Verapamil has been discussed many times here. For the newbies I would like to add my part in hopes it may help them if they get scripted this med to use as a preventative for CH's.

I am into month five with this cycle and usually go for about a full year before it breaks. This time I decided to taper off early in my cycle to see where I am at with it, as the Verapamil has kept me for the most part PF.

The shadows have lessened and no hits for a few weeks so here goes a try. My full dose of Verap. was 480mg daily, and now over the course of four weeks I am down to 160mg daily, with fingers crossed. A few heavy shadows are present, but I have my #1 abortive right beside me, the o2!!! It will never be out of my sight, especially if I am wrong and the beast is still with me, which time will tell very soon.

Be careful with the Verapamil, as I ramped up too quickly with it when I started this cycle (went right on full dosage of 480mg) and my heart slowed down too much and as a result a trip to the ER. So next time a slow ramp up as well as a very slow taper off.

Hope I am right! :o

Fingers crossed for you Barry.

Glad the verap has been working for you.



Paul

I hope you are right too Barry!  


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Be careful with the Verapamil, as I ramped up too quickly with it when I started this cycle (went right on full dosage of 480mg) and my heart slowed down too much and as a result a trip to the ER. So next time a slow ramp up as well as a very slow taper off.

Alway a good reminder when it comes to this (or any other) drug.  Always consult with your Dr. when ramping up or weaning off Verap.

Beth

Just want to add my  [smiley=twocents.gif] here. [smiley=happy.gif]

I follow the formula in this study to ramp up my Verapamil dosage.  It helps you find the minimum dosage necessary to prevent the attacks and really reduces the side effects experienced (for me anyway).  

Later, when it's time to ramp down again, I simply reverse the formula.

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Brief Communication Individualizing Treatment With Verapamil for Cluster Headache Patients Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SE Address all correspondence to Joseph N. Blau, MD, FRCP, City of London Migraine Clinic, 22 Charterhouse Square, London EC1M 6DX, UK. From the City of London Migraine Clinic. Copyright 2004 By the American Headache Society KEYWORDS cluster headache • treatment • verapamil (Headache 2004;44:1013-1018) ABSTRACT Background.—Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses—720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.—To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.—Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.—Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy—lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.—Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. -------------------------------------------------------------------------------- Accepted for publication July 19, 2004.

-Dennis-

Thanks everyone. So far, so good!
Appreciate the article Dennis :)

Day two of the 160mg, heavy shadows, but no hits as of yet!

Kick his a$$ Barry, the single track trails are waiting!  ;) Good luck friend.

Joe

Great news, Barry!   I hope it keeps up!

Jeannie

No hits yet! Shadows are intensifying in strength but less frequent today. Just observing this taper closely.
Thanks Joe, our bikes are tuned up and ready to roll! Hope I am  :-/

Thanks for the support, means a lot!  [smiley=hug.gif]

So far, so good, no hits!!! I am continuing the low dosage of Verapamil (160mg daily) and although I have not had a hit as of yet, I have noticed some other things going on.

I do not have a cold, allergies or sinus issue but my right side (clusterside) the tap is open and I am constantly clearing that nostril. I clear it and by the time I sit back down it happens again. This goes on for most of the day and evening, but not too much during the night. Maybe because I am laying down, not sure about that one.

Also, I have been getting what I call a "spike" during this taper. It feels like an instant hit, about a kip 7 in pain level, but it only lasts for about one second. It starts at my right eye and circles my head, then it is gone, just like that.

Angie has noted to me that this is a trait of coming out of cycle for me, judging from the past. I hope this is the case, I will know soon enough.

I wanted to share this as there are many of us on Verapamil and especially for the newcomers who might be scripted Verap for the first time.

As I type, I am having a very heavy shadow and the sinus is doing it's thing again. Oh to be a Clusterhead! :D

I usually shadow, sometimes pretty heavy, with each reduction in dosage.  If I'm out of cycle it generally fades in a day or two.  If not...

