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Topic: Q for episodics: mini-cycle or false-cycle? [long] (Read 413 times) |
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Major_Headcase
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Q for episodics: mini-cycle or false-cycle? [long]
« on: Oct 22nd, 2004, 12:27pm » |
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My current cycle, if it can even be called a cycle, has been so mild that I'd call it a "mini-cycle" ... or maybe even a false cycle. This is only my 5th cycle, the others have been much worse, & getting a really mild cycle has me feeling both paranoid and hopeful. Have other episodics had a mild cycle, or a round of CH so low in intensity you questioned if it was really a cycle or not? Was it really a cycle or just a preview of a real cycle in the near future?
Background: my last cycle was about 18 months ago, prior to that my cycles were pretty regular at about 10-12 months (last year I had oral surgery under a general anesthetic about two months before my usual CH time, some have suggested that may have aborted that year's attack?). I've gotten good results with "Svenn's Cocktail" regimen of Prednisone and Verapamil and am using that recipe again this time. I have high blood pressure to boot so after my last cycle my doc kept me on Verapamil year round (240mg/day) to keep my BP down AND to act as a prophylactic against CH.
SO, about three weeks ago I got hit "for sure" for a few days in a row after about a week of shadows (& denial). Low intensity and pain, only about a 5-6 on the KIP scale, but no mistaking the Beast. I get in to see my doc pdq and he ups my Verapamil to 720mg/day with a Prednisone blast starting at 50mg/day then tapering slowly 5 mg less every 5 days. Within a few days my symptoms pretty much disappeared ... in the last three weeks I've only had a couple of nights of super low grade CH (1-3 kip, hardly enough to classify as CH except for the usual telltale signs), and these passed within an hour.
Being a "paranoid/optimist" I think ... "This can't really be a cycle, it's too mild! I'm gonna get hit again in the next month or so" AND/OR "Hmm, maybe being on 240mg/day Verapamil 24/7/365 reduced the time it usually takes (7-10 days) for the Verapamil to kick in?" To complicate the picture more, I've been dealing with a herniated vertabral disk in my neck (C5-6) and had been given a 7 day Prednisone blast about a 6 weeks before the CH's started. Maybe this "pre-dose" of Prednisone combined with a "running head start" on the Verapamil has decreased my cycle to this low a level? Or maybe the Beast is just teasing me and is saving up for a real cycle in the near future?
Do episodics' cycles sometimes taper off in intensity over time? I guess my question is if anybody else has had "false mini-cycles" and should I be paranoid about a "real" cycle coming soon, or is there a reasonable basis for hoping that my cycles are getting lighter? Or does the Beast just get sloppy some years, let up some, and then return full force next cycle? Anybody else have something like this? I'm certainly counting my blessings for the time being, but curious about "what's next".
-John 
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kcorrigan
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #1 on: Oct 22nd, 2004, 12:36pm » |
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I think that one's hard to say for sure. My cycles tend to be more severe each time, changing over the years in intensity and location/type of pain.
This cycle is hopefully tapering off now due to my current treatment. This is the first day in almost 2 weeks that I've not had an attack.
When mine start, I have what you are describing for a good week or so. They are more spuradic until the end of the 2nd week when they definitely get stronger, are more difficult to treat, and are longer in duration.
I think that you just need to hang in there, brace yourself for the worst, but certainly hope for the best.
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Katie Corrigan
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vig
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #2 on: Oct 22nd, 2004, 12:43pm » |
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I started with Fall and Spring cycles. As they grew longer and more severe, Summer and Winter cycles started. They were mild and shorter, maybe what you're calling a mini-cycle or a false cycle.
After a few more years, they all sort of blurred together, into what's called Episodically CHronic.
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Valerie
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #3 on: Oct 22nd, 2004, 1:21pm » |
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Sounds to me like the preventative meds are working for you. My cycles definitely have a pattern where they start mild, build up, then become mild again. I am hopefully at the end of the cycle. Unfortunately with these things, they always change and seem to find away around the meds and treatments. I truly hope it doesn't get worse for you, it's just so hard to say what will happen - I've been dealing with these for 24 years 
Hang in there!
