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Cluster Cycle Seemed to End and then Start Again (Read 1275 times)
Alicia M.
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Cluster Cycle Seemed to End and then Start Again
Jul 25th, 2012 at 7:09pm
 
Hi everyone,
I have been a cluster headache sufferer for about 10 years now but this is my first time posting here.  I typically get them about every 2 years and they usually last about a month, give or take a week.  I used zomig rapidmelt tablets for most of the last 10 years until I was finally referred to a neurologist this year. For my most recent cycle that I'm in I have oxygen and I did a 10-day prednisone taper starting at 50mg for five days.
I have never had a cycle stop and then start again but that seems to be what is happening right now.  I began my cycle on June 14, 2012 and started the pred  a week later.  While on the pred I continued to get fairly severe headaches while simultaneously feeling like utter shite from the prednisone. It was awful.  Toward the end of the taper I experienced the most painful headaches I've ever had and they were unresponsive to all abortive measures. 
Shortly thereafter, I happened to pick up melatonin at the pharmacy and began taking 10mg before bed as recommended elsewhere on this site.  I saw a rapid tapering off of my headaches beginning a couple of days after finishing the pred and starting the melatonin.   I did not experience any headaches whatsoever for about two weeks (still taking the melatonin, but that's it). 
Suddenly this week I'm right back in cycle again.  This time on the other side of my head (although sometimes on both sides at the same time). 
What gives?  Does anyone have any idea why my headaches might have stopped for two weeks and then returned?  I know this condition is basically totally unpredictable but I was so delighted that they were gone and am now devastated that they are continuing to ruin my summer.  Any insight is greatly appreciated!
Thanks!
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wimsey1
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Re: Cluster Cycle Seemed to End and then Start Again
Reply #1 - Jul 26th, 2012 at 8:26am
 
Welcome Alicia! Sorry you're having visits from our unwanted house guest. And it's a maddening bugger at that. It is both totally predictable and unpredictable at the same time. Predictable in that we often get attacks in "time clusters" at about the same times daily. Unpredictable in that what is effective at preventing or aborting the attacks today (or this cycle) may not be effective tomorrow or the next cycle.

The rapidmelt tabs have helped some people, but for best relief the sumatriptan injections are the best way to go. And usually a pred taper is accompanied by the start of a preventative, like verapamil, or lithium, or topamax, etc. Didn't sound like that for you? Finally, what was your O2 setup? What flow rate, what kind of mask? The right stuff is critical to O2's effectiveness.

Glad you're here, and sorry you need to be. Read a lot, ask questions, and stay strong! blessings. lance
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Bob Johnson
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Re: Cluster Cycle Seemed to End and then Start Again
Reply #2 - Jul 26th, 2012 at 9:16am
 
The starting dose of the Pred taper was a bit low. Might be worth doing it again withs a starting dose of 80mg.

At the same time: start with a preventive med which gives long term protection after the Pred is stopped.

Melatonin is less effective than the other preventives.

Print the PDF file, below, and use it to discuss options with your doc.
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Bob Johnson
 
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japanzaman
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Re: Cluster Cycle Seemed to End and then Start Again
Reply #3 - Jul 26th, 2012 at 10:45am
 
I had the exact same experience when I did a pred taper earlier this year with too small a dosage. Doctors in Japan typically prescribe much smaller dosages to patients, and they started me up at 40mg, tapering off over a week. After two weeks pain free, the beast came roaring back and I finally got my doc to up the dose to 60mg over 15 days. Screwed my complexion up something terrible, but the headaches stopped after the second round of pred.
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metoo
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Re: Cluster Cycle Seemed to End and then Start Again
Reply #4 - Jul 26th, 2012 at 9:36pm
 
Sorry to hear your tale.  Gads, just when we figure that we're on to something significant, the whole thing takes a left turn and we're left wondering "what just happened".

I've always been episodic, but when the cluster ended, it was only days later that it started up again.  No clue as to why. 

I started a daily googledoc to journal my travails.  Boatload of entries.  Just noted one that chronicled a 2.5 day relief where I was thinking....but I was wrong.  I keep reading here to see if something pops up. 

Decent days to you all.  We don't ask much, really.

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#4 - Avoid annoying people who don't deserve it.
 
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