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Topic: What has happened? The Beast is back! (Read 305 times) |
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Renee
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What has happened? The Beast is back!
« on: Jul 13th, 2004, 12:00am » |
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OK...I'm chronic as many of you know. I finally got on a good cocktail this spring after 7 years of chronic ch. The past few months have been absolutely GREAT. Only getting hit once or twice a week at most. Then, I go on vacation via airplane from Dallas to Lake Tahoe for a week and everything is even better in Tahoe. Nothing but a few shadows on 2 days and the other days I had no pain at all.
Now...comes the changes.
Five minutes after I stepped off the airplane back in Dallas i got hit with one of the worst CH's I've ever had. Triptan was no help. Phentanyl and phenergan didn't help either. I'm not at a kip10 anymore but the headaches are continuing, up to 10 per day with heavy shadows between.
I was doing SO well. I always do well in high elevations, btw, but....I've flown numerous times since getting on this new cocktail and this has never happened but I did not stay above 5000 ft elevation until this trip.
What has happened? Has anyone else ever had this happen to them? Any similar experiences that can be shared would be appreciated. i've got 17 days in the Tetons planned in a month and need to figure out what has occurred.
I forgot just how much these freakin' things really hurt!! It's killin' me!  And..my cocktail has failed
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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cootie
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Re: What has happened? The Beast is back!
« Reply #1 on: Jul 13th, 2004, 12:10am » |
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Sorry renee......there's jus no figurein this shit out.....it's not fair to you guys.........it's not fair at all !
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Kevin_M
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Re: What has happened? The Beast is back!
« Reply #2 on: Jul 13th, 2004, 12:29am » |
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Renee,
Hope it continues to stay away and it's a one time breakthrough. Take care of yourself and make sure you make that trip to the Tetons. That sounds really great.
Myself being episodic and getting to forget the pain, when its introduced again I remember real quick how BAD it was. Keep it away Renee.
Hope to see you soon.
Best to you.
Kevin M
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Pinkfloyd
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Re: What has happened? The Beast is back!
« Reply #3 on: Jul 13th, 2004, 2:20am » |
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on Jul 13th, 2004, 12:00am, Renee wrote: i've got 17 days in the Tetons planned in a month and need to figure out what has occurred.
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I had a very bad cycle start the day after I got home from a trip that started in Portland, had a layover in Denver and landed in Chicago. Other cycles were also started, or made worse BTW, with air travel.
I suggest you do one of three things.
1. Drive home from the Tetons as a slow descent may have less of an impact your system. 
2. Make that a 17 year stay instead of 17 days. 
3. Order some spores before you leave. 
PF
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buckeyescooter
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Re: What has happened? The Beast is back!
« Reply #4 on: Jul 13th, 2004, 2:43am » |
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Sorry to hear about your Ha's Renee....I was just thinking about you yesterday wondering where you've been. Hopefully your pain is temporary, and the cocktail will start working again.
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BarbaraD
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Re: What has happened? The Beast is back!
« Reply #5 on: Jul 13th, 2004, 5:35am » |
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I've gotten hit during descent a few times, but at the those times I was on Imitrex and got a shot in me before we landed. By the time we were on the ground, I was human again.
Geezz - hope you get over it really soon. You've got too much to do to let these things take over again.
Hugs BD
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Jeepgun
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Re: What has happened? The Beast is back!
« Reply #6 on: Jul 13th, 2004, 8:29am » |
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Hang in there, Renee. I hope you get some relief soon.
-Frank
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Renee
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Re: What has happened? The Beast is back!
« Reply #7 on: Jul 13th, 2004, 8:41am » |
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They are not staying away! I keep hoping a few more days at home will get things regulated but nothing thus far.
I like Pink's idea of a 17 year stay in the Tetons. I never get hit in high elevations. The problem is I can't fly at all with shadows or ch due to a previous surgery that went bad. My nostrils MUST be clear and stay clear for me to fly. I've got to get to the Tetons. Heck..I've got to get to convention too!
I wonder how many days it would take to drive from jackson, wy to dallas, tx? Have to build in time to stop a lil' here and there for EVERY stream that has trout in it. It could take many weeks, for sure... 
Now I have a crick in my neck to go along with the CH. I guess I'm devastated that my cocktail has failed. I just knew it was the miracle for me.
ARGHHHH !@#!#@!%^
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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don
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Re: What has happened? The Beast is back!
« Reply #8 on: Jul 13th, 2004, 12:21pm » |
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Nothing has happened. You suffer from CH.
