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Topic: CH for 20 years... (Read 218 times) |
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Michae1
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CH for 20 years...
« on: May 10th, 2003, 10:56am » |
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I haven't had a cluster for about 12 years..I was 19 when they started. I was under just about every medication during that period, including oxygen therapy. I really understand how terrible this condition is, and that is why I want to share something I discovered that finally helped me. One night I had an attack that was off the scale..in my effort to hide from the pain, I started to hyper-ventilate...gulping deep breaths to the point of light-headness...to my suprise, the dizziness was accompanied by a sudden end to the CH. Of course, I thought it was a fluke...so during the next episode, I tried the same thing...same result. In the days following, I continued to have the same reaction. After about a week, the cluster ended...but with a suprising result. I went 3 years without another attack. My next attack amounted to almost nothing...ten deep breaths..and peace. It has been 9 years now without an incident. It would be foolish to believe this will work with all, but even if it helps just one person I would be happy.
Michael
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jonny
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Thanks for sharing, Mike.
Some here get the same results doing squats real fast, running or doing pushups.....anything to get the breathing going.
Im glad to hear you got so much PF time, everyone here loves to hear that.
.......................................jonny
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cathy
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Re: CH for 20 years...
« Reply #2 on: May 10th, 2003, 4:17pm » |
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Michae1
Thankyou for taking the time to post this, Im happy to hear your PF and hope that you continue to be.
Cathy 
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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oringkid
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Welcome Michae1! Wow, another one pf for 12 years! That is great.
I do deep breathing, but I do it to try to keep calm. I've never been able to exercise the way others can...  I have started but just can't keep it up as the pain grows. Never thought about just breathing like I was exercising!
Now I have 3 new things to try when my next cycle hits. O2, Charlies redirection thing, and deep, fast breathing.
Just out of curiosity, can you think of any other things you did, changed, or that happened to you around the time your cycles quit coming?
Thanks!
Sherry
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kim
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Re: CH for 20 years...
« Reply #4 on: May 10th, 2003, 5:11pm » |
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Hyperventilate into a paper bag...........same theory..........breath.......thereby exerting energy.........never worked ???
same goes for high energy work outs..........I ended up exhaused and frustrated..............angry even.........
a cluster attack is soooooooooohard to share and positive results vary...........that's why it's a demon....!
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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: CH for 20 years...
« Reply #5 on: May 10th, 2003, 6:40pm » |
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Quote:| Hyperventilate into a paper bag...........same theory..........breath.......thereby exerting energy.........never worked |
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...hyperventilation...into a paperbag...is COUNTERproductive... the idea is to MAXIMIZE o2 levels... if you are RE-breathing the same air (what you get w/ the paper bag) ....yer just cutting DOWN the oxygen....
what Michae1 SAIDwas:
Quote:| One night I had an attack that was off the scale..in my effort to hide from the pain, I started to hyper-ventilate...gulping deep breaths to the point of light-headness...to my suprise, the dizziness was accompanied by a sudden end to the CH. |
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...this is completely consistent with o2 treatment.... get LOTS of o2 into yer lungs>heart>brain..... exercise/NON-rebreather mask/panic/whatEVER.... the end result is highly oxygenated blood getting to your brain/trigeminal nerve... which tells the pain to fucking STOP.....
...WHY the pain is *there*..... well, shit..... i wish i knew.....
mebbe it's because *WE're* AFU......
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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brain_cramps
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Re: CH for 20 years...
« Reply #6 on: May 10th, 2003, 7:05pm » |
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Cool Michea1... Lotsa people DREAM of 12 yrs PF!!!
Lets see now... 12 yrs PF, started at 19, now 55... hmmmm... (24 yrs - yep... you've paid yours!  )
Hope the PF time keeps going!!!
on May 10th, 2003, 5:02pm, oringkid wrote:| Now I have 3 new things to try when my next cycle hits. O2, Charlies redirection thing, and deep, fast breathing. |
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Me too... (couple others, too) gonna try practicing Charlie's method ahead of time... (not sure how it'd work if your 1st time was a 10)
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INSERT CHARLIE'S COMMERCIAL HERE 
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good luck Michea1, read, read, read...
grant 
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| « Last Edit: May 11th, 2003, 1:31pm by brain_cramps » |
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Michae1
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Re: CH for 20 years...
« Reply #7 on: May 11th, 2003, 5:42am » |
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Thank you all for your good wishes. I realize that this is a very personal condition. I never felt so alone as when I had the Demon. I actually came here initally because my 12 year old Rachel was having what I suspected was symptons of CH. Happily, I think she was just having a child's regular headache. I am more afraid that she will get the same condition that I had, than if I got them back again. I guess you all can relate. Anyway...back in the 70's-80's there was not any real internet..I never met another CH victim...what a resource this is..I really felt alone back then...
During my therapy I was introduced to Bio-feeback, and breathing played a large part of that. It was more for stress management..they were grasping at straws with me, but I have to say, I still use those techniques along with prayer to control my ups and downs, but that is a whole other story...
By the way...good math...55 is right...lol
Peace... ;D
Michael
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: CH for 20 years...
« Reply #8 on: May 11th, 2003, 11:46am » |
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Hi Michae1.......glad yer PF and been that way for sooooo long......Brad did the bio feedback and for him it taught him where his 'chill' mode was. He sat back and thought he was relaxed but the bio proved he was not so it helped him find a level to relax inbetween hits at least or try at home or tune things out inbetween. Brad's bio coot Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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