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Topic: How many here... (Read 650 times) |
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oringkid
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have gone with out meds for 1 year or longer and what is your opinion of the difference between CH's with meds and without?
Curious, Sherry
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don
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CH hurts more without them
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BobG
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Re: How many here...
« Reply #2 on: May 25th, 2003, 10:33pm » |
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Don't know if you're asking the chronics or episodic or both? So I'll give my answer anyway. I'm episodic. My last cluster cycle was Jan, Feb and March 1998. Each year since (except this year) I had daily shadows from Jan through about April. I still get occasional individual attacks brought on by my work schedule (almost constant case of jet lag). I have used no medicines of any kind since 1998. When I get an attack now I use deep breathing and ice packs. The attacks usually last about 30 minutes. My occasional attacks now are much less, kip 4 or 5 at the most, than they were during cycles years ago. Why the change? I don't know but my best guess would be that I'm older and maybe out-growing the damn things.
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stevegeebe
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Re: How many here...
« Reply #3 on: May 25th, 2003, 10:41pm » |
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In the early years I went without any medications basically because the Doctors did not know what they were dealing with. I now have a Neuro that attacks.
I've skipped some years (cycles) recently and this term has been very forgiving. I know it's the meds. Meds help.
SG
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Callico
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Re: How many here...
« Reply #4 on: May 25th, 2003, 10:45pm » |
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Since seeing a neuro five weeks ago I have been using oxygen and licocaine nasal spray. If used early enough they seem to lessen the pain, but I have noticed the HAs last longer. It seems I have a choice between an 8+ for twenty to thirty minutes or a 4-6 for an hour. I think I lean toward the meds.
jc
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KingOfPain
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Re: How many here...
« Reply #5 on: May 26th, 2003, 12:13am » |
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Never tried it..... not that brave.
KingOfPain
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forgetfulnot
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It is Sherry, right? Anyone that can deal with cluster headache on a regular basis without any meds should be shot and removed from normal society. You are a freak and we can not allow the government to discover you while you are alive.
But if you can pull it off, more power to ya
I must say that after 19 years of this fun I just don’t get it
And that is all I have to say about this at this time.
Lee
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brain_cramps
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Re: How many here...
« Reply #7 on: May 26th, 2003, 7:09am » |
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Good question, Sherry
I am episodic and have been med-free for more than 5 years. Since going med-free, my cycles have gradually got shorter, going from 6-8 weeks to under 3 weeks for my last cycle.
Originally, this was because of problems with our gov't healthcare system (Alberta, Canada). When I realized that each subsequent cycle was getting shorter, I decided to keep fighting CH without meds.
I hope to have o2 before my next cycle. Other than that, I plan to continue going med-free hoping that the cycles continue to get shorter. (If they don't, I'll probably try meds again.)
It is definitely not easy, even with short cycles and I realize that this route is not for everybody.
Apparently I should be shot and removed from society, 
grant 
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suzy617
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Re: How many here...
« Reply #8 on: May 26th, 2003, 7:54am » |
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I am episodic and was med free for 20 years. I tried some pain killers in the very early years and when they did nothing I just decided to go it on my own. It wasnt until 2 years ago that I decided I'm getting to old to do this anymore and decided to go back to the Neuro. Imitrex is the one for me. I will never go another cycle without it.
Grant, I guess I should be removed from society also.. 
suzy
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jonny
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14 years chronic.
Someone would die trying to get my meds away from me.
.................................jonny
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kissmyglass
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Re: How many here...
« Reply #10 on: May 26th, 2003, 8:14am » |
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Went the first 18 months or so with multiple kip 10s every day with nothing but ice, lots of ice and driving around in sub zero weather with the air conditioning on in the mddle of the night. Was at the end of my rope. Then found this site ....now I have Verap, O2 & Imitrex, and of course all you great peeps. I will NEVER do battle with the beast without them again....as long as they keep working that is....
Kev
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Roxy
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Re: How many here...
« Reply #11 on: May 26th, 2003, 9:40am » |
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Went the first year or so with no meds, and no real clue or information about aborting the ch's. Heck, didn't know what was wrong with me.....  In retrospect, I don't know how I made it through that year. Just thinking about going a year now, without imitrex........ makes my blood run cold.
Guess I was just tougher back then...... 
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ZAIRA
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Re: How many here...
« Reply #12 on: May 26th, 2003, 3:06pm » |
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on May 25th, 2003, 10:11pm, oringkid wrote:have gone with out meds for 1 year or longer and what is your opinion of the difference between CH's with meds and without?
Curious, Sherry |
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If I understand your question ;D... If I don't take a meds it gets worse for me 
Hi Sherry,
Zaira  ;D
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JDH
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Re: How many here...
« Reply #13 on: May 26th, 2003, 4:21pm » |
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I served my first 13 years with the beast basically med free because of lack of knowledge from me and my Dr.
