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Topic: Episodics: Longer cycles with Imitrex? (Read 396 times) |
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brain_cramps
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Episodics: Longer cycles with Imitrex?
« on: Oct 29th, 2003, 7:07pm » |
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After reading a post here today, I have a question for any Episodics...
Since you have been taking Imitrex (or any triptan), have your cycles been longer than they were originally?
I noticed someone saying that their cycles were 6 weeks before imitrex and 5 months since.
I realize a lot of you don't remember the pre-trex days.
just curious,
grant 
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| « Last Edit: Oct 29th, 2003, 8:05pm by brain_cramps » |
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Bob_Johnson
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Re: Episodics: Longer cycles?
« Reply #1 on: Oct 29th, 2003, 7:48pm » |
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Just read a medical report a few days ago in which several people reported their cycles were longer after heavy Imitrex use.
The number of cases was so small that it would not be useful to draw any conclusions or make judgments about your own use from this one report.
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brain_cramps
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Re: Episodics: Longer cycles?
« Reply #2 on: Oct 29th, 2003, 8:05pm » |
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The reason(s) I'm asking are
a) the quote i mentioned above. Here it is...
on Oct 29th, 2003, 12:31pm, Boots wrote:...the first 12 years there where no drugs that colud touch them or doc's that knew what they were. the cluster would last 6 weeks and every ha would last for almost 1 hour to the minute,remember those ? since getting trex in the early 90's each cluster now lasts for 5 months but the pain only is 6 minutes and now 2 years between clusters......
...........Bill
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b) since being med-free, my cycles have gone from 6-8 weeks down to 18 days last cycle.
Doesn't anyone else find this interesting?
any comments?
longer cycles? shorter cycles? longer periods between?
any comments at all?
grant
(sorry bill -- not meaning to single you out --- just found your comment a little interesting)
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| « Last Edit: Oct 29th, 2003, 8:06pm by brain_cramps » |
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paul_b
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Re: Episodics: Longer cycles with Imitrex?
« Reply #3 on: Oct 29th, 2003, 8:15pm » |
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didn't notice any change in duration before or after use of Im. I did minimize dosage because I don't like to take meds. Most painful episode I treated with heavy dosage and it did last longer, however, can't say it was related: heavy stress was a factor.
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jonny
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Re: Episodics: Longer cycles with Imitrex?
« Reply #4 on: Oct 29th, 2003, 8:21pm » |
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I find it very interesting Grant.
Although im chronic and never used trex until two years ago I found out that I had three times the HA's while using it, I know many here say that theres no such thing as rebounds....can anyone tell me why when I stop the trex the HA's go back to my normal pattern?
................................jonny
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| « Last Edit: Oct 29th, 2003, 8:22pm by jonny » |
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Joanie
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Re: Episodics: Longer cycles with Imitrex?
« Reply #5 on: Oct 29th, 2003, 8:52pm » |
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Grant, I also find this interesting.
I had the worst cycle ever this year. Normal cycle is 3 months....it was well over 6 months, frequency of attacks as well as the length of each attack increased this year. Was trying to figure out why, but I was taking different meds than I usually do. I also used the trex nasal spray for the first time as well......
Good question...
Joanie
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maria9
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CH is thRe: Episodics: Longer cycles with Imitrex?
« Reply #6 on: Oct 29th, 2003, 9:57pm » |
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Here is something I posted a while ago in the meds section, I have read in the literature about imitrex changing the nature of a cluster cycle, i.e. more headaches, damned if you do, get relief in short order, but then the headaches are back in full force before the normal "scheduled attack."
