Hello all,

Long time lurker, first time poster.

Some questions for episodic verapamil users:

1. What daily dosage do you use?

2. Do you use extended release (ER) pills? Have you used the non-ER? If so do you notice any difference in the effectiveness?

3. Has verapamil ever become less effective over time, requiring you to increase your dosage?

4. How much longer than your typical cluster period do you continue taking verapamil? Example: cluster period = 6 weeks, stay on for 8 weeks (2 weeks longer than typical period).

* Background
I've been an episodic CH sufferer for 15 years, and I'm in a pretty weird cycle and trying to figure out what's going on. I usually have 6-8week cycles in spring and fall with remissions as long as 2 years.

* Current treatment regimen
Prednisone taper (starting at 60mg), Verapamil (360mg ER), imitrex subcutaneous.

* Why I'm asking
I would like to increase my verapamil dosage (to 600mg from 360mg) and wanted to see what the community's experiences with it have been. I understand we all react differently (sometimes very much so) but I think more anecdotal data would be helpful to me.

* Weird current cluster cycle I'm having
  - 1st part of cycle started in Oct '09, responded to pred/verap and disappeared after a month
  - 2nd part of cycle restarted in Jan '10, responded to pred/verap and disappeared in a month,
  -3rd part of cycle restarted in Mar '10, did NOT respond to verap/pred and is continuing with no signs of slowing down through the beginning of May '10. CH up to 3x/day.

* Concerns
  - Episodic -> chronic
has anyone experienced verapamil causing episodic CH to become chronic? I've read anecdotes but am not sure if these are tall tales. I did not find any mention of it in journals.

  - 'Safe' maximum dosage of Verapamil
I wondered about the maximum dosage of Verapamil you've taken. I've seen anecdotes that some people have taken as much as 1,200mg/day.

Thanks in advance for any info you guys can share. I wish you all many pain free days. =)

Dear Stegmut,

I think it's safe to say that the median average dosage for Verapamil, when in cycle, is around 480 mg a day for many here. Notwithstanding, any dosage increases are something you need to discuss with your doctor and they are generally preceded by an ECG. Maximum dosage I have heard about is 960 mg a day.

Many here are likely to confirm that the fast-acting formula is superior to the SR formula. Dosages are generally taken 1/3 each am, in the afternoon and pm.

Just like any prevent for CH, Verapamil can, as CH morphs, be more or less effective from one cycle to the next.

Though there is no hard and fast rule on when to taper down Verapamil, many here tend to slowly start reducing their dosage after having been 2-3 weeks pain free.

Although Verapamil is certainly a life-saver for many, there also is anecdotal evidence and reports about Verapamil artificially extending cycles. This can manifest itself in prolonged heavy shadows or low kip level attacks, sometimes even over several months.

Some have "called the bluff" by tapering off Verapamil regardless and by dealing with shadows through alternative means. These include O2, energy drinks, kudzu or caffeine. Naturally, if you still have high kip level attacks, they may not be related to Verapamil but simply mean that you are still in your cycle.

I would not martyr myself with the thought of becoming chronic at this point. Since you have seemingly had fairly consistent cycle patterns in the past, my personal advice would be to reduce Verapamil when you feel that your kip levels are decreasing and see if you can't manage the remainder of your cycle by alternative means, particularly since Verapamil does not seem to work for you at present.

I would also recommend that you add O2 to your arsenal of abortives. Imitrex should be the second line "on the road" abortive. You can read on how to obtain and use O2 by checking the "oxygen info" tab on the left of this page.

Hope your cycle will come to an end soon.

Thanks very much for your thoughtful and detailed reply.

If I was still insured (COBRA expired a few months ago), I would follow your advice to a 'T.' However, lacking insurance it would probably be prohibitively expensive to see a neuro for an ECG.

In the past, O2 was not effective as an abortive for me (possibly because of low-ish flow rates), and was fairly expensive through the provider (Apria) used by my insurance co. I'll give O2 another shot, and will check the link for alternative providers as per your suggestion.

Probably not the smartest thing to do, but I'm going to give 600mg/day a shot without seeing a doctor. I'll let you know how things shake out.

Thanks again and take care.

The second piece on potential heart effects is unsettling but a rare condition which, as you will read, is easy to manage. I'd suggest that you print all of this information and use it to discuss your treatment.

The first report, on using Verap., is a protocol which has gained wide acceptance.

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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    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. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

=======
Verapamil warning
« on: Aug 21st, 2007, 10:38am »   

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I posted this information recently in the form of a news release but more details here.
__________________

Neurology. 2007 Aug 14;69(7):668-75. 

 
Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy.

