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John_Booth
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overmedicating?????
« on: May 4th, 2005, 2:17pm »
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Just wondering, ... we all being so frantic to find relief, if some of us are actually making the attack worse.  I read where some of us jump out of bed, if the coffee is not made, we drink a coke while the pot brews, then hit the O2 as we take 2-4 meds, and the demon still hits with full throttle and no less duration than the last time.
 
I am not one to criticize, ... if doing all that and the bunny hop while wearing fishnet stockings helps, .. fine by me.  It is just that I take NO treatment, and never have (but I am MOST fortunate, it would seem).  I do NOT suffer like many.  I would think that if any condition invites over medicating, ... CH would be top of the list.
 
Any opinions? jb
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Re: overmedicating?????
« Reply #1 on: May 4th, 2005, 2:40pm »
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I do believe some people over medicate, but given their only other choice might be a lethal dose of lead poisoning........ I guess I would say overmedication is a little better choice.   Am I correct in assuming that you take NO meds for your ch?  If that is the case, how long have you had ch?
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Re: overmedicating?????
« Reply #2 on: May 4th, 2005, 2:46pm »
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I'd smoke a dog turd if it would stop a cluster.
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Re: overmedicating?????
« Reply #3 on: May 4th, 2005, 2:50pm »
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on May 4th, 2005, 2:46pm, Bob P wrote:
I'd smoke a dog turd if it would stop a cluster.

 
But, would you chainsmoke dog turds? I think that's the question. Has anyone tried selling dog turds to CH sufferers yet? I have a seeming endless supply but since my wife likes to feed the dog table scraps with her dinner, they tend to be a little inconsistent and many would be very difficult to roll into anything smokable.
 
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Re: overmedicating?????
« Reply #4 on: May 4th, 2005, 2:52pm »
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Yep, I've got an opinion, although it's an unpopular one most probably.  My hubby was unmedicated for 20 of his 28 years of clustering and absolutely, his attacks were shorter and less frequent during those unmedicated years.  His cycles would last, at max, eight weeks.  However, his pain level intensity was insanely higher in those days, too - he's an amazing strong guy, my Michael.  (He was unmedicated due to a series of misdiagnoses and a general acquired allergy to uneducated doctors.  Roll Eyes)
 
Oxygen was the first abortive he ever used and it was a miracle for us.  The next cycle (after we found this place that ultimately led us to diagnosis), he tried imitrex.  It helped the pain level also, but a subtle increase in the number of attacks.  Next cycle/remission:  shrooms - we think they probably changed his remission pattern and extended it - blessed be!  The next cycle, shrooms again then, a month later prednisone, then lithium, then verapamil.  He then went through his longest cycle ever, 6 months.  2 year remission, imitrex/O2, verapamil - 5 month cycle, numerous hits.  1 year remission and now back in cycle, approaching the 5 month mark.  Using lithium, imitrex and O2 - has been a very mild cycle for him because of the lithium but still hanging on.  Hopefully nearing the end.
 
Summation?  Meds prolong things and Imitrex causes more attacks.  But....med free is not for the weak of heart or mind.  We haven't yet tried the bunny hop/fishnet stockings trick though.  Although, it might be a really good look for him. Wink
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Re: overmedicating?????
« Reply #5 on: May 4th, 2005, 3:33pm »
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my CH advanced/progressed the MOST/FASTEST in the 2 years I spent unmedicated.
 
Damned if we do, damned if we don't.
tough choices.
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Re: overmedicating?????
« Reply #6 on: May 4th, 2005, 3:38pm »
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I think that that might be true for some of us.  I have chronic CH so some of mine last for only a couple mins.  If One BLASTS me I jump right on it. If it is a lower level KIP I wait a couple mins and see if it is going away.  However, most of us take meds everyday as a prevent.
 
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Re: overmedicating?????
« Reply #7 on: May 4th, 2005, 3:48pm »
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Quote:
I have a seeming endless supply
One of nature's mysteries.  How can a dogs output exceed it's intake?
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Re: overmedicating?????
« Reply #8 on: May 4th, 2005, 3:57pm »
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I have not had CH for 30 years, as you have.
 
As far as over medicating.....I am sure this is the case for alot of us.
 
Like Vig said...my CH also progressed more before I took any meds.
 
I have found that not lying down in the bed seems to be a savior type thing for me.   I have slept in a recliner or propped on the sofa for more than a year.
 
I did start on the Kudzu in February.    Not totally foolproof....but after the first couple weeks on it, it seems to work for me.   I have been able to sleep in the bed, like a normal person.
 
I take no Rx meds of any kind.   I still have my stash of triptans, but have not used them since January.
 
You are pretty lucky.....you said in another post you skip a year or 2 between cycles.    I would have to think that a year (or 2) of pf time must be heaven.
 
