All - first want to thank all those who have posted here through the years.  Been a valuable additional source of information reading through the past posts and discussions.  I complete my Pred taper in the morrow - will stay on the Verapamil @ 340 mg/day dosage (I upped my dosage a bit based on how I was feeling - will let the NP know later I did it).  Also taking 10000 D3 split in morning and afternoon dosages.  Stocked with Imitrex and well....

I am getting confident that this cycle is about over.  Head feels much clearer - no shadows at all.  No lingering normal headaches.  If I do get a visit from a CH - it comes on quick, and goes away quick with a shot.  Have been pain free for almost 48 hours.  Like I said - will be off the Pred after tomorrow.  Even better - the crunch time on the project I am working on is just about over as well.  So, all the stars seem to be aligning to allow me a painfree summer of golf and leisure.

My concern - and my request for advice - is what to do now.  I will always be hopefull that my last cycle was truely my LAST cycle - but am wise enough to know that is not the case.  Have already recovered enough to start forgetting how bad the attacks really are - I think many know what I mean - which is you tend to forget how hard life is during a cycle when you are in your pain free periods (or at least I do).  So this time I do not want to repeat my past mistakes.  Obviously I will stock up on my Imetrix injections.  Will also try to get my NP to give me a refill of Prednizone for a taper so I can repeat that routine if/when the beast returns.  Will continue on the D3 (getting a blood test in the next week or so - will be interesting to see what the results are).  But what cannot decide is how long to stay on the verapamil.  My desire would be to taper off it sooner rather than later - both because I do not yet need blood pressure med's, and because I do not want to lose the effectiveness of the drug regarding CH's.  Seems like many of you have had success with a given treatment for long periods of time and then - damn - it stops working, or stops working as well.  I would like to postpone that as long as possible.

On the other hand - I suppose it is possible that if I continued on the Verapamil long term, they will never come back. 

So - my question is, what do you long term (or others) suffers think.  Stay the course or taper off.  If taper off - how long till you would start.  I read some earlier posts that indicated 2 weeks pain free.  FYI - I would expect my next cycle to start sometime around Halloween - though in my case the beast is not nearly as predictable as in many of you.

Again - thanks to all who made this site and keep it going, and thanks in advance for your replies.  My name is Tom - and I live in Longview Washington if any of you are curious.  Also - I am a Chemical Engineer (Go Beav's) by training if that is of any importance.

Quote:

Obviously I will stock up on my Imetrix injections.

You do realize that the vast majority here feel that triptans such as Imitrex cause rebound attacks, and that by treating one attack causes the next, resulting in an ever downward spiral of treating one headache that was caused by the treatment of the last, etc., etc....

I call it the trex merry-go-round. I got caught up in it again this spring because I was traveling on business and away from my busting materials.

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Yes I have read that - but in my own experience (with many a trial) I really can't make up my mind.  I would side on some amount of rebounds occuring - but still worth the shot.  I have researched Imetrix as best as I think possible and have reached the conclusion that if you tolerate it well there is no need to follow the 12 mg per 24 hour rule - so my conclusion is  - if ya got'em, use em.

Also - most of what I may or may not have called rebounds occured right at the peak of my cycles, so I think regardless of how much I took - 4 to 5 headaches were on the menu. 

Anyway - seems like most of you are set up with O2, so you can resort to that (which when I did use it at 15ml - absolutely caused me rebounds).  Right now I am not set up for O2.  Will be if/when the next cycle comes up.

Thanks for the reply - but just like my beer and my morning cigarettes - I shall never give up my 'trex.

To each his own. It's one of those lessons that we all learn in our own time.

If at some point you are ready to make the leap, I highly recommend getting off the merry-go-round and busting your way to months and months of pain-free time. Had I not been traveling on business and away from my stash, I could have reported to you that I have now been pain free for two and a half years. But there was that horrid six-week interruption a couple of months ago - where I was reminded once again what a shitstorm it can be trying to manage this thing with mainstream pharmaceuticals.

Good luck.

Tom, I've been around here starting just a few months after DJ opened up. Years of reading folks' experiences plus digging around the medical literature have made it clear to me that any time you hear folks talking in absolute terms, the caution flag should go up.

It's not unusual for a treatment program to work for a time and then collapse. The whys are not known, although such an experience gives one an open door to introduce any guess/bias/maybe which explains the experience. What years of experience here suggests: use the program which works; be prepared to start looking for a new mix, should that become necessary. Blaming and cursing the darkness only blocks the way.

Re. Verap: some years ago it was common for people with rather short cycles to stay on it 100% of the time. There were no reports that this may have created a tolerance reaction + diminished effectiveness. Many folks have found it helpful to increase dosing over time--but the why is ??? (Again, the open door for your guess/bias.) But there is no evidence that it will harm you. Basically, this is a blood pressure med and many of us stay on this class of meds for decades, for BP control, with no problems. As with so much in medicine, we can raise interesting questions, whereas the answers are often lacking.