CH is thought to result from a defect in the hypothalamus which results in a faulty serotonin- regulating mechanism. During a CH cycle, CH-ers tend to have lower levels of serotonin. Lower levels of serotonin cause the vessels to dilate causing the CH pain. Most episodic CH'ers typically have nightly attacks which are triggered by the Rapid Eye Movement (REM) stage of sleep. During REM sleep, the neurotransmitters norepinephrine, serotonin, and histamine stop discharging completely, and the brain activity is dominated by neurons using another chemical acetylcholine. The reason the noreadrenaline and serotonin cease during REM sleep is to disable movement of the body and to reduce awareness of the environment as well as to rest or regenerate their transmitters. While serotonin levels in the brain are practically at zero during REM sleep, having a cluster attack results in an increase in serotonin levels. Sleep deprivation is often a result of cluster headaches at the peak of the cycle as I for one would have a CH every two hours at night, presumably each time just as I was entering the REM stage of sleep. I am assuming I never got to reap the rewards of the benefits of the REM sleep. Interestingly enough, one of the benefits of sleep deprivation is an increase in serotonin levels in the brain. Sleep deprivation has an anti-depressant effect; it mimics the SSRIs causing a net increase in the amount of serotonin available to recipient cells. Given these facts, I hope I have them right, here are my questions:
Is CH a "natural" method (albeit exceedingly cruel!) the hypothalamus uses in order to try to raise levels of serotonin or to restore the serotonin-regulating mechanism? Given that CH's and sleep deprivation both raise levels of serotonin.
There have been several postings here on this board and the UK site that report a longer cycle when put on preventatives such as Verapamil. Although few report 100% success in totally eradicating CH attacks the numbers of attacks lessen. I'm assuming this medicated group is not getting the every 2 hour nightly visit as I was during the peak of the cycle. Do you think interfering with the natural course of the cycle with the peak and resultant sleep deprivation can cause the cycle to take longer than normal to abate?
Since research has also reported that acetylcholine levels are also low in CH'ers, does this mean that during REM sleep when serotonin levels are close to non-existence, that the acetylcholine is not doing it's job in terms of maintaining smooth muscle reactivity, e.g. vessel dilation?
Curious to hear your responses,
Maria
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Re: Episodics: Longer cycles with Imitrex?
« Reply #7 on: Oct 29th, 2003, 10:14pm » |
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on Oct 29th, 2003, 8:21pm, jonny wrote:I find it very interesting Grant.
Although im chronic and never used trex until two years ago I found out that I had three times the HA's while using it, I know many here say that theres no such thing as rebounds....can anyone tell me why when I stop the trex the HA's go back to my normal pattern?
................................jonny |
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Patrick claimed similar experiences to what you describe Jonny. He is episodic.
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Re: Episodics: Longer cycles with Imitrex?
« Reply #8 on: Oct 29th, 2003, 11:35pm » |
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Grant,
I definitely think the trex extends the cycle. When I used to do this med free my cycles were like a month to 6 weeks. I started using the trex in '97 and my cycles have gotten longer each time around.
And yeah Jonny, I'm not convinced either that it doesn't cause rebounds. It seems like the more I use the more I need.
With that being said, the shit works. 
Jim
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Ree
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Re: Episodics: Longer cycles with Imitrex?
« Reply #9 on: Oct 29th, 2003, 11:42pm » |
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HI all... Daves believes this also. When he didnt rely on meds to abort and sort of let the attacks run their course his cycles seemed shorter almost as if the CH has to get to a certain intensity before it would stop.
Something to ponder in this uncertain medical world. We are all but Guinea Pigs anyway... love to you all and goodnight...
ps I said hello to God for all of you tonight and He says Hi back... sleep well... ree
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Patrick_A
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Re: Episodics: Longer cycles with Imitrex?
« Reply #10 on: Oct 30th, 2003, 12:05am » |
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Imitrex causes me to have more CH's and at abnormal times. If i dont take imitrex. I rarely get more than the one a night that wakes me. When i take imitrex, i get numerous CH's a day.
I've argued this topic for 3 years and everyone that argues against it wants to get technical about it. IE...Rebounds!
Call it what ya want, i get more CH's when i take Imitrex!
Also wanted to add, I have worked all 3 shifts in mt 28 years of CH's. When i worked 1st shift, I always got my CH's about 2 hours after i had gotten home from work. 2nd and 3rd shift almost always gave me the CH 1 or 2 hours after i had gone to sleep! But when working the offshifts, i always went straight to bed when i got home. So the 2 hours might all be the same.So i am not so sure that the REM factor is the distinguishing thing here!
Patrick
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| « Last Edit: Oct 30th, 2003, 12:11am by Patrick_A » |
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Re: Episodics: Longer cycles with Imitrex?
« Reply #11 on: Oct 30th, 2003, 8:56am » |
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Grant,
Great question, but i'm not sure.
Past....In the past 25 years of CH's, my cycles usually skip 2 or 3 years then hits in the Fall for a couple weeks and killed by meds or goes away on it's own.