Good luck.....PF vibes,
 
Jean
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Re: overmedicating?????
« Reply #9 on: May 4th, 2005, 11:36pm »
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I certainly did not mean to criticize anything anyone does, and I remember back on the bad ones, doing some goofy things like beating head against floor, hitting head HARD with fist, so I can understand one's wanting to try any/everything that even MIGHT help.  Guess I was foolishly thinking that for those who do so much in an effort might try once to simply do nothing except maybe arise and pace a bit and see if there is really any difference.  I know, .... almost laughable to the real sufferers, but I just wonder if there really is a reliable prophylactic or if a lot of it is panic medicating.  Could be for some, .... the episode might be the same without meds as it is with them.  I use nothing but quickly get upright and start some kind of light activity (pace, go outside, come back inside, sit down and be still, ... and it subsides in oh 15-30 mins.  Since I started getting up right away (99% hit while lying down, asleep) has kept me at KIP 7 or less.  I also most often have only one in 24 hours.    jb
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Re: overmedicating?????
« Reply #10 on: May 5th, 2005, 12:24am »
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John,
 
I didn't take this as criticism.   My apologies, if I made you feel that way.
 
Matter of fact....I've often thought about going "cold turkey", just to see how it would be.    However...when it gets right down to it...I chicken out.
 
I've riden a few low Kip CH's out without taking my triptans, but I never did this for too many days.   I thought I could play the mind over CH game....the beast is too smart for that!
 
I'm also episodic.  My hits are always at night too.  By the time I wake up, I'm at a Kip 8 or 9...it's all I can do to even function.    
 
I appreciate you sharing your story.   We are all believers in doing whatever it takes to be PF....and we always enjoy it when someone else has any amount of PF time.  
 
Stick around and keep us updated...
 
PF vibes,
 
Jean  
 
 
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Re: overmedicating?????
« Reply #11 on: May 5th, 2005, 7:55am »
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Overmedication. The rule that works with me is (I'm episodic), for at least the kind of pattern that usually I present, I take no medicine at all. For example, If I do take medicine to abort or avoid one of those 'normal' series of attacks at night, then of course I'll be able to sleep like  a log, but those previously cancelled attacks will then take place during the day. If I take any medicine to abort those that will occur during daytime, then next time the pain reaches me my head will blow away with my shoulders included. A few years ago I've clearly noticed that with me the amount of attacks, rebounds, cycle lifetime, all of them increased when  I used to be what the neuro calls properly medicated.
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Re: overmedicating?????
« Reply #12 on: May 5th, 2005, 8:07am »
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I was only diagnosed in June '04 after 2 solid months of nocturnal hits entered the day I thought something really was wrong other than sinus or allergies....
I dealt with relatively brief cycles 2x per yr. since spring 1995 (first one I can call a cycle for sure but may have had them prior)
Never had meds until diagnosed. Always bare knuckled it with ice and steam and lots of head banging and rocking....
Once diagnosed, I was put on meds.....
I tried weaning off a couple of times only to start getting slammed again.....It seems I get slammed regardless.....I have had a couple times where there were days of PF even up to a week.....
CH turned chronic at the end of March (don't care just another label).......
I do not know if it was the meds unless I come off all and see if the cycle ends but then would need to go back on them for the sake of science to really see an effect Wink
It could have been the nature of the beast.
I have been researching other "alternatives" for the longest time and it is a consideration but @ this time in my life I can not muster the courage or find the time to come off the meds.......
Who knows????????
No complaints.....Just my story Smiley
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Re: overmedicating?????
« Reply #13 on: May 5th, 2005, 11:41am »
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Some meds (like triptans) do seem to increase the length of cycles, although that is a controversial point.  
 
Oxygen is used appropriately, in my opinion.  It provides quick relief for many, with minimal known side effects.  
 
Coffee can help somewhat when the beast hits. I personally think that continual heavy consumption (a former habit of mine) is not good for CH.  Among other things, it reduces the natural production of melatonin, which is already low in clusterheads.  
 
Verapamil, lithium, and other prevents - I don't think they extend a cycle or make things worse.  Lithium is usually reserved for chronics, and they need a break.  Verapamil is a calcium channel blocker, widely used for high blood pressure and other conditions.  Verap is not a perfect medicine, but it is a good one when properly prescribed.  
 
As an episodic for over a decade, I haven't taken much for my clusters - my body doesn't like triptans, and I was reluctant to take other meds.  But I would definitely use Oxygen if (when) the beast reappears.  I have a bottle of kudzu ready.  I also take magnesium, melatonin, and B-vitamins on a regular basis.  
 
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Re: overmedicating?????
« Reply #14 on: May 5th, 2005, 11:48am »
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on May 5th, 2005, 12:24am, TxBasslady wrote:
I've often thought about going "cold turkey", just to see how it would be.    However...when it gets right down to it...I chicken out.

I did it for over a week 3 cycles ago, then discovered melatonin and zomig, and have had the mildest shortest cycles ever for me since.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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