Found out about Imitrex about 5 years ago and o2 this year and I can't imagine ever going through this med free again.
Although I agree with Grant that my cycles probably go on longer with meds than without, I'll take the longer, less painful cycles as opposed to shorter med free ones.
pfdan's
Jim
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Jabeen
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Re: How many here...
« Reply #14 on: May 26th, 2003, 6:52pm » |
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Fortunately I did not have to deal with CHs until I was in my 40's. It took almost a year to find out what I had-finally a good neuro knew and after a lot of misses with meds, we had a hit. A few months later, they stopped-I'll never know if it was just because the cycle was up or the meds helped...but whatever -they were gone for 5 years. When they showed up again, I went back to the meds immediately. (full dose) It seemed to help-they were only happening 2-3X a month and not more than kip4-5. But now I have cut back the dosage, this cycle has been over a year. They still come every couple weeks and they aren't that bad, but I am deathly afraid to stop them. My situation pales to many of these people, but I guess I feel the meds are helpful for me.
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Virginia
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Re: How many here...
« Reply #15 on: May 27th, 2003, 2:40pm » |
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Episodic 13 years, chronic 5 years....haven't been on any meds (unless you count over the counter ibuprofen)in about 4 years.....at the time that I decided to quit prescription meds it was because after 13 years I still hadn't found anything that worked for me.
Now, I haven't had insurance for 2 years so I've had no choice.
I don't remember what it was like to be episodic, so I can't really say how the pain's been without med...I think it's been about the same.
V.
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vig
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Re: How many here...
« Reply #16 on: May 27th, 2003, 3:07pm » |
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I just finished my fifth episode in two uninsured years without any medicine. I just wonder how much permanent damage occurred. My brain was so thoroughly fried many, many times. My memory is weaker. I broke through emotional walls I never knew were even there. I'm not the same person I was two years ago.
I really don't recommend this manner of treatment.
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MarkHW
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Re: How many here...
« Reply #17 on: May 27th, 2003, 3:20pm » |
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I keep vowing to go without meds.
Every time I have yet another med that gives me so many side-effects that I could scream - I say... No more.
Then I start having 3 clusters a day and say... Ok - give me drugs!
So, I have never gone more than about a month or two without some type of medication. And I always have imitrex when I need it.
Mark
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Marc
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Re: How many here...
« Reply #18 on: May 27th, 2003, 4:19pm » |
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Chronic for almost 6 years, I spent the the first 2 years without meds. I wouldn't want to go back to pre-medication days for anything!
Marc
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Charlie
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Re: How many here...
« Reply #19 on: May 28th, 2003, 12:41am » |
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Very few drugs for CH in the 60s and even 70s that had an effect on me. Inderal would work sometimes after about 5 days. I was episodic and hated taking the stuff so I put up with pain for a week until it began to help. Dr. Wright's little technique allowed me to do this.
Charlie
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Kirk
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Re: How many here...
« Reply #20 on: May 28th, 2003, 4:22pm » |
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Episodic for 30 years and cronic for 2.5 years.
Most of that without effective medication.
They will now get my meds from my cold dead fingers.
TTFN
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Slammy
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Re: How many here...
« Reply #21 on: May 28th, 2003, 4:28pm » |
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could not imagine dealing with clusters without my meds....... fortunately, no side effects or addictive meds on my plate.
Slammy
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Linda_Howell
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Re: How many here...
« Reply #22 on: May 28th, 2003, 4:54pm » |
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Does one consider 02 a "med" ??? if so, no I've never gone that long without.
as of right now.....if you take my Amerge and my Imitrex away from me, I will have to kill you.
LindaH
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andy
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Re: How many here...
« Reply #23 on: May 28th, 2003, 5:44pm » |
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Posted on the meds board also: Im episodic for 15 years. The only meds i have ever taken for my CH have been prednisone 2 times and they have broken the cycle each time after the taper. I dont like the idea of being medicated for long periods of time. I have taken many OTC meds that did not seem to work very well for me. I have never taken a preventitive and the only abortives ive tried is imitrex inj. that worked very fast. I use oxygen, that almost always works within 10 minutes if i can get to it soon enough. This cycle is over now, I have been PF for over 2 weeks. I drank some alcohol last weekend to test the beast and i kicked its ass!!! This cycle was a short one, it only lasted 5 weeks with less than 10 kip 10s. I am lucky i guess to have such a short cycle. I wouldnt have been able to cope without this message board. Thanks to everyone that contributes to this great place. and i hope everyone has a cycle as short as mine, or shorter!! Im not going anywhere, Ill still be around to support others. This is a good thread Sherry, thanks for asking. PFDAN .............andy
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Kenzie60
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I went without meds for 12 years, only because the doctors kept telling me it was sinus infections. Finally diagnosed 2 years ago. You cannot get the meds away from me now. I would never go without medication again.
Roseanne ;D
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