Re. Imitrex: is the problem true rebound or recurrence?
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Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
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Sumatriptan has a hard initial punch and relatively short effective life--a combination which works well for most Cluster attacks. However, some people, whose Clusters have a longer life, find that the med is wearing down even as the pain continues. One can understand how this sequence comes into one's thinking: Attack, Imitrex injection, pain continues, it's a rebound cluster which has developed from the Imitrex. In fact, this is a recurrence of the attack, not a rebound.

This is one of the reasons that several other triptans were developed having less initial punch but longer effective life. While aimed at the migraine crowd, at first, a number of cluster users have found this characteristic of value to them.
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There is emerging agreement that a true reboud is posisble but not predictable. When suspected: stop using the abortive and see what happens. If the headache pattern changes, that suggests the abortive has been the problem--then start a new one (likely different class ofmed). But absolute statements?

I've got more saved materials on this topic than any other single on around Cluster--and no final "truth".
--

Sumatriptan & Rebound headaches (In Medications, Treatment and Therapies)
Dec 12th, 2009 at 9:35am       There has been an increasing declaration in some of the messages here that, "Imitrex/sumatriptan causes rebound headaches."

Sometime ago the caution was, "it can cause rebound", a statement which was consistent with what is found in the medical literature.

"Imitrex causes..." is both a misstatement and--my concern in writing--it scares people away from using the most effective abortive we have. A tendency to puff up statements/claims, etc. in very common in communication but I'm urging care/caution when we are offering assistance to vulnerable folks who are seeking our help.

I've just spent a hour searching medical literature sites and it's striking just how very limited are any studies/reports/warnings about side effects with sumatriptan. I found this one definitive statement from 2003. Please note two facts: the vulnerable age and the low rate of rebound:

"Medication-Overuse Seen as Epidemic, First Management Guidelines Issued: Presented at IHC "
By Larry Schuster ROME, ITALY -- September 25, 2003 -- 

The prevalence was highest in respondents who were their 50s, with 5% of women fulfilling the criteria. Thirty five percent overused simple analgesics, 22% ergotics, 12.5% opioids, 2.7% triptans, and 27% overused combinations of drug classes."
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How to survive for the long haul?
1.. Trusted doc
2. a program which works for you
3. when the cycle is passed, enjoy life but don't brood about when the next cycle. What the psychologist calls "ancticpatory anxiety" messes up your emotions and does get you any control/safety.
4. At least explore:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Which is why I clearly stated, "...the vast majority here feel that triptans such as Imitrex cause rebound attacks."

Not that they do.

Thanks to both for the responses. 

Brew -I have no problem with the buster approach.  In my younger day's I enjoyed the ride for reasons other than pain - and from what I read, many people don't even take enough to get the ride - which I remember as being a very pleasant experience.  Main reason - I suspect it will show up in drug tests, and that is a risk I cannot take until my working days are done.  Heck - when I read some older posts talking about X being a great cure it actually made me smile.  I tried it before it was illegal and enjoyed that even more.  But - alas, the carefree days were long ago, and life and responsibilities take precedence over fun, and - if need be - over pain.  But as everyone seems to agree, if it works - God bless it.

Bob -

I was hoping for a response from you - and I totally agree that your hypothesis is strong.  The 1/2 life of Imetrix injections is around 2 1/2 hours if my memory serves.  I have had severe attacks that have lasted over 3 hours.  I have also had back to back attacks seperated by less than two hours - so is it a rebound, or is it the same one or is it a new one??  What I have NEVER (and I hope it stays that way) experienced is a time when the injection didn't work.  If I wait to long due to trying to conserve injections - it may take a few minutes longer to work, but it has always done the job.  Which is all I can ask.  I think the same thing applies with O2 - but as I said, it never really worked for me (and boy was I bummed) - but I think I will be in a much better place to try it next time as I have access to welder supplied O2 without any issues.  Just got to get the gear.  Would have tried it this cycle but have been working 14 hour days 6 days a week for most of this one - so burned through $1400 worth of trex instead.

Again - thanks for your help.  I will continue on the calcium channel blocker for at least 6 months, but I think I will try to taper it off at some point if I remain pain free.  Every hour that goes by I am more convinced this one is busted - no shadows, clear head, no bulging veins and my energy level is much higher (which - I am inclined to give credit to the D3.  I am a pale white scott who probably has a negative concentration in my blood stream).

Wish you both the best - will try to stay in touch with the board.  I had found many of the same studies and information that has been shared here via google searches and buying a couple of research papers, but reading how individuals react - both symptoms, effects and theories has proved invaluable.  Thanks for you guys sticking with this site - I see that OUCH has folded.  I hope that it is not because you are always battling the beast - but more a desire to share.  Either way - good luck in the future.