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karma
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instant gratification vs. clear thinking
« on: Oct 6th, 2004, 12:15pm » |
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The pain from CH sucks! It is life altering and temporarily debilitating. It doesn't help that there is no clear method to treat the symptoms and no method at all to cure the problem.
Since I've been here it's become pretty clear that allot of people (myself included) suffered through the pain of CH for years and years w/o benefit of triptans. It seems that these people are episodic.
On the other hand allot of people here have gone through drug after drug only to find out they stopped working. The most heart breaking comment I read is "I don't know what I will do if this stops working" It seems that most of these people are chronic.
I'm sure you guys have figured out where I'm going with this and I don't want to get into a pain comparison.
I'm trying to understand why people will continue to take drugs that have serious health consequences or may cause the CH cycle to get worse over time and even if they don't work vs. more wholistic methods like exercise or meditation techniques that have virtually no side affects.
I'm glad to see O2 is being pushed more and more not just because it seems to be very affective but also because it has virtually no side affects. The wholistic approach doesn't always work either but at least it won't kill you, no matter how much you do.
Is the instant gratification of being pain free for a short time forcing us to make make a deal with the devil?
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karma
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Re: instant gratification vs. clear thinking
« Reply #1 on: Oct 6th, 2004, 2:01pm » |
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Yea I know no one wants to admit that maybe there is no magic pill.
blast me, cuss me tell me to fuck off, I don't give a damn here it is. My humble opinion of course.
Derby Demons post is a perfect example of what I'm talking about. Sorry D.D. I'm not picking on you.
Drugs don't work? Throw more drugs at it!
O shit, Now i've got a problem caused by the drugs! Throw more drugs at it.
O shit now I'm on my way to the E.R.! Throw more drugs at it.
Guess what ? Now I'm taking drugs 24/7 and having the worst CH cycle of my life.
Does anybody see a pattern here?
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Tom K
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Re: instant gratification vs. clear thinking
« Reply #2 on: Oct 6th, 2004, 2:25pm » |
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Better living through chemistry? I fall into the episodic category, Trex and O2 work for me. If I couldn't take Trex any more, I don't know what I would do. Probably still take Trex. Yeah, it is a health hazard, but it works. holistic stuff doesn't work, no herbs, yoga, meditation, nothing. The witch doctor, eh, I mean chiropractor never fixed it, accupuncture never fixed it, why waste the coin? I may be one of the lucky ones, but I get away with up to 6 doses of Trex Stats in a day. Full 6mg ones. Never had a side effect, only when I didn't have a CH and I thought I did. Turns out it was sinus ha not a CH but felt the same. I don't want everyone to think that it is good to do but I have been told by more than one Dr, that if you take it for CH, then it will do what it is supposed to and you can take up to 6 per 24 hrs. I've done it and am still here to talk about it and have never been to the ER on a Trex related event. What works for me might not work for you, so kids...don't try this without taking to your Dr.
T
PS...I'm not a doc nor do I play one on TV. This works for me and I have clearance to do so by my Dr. This does not in anyway shape or form condone OD'ng on Trex. Read the flier in your meds and follow all instructions or talk to your Dr.
T
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DerbyDemon
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Re: instant gratification vs. clear thinking
« Reply #3 on: Oct 6th, 2004, 2:43pm » |
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In the time I've been diagnosed with CH, the only thing that has sent me into an episode has been my foolishness of not refilling the Covera prescription. Now that they don't make the stuff I have to fight this thing with Verapamil.
I wouldn't be opposed to something more natural. But we are in the year 2004...I've known the sex of all three of my children before they were born...can get a meal served to me in under a two minutes in my car...and can make juice out of powder that the astonauts drink in space.
Give me pills or let me drop acid. And thank you Tom for the info.
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don
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Re: instant gratification vs. clear thinking
« Reply #4 on: Oct 6th, 2004, 2:52pm » |
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Quote:vs. more wholistic methods like exercise or meditation techniques that have virtually no side affects.
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Because none of those things will stop an attack.
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Tom K
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Re: instant gratification vs. clear thinking
« Reply #5 on: Oct 6th, 2004, 3:13pm » |
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There is one thing that does work, sometimes and that is Mt Dew AMP. If I slug down 2 of them, ice cold, it will sometimes stop a K4 in its tracks. Don't know how or why but it is cheaper than Trex and pretty much at any Quickymart.
T
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Jonny
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Re: instant gratification vs. clear thinking
« Reply #6 on: Oct 6th, 2004, 3:34pm » |
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Drugs, drugs and more fucking drugs for me....Tex I dont like to take cause it causes me rebounds, but if I have Trex in hand and a HA...Guess what....im spiking that Mutha!!
