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HappyElaine
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Over medicating !
« on: Sep 3rd, 2007, 4:19pm » |
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I am going to tell you what I feel and believe. I believe it worked for me. I am not telling any of you to do this. How you treat your clusters is up to you and your doctor.
I was chronic for over 20 years. I was always using some kind of medicine. Until 1999 when I came here I did not know there was any kind of treatment for clusters except pain meds. Then I found this place and information on all kind of meds that helped. I tried O2 but gave up on it I felt at the time it did not help. Because of other medical problems with me, I had to stop taking a lot of the meds I was on. I was ok cause I still had imitrex. My clusters went from Chronic to Episodic. I was in hog heaven.
But I was told when another medical problem came up not to take Imitrex any more.
Oh my God what to do? Well the only thing I could safely take would be O2. But that didn't work the first time I tried, so I felt doomed. Well the first week with out meds was hell, the second week just as bad. Then some angels from here sent me a regulator and cluster mask and I used the O2 the right way. I was able to get by with only O2 and some over the counter meds . I believe the o2 didn't work the first time because I was doing it wrong.
I also believe that all the meds I was taking was making the attacks worst, and made them last longer. I have shared this with a few people here and they tried it and found the same thing I did.
When we hurt we grab for anything that will take our pain away.I know so well about that. I tried just about half of the meds here. If it was legal to take it I took it.
But now For me O2, and a few home remedies, like ice, cold shower, nose strip across my nose when I sleep. Some over the counter med for a shadow or two. My life has been really nice since I changed the way I fight the beast when he shows himself.
Like I said This is what I believe. If any of you do decide to do this ! CHECK WITH YOUR DOCTOR FIRST ! Don't ever stop your meds cold turkey always taper off. Read all there is on this site and OUCH on O2 and how to use it before you start o2, and have everything you need ready. Don't expect your clusters to get better right away. It takes a while for all the meds to get out of your system.
I just feel like it helped me, and hope it helps someone else here.
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Fear less, hope more;
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Callico
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Re: Over medicating !
« Reply #1 on: Sep 3rd, 2007, 4:27pm » |
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I think you may be on to something Elaine. Glad you are doing better!
Jerry
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LeLimey
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Re: Over medicating !
« Reply #2 on: Sep 3rd, 2007, 4:29pm » |
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Thank you for sharing your story Elaine, it always helps to have a perspective.
I too gave up trying preventatives after having tried everything bar methysergide - I just had enough of it all and now I only use O2 and the occasional Frova (CH meds wise)
I can't say I got hit less per se but I coped better. Funnily enough since being on extremely high doses of magnesium, potassium, calcium and vitaminD for my other rubbish I have had the best time of my life CH wise which just goes to show that answers come from the most unlikely sources sometimes!
I agree completely that anyone thinking of changing meds or stopping them should always consult their doctor first - there can be some pretty nasty side effects from messing with meds without medical supervision but its definitely something for peple to consider and talk over with their doctors.
I hopeyou get to be pain free for ever, you truly deserve it (((HUG)))
lots of love
Helen xxx
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DennisM1045
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Re: Over medicating !
« Reply #3 on: Sep 3rd, 2007, 4:49pm » |
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That's awesome new Elaine! I'm glad you found something that works. Just out of curiousity, what were you doing wrong with the O2? What changes did you make in your delivery technique?
-Dennis-
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HappyElaine
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Re: Over medicating !
« Reply #4 on: Sep 3rd, 2007, 5:19pm » |
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Helen its funny you said that about the magnesium, potassium. Because of a adrenal mass I have I also have to take Magnesium and potassium. I been on it for a year now.
It could very also be something that is helping me.
I wish you lots of pain free days also, I think you deserve it.
Dennis, to start with back when I first tried O2 all the new information that we have now on how to use O2 was not here.
My doctor ordered O2 at 7 liters, also I had a nose tube breather. Then I bought a small mask. I did not run to the O2 at first sign of a cluster. Those were all mistakes. The first time I tried o2 I didn't know the right way.
Now I use a cluster mask, 15 liters, and I have a bubbler on mine. Also I hit it first sign of a cluster. I DO NOT WAIT !
Thanks to people here researching and coming up with all this information, I feel I have life in me again, plus I am med free. I like that part as much as being pain free.
Thank you Jerry. It has felt strange not being chronic but its nice to have a year vacation from the beast. Its even better to not fear him as much. Some times I even feel guilty when I see others hurting so.
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Jonny
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Re: Over medicating !
