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Topic: I realise now, I have taken this site for granted. (Read 328 times) |
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varlogmessages
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I realise now, I have taken this site for granted.
« on: Jun 30th, 2004, 11:38pm » |
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I am back, after 4 years. When my last cluster passed, I stopped coming here.
A new cluster cycle has begun, though no Real pain has made it through the first line of defense (yet), but it is coming, like a train wreck I can't avoid. I need to see my doc, and get on the prednisone/ercaf. sigh...
For the last few days, I have just been doing the old standby, like many of you, I'm sure. Over-the-counter analgesic, in vast (dangerous) quantities. My extremeties get numb, and that makes me feel VERY anxious. I'm 40 now, and high doses of analgesics, ercaf, or imitrix make me feel as if my heart is going to stop. I really think that I could, indeed, die from this, not from the headaches, but from the state I (deliberately) put my body into, just to avoid the pain.
I still have about 20 ercaf tablets in the bottle from 4 years ago (couldn't bring myself to throw them out). It's VERY tempting to take some, but I know they are poison now, after all this time.
The prednisone regimen is becoming less effective each cycle, but, thankfully, the ercaf still does the trick. I just wish I could take as much of it (as often) as I need. Imitrix was amazing, the first time, but it was too good to be true. By the fourth or fifth time, it was no better than tylenol. No, I never got to the point of using the injections, it was clear that my cluster(s) saw it coming, and decided to ignore it. I used the nasal inhalors, initially astounding, then fleeting.
Anyway, when I found this site in 2000, I was floored. I had thought I was the only one that dealt with this. I lurked that whole summer, through a six-month cluster cycle, give-or-take. I never joined in, just read (and cried, a LOT). Though nothing can really help, in the dark hours of an attack, I took great comfort in the pages of this site, and these fellow clusterheads.
My mother is the only one (of course) who really understands my cluster headaches, and I often would send her links to read from these pages.
I'm dreading the visit to the doctors office, and the re-hashing of the whole thing. Its ironic that I have to go there, and then TELL the doctor(s) what I have, and tell them what I need, at what dosage, and by the way, doc, give me at least FOUR refills on the ercaf prescription!
At least it's better than the old days. 3 or 4 bottles of aspirin or advil a week. Tylenol was literally worthless, though I took a lot of it too, in vain. I was finally diagnosed in '94, after suffering for almost 20 years without knowing what was really going on. That was when I had my first Cafergot. YEEHAA! Anybody remember that first time the pain went away in less than 5 minutes? It was an ER doctor that showed me the light, not a GP. I wish I could still find him to thank him.
I joined this time to partake in the discussion, for what it's worth, as I know that the cycle will consume my attention for the foreseeable future. I run my own small business, and it's gonna be interesting to see how that goes...
One familiar name that stands out is OneEyeBlind! Now I have a face to go with the name (found the pics in a recent post). I'm sure I'll recognise some others, as I scan the posts.
Well, maybe this time, when my cluster passes, I'll be more thankful, and not forget all those that are still in the clutch of the beast. I feel very selfish, and I am sorry. The clusters are very humbling, aren't they?
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Big Dan
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Re: I realise now, I have taken this site for gran
« Reply #1 on: Jun 30th, 2004, 11:47pm » |
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Glad you decided to join us finally.....
... granted your hurting again, it's time to start giving back to those that gave.
... it's the only true way to appreciate what's available here at CH.com...
Hope you find some relief....
-Big Dan
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varlogmessages
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Posted in the wrong area?
« Reply #2 on: Jun 30th, 2004, 11:59pm » |
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I just saw the "Getting to Know Ya" section, guess that's where I should have posted. Sorry if this breached protocol...
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Linux users simply have to tolerate Microsoft, much the same way that William F. Buckley must tolerate Jerry Springer.
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forgetfulnot
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Re: I realise now, I have taken this site for gran
« Reply #3 on: Jul 1st, 2004, 12:19am » |
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Quote:| Tylenol was literally worthless |
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Always has been, can't believe people buy that stuff......
Lee
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Big Dan
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Re: I realise now, I have taken this site for gran
« Reply #4 on: Jul 1st, 2004, 12:29am » |
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Protocol?... We don't need no stinkin' protocol.
