On Thursday Johnny forgot to toke his verapamil until later in the day, no headache until about an hour after he took it, this also happened on Friday, he is beginning to believe that the vera is prolonging this cycle.  He has always had cycles that lasted only about two weeks this cycle has been going on since mid May, any ideas or has anyone else experienced this?

I don't use verapamil so I can't help you there. I will tell you one of the most frustrating aspects of the beast is his ability to constantly morph. Figuring cause and effect can be such a challenge. Did the meds extend it? Did the cycle just morph?

Joe

I agree with you Joe, it difficult to find the patterns and the cause and effect as the beast can change himself.  Johnny is just so frustrated as this cycle has kept him from working, and he is not a slacker by any means.  he is being a bit hard on himself because he feels that he is not contributing his part to the family.  I keep reassuring him that everything is okay and just focus on getting well.

It's too easy to assume too much based on one experience in a test animal (us) where variability is the norm.

Don't be impulsive in making decisions about the treatment plan.

I too went from having periodic cycles and out of the blue the condition worsened. Now I'm chronic.

My attacks would only occur in the summer time and go away for the remainder of the year. Three years ago, they came in the summer and never left.

I do believe there are certain medications which are common amongst CH'ers that prolong cycles, but I don't think missing a dose of verapamil will do it. From personal experience, most abortives brought about an increase in rebound HA's.

The Verapamil 240mg tablets (time release) never worked for me, and I've been on and off Verapamil since being diagnosed in 05. I was up to 480mg in am and 720pm.

I stopped taking Verapamil a year ago and started Batch's regimen. I didn't notice any benefits from taking the daily dosages of D3 for a long period of time, and began taking Verpamil 80mg tablets 4x a day along with the D3. There are less side effects taking the smaller dosage of Verapamil, and two days after taking it my cycle had ended.  I am currently taking 80mg of Verapamil 4x daily, while making sure my D3 level stays within the therapeutic range. 

This is my first remission since 2009, it could be the D3, the change in dosage of Verapamil, both or just the end of a long and brutal cycle.

There will always be something in the air that raises the question as to what we all might be doing that is prolonging these cycles, but Verapamil has helped many, and it might be a possibility that an adjustment in the dosage will do the trick.

Good luck.

Evan

EVAN:

Your last comment captures the dilemma of: A. how to evaluate changes in our cluster situation, B. the meaning of relationships—if any—between 2 or more events. Here, talking about changes in the use, frequency, dose and the effect of adding a second  med or treatment OR some combination of all these variables.

A major player in this picture is our mind’s operations. We are motivated to explain/understand important events. It’s ease to quickly link two or more events and to assume we have a correct explanation for our concern. The next step: hold onto the explanation and lose sight of how weak our evidence often is.

Changing important beliefs is hard—because they are important to us—and this, most especially, when the data are soft, e.g., politics & religion.

Simply put, in your situation, making meds changes, dosing, frequency, etc. introduces more variables than can be evualted re.the end results.

Confounding your issue: is the issue recurrence of an attack or a rebound attack? Or, as you suggest, the ending of a cycle? Add, the absence of evidence that Verapamil causes rebound and the mixed evidence that Imitrex consistently causes rebound.
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(First posted a few years ago.)
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.

Bob:

My post was not based on an assumption that I have the answer. I was providing my own experience as a result of missing a dose of verapamil. My post in no way provided a solution, but a possibility that an adjustment in medication might do the trick. I used Imitrex injections up to 5 times a day for three years straight. Imitrex saved my life, has been the fastest acting abortive that I've used to date, and was the only drug [pre 02] that enabled me to have some sort of a life. I still believe it made the condition worse.

The fact that I believe triptans may cause rebounds is also not unfounded. There is as much literature linking the overuse of medications which provide symptomatic relief with an increase in frequency of attacks, as there are articles suggesting the existence of "recurrence" and non existence of "rebound." The truth is, there is little to no evidence to support either view. All we have to rely on is the sharing of our own experiences.