14 years chronic with nothing but ice, followed by two years of finding the right meds is enough for me. Now that I have found DRUGS that work for me I will pump them in all day long to kill the beast, even if it kills me...it kills the beast for good 
..........................................jonny
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Tom K
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Re: instant gratification vs. clear thinking
« Reply #7 on: Oct 6th, 2004, 3:36pm » |
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on Oct 6th, 2004, 3:34pm, Jonny wrote:Drugs, drugs and more fucking drugs for me....Tex I dont like to take cause it causes me rebounds, but if I have Trex in hand and a HA...Guess what....im spiking that Mutha!!
14 years chronic with nothing but ice, followed by two years of finding the right meds is enough for me. Now that I have found DRUGS that work for me I will pump them in all day long to kill the beast, even if it kills me...it kills the beast for good
..........................................jonny |
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AMEN to that!
T
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Superpain
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Re: instant gratification vs. clear thinking
« Reply #8 on: Oct 6th, 2004, 5:59pm » |
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on Oct 6th, 2004, 3:34pm, Jonny wrote:Drugs, drugs and more fucking drugs for me....Tex I dont like to take cause it causes me rebounds, but if I have Trex in hand and a HA...Guess what....im spiking that Mutha!!
14 years chronic with nothing but ice, followed by two years of finding the right meds is enough for me. Now that I have found DRUGS that work for me I will pump them in all day long to kill the beast, even if it kills me...it kills the beast for good
..........................................jonny |
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Well said...
Not to mention I love to bludgeone people who suggest "holistic" hippydippy bullshit to deal with a cluster!
After I bury a fukin axe in their head I suggest that they try to meditate and don't eat any wheat.  
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Chris
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karma
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Re: instant gratification vs. clear thinking
« Reply #9 on: Oct 6th, 2004, 6:16pm » |
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D.D, the Cevora and the Verap didn't stop the episodes you still got hit and now they are probably useless.
Tom, did the cycles get worse when you got started on the Trex? Longer cycle, more hits?
Don, I hate it when people generalize. Exercise and meditation do abort most attacks for me. For the ones that get through I've learned how to make them shorter and less painfull. Ya just gotta get out of the Lay z Boy.
Jonny, did you ever give the exercise thing a try? Is it possible that the 02 and exercise might work w/o the abortives? 14 years chronic and I might be singing a different tune but for now I have no experience with being there.
I wouldn't waste money on what doesn't work, including meds but if I try something and the cure is potentialy worse than the pain then I gotta wonder why I'm doing it. I've been getting through this for a long, long w/o them and I'm still here living a mostly good life.
I've read enough horror stories here that start like this: wrong meds, can't get to a doctor for two months, uncooperative insurance co's, meds, that don't work, panicky people that have run out of meds. I took all these meds. but now I've got something else.
I decided that if I could stay away from the meds. I at least know how to deal with what I have and I don't have the expense.
There are alot of people that have no insurance or shitty medical facilities or no money that need to find ways to deal with the pain other than outrageously expensive meds. and incompetent, overpriced doctors.
When I mention life style changes or holistic methods I'm not talking about witch doctors and scents, I'm talking about what does work for me and has no side affects. Vigorous exercise, water and meditation.
Sometimes it not as instantly gratifiying as 2 minute belly bomb while waiting in your car. But in the end I don't have to deal with the belly bomb instantly wanting to leave the premises.
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don
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Re: instant gratification vs. clear thinking
« Reply #10 on: Oct 6th, 2004, 9:17pm » |
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I admit I have tried "tree hugging"
While repeatedly smashing my noggin on the trunk of the grand ole Elm.
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Tom K
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Re: instant gratification vs. clear thinking
« Reply #11 on: Oct 6th, 2004, 9:41pm » |
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Don't know if they got longer on their own or because of the Trex. I have had to go through a few with no meds because of taking Zomig NS and it not working. Had to go 6 hours with no other meds...sucked ass. Didn't see the cycle shorten any because of it, though.
The exercise thing didn't work, I'm dancin' enough don't like trying to jog on top of it. If those things work for you, then have at it. Didn't work for me, rather take my chances with Trex, Trigger Point Injections and O2. What doesn't kill me makes me stronger, or something like that. And, like Jonny says, if the Trex kills me, then it kills the Beast, too. I've dealt for 21 years and know that I'm in for a lot more. F'ck 'em. I live my life, take my meds and let the chips fall where they may. I almost bit it 3 years ago, non-CH related and started smoking again, because I'm going to do what I want to do. I'm not going to do shit to please other people. Maybe the wrong attitiude, but it is my attitude.