Just live and let live, learn and teach... all the rest falls into place...
-Big Dan
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Kevin_M
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Re: I realise now, I have taken this site for gran
« Reply #5 on: Jul 1st, 2004, 12:29am » |
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on Jun 30th, 2004, 11:38pm, varlogmessages wrote:
Well, maybe this time, when my cluster passes, I'll be more thankful, and not forget all those that are still in the clutch of the beast. |
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Some of us have come and gone, come and gone. Sat in some glue this time. Find a seat.
Kevin M
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Charlie
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Re: I realise now, I have taken this site for gran
« Reply #6 on: Jul 1st, 2004, 2:55am » |
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Welcome to the fold.
We're here and a lot of us old farts have stuck around.
One thing I tell people is to not plan for the things. It accomplishes nothing. I know that's largely wishful thinking though.
Over the counter shit? Bleaugh. Useless. Like trying to knock out an elephant with a peanut.
Try this:
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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don
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Re: I realise now, I have taken this site for gran
« Reply #7 on: Jul 1st, 2004, 5:29am » |
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Quote:| Sorry if this breached protocol... |
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Another breached protocol.
I like that.
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Superpain
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Re: I realise now, I have taken this site for gran
« Reply #8 on: Jul 1st, 2004, 6:41am » |
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Welcome.
Cafergot never worked for me.
Have you tried any other drug regimens?
O2?
Relief to you...
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Chris
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thomas
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Re: I realise now, I have taken this site for gran
« Reply #9 on: Jul 1st, 2004, 9:07am » |
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on Jul 1st, 2004, 12:29am, Big Dan wrote:
Just live and let live, learn and teach... all the rest falls into place...
-Big Dan |
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Wow, pretty deep stuff, Dan.
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alleyoop
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Re: I realise now, I have taken this site for gran
« Reply #10 on: Jul 1st, 2004, 9:22am » |
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on Jul 1st, 2004, 9:07am, thomas wrote:
Wow, pretty deep stuff, Dan. |
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LMAO
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thomas
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Re: I realise now, I have taken this site for gran
« Reply #11 on: Jul 1st, 2004, 9:23am » |
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on Jul 1st, 2004, 9:22am, alleyoop49 wrote:
I was actually being serious, he said a LOT, with very few words.
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Root
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Re: I realise now, I have taken this site for gran
« Reply #12 on: Jul 1st, 2004, 4:08pm » |
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In the land of the dark the Ship of the Sun is driven by the Grateful Dead. -- Egyptian Book of the Dead
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jonny
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Re: I realise now, I have taken this site for gran
« Reply #13 on: Jul 1st, 2004, 4:15pm » |
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Very, very nice  ..Root....LMAO
........................................jonny
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Kris_in_SJ
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Re: I realise now, I have taken this site for gran
« Reply #14 on: Jul 1st, 2004, 4:34pm » |
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So sorry the beast is upon you again!
OK, so this seems a good time to say this since there was mention made of your med probably being "poison" after all this time.
My friends here on the board nearly had heart attacks when I mentioned that I'd thrown away Imitrex injects after my last cycle (also 4 yr ago). Like you, I was sure it would kill me once it expired.
Talked to my doc yesterday and he said there are only 3 known medicines (none of them for clusters) that get stronger or could hurt you, and that almost all meds retain up to 80% of their effectiveness 10 years later! Told me to hold on to the Trex for next cycle. Long story short ... if it helped you then, it will probably help you now.
Hugs and good wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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varlogmessages
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Old meds?
« Reply #15 on: Jul 3rd, 2004, 1:05am » |
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I read somewhere that most tablets turn into strycnine (sic) or some thing, after a few years...
Can anyone confirm that these may still be useable? These are Ercaf, not cafergot (six of one, half dozen of the other).
I tried googling for info , and I found some references to Imitrix (injectables) warnings about throwing them out if not used by the expiration date. That would clearly put 4 year old doses into the "don't use" category, I should think.
Anyway, I don't get much releif from Imitrix (aside from the fact that it costs significantly more than the ercaf).
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Linux users simply have to tolerate Microsoft, much the same way that William F. Buckley must tolerate Jerry Springer.
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