Hello my Friends at CH.com,

I last posted in summer 2009.  I was expecting a cycle to start, and under the care of a new (for me) doctor, took verapamil (320 mg per day) to hopefully prevent the cycle.  This seemed to work for about 7 weeks, but some odd side effects of the verap encouraged me to taper off.  My CH cycle is usually ~4 weeks, and we were well beyond that.  So over another 2 weeks taper, verapamil was done.

Then 3 weeks later, The Beast struck.  I went back on verapamil, plus prednisone taper, plus O2 to abort.  (I am 100% sold on O2!! First time in 2009.)Attacks went on for 16 days and then stopped (verapamil kicked in, I guess).  I stayed on the verapamil another 4 weeks, then a slow taper over another 4 weeks, and all was done by mid November.

Then at the very end of 2009 a few HAs appeared - sporadic, short, low to mid KIP stuff.  This past weekend these became regular, no-fooling, CH attacks.  Started the verapamil again today, O2 tank expected later today, appt to see Dr. tomorrow.

Now here is what has me REALLY spooked...
For many years my cycles have been very regular: ~1 month in CH cycle, then ~21 months remission (ahhh) before next cycle.  This new cycle comes 3 months after the last ended.  Yikes!  I was warned by this forum that cycles can change, particularly when you "mess with The Beast". 

It seems that in July-August, the verapamil warded off the expected cycle, but then the CH cycle starts a few weeks after verap is done.  Then in September-October the verap conquers The Beast, but a few months later it's back.

Any advice?

Fox

Hey Fox, like you my cycles come at fairly regular intervals (4-5 week cycle every 24-26 months for the past 20 years).  I was expecting a cycle last December, so at the first sign of a shadow I went to the neuro to get my pred and verapamil.  I don't like to start the meds until I know a cycle has started so I usually wait until the first or second real hit before starting the pred - well, a funny thing happened...my cycle didn't come as expected and actually just started a few weeks ago (34 months after my last cycle). 

I guess the advice I'd offer is that it's possible to get shadows off cycle, and for our cycles to shift somewhat, so I'd always recommend not starting any meds until you are SURE you're in a cycle.  Sometimes we get so conditioned by the the past that we forget how unpredictable the beast can be. 

Good luck

Judge Smails,

It would have been wise last summer to wait until the cycle start was verified by an attack or 2.  I don't get pre-cycle warning shadows.  I prefer to jump right into it   Anyway, with the tight regularity of my cycle, due to start in about a week, my Dr. suggested to start verapamil pronto.  Sounded good to me.  And it worked... or didn't it?

When the Beast struck in September, one bona fide attack (with no prior shadows) sent me back to the Dr. and back on the meds.  Twas a cycle indeed.

Now let me correct that statement I made about not getting pre-cycle shadows.  It seems for the first time I have - those HAs in late December were not CH attacks, but were harbingers of what started 6 days ago with the full-blown attacks.  Denial is a powerful force, so is dread, so is the belief that I get 21 months remission.  I could not believe it was back so soon.

Live and learn.

Fox

Monika,

There are several threads that talk about how the different meds that are prescribed seem to alter the cluster headache experience. Most of this information is anecdotal, but since the anecdotes are from peeps here I tend to accept their veracity.

If you and your brother are concerned spend some serious time on this board looking at all the verap threads and find more answers. I don't take it myself and personally avoid the whole preventative aspect of treatment - opting to have a solid abortive strategy. I watched my father's side effects from the various meds when he went through the worst period of his CH and have just never wanted to cross that line.

That being said, even the abortive strategy has altered my cycle. The use of imitrex injections (my last line of defense), in my opinion, has lengthened my cycle. I can't clinically say that this occurs and I can't say that possibly age makes the cycles longer but the coinciding use of imitrex has altered my cycles. In my case I've been willing to accept the trade off. That's a decision point that everyone needs to come to - but arm yourselves with the information to do so. In the end, if the injection is in the other room and the CH is ramping up past a kip-6, and the O2 didn't work this time, sometimes all the side-effect info doesn't mean a hill of beans to the snap and sting of that auto-injector.....

Scott

Monika,
You should most definitely not assume that verapamil, or any other med you discuss with us here, will have the same effects on your brother.

Many of us have been on ch.com for a rather long time, and we tend to forget to add our disclaimer to our personal tales of experience;  that disclaimer is to ALWAYS talk with your doctor or health care professional before changing anything about your medications.

Fox, I don't know if verap would cause this kind of behavior or not, since I am pretty significantly hypOtensive and was never able to get beyond 240mg without passing out.

Many here have used a verap and lithium combo as a preventative strategy and that works well for them, and of those, many had to go that route when just verap either didn't work to begin with, or stopped working as it had been.  Something you may wish to talk with the doc about.

In your other thread you mention Dr. Sheftell, and I know him myself.  I would strongly suggest that you relate your information to him and discuss the alternatives or how to proceed from this point with him.  He's certainly one of the Dr's that truly KNOWS about CH and was always open to new information and discussing different ways to tackle CH.

Cat

p.s. I think that using the term 'rebound' headaches in regards to CH is a misnomer.  IHS classifies rebound headaches as a specific kind of headache that occurs in relation to the overuse of analgesic medications such as acetaminophen and ibuprofen.  When it comes to CH, re-occurrence or re-attack might be better terminology to consider using.

Hi Billy I have mentioned in my previous posting I am chronic CH but I have been on verp 960mg a day for about 1 and half. I have been told by many Docs you can stay on long term as long as I have monthly ECGs. Of course I dont believe you can have any drug without some side effects which you should talk to your Doctor about.

Hope that helps