHHHH (Read 262 times) |
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Cynlee
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ARRRRRGGHHHHHHH
« on: Nov 27th, 2004, 12:10pm » |
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I am so tired of being tired and hurting grrrr it makes me mad. Today is day 60 of consistant CH attacks and shadows all day. I just dont get it I have tried EVERYTHING the meds I am on now are lowering my BP dangeriously low. I am always tired BUT it seems that the meds are finally working the attacks are not as severe or last as long. No Aborts have worked, so I have to take it "slow" and sneak up on it. I would like to "sneak up" on my doc and... grrrr anyway. WTF where is the comprimise? Its pain or fatigue I dont see what it is worth. Ugh my lesson is here early I have to get going, sorry if this sounds like pitty party I just needed to vent to someone who understands that a wool hat, or advil is not going to solve the problem. Hope everyone had a PF and pleasant Holiday.
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Dont be pissed my horse is fast... be pissed yours is not fast enough!
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Jonny
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Vent away
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nani
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Re: ARRRRRGGHHHHHHH
« Reply #2 on: Nov 27th, 2004, 12:55pm » |
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Hang in there, sweetie...
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Charlie
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Re: ARRRRRGGHHHHHHH
« Reply #3 on: Nov 27th, 2004, 1:17pm » |
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Feel free to use both barrels. This is our thing. This strange-sounding techinque worked pretty well for me most of the time. I haven't posted it lately:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Carl_D
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Sorry your getting slammed right now and the meds are messing with you. Seems that which doesn't kill us just makes us sick sometimes.
Any abortives working for you like Imitrex injections or o2? Also, are you on a BP lowering med like Verapamil? If so they may need to adjust you to a lower dose.
Peace and hugs,
Carl D
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Kevin_M
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Re: ARRRRRGGHHHHHHH
« Reply #5 on: Nov 27th, 2004, 1:56pm » |
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on Nov 27th, 2004, 12:10pm, Cynlee wrote:BUT it seems that the meds are finally working the attacks are not as severe or last as long.
...where is the comprimise? |
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Well, getting out from some of the severity and length is a difficult but needed trade off.
Quote:| No Aborts have worked, so I have to take it "slow" and sneak up on it. |
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What's the doc doing for ya, trex, Zomig, O2? What's the slow and sneaky method?
arrrrrrgghhh space available
Kevin M
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marlin
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Re: ARRRRRGGHHHHHHH
« Reply #6 on: Nov 27th, 2004, 2:48pm » |
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Charlie, How the hell do you know that your concentration is accomplishing anything? Is there some sort of instrumentation that you connect up to that shows blood flow rate? I tried bio-feedback with a bunch of wires. I suppose it did a little something but 95% of the pain was still there and 95% of the pain was 94% too much. I reach for the trex.
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Cynlee
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Re: ARRRRRGGHHHHHHH
« Reply #7 on: Nov 27th, 2004, 3:31pm » |
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First off thanks for the hug and support. Charlie I read about that in another thread and have tried it, I get too frustrated it just makes matters worse. I will continue to try using that tecnique. As for Imitrex injectibles my doc and I have discussed them she does not feel that using the injectibles at this time will be effective until the attacks can be maintained. Tried Zomig it was the most horrible tasting crap tried every which way to use it, and it did not work. Maxalt same result, relpax ditto. Also took Furinal, Midrin, Darvacet.. The slow tech per the doc is Frovan 2x's a day, 80mgs of Inopran 1xd, Elavil 2x's, and a beta blocker. In the midst of switching docs I went on a juice fast to rid my body of impurities (hoped the shadows were from rebounds) that did not work. Havent tried O2 yet I will ask her on Monday when I go in for my weekly visit.  Can you buy it OTC? Thanks for your feedback
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Dont be pissed my horse is fast... be pissed yours is not fast enough!
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Kevin_M
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Re: ARRRRRGGHHHHHHH
« Reply #8 on: Nov 27th, 2004, 3:51pm » |
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on Nov 27th, 2004, 3:31pm, Cynlee wrote:| As for Imitrex injectibles my doc and I have discussed them she does not feel that using the injectibles at this time will be effective until the attacks can be maintained. |
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Not to get into word games with the doc or anything but using the trex is how you can maintain during an attack. She feels it won't be effective until the attacks are maintained? Something seems misworded here. I've always used trex because the attacks can't be controlled. I dunno. Don't know unless you try it.
Quote:| Havent tried O2 yet I will ask her on Monday when I go in for my weekly visit. Can you buy it OTC? |
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Doc writes a script for it. Much info on the setup needed on tab to the left. O2 company next.
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Kevin M
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| « Last Edit: Nov 27th, 2004, 4:02pm by Kevin_M » |
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Carl_D
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on Nov 27th, 2004, 3:31pm, Cynlee wrote:| l As for Imitrex injectibles my doc and I have discussed them she does not feel that using the injectibles at this time will be effective until the attacks can be maintained. |
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I've tried almost everything under the sun at one time or another. Even after becoming chronic I tried Imitrex and it didn't work. However, I tried the injects again last fall and it worked! Noit failsafe, and sometimes can be 50/50, but as far as getting a Triptan into the system to abort a CH, the key is timing and injects work much much faster than a pill. Actually helped get mine more under control than ever before. The drawback is getting rebound headaches, but another trick is learning how to extend your Trex injections. (See the "Imitrex Tip" button to the left.)
Tell your Doc you would like to try o2 therapy. Anything's worth a shot.
Peace,
Carl D
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Jonny
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on Nov 27th, 2004, 2:48pm, marlin wrote:| Charlie, How the hell do you know that your concentration is accomplishing anything? |
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He's more human than the human....anymore questions?
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Ree
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Re: ARRRRRGGHHHHHHH
« Reply #11 on: Nov 28th, 2004, 1:24am » |
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So sorry Cyn hang in there... love ree
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