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Topic: episodic meds vs no meds? (Read 394 times) |
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JohnM
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episodic meds vs no meds?
« on: Sep 19th, 2003, 4:20am » |
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My cycles come every 9-15 months and now last 2-3 months. Some years I miss a cycle and start to forget the pain and then wham!
I have kept a HA diary for many years. What I have found is that I get almost exactly the same number of really bad ones every cycle no matter how long the cycle lasts.
Before the imigran inj (pre 1995-ish) with no meds to help, my cycle lasted about a month or less and I got hit maybe 2-5 times a day with no pain relief until the bastard had gone by itself only to return a few hours later.
Since using the imigran inj I rarely get more than 1 a day after the injection (unless I drink alcohol), but my cycle now seems longer but I still get the same number of hits.
Does using meds to stop or prevent the pain cause the cycles to last longer?
John
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Opus
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Re: episodic meds vs no meds?
« Reply #1 on: Sep 19th, 2003, 6:07am » |
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I was wondering the same thing, This cycle I have been able to abort every CH ( except wakeups ) before they get to a 5. My 3 month cycle is going on 5 now. I get many PF days between multiple hit days. I was wondering if the beast is hanging on because I haven't suffered from any Kip8-10's yet. I am not willing to go med free so I can get this over with. I vaguely remember a Kip10 and I am not in the mood to experience another one right now.
Opus/Paul
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Melissa
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Re: episodic meds vs no meds?
« Reply #2 on: Sep 19th, 2003, 6:29am » |
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I went through my cycle in 2000 without any pain meds at all, and it lasted approx. a month. This year, I was on Depakote and taking Imitrex injections or nasal sprays, and my cycle lasted approx. a month.
I used to think meds would prolong my cycle, but am not sure now. Next cycle I have, if it lasts a month again, I will know for sure.
 mel
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brain_cramps
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Re: episodic meds vs no meds?
« Reply #3 on: Sep 19th, 2003, 6:42am » |
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Great question, John. This is something that I have brought up many times in the past, but was starting to think it was just me.
About 5+ years ago (can't remember for sure), because of a legal battle with RevenueCanada (and subsequently Alberta government health-care) I have not taken ANY medication other than 1 imitrex nasal-spray during that time. (It didn't do anything for me).
Prior to going med-free, my cycles lasted 6 to 8 weeks. Since I haven't been taking anything, my cycles have got shorter and shorter. My last cycle lasted 2 1/2 weeks. That's right: ONLY 18 days!!!
I used to get hit a number of times every day. Since being med-free, I RARELY get hit during the day. I could count on one hand the number of KIP7+ hits that occurred during the day in my last cycle.
Also, while taking meds, I was sure I would get hit EVERY night when going into my REM-cycle. After being med-free, I can almost count on getting hit every second night. That means a full-night's sleep every second night. 
While I realize that the med-free route IS NOT for everyone, it has done wonders for my cycles. Of course, the hits seem to be more intense with no abortive to give relief, but I'd rather endure 2 1/2 weeks of 'occasional' hits instead of 6+ weeks of 'regularly occuring' hits.
If my cycles do a '180' and start to get longer, I will consider abortives. (I'm hoping to try O2 during my next cycle. Until now, I've only tried it in ER.)
Any comments? (I have felt in the past that because of the lack of response to my comments, I might as well be talking to the wall.)
grant 
P.S. Because of the shortness of my cycles (even before getting rid of the abortives), I haven't taken ANY preventatives for about 15 years.
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| « Last Edit: Sep 19th, 2003, 6:46am by brain_cramps » |
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JohnM
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Re: episodic meds vs no meds?
« Reply #4 on: Sep 19th, 2003, 8:11am » |
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I have had these things for so long it is hard to remember exactly how I felt way back then 20 or 30 years ago. My wife says I used to get hit really bad many times most days for a few weeks and then it would be ok for another year. I had nothing to help with the pain and lost quite a few days or half days from work. I reckon I got 40 really bad ones during that period.
In recent years since the imgran and the 2-3 month cycle, I get at most 1 a day and some PF days, but still get 40 really bad ones in this period. In other words 3 months of hell, misery and dispair instead of 3 weeks.
It will take some convincing to give up the imigran inj though 
John
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Opus
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Re: episodic meds vs no meds?
« Reply #5 on: Sep 21st, 2003, 5:41pm » |
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Ok Grant, Here are your comments;
Going med free probably will shorten your cycle for some, when I couldn't get meds one time I actually went PF for 3 days bewcouse of the stress. Having meds on hand can reduce stress and that is what the beast likes. But getting hit while taking care of a child aqnd not taking meds is not an option. It wouldn't be a problem if I was alone but then again if I don't hit a would be ten soon enough i will be stuck there for a few hours. As my cycle keeps going on and on I am wondering if I should stop killing the 5's and see if I can make it. It is woyuld be easier if I had a supporter.
Sorry this is a little late.
By the way did you get you burner working?
Opus/Paul
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stevegeebe
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Re: episodic meds vs no meds?
« Reply #6 on: Sep 21st, 2003, 7:20pm » |
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I think this dovetails to you thoughts. I wish I had kept a diary as you have.
In the past five years, or so, I would wait to the point of unbearable before I would see my neuro for meds. I would take them and in about two weeks(+/-) it would go away. We never knew if it was the meds or just the end of the cycle. This was my routine.