Cohen AS, Matharu MS, Goadsby PJ.

Headache Group, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, UK.

BACKGROUND: High dose verapamil is an increasingly common preventive treatment in cluster headache (CH). Side effects include atrioventricular block and bradycardia, although their incidence in this population is not clear. METHOD: This audit study assessed the incidence of arrhythmias on high dose verapamil in patients with cluster headache. RESULTS: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%. CONCLUSION: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.

PMID: 17698788 [PubMed]

« Reply #7 on: Today at 1:01am » WITH THANKS TO "MJ" FOR POSTING THIS EXPLANATION. 

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The article summarized in layman terms from the website below.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

"Cluster Headache Treatment Poses Cardiac Dangers 
Off-label use of verapamil linked to heart rhythm abnormalities, study finds 

By Jeffrey Perkel
HealthDay Reporter   

MONDAY, Aug. 13 (HealthDay News) -- People who use a blood pressure drug called verapamil to treat cluster headaches may be putting their hearts at risk.

That's the finding from a British study that found heart rhythm abnormalities showing up in about one in five patients who took the drug in this unapproved, "off-label" way.

"The good news is, when you stop the drug, the effect wears off," said study lead author Dr. Peter Goadsby, professor of neurology at University College London. "So, as long as doctors know about it, and patients with cluster headaches on verapamil know they need EKGs [electrocardiograms] done, it is a completely preventable problem." 

The study is published in the Aug. 14 issue of Neurology.

In a review of the medical records of 217 patients given verapamil to treat their cluster headaches, a team led by Goadsby found that 128 had undergone an EKG, 108 of which were available in the medical records.

Of those 108 patients, about one in five exhibited abnormalities (mostly slowing) in the heart's conduction system -- the "natural pacemaker" that causes the organ to beat. Most of these cases weren't deemed serious, although one patient did end up having a pacemaker implanted to help correct the problem. In four cases, doctors took patients off verapamil due to their EKG findings.

One in three (34 percent) developed non-cardiac side effects such as lethargy and constipation. 

"It is a very nice piece of work, because it provides commentary on a boutique [that is, niche and off-label] use of the drug," said Dr. Domenic Sica, professor of medicine and pharmacology in the Virginia Commonwealth University Health System. He was not involved in the study.

Cluster headache affects about 69 in every 100,000 people, according to the Worldwide Cluster Headache Support Group Web site. Men are six times more likely than women to be afflicted, and the typical age of onset is around 30. According to Goadsby, the disease manifests as bouts of very severe pain, one or many times per day, for months at a time, usually followed by a period of remission. 

Verapamil, a calcium-channel antagonist drug, is approved by the U.S. Food and Drug Administration for the treatment of cardiac arrhythmias and high blood pressure. The medicine is typically given in doses of 180 to 240 milligrams per day to help ease hypertension. 

However, the patients in this study received more than twice that dose for the off-label treatment of their cluster headaches -- 512 milligrams per day on average, and one patient elected to take 1,200 milligrams per day. The treatment protocol involved ramping up the dose from 240 milligrams to as high as 960 milligrams per day, in 80 milligram increments every two weeks, based on EKG findings, side effects, and symptomatic relief. 

Many patients may not be getting those kinds of tests to monitor heart function, however: In this study cohort, about 40 percent of patients never got an EKG. 

Given the typical dosage, Sica said he was surprised so many patients were able to tolerate such high amounts of the drug.

"When used in clinical practice for hypertension, the high-end dose is 480 milligrams," said Sica. "Most people cannot tolerate 480."

Dr. Carl Pepine, chief of cardiology at the University of Florida, Gainesville, was also "amazed" at the doses that were tolerated in this study. "The highest dose I ever gave [for cardiology indications] was 680 milligrams. This might give me more encouragement to use the drug at higher dose," he said. 

But Sica said he thought cardiac patients -- the typical verapamil users -- were unlikely to tolerate the drug as well as the patients in this study, because verapamil reacts differently in older individuals, who are more likely to have high blood pressure, than in younger patients. The average patient in the United Kingdom study was 44 years old. 

According to Sica, two factors would conspire to make older individuals more sensitive to verapamil. First, the metabolism of the drug is age-dependent, meaning that older individuals would tend to have higher blood levels of the drug, because it is cleared more slowly than in younger individuals.

Secondly, the conduction system of the heart (the natural "pacemaker" becomes more sensitive to the effects of verapamil with age, Sica said. 

"It's likely that an older population would not be able to tolerate the same dose," he concluded. 

According to Goadsby, the take-home message of this study is simple: Be sure to get regular EKGs if you are taking verapamil for cluster headaches. Goadsby recommended EKGs within two weeks of changing doses, and because problems can arise over time -- even if the dose doesn't change -- to get an EKG every six months while on a constant dose. 