Because of high blood pressure I take three other meds.  When I'm finally down to 160mg a day of regular release, I switch to 120mg of SR which I stay on year round.  

Still, if I forget a dose or two of 120SR I get shadows.  

I hope the PF time continues Barry.

-Dennis-

Thanks Dennis. I am still PF for now, and have a good feeling about this cycle ending earlier than my usual one year long cycle.
I have all my ammo at the ready if I am wrong but hopefully will not be needing it! My sinus thing is still doing it's thing today, but no shadows at all so far.

I wanted to post this thread mainly for others who are taking Verapamil as a prevent to discuss what to expect as far as tapering on and off this med. It has worked wonders for me and I have enjoyed many PF times while on it, not like the other cycles before I was properly diagnosed by my Neuro, and rode them out without anything other than Tylenol and other otc meds that did nothing to stop the crippling pain.

This site was a godsend as I discussed some of the options I had learned on here with my Neuro to find what was going to work for me.

I really, REALLY pray this helps someone in some way and PF wishes to you all 24/7!

That's great news Barry, now go get some downhill time in!

Joe

Well today is my third day of the final stage of my Verapamil taper. I am down to one, 80 mg Verap. per day, and all is good so far.

If I am done with this cycle, this will have been the first time that I can ever remember having a cycle this short, but not complaining ;D

Verapamil taper is done. Day three, no hits!! Not doing the happy dance just yet, but feel positive as this is an unusually short cycle. I should be getting labeled by now being totaly off the Verapamil, I will know soon.

I will keep this post updated as I feel it is important to let others know how certain meds effect us in different ways. If I am wrong with this cycle ending, I will have to increase my Verap. slowly, until I get to my cocktail of 480mg daily. Worked wonders for me this round.

Do not self medicate! Always work with your doc before increasing or decreasing your meds. Verapamil is a powerful med, don't mess with it. ;)

I will update again very soon. :)

[smiley=shore.gif] Who cares if I might be premature...I'm guessing you're out of the woods barry!

Joe

[smiley=shore.gif]
Looks like I am out of cycle!!! [smiley=bigguns.gif] Oh what a feeling.
I won't be going anywhere just because my cycle ended. There are folks who may need my help and I will be here daily whether in or out of cycle.

Does anyone else have a loss of appetite after being completely off the Verapamil? I seemed hungry while on it, and now I seem to not be hungry near as much, just wondering.

PFNAD wishes to each and everyone of you's! :)

I hope that bastard loses your address Barry!!!

I'm always hungry on Verapamil or off.  Never noticed any difference myself.

-Dennis-

Great to hear you're out of cycle! I can imagine what that must feel like. I'm in my 5th month now (of my first cycle ever) and I'm hoping I will get a break soon too.

I had my first appt with a different neuro today and he started me on Verapamil. And O2. I'm taking 240 mg of Verapamil retard once a day.

Hope you stay PF!

Lottie. Happy to see you have a new Neuro. Do you have everything you need to deliver the o2 properly, and if not we can help you with that.

Be careful with the Verapamil, I taper up as well as down. It takes up to two weeks or more for the Verap, to get into your system, so be patient. Your Neuro has started you on a low dose, but you might need to up that, but only under your doc's ok. I was up to 480mg per day last cycle and that worked for me, that time!

My wife Angie is Dutch, but born in Canada, she will be along to say hello to you soon.

Sorry you are one of us here, but there is no other place to be than being around those that TRULY understand what you have.

 Barry :)

barry_sword wrote on Mar 26^th, 2009 at 9:15pm:

If I am wrong with this cycle ending, I will have to increase my Verap. slowly, until I get to my cocktail of 480mg daily.

I've always found better results tapering off very slowly, too.  There have been times in the past I've guessed the end too soon or tapered too fast and needed to step up gradually again in small steps.  After your slow successful progress down, I'd doubt getting back to 480 would have been necessary.


 
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Looks like I am out of cycle!!!

Hey bud,    :)  :)  :)  :)  :)     :D