T
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Gator
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Re: instant gratification vs. clear thinking
« Reply #12 on: Oct 6th, 2004, 10:43pm » |
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I'm so very happy for you that you've found what works for you.
As for me, I have discovered:
1. Exercise only delays the inevitable and a lot of times makes it worse.
2. You can't dance in the "Lotus Position"
3. Trying to pee (because of the extra water intake) while dancing makes for a HUGE mess in the bathroom.
From your stance on drugs, I can only imagine you've never found yourself staring down the barrel of a .44 magnum as you put it in your mouth or took every pill out of the medicine cabinet and laid them on the desk with a glass of water preparing to do the only thing you know for a fact will end your pain. I've been there. If the pain from a ch is the devil, then O2 and trex are my saviors.
Like McCoy said to the priestess (who performed Fal Tor Pan and restored Spock's Katra), "I choose the danger."
Gator
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Mr. Happy
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instant gratification can be a Good Thing
« Reply #13 on: Oct 6th, 2004, 11:59pm » |
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on Oct 6th, 2004, 10:43pm, Gator wrote:| O2 and trex are my saviors. |
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Praise Wotan! Another satisfied customer.
O2 remains the common denominator here.....let's not forget that important point as the gloves come off, gentlemen.
I love my drugs. I remember the times before I had them. They really sucked. I got gallon bags of trex and zomig snorts, enough verapamil stored up to keep a rhino constipated for a year, and half a dozen O2 tanks laying around the house.
Unfortunately, I've only been able to use the O2. Ate some of them damned shrooms, and son of a bastich, I haven't had to sample any wares in over 2 weeks now. So much for Beta testing any new stuff. I still sleep with a 6 pack of trex under my pillow, tho.
I'm not sure how holistic that is......
But it sure is Realistic,
RJ
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karma
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Re: instant gratification vs. clear thinking
« Reply #14 on: Oct 7th, 2004, 7:52am » |
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Let me clarify. I'm not against taking drugs. I have no problem taking drugs if they work. In fact I'm taking verap right now and I've still got a couple zomigs left over from when I gave it a try in August.
The Zomig will get old and stale or end up in the trash because it didn't work. The only thing that changed was I got hit harder and more often when I tried it. The verap seems to help so it stays while in cycle but you can bet that it would be out if it didn't work or had seroius health consequences.
I've never considered the ultimtate cure for the pain but I have done the math when it comes to deciding how often or how bad I want to get hit. My own experience taught me that zomig doubled the number and severity of the hits. It made my life unbearable so I stopped and went no further in exploring triptans. I looked for something less complicated and more affective. 02 works for most to abort but for some reason its hard to get a script for. Shrooms work to kill the cycle but are illegal. Neither one of these treatments has any downside. Exercise, Caffine, water, meditation etc. all work to some extent and don't make the condition worse.
Doctors, hospitals and insurance companies make money on selling drugs they don't make shit on the others so where is their loyalty?
That awsome feeling of being PF after a horrendous hit is very powerful but if what you are doing to get there is realy making your condition worse then maybe your not thinking clearly. I prefer to remain an episodic that gets hit every couple of years rather than do anything that even has the slightest chance of increasing the frequency.
I'm not trying to convince anyone that I'm right or wrong. If the triptans work for you great, being pain free is everyone's goal. The point I'm trying to make is that if the meds. don't work more meds. may not be the answer.
Remember the KISS theory.
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Redd
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Re: instant gratification vs. clear thinking
« Reply #15 on: Oct 7th, 2004, 8:14am » |
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Quote:There are alot of people that have no insurance or shitty medical facilities or no money that need to find ways to deal with the pain other than outrageously expensive meds. and incompetent, overpriced doctors.
When I mention life style changes or holistic methods I'm not talking about witch doctors and scents, I'm talking about what does work for me and has no side affects. Vigorous exercise, water and meditation.
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Try explaing this to your boss that you are leaving your desk and running around the block for a half hour, or sitting crosslegged doing nothing while your coworkers are covering your ass doing their job and yours while you meditate and suck down a gallon of water in the luch room three or four times over the course of the work day. Think you'd hold a job for long? Think youd be able to pay your rent or keep food on the table for your children?
Think again!!!
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karma
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Re: instant gratification vs. clear thinking
« Reply #16 on: Oct 7th, 2004, 8:25am » |
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Got two kids, two mortgages, 30 employees and two businesses to run.