You can take a look at an article written as late as March 4, 2012 by Dr. Alexander Muskaup at the New York Headache Center regarding the number of neurologists that believe the abuse of triptans makes cluster headaches worse. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

"Daily Sumatriptan for Detoxification From Rebound" Peggy Drucker, Stewart Tepper, MD discusses it as well.

Based on the premise that the overuse of these meds likely cause rebounds, several headache institutions have administered dihyderoergotamine intravenously to detoxify the body from the consistent use of sumatriptan to restore the episodic pattern in chronic sufferers. An in patient DHE infusion was recommended to me in the past for the above reasons.

Evan: sorry that my writing style came across as a accusation or declaration about rebound with triptans, etc. Read it as an overview statement vs. your specific use/conclusions.

I, too, have reports about he potential for rebound with triptans. The medical position has clearly changed over the years to admit the possibility. But stuff I have suggests the rate of rebound is quite low compared to OTC pain meds.

At the core of my comments is a concern--of importance on this site--is how readily folks leap to conclusions about the impact of a med, changes in symptoms/response, etc. In the years I've been around here I've come to the conclusion that misuse (broadly defined) of meds is a greater problem than the actual side effects of the meds themselves. 

Bob:

I totally agree that misuse is a greater problem than the side effects themselves. As an "imitrex junkie" my form of misuse was overuse, and believe my overuse prolonged the cycle.  I guess time will tell if our misuse can induce a chronic state.

No apology necessary Bob. I wasn't insulted, I just wanted to make it clear that I was not presenting a solution, but rather an approach from personal experience which I found relevant to this topic.

Thanks for your feedback

It's useful to be confronted with challenges to our "expertise" <bg>. 

I had to catch my breath after reading:

Headache. 2011 Nov;51(10):1546-8.
Sumatriptan in excessive doses over 15 years in a patient with chronic cluster headache.
Kallweit U, Sándor PS.
SourceFrom the Department of Neurology, University Hospital Zurich, Zurich, Switzerland (U. Kallweit and P.S. Sándor); Department of Neurology, Kamillus-Klinik, Asbach/Ww., Germany (U. Kallweit); Department of Neurology, ANNR RehaClinic Cantonal Hospital, Baden, Switzerland (P.S. Sándor).

Abstract
We report the case of a 49-year-old lady with cluster headache, who had received sumatriptan s.c. treatment for 15 years with daily dosages between 12 and 222 mg (average of 150 mg during the last year). The therapy was successful in aborting CH attacks. Long-term overdosage of sumatriptan was well tolerated, without adverse events.

© 2011 American Headache Society.

PMID:22082424[PubMed]

D. Gaist J. Hallas. S.H. Sindrup Department of Clinical Pharmacology, IMB. Odense University Denmark
Overuse of Sumatriptan a problem?
Eur J Clin Pharmacol (1996) 50: 161-165

An older report but a population based study to consider:

Introduction.  ...It is generally recommended not to exceed a maximum repeated use of... 2 subcutaneous injections of 6 mg daily, if the attack recurs within 24 hours[1] ... Heavy use, clearly exceeding the recommended doses has, however, been reported in single patients [3-5]... Rebound headache caused by sumatriptan has been suggested as the underlying mechanism leading to daily use of the drug.

Bob Johnson wrote on Jul 22^nd, 2012 at 3:18pm:

Abstract We report the case of a 49-year-old lady with cluster headache, who had received sumatriptan s.c. treatment for 15 years with daily dosages between 12 and 222 mg (average of 150 mg during the last year). The therapy was successful in aborting CH attacks. Long-term overdosage of sumatriptan was well tolerated, without adverse events.

Wow, assuming she is using 6mg a time, that is between 2 and 37 injections a day with an average of 25 a day! That is one incredible amount, never mind the cost!

I wonder if she has ever tried oxygen to abort?

Doesn't look like she had time for 02 at the rate she was doing it. Incredible.