The bastard comes and goes as he pleases. No rhyme no reason.
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Gator
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Re: What has happened? The Beast is back!
« Reply #9 on: Jul 13th, 2004, 12:46pm » |
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Well, hell. Just about the time you think you've got everything under control - BAM! The beast is back.
So sorry to hear he's lurking around your place again. Here's hoping your cocktail starts working again soon.
Gator
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echo
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Re: What has happened? The Beast is back!
« Reply #10 on: Jul 13th, 2004, 12:48pm » |
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Nothing happened.
The mutant bastard that he is decided to change the game plan on you.
Must admit that any air travel for me above 30K feet will bring on a CH every friggen time the plane lands.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Renee
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Re: What has happened? The Beast is back!
« Reply #11 on: Jul 13th, 2004, 11:07pm » |
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Four days post landing and STILL no relief in sight as of yet for the !@#@#%$ CH's!
I wonder if coming down from the high elevation has kicked everything back in full force again? 
And..now I've got a bad crick in my neck as well.
I sure hope it doesn't take another 7 years to find some relief again.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Rick_K
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Re: What has happened? The Beast is back!
« Reply #12 on: Jul 13th, 2004, 11:31pm » |
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Renee, I'm so sorry to hear the bastard is back and I hope he leaves very soon.
Maybe a trip to the mountains would be a good test of your altitude theory. Get a friend or two, to help with the driving, and head west to New Mexico or Colorado to see if the elevation helps any for you.
I hope you feel better very soon, we're thinking about you and sending good thoughts your way.
Rick
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Charlie
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Re: What has happened? The Beast is back!
« Reply #13 on: Jul 14th, 2004, 12:49pm » |
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Don is right. You have CH and perhaps there is a flying/amxiety factor. I know how silly this sounds to some of you but I used the damn thing while flying...not easy then but it worked a few times. Much easier on the ground when alone. You have nothing to lose:
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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Renee
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Re: What has happened? The Beast is back!
« Reply #14 on: Jul 14th, 2004, 11:26pm » |
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Well..
Y'all have fun at convention!
I'm cancelling out at this point due to the beast. I can't fly when getting hit this often. 
Have fun and take pics!! Send pics...to those of us left behind, please.
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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psycofemale0403
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Re: What has happened? The Beast is back!
« Reply #15 on: Jul 15th, 2004, 12:32am » |
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Hey Charlie, I did try your method of redirecting blood/energy to my hands, and you're right! It does work. Of course not all the time, and it did take a few times to get it to work, but it does help! I suggest everyone try it! What the hell do we have to lose. And one more thing that really helps, is BREATHE. I have an uncontrolled habbit of holding my breath durring a hit, which of course, makes it worse. I have to work real hard to concentrate, not cry, kick, or twitch my leggs....and just breathe. But it sure does help. So, thank you Charlie!
~ Lisa
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thomas
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Re: What has happened? The Beast is back!
« Reply #16 on: Jul 15th, 2004, 1:27am » |
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Renee, sorry you are getting hit so hard right now. Was really looking forward to meeting you at convention. But what I've found that really helps, is that when the beast is upon you; You must beat it over the head with your most potent abortive measures ( see New England Headache Clinic for specifics), then curse the f@cker out for his poor typing skills and lack of good grammer ( that ALWAYS works for me). If that doesn't work, I usually show it a list of all of my employees, who are sooooooooooooo below my level of inteligence, and instigate the beast into picking on them, ( this will work EVERYTIME, if it doesn't, just pop a zomig and wait. Hope PFDAN are coming your way............... thomas.
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| « Last Edit: Jul 15th, 2004, 1:42am by thomas » |
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Renee
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Re: What has happened? The Beast is back!
« Reply #17 on: Jul 16th, 2004, 9:42pm » |
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Thanks Thomas.
I've already used all the abortives, except DHE, that NECH has in place for me and Zomig is not one of 'em. That was added to my allergy list, unfortunately!
As for the cursing...I've always tried to leave that to others since they do such a GREAT job at it. 
As for MY employees....I wouldn't wish anything upon such a professional crew, nor anyone else. After all, they keep all affairs operating very smoothly while I'm off trout fishing, gambling, vacationing, playing, etc. I might have to stay at the office and work if they were lacking intelligence or attacked by the beast. 
Maybe you need to re-evaluate your staff?
As for me and my demon...it will never be wished upon another, just wish it would go away.....
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| « Last Edit: Jul 16th, 2004, 9:43pm by Renee » |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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