Yea been there done that
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Redd
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Re: instant gratification vs. clear thinking
« Reply #17 on: Oct 7th, 2004, 8:43am » |
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Hmmmm sounds like you are the boss and have job security....doesn't sound like this is much of a worry for you.
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karma
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Re: instant gratification vs. clear thinking
« Reply #18 on: Oct 7th, 2004, 8:48am » |
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Its the same but different.
I've got the job security of 30 people to worry about. Still gotta pay the bills and the bank don't wanna hear about no damn headache.
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Redd
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Re: instant gratification vs. clear thinking
« Reply #19 on: Oct 7th, 2004, 8:56am » |
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Yeah well, I'm off to commute 45 minutes to my job where I have to fucking ask permission to pee let alone go take care of a headache. I spend 99% of my day talking on the phone to people who think they don't ever HAVE to pay bills, some of them they CAN"T pay their bills, and I can't just toss my phone aside and say "Please hold... I have to go meditate a while" and I do this just so I can pay MY bills.
Damn skippy I'm gonna keep trying whatever I have to to keep the roof I got and food in the pantry.
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karma
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Re: instant gratification vs. clear thinking
« Reply #20 on: Oct 7th, 2004, 9:38am » |
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Good Luck Redd,
I hope things get better for you.
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Tom K
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Re: instant gratification vs. clear thinking
« Reply #21 on: Oct 7th, 2004, 2:57pm » |
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on Oct 7th, 2004, 7:52am, karma wrote:
My own experience taught me that zomig doubled the number and severity of the hits. It made my life unbearable so I stopped and went no further in exploring triptans. |
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I don't know how you could surmise that. Each one of my cycles has been almost totally different then the last. Sometimes they last a few weeks, sometimes a few months. And that is whether I Trex or not. When I'm peaking and getting hit 8 or more times a day with K8's, the last thing I'm looking for is exercise. Hope your plan works for you, because usually just when I think I have the Bastard figured out, it throws me another curveball.
T
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Mr. Happy
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Re: instant gratification vs. clear thinking
« Reply #22 on: Oct 7th, 2004, 8:45pm » |
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Karma......talk to Kim. You'se guys are on the same page. You go to your church, I'll go to mine. We'll meet here later and have a great time.
Git down tonight........
RJ
Edited cuz I can't spell for shit or get "tenses" right the first time around.
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| « Last Edit: Oct 7th, 2004, 8:47pm by Mr. Happy » |
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thebbz
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Re: instant gratification vs. clear thinking
« Reply #23 on: Oct 7th, 2004, 10:19pm » |
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When I find a prevent that works I will eat it dont care.
Have one other therapy to try...am loaded for bear as I know its time any time. Have the trex and pred for back up . If boiling acid worked I would buy a five gallon bucket. I will continue to be the guinea pig as I have for 25 years,until I find something practical that works. As I too have to maintain employment cycle or not. I have found though once my employers see the demon in action they say go home I tell them home is for rest and cant rest there either,slam the trex take a break and go to the business of the day.
BB
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karma
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Re: instant gratification vs. clear thinking
« Reply #24 on: Oct 8th, 2004, 8:17am » |
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Blaming the triptans for making the cycle worse was easy. In over 15 years the cycle only changed when I used it. When I treid to abort with it the hits went from 2 a day to 4 -5 and from 15-30 minutes to 2 hours. Add sever shadows 24/7 with Zomig and virtually none w/o. Two days after I stopped the routine was back to normal. For you skeptics you can say its only conicidence but you'd be wrong.
There is more and more evidence to suggest that the use of triptans may make the Cycle worse. I know it sucks because the triptans have been the saviour for so many in killing the pain but at what expense? There was a study inserted here that suggested that same thing a month or so ago.
There are exceptions to every scenario but I would be willing to bet that if a study was done that tracked the progress of CH suffrers and the use of triptans it would show an increase in the severity of the cycle in direct relation to the increase in triptan useage.
You can't get away from the fact that the sufferers here that take the most medication, including triptans are the ones that have CH the worst. Mind numbing drugs, Boneeating drugs, Stomach eating drugs and heart stopping drugs that may or may not help vs. 02, vigorous exercise, water, meditation, suppliments and shrooms that may or may not work?
Everyone has a choice to make. Do what works best for you to get through. I know what I got and I know how to deal with it. I refuse to be a guinea pig and I'm still alive and kicking and enjoying life (most of the time)
Show me a cure and I'll risk it but risking my health to treat the symptoms is not an option I will consider.
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