« Reply #5 on: Sep 3rd, 2007, 5:48pm » |
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on Sep 3rd, 2007, 5:19pm, LadyElaine1 wrote:| but its nice to have a year vacation from the beast. |
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Only a chronic could ever know where your coming from, E- baby!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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ClusterChuck
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Re: Over medicating !
« Reply #6 on: Sep 3rd, 2007, 6:01pm » |
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Elaine, I have done the same thing. I am still getting nailed several times a day (up to 10 a day) but NO WHERE NEAR the 18 or so a day!
For me, and you, at least, no preventatives is much better than all that crap they used to shove down our throat!
In my mind, if you have tried virtually every prescribed drug, and cocktail that we know of, and you are still getting slammed, I say try the no meds route. It is worth a shot! After all, you are ALREADY getting slammed, so why add drugs and side effects onto the mix?
As the hippies used to say, Go au nateural ... ( I know, I butchered the spelling, SO WHAT!)
on Sep 3rd, 2007, 5:48pm, Jonny wrote:Only a chronic could ever know where your coming from, E- baby!
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OMG!!! The world is coming to an end! I actually agree with Jonny!
Chuck
PS: Hun, you DESERVE the break from the beast! It also gives the rest of us chronics hope, when we see people like you and Jonny getting breaks.
I can't imagine a year without hits ... Hell I can't imagine a week ... wait ... a DAY without my buddy (?) the beast stopping in for a visit or two ... or three ... or four ... or more
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Patrick_A
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Re: Over medicating !
« Reply #7 on: Sep 3rd, 2007, 10:17pm » |
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I also agree with you Elaine.
I personally think that Imitrex gives me worse CH's than if I just let the cycle take its course. Before Imitrex, I'd average about 5 a week. After Imitrex, I'd average about 15 a week. It was as if the imitrex blocked it but only till it wore off, then it would hit me again and I'd take another trex. Eventually I'd suffer lots of rebounds.
Pat
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sandie99
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Re: Over medicating !
« Reply #8 on: Sep 4th, 2007, 3:09am » |
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Elaine,
that was a great post. 
Besides occasional caffeine tablet and taking energy drink when I get hit, I'm off all meds. And I'm happy with that. I decided that myself and it's been a lot better treatment for me than any of those meds neuros and GPs gave.
I've been taking extra calcium and magnesium for a long time and I know that they're helping me. And I'm going to check if I get enough of potassium as it is.
PF days to us all,
Sanna
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HappyElaine
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Re: Over medicating !
« Reply #9 on: Sep 4th, 2007, 7:45am » |
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Chuck I use to think I would never see pain free time. It came, not sure why? I give this place and all the information on this site all the credit. I spent my first few years here doing nothing but reading, talking to people about clusters. It took all those talks, all the research, all the reading to figure out what I needed to do. I didn't know what was worst the clusters or the side effect from the drugs. I believe with all my heart that someday we will stumble on the right answer. I dream of the day, that the beast will be dead for good and he never visits me or anyone here again. I hope I live long enough to read here that a cure has been found or even a cause.
If we find the cause we find a cure ! I believe it will happen !
Any way just wanted to share and hope it helps someone.
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George_J
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Re: Over medicating !
« Reply #10 on: Sep 4th, 2007, 9:46am » |
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Elaine, I'm episodic, and have always been episodic. Twice a year back when I was younger, and less frequently now. However, I elected to go med-free sometime in the mid-seventies.
At that time, I was prescribed caffergot and Sansert (at different times), Periactin, and a variety of pain medications, including opiates. In my experience, none of them helped--and some seemed to increase the number of attacks I got. A couple of times, the cycles extended beyond the 6-8 weeks that was typical of mine. (They have always been remarkably consistent in the times of the year that I could expect them, and in their duration.)
I haven't returned to the use of prescription medications, and so I have never tried Imitrex, nor have I used any of the preventives, including verapamil or lithium.
My cycles have consistently gotten farther and farther apart over the past twenty years. Probably a function of age, I suppose. I understand that early onset may predict a gradual lessening of cycles over time. That seems to have happened in my case.
Given that they seem to be subsiding, I am reluctant to attack the beast with stuff that (anecdotally, at least) may increase the number of attacks, cause rebounds, or extend the length of a cycle. I can endure them as they are, but I think I'd be on a slippery slope if they worsened. So I've gotten very conservative with the things I try.
Melatonin seems to decrease the number of attacks I get at night. Since I get hit almost exclusively at night, it appears to reduce the number of attacks I get during a cycle. It does not seem to affect the length of the cycle itself. So it's part of my arsenal. The jury's still out on magnesium and calcium supplements, as far as I'm concerned. I only added them during the last cycle, so I can't say that they've done much good yet--although they seem to do no harm.