Valerie
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BlueMeanie
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #4 on: Oct 22nd, 2004, 2:00pm » |
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on Oct 22nd, 2004, 12:27pm, Major_Headcase wrote:should I be paranoid about a "real" cycle coming soon, or is there a reasonable basis for hoping that my cycles are getting lighter? Or does the Beast just get sloppy some years, let up some, and then return full force next cycle? Anybody else have something like this? I'm certainly counting my blessings for the time being, but curious about "what's next".
-John |
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My experience is every cycle is a little different as to the length. Some shorter, some longer. I have had mini cycles if you want to call them that. As right now i have been shadowing for a month, but no real hits. I don't concider it a cycle though. Once I get a bigtime hit is when the fun begins.
Hope the Beast leaves ya alone this time around.
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Kevin_M
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #5 on: Oct 22nd, 2004, 2:35pm » |
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Never had a 'light' cycle myself Major H, all have been full tilt boogie. Lots of shadowing sometimes after a cycle, nothing to grab a trex for though.
Starting a cycle can be ambiguous, get hit a couple times, then nothing, another couple hits, then nothing. It eventually comes around though to the full monty. No light cycles though.
Kevin M
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| « Last Edit: Oct 22nd, 2004, 2:36pm by Kevin_M » |
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Major_Headcase
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #6 on: Oct 22nd, 2004, 3:33pm » |
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on Oct 22nd, 2004, 12:36pm, kcorrigan wrote:| I think that you just need to hang in there, brace yourself for the worst, but certainly hope for the best. |
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Thanks Katie, pretty good advice; especially since from the other comments it sounds like cycles come in all shapes and sizes and are not necessarily predictable.
I'll keep thanking the Big Guy Upstairs (or Gal if you prefer) for letting me have a 'CH-Lite' cycle - so far ... and keep my fingers crossed it doesn't come back and bite me on the ass, er ... left eye socket, next week! I suppose, given the nature of the Beast, that it's probably safer to assume the worst is always possible rather than be disappointed by presuming the best ... and yet be grateful for any CH-Lite cycles that are as mild as this one. At least I was through the worst of my blown disk pain before this cycle started ... I know there are some folks on here that have chronic CH AND major league disk problems at the same time ... Ugh! My heart and prayers go out to those people; I 'can' imagine their pain and it scares the crap out of me. I've had one disk fusion in my neck (10 years ago next January), and the just the thought of being "in cycle" AND having another neck surgery at the same turns me into a groveling basket case sissyboy.
Thanks for all the responses!
-John
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| « Last Edit: Oct 22nd, 2004, 3:38pm by Major_Headcase » |
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BobG
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #7 on: Oct 23rd, 2004, 3:49pm » |
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Quote:| Have other episodics had a mild cycle, or a round of CH so low in intensity you questioned if it was really a cycle or not? |
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Yes. Each year for the last 4 years I've gone through cycles of low grade cluster headaches. Each cycle lasted about 4 to 6 weeks. Shadows up to about Kip 4-5 every day and one or 2 Kip 7-8's a week. This year I went through a minor cycle last March and am currently in one now. Mostly just irritating as hell but enough to say "Don't take a nap or I'll get ya!"
I'm 57 now and have had these things for 30 years. Maybe I'm out-growing them.....hell, I don't know.
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Kris_in_SJ
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Re: Q for episodics: mini-cycle or false-cycle? [l
« Reply #8 on: Oct 23rd, 2004, 8:33pm » |
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I would be willing to guess that staying on Verapamil at 240mg/day helped to make this cycle much more mild, especially once the dose was ramped up.
I found that my last cycle was a little milder. I also have hypertension and stayed on Verap since that last time at 120mg/day. When the latest cycle hit, I ramped up to 480/day and started Prednisone taper. End result - a 3-4 week cycle instead of 2 months.
Just guessing, of course. Right now I'm weaning back down on the Verap to 120/day and adding a second B/P drug. I'm reluctant to stay on too much Verap because I'm afraid it will get less successful with future cycles. I'm probably full of crap, but worry a little about drug tolerance and someday having my miracle preventative stop working.
PFDAN to You!
Kris
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