Present....this cycle has lasted 4 or 5 weeks, coincidentallt the first time I have tried Imitrex.
So, there may be some validity to your hypothesis, at least in my case, but then again, it could just be another typical CH coincidence that is just trial and error as a guinea pig. The Verap does take several weeks to kick in and the Pred helped almost immediately, so there is my "coincidence scenario" as for the meds this cycle.
Regardless, Imtrex injections do work for me within 2 minutes. But, I prefer 10 minutes of o2 as it is much safer.
Maria posted something way too intellectual for me, but I am very curious on this type of discussion she writes of. More input from Maria, please, perhaps a thread on this subject matter?
Gregg in Las Vegas
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thomas
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Re: Episodics: Longer cycles with Imitrex?
« Reply #12 on: Oct 30th, 2003, 9:06am » |
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My cycles have been longer, with more frequent attacks while using imitrex as an abortive. I haven't used any this cycle. This cycle has only lasted 3 weeks with only one ch a day. There were 3 days total that I had 2 chs. I've been using melatonin and an ssri and have been pain free for 5 days now. I hope that I don't ever have to use imitrex again.
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Tim_w
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Re: Episodics: Longer cycles with Imitrex?
« Reply #13 on: Oct 30th, 2003, 9:07am » |
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Brain_ cramps
I dont know if it relates to the Trex or not
I used to get CH spring & Fall Started For 3 months
I started taking trex and they went to winter and summer now Iam Chronic
I took trex for 6 years 2 and 3 shots a day
If I take Trex now I get hit more often and harder 
For What its worth!
Timw Happy Pappy
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thomas
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Re: Episodics: Longer cycles with Imitrex?
« Reply #14 on: Oct 30th, 2003, 9:11am » |
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Hmmm... captive audience, needs your drug, using the drug makes you need to take it more often, = big time profits for glaxowelcome.
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maggie_may
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Re: Episodics: Longer cycles with Imitrex?
« Reply #15 on: Oct 30th, 2003, 9:13am » |
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I can't say if it was the Imitrex or not. Last year was the first year I was medicated for my cycle. It was also the longest I've ever had - lasting from mid-October to mid- March.
Then again, I've also noted that my cycles were lengthening anyway while not medicated.
I'm considering myself lucky so far this year - only had one real CH at about a K7 and the rest of the time minor shadows that I can sort of deal with without meds.
maggie
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ozzman
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Re: Episodics: Longer cycles with Imitrex?
« Reply #16 on: Oct 30th, 2003, 9:24am » |
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Great post Grant and Maria,
I'll try to answer both questions.
First Maria and Verapamil,
This is my second cycle this year with only 2 months of pain free time in between. First time in my life that I get two so close together. This secon cycle has been 3 or 4 months long so far and as soon as I felt it coming, I started ramping up on verapamil (80mg,160,240,320) I upped the daily dose when I had breakthrough CHs. Last week I figured this has been long enough so I decided to ramp down very slowly only a couple breakthrough CHs, nothing bad, no different than when I was at 320mg a day. Last two days i only had 240mg and boom got hit 5 times within 24 hours and each one increased in intensity. Long answer to a short question, Verapamil definitely lengthens the cycle, it did early this year and it is doing it now. However I am relatively pain free when on it. Maybe only 1 CH every 3 or 4 days and that only at a Kip4-5.
As far as trex, I'm not sure if it is the Trex or maybe even prednisone. As a matter of fact, now that I think about it, I have written down that as soon as I started on the prednisone, the pattern became erratic, couldn't set my watch to it anymore LOL
With all that said. Are preventatives worth it for episodics? Long mild to moderate cycle or short horrendous cycle
Ozzy
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Melissa
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Re: Episodics: Longer cycles with Imitrex?
« Reply #17 on: Oct 30th, 2003, 9:47am » |
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This year was the first for me medicated. Taking 250mg Depakote, 6mg Imitrex shots, and aleve for shadows. I had little change in my cycle duration. It was actually like 3-5 days shorter. 
 mel
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| « Last Edit: Oct 30th, 2003, 9:48am by Melissa » |
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Boots
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Re: Episodics: Longer cycles with Imitrex?
« Reply #18 on: Oct 30th, 2003, 11:31am » |
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I'm glad to of started a good topic here.When I first used trex I thought for sure that the cluster would last for the same 6 weeks,but when 3 months passed I was back to the Doc. His reply was it is not unusual for these ha's to change patterns...After 12 years of the same?