"The tests are not expensive, and they are not invasive," he said. "They are not in any way a danger to the patient."

For the most part, Goadsby said, should a cardiac problem arise, it will typically go away once the treatment is halted." 

Good question Stegmut.  I can't help with the prescription part of that, but the bigger question is interesting.  In the past when I let my cycle come in and run its course, it does its damage and goes away for a year or 2.

Since using the psilocybes to prevent oncoming cycles duing my shadow time OR to break a cycle once started, I feel like the CH don't go away for a year or 2, but are just postponed a few months.

Which leads to the bigger question of: if we treat or break or lessen our cycles to the extent that the pain couldn't get all the way into our heads, does it come back sooner.

Don't get me wrong, I don't mind a maintenance dose every several months if it alleviates the pain, but I have noticed this sequence.  The word on the psilocybes is after a few years of this they space further and further apart.

Interested to hear if others have had similar experiences on anything they are taking.

:o (googly eye dude)

--Shaggy

Hubby is taking Verapamil ER 240 mg three times a day (total 720 mg), no CH, but still with 1-2 shadows a day.

We have the non-extended release tabs on hand and are switching to those TODAY.

Fortunately, I'm married to a wonderful man and he's married to a registered nurse because I wouldn't advise changing Verapamil doses without notifying your doctor and closely monitoring heart rate at rest, after activity, and while sleeping, along with blood pressure sitting, standing, and lying down. Verapamil CAN bottom out your heart rate and/or blood pressure.

My little advice: keep one of those home blood pressure monitors around and check your vital signs regularly until the Verapamil dosing is stabilized.

I've been on 240 mg SR for three weeks, following a powerful steroid dosing of about two weeks, and my headaches are totally gone.  Neuro wants me to stay on Verapamil for another couple of weeks until we're sure cluster is over, but I know it is because I've been able to have a glass of wine with dinner each night for the past week!
As for dosing, though, I suspect we all respond very differently.  Maybe because I'm not very big, the 240 SR is OK for me...or maybe we all generate different amounts of the damned brain chemicals that cause these headaches, so the amount of preventative meds. will also be unique for each of us.  I also wonder about the preventatives in general, because the typical episodic cluster lasts for 6 weeks or less, which seems like the amount of time it takes for these meds to kick in...wonder if the meds are really doing anything, or whether it's just the time factor...
Anyway, I'm with everyone who says that you shouldn't go high does on the Verapamil without letting your doc know, b/c it does mess with heart rate and blood vessel tonicity...wouldn't want you to have a heart problem while you're trying to recover from a brain problem!
Cynde

I was going to start a new thread but probably best to pop it in here because it involves verapamil and ch morphing...

Last night I coped a totally random hit - about 6/7 kip on the left - always a righty.  I have recently come through a cycle of shadows, tapered off the verap and sent back the 02, so needless to say it was a tough night.  Hit lasted about 2 hours... and it being on the wrong side made it a little harder to deal.  Nevertheless I survived!! :-)

Its been a while since I've had a proper hit - the last few cycles have been constant daily shadowing only - and I put that down to the verap.

The fact that it happened on the left instead of the right is interesting.  A few cycles ago I coped a hit on both sides at the same time and that was HELL! 

I feel that since I started on verapamil - about 5 years ago - my cycles have morphed quite a bit.  Generally longer with more shadows.  A couple of years ago I decided to rely on 02 only and that was a doozy of a cycle but much shorter?

I keep an eye on the boards - with a particular interest in people's experience with verapamil - because I do wonder if there is any relation between the changes and use with this drug.   I have tried other medications that worked for a cycle or two and then became useless.  I guess I will continue to use verapamil when my next cycle starts - most probably around July/August.

Has anyone else had similar experience?   BTW I also have terrible issues with fatigue when using verapamil - but also have been diagnosed with fibromyalgia (in 2001) and I know that impacts upon my energy levels.

Kate

I hate that stuff...the Verapamil...doctor thinks I'll get used to it lowered my doses from 280 a day to 140 and it still makes me feel like crap!  Dr says I'll get used to it, but I don't want to get used to feeling like crap... Naturally I run a low BP usually mid 70's low 80, and verapamil is a blood pressure med for high blood pressure.  My Dr said that the 280mg a day was making my BP crash, hence the feeling like crap....so, he halved it...still feeling like crap....I want off of it, but I am in shadow right now too, so I don't dare stop because I just finished an 8 week cycle and still trying to recover from that.... My Dr said he can't lower the dosage anymore because it