Energy drinks with taurine kill shadows pretty effectively for me, but don't do much to a full-blown attack. Still useful, though.
I plan to add the use of oxygen as an abortive during my next cycle, so we'll see how that works out for me. I can't see how it could do much harm, since we breathe the stuff every day. I'm hopeful that it will add another element of control, without causing trouble.
Conservative? Yes. Overly so? Maybe. If I had been chronic, my decision to forgo medications may have been different. For me, ceasing to medicate seemed like the best approach, and I haven't had anything happen since that has changed my mind.
At the same time, I only wish the best to those for whom medications are a lifeline, and for those who could not live any sort of life without them.
Best wishes,
George
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Ah! The foreigners put on such airs
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The pain they inspire
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It all comes to light in the sheer
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sldrswyfe
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Re: Over medicating !
« Reply #11 on: Sep 4th, 2007, 10:16am » |
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I can't pull the "quote" box over just one sentence, but I have to "amen" " "Only a chronic would understand" about what it must be like to have a year pain-free, I cannot imagine that, but being here has given me alot of hope that it is a possibility. One I didn't believe in, until being at CH.com.
Potassium is getting alot of attention lately...my best friend has a potassium defficiency she recently found out. It's very damaging to the body to have this.
And to correct, it only takes getting on supplements. I am going to do this...and especially with the above information and you all have noticed a decrease in attacks when taking it. It can't hurt either way.
Hope you all continue to have great pain control.
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PollyPocket
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Re: Over medicating !
« Reply #12 on: Sep 4th, 2007, 10:18am » |
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This is my first cycle going med free. The first doc prescribed the usual verap and a new one for me- ergotamine. Both scripts have remained unfilled.
As some of you know, I'm using seeds and getting great results. I still get hit occasionally, but the jolly green giant is here for that. The only other time I had o2 was 11 years ago after several hours of K10. On the way to the hospital, the emt's gave me o2, but at that point it was too little too late and I've been reluctant to try it until this year.
For the first time in 22 years of being episodic, I feel like I am in control of my CH, not IT running ME. I feel stronger, I feel like I am empowered. And it is an awesome feeling.
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fubar
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Re: Over medicating !
« Reply #13 on: Sep 4th, 2007, 12:17pm » |
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I don't think there is any coincidence that being med-free DECREASES attacks. I have been chronic for a hell of a long time now, and I have tried everything. Everything except surgery, that is. My last two neuros both want me to try surgery as the next step, as all preventatives have failed.... no thanks.
When I used to succumb to the pain and take whatever was thrown at me, I think the cycles were much harder to deal with. Now, I just deal with them on my own terms, with not much medicine at all. There is no way to really explain it, but I 'go somewhere else' in y mind when the attack starts. I let my body do whatever the hell it wants to do, and I come back to it when the attack is over.
Believe me, I know how nutty that sounds. But it's the only effective method I have found... and it's free.
Fu
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E-Double
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Re: Over medicating !
« Reply #14 on: Sep 4th, 2007, 12:37pm » |
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with exception to the DHE in July I have been med free for a yr and a half.
Coming off made life easier for me.
It was also thwe very first cycle that i ever tried meds and i went from being classic episodic with relatively brief cycle to enduring a cycle that is 31/2 years long.
Taking meds extend the cycle? who knows
but i feel better without it
hugs
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George_J
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Re: Over medicating !
« Reply #15 on: Sep 4th, 2007, 1:22pm » |
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on Sep 4th, 2007, 12:17pm, fubar wrote:
When I used to succumb to the pain and take whatever was thrown at me, I think the cycles were much harder to deal with. Now, I just deal with them on my own terms, with not much medicine at all. There is no way to really explain it, but I 'go somewhere else' in y mind when the attack starts. I let my body do whatever the hell it wants to do, and I come back to it when the attack is over.
Believe me, I know how nutty that sounds. But it's the only effective method I have found... and it's free.
Fu |
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Doesn't sound nutty at all. I think most of us who've had these a long time learn to do that, or something similar.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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sldrswyfe
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Re: Over medicating !
« Reply #16 on: Sep 4th, 2007, 1:39pm » |
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It seems that when you've had these for a long time, chronic (I am too) or episodic, there's a sort of "making peace/resignation" to it.
Being forced to handle CH's w/o o2 or meds, which didn't work for me anyway, put me in a position to learn how to deal without all of the above.
It got pretty bad at times though. There's definatly a big difference in things fourteen years into it, then when I was five years into. The difference is my perception.
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"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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