She insisted that the next cycle should be met with meds at the beginning. Well we did.
Guess what?...that was April. If I had an ass it would be dragging the ground. I don't know how our chronic friends do it...?
Steve G
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UnsolvedEquation
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Re: episodic meds vs no meds?
« Reply #7 on: Sep 21st, 2003, 10:38pm » |
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Like alot of you have probably heard me say before...I've been chronic now for 3 years. Imitrex injections everyday. Docs seem to think that maybe it was the Imitrex keeping me going for so long...causing rebound clusters. I don't know. But to be honest...I couldn't go through it without meds(imitrex). It would be like pure torture (it already is).
I seen a computer generated video that was overall saying that by NOT treating pain, you are 'exercising pain receptors', which could make future pain > more painful. ??? That would suck, huh !?!!
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surfshi
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Re: episodic meds vs no meds?
« Reply #8 on: Sep 21st, 2003, 11:33pm » |
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HAY UE, YOU HANG IN THEIR AND DO WHAT YOU GOT TO DO, AM HOPING YOUR CYCLE BREAKS...SURF
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JohnM
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Re: episodic meds vs no meds?
« Reply #9 on: Sep 22nd, 2003, 1:45am » |
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Paul/Opus
Your comments about maybe leaving the 5's to sort themselves out really struck home to me about the heart of this post.
When I first got imigran injs the cost was very scary and prohibitive, and I could only get 2 at a time, and so I only used them in an emergency, like if I was at work and had an important meeting or presentation to give, or if I got hit with a 9 or 10 which for me lasts for 3 or 4 hours.
Later, I managed to get listed with my medical insurance for "chronic" medication and started to fill out the max meds all year round, and get as many inj stored away between cycles to tide me over for the next cycle.
Now I had the store, I would take the inj as soon as it reached about a 3 rather than have any major pain for more than 10 minutes.
The first few cycles on imigran I got through on about 4-8 injections per cycle as that was all I could get at the time. In later years I would use about 40 inj per cycle due to my stock piling. I am almost positive the length of the cycle increased because I used more meds, but I still got the about the same number of hits.
I get stressed when I have no imigran. I have been PF for 18 months now and am still stockpiling just in case  as we all know there will probably always be a next time!
John
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rumplestiltskin
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no meds...lots of runaway killers...for however long.
Improper meds...lots of runaway killers...for however long.
meds that work...controlled pain...for however long.
I'm not built to take pain that I can end, especially Cluster pain, and don't....not this boy.
Wage peace
den
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5-string
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Re: episodic meds vs no meds?
« Reply #11 on: Sep 22nd, 2003, 5:54am » |
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I don't care if it makes my cycle longer, I've been on both sides of the med. fence. I will NEVER do this med. free again. NEVER.
I do know that this year has been my longest and worst cycle to date, (Before medication,neuro visit,meeting you fine people,etc..)
within days of taking varipamil my shadows were cut in half. I was able to go back to work. And the Imetrex was unbelievable.
..........I won't go back and you can't make me..........
have a nice day ,
...Mark..
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ClusterChuck
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Re: episodic meds vs no meds?
« Reply #12 on: Sep 22nd, 2003, 6:12am » |
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But, Mark, how do you REALLY feel about this??? haha!!
Chuck
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vig
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Re: episodic meds vs no meds?
« Reply #13 on: Sep 22nd, 2003, 1:13pm » |
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let's see, because of insurance, I went two years with no medication...that was 6 episodes.
I'm pretty sure that's the period when the beast made his greatest overall progress.
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Opus
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Re: episodic meds vs no meds?
« Reply #14 on: Sep 22nd, 2003, 3:17pm » |
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John,
I think that is the case for some , meds increase the cycles, I just realized that I went from 3 months every two years to 3 months on and three months off, now that I am in my 5th month I think my CH is just changing. I am in a 4 right now, if it gets too a 5 I won't be able to make dinner and the other things I need to do. So I will treat it and go one with my night.
In the end the beast can change his habits and hit you when you least expect it. I think my cycles are just changing, less attacks for a longer time period.
Opus/Paul
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BarbaraD
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Re: episodic meds vs no meds?
« Reply #15 on: Sep 22nd, 2003, 4:21pm » |
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My pain tolerence has become extremely high since the onset of CH years ago, but to try to get through a CH without any meds --- not in this lifetime thank you.
I may give birth to tripletts without any antisetic but to try to get through a CH with no med - no thank you.
Sorry but when the demon hits I WANT MY MEDS - I never leave home without them and heaven help anyone who gets in my way when the onset of a HA comes on me. Ask the IRS auditor who didn't move fast enough to suit me when I told him to get me water while I was searching for the right pills in my purse. I think the whole darn office got a lesson in "pain management" that day. One of the ladies in another office had me a glass of water before he could get to the fountain. I'm not a nice person when the pain of CH hits. Other pain I can deal with but not CH.
Sorry, but this girl doesn't suffer unless she has to.
Hugs BD
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brain_cramps
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Re: episodic meds vs no meds?
« Reply #16 on: Sep 24th, 2003, 4:32pm » |
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Don't get me wrong... I'm not 'telling' anyone to go med-free. I was FORCED into going that route by financial/legal problems. I'm merely explaining what I have experienced as far as length and severity of my cycles since being med-free.
NO!!! ---- I'm not a masochist!
grant 
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