Well the Doc is the 1 that went to college not me.I would get hit at the same time every day and only 1 a day, untill I started using trex,now the only ha I can count on is the 1 I get an hour and a half after giong to sleep plus 4,5,6 ha's in a 24 hour period using 36 mg of trex,rebounds? yea I think so
-----------Bill
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Re: Episodics: Longer cycles with Imitrex?
« Reply #19 on: Oct 30th, 2003, 1:48pm » |
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I agree with what Ree said here. Mike's cycles have always been longer when meds have been involved. I can't pinpoint it to Imitrex though, because he's done a few cycles without it. This last one, however, he did use the nasal spray, pred burst, verap and lith combo and had his longest cycle ever, 6 months. Unmedicated cycle prior to that, using only oxygen as an abortive was 2 - 3 months.
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Re: Episodics: Longer cycles with Imitrex?
« Reply #20 on: Oct 31st, 2003, 11:28am » |
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Re: Episodics: Longer cycles with Imitrex?
« Reply #21 on: Oct 31st, 2003, 12:10pm » |
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Although I am chronic...I believe the more Trex I use, the more attacks I will get (and more severe)...but it's one of the only things that has helped me so far. TGFI
I don't leave home without it !
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miCHel
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Re: Episodics: Longer cycles with Imitrex?
« Reply #22 on: Oct 31st, 2003, 3:44pm » |
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Funny you should ask Mr. Grant...
I started using Trex regularly (very regularly) during my last cycle and it did last a few weeks more than what I usually get.
But it's the only thing that has worked that well for me so far. If the situation doesn't deteriorate, you can be sure I will continue to be a very good Glaxo customer 
By the way, does anyone know when a "generic" Trex will be made available to the public (and is it the same timeline in the US as it is in Canada)? It's not me who wants to know, it's my banker...
miCHel
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Re: Episodics: Longer cycles with Imitrex?
« Reply #23 on: Nov 9th, 2003, 8:22am » |
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Maria,
There are some chicken-egg issues. You said "CH is thought to result from a defect in the hypothalamus which results in a faulty serotonin- regulating mechanism." I am not sure if the hypothalamus causes the change in the serotonin, or is a victim of it. Serotonin is produced in many tissues across the body (the biggest source is the gut). The fact that few people report improvement from SSRI drugs (which would be active in they hypothalamus) might be relevant. 5htp and triptans are useful, but they are increasing serotonin activity in many places where an SSRI does not.
The serotonin disregulation is not just in cycle - the melatonin daily cycles in normal people show a definite peak associated with sleep. In CH sufferers, this peak is abnormally flat even when the beast is absent (melatonin is produced from serotonin in the pineal gland). It could be that the pineal gland is lazy or is not getting the signal to produce melatonin, or maybe there is not enough serotonin to do so. I think melatonin has proven itself useful (but certainly not a cure all) might indicate that restoring REM can reduce CH.
My gut feeling is that sleep deprivation does not make things better - it is a cause of the disease or a side effect, not an attempt to restore balance. For me, sleep deprivation is a trigger. My worst years, and my years that started earliest, were years where I had sleep deprivation in the spring and early summer due to school or work related midnight oil burning. Even when I haven't induced sleep deprivation, I find myself waking up earlier and earlier in the weeks before I get visited. At first, I thought it was good - "I'm so healthy that I don't need as much sleep, and I feel great!" Then BAM! and the headaches start.
To totally disagree with myself, it should be noted that olanzapine has been shown effective in treating CH (one small trial, but very promising). A separate study (on non CH people) found that olanzapine reduced REM and increased short wave sleep. The presumed mechanism was a blockade of 5-HT(2C) serotonin receptors. The olanzapine was used as an abortive, so it may not have changed sleep immediately, but this does fit in with your theory.
Here's a link to the "uberman sleep regimen" - which is involves limiting sleep to about 3 hours per day (several short naps). Thomas Edison and Buckminster Fuller were reportedly in this pattern. With this type of sleep deprivation, people go into REM almost immediately on falling asleep. I'm not reccomending the method (I find the thought of it terrifying) but it is food for thought.
http://www.kuro5hin.org/story/2002/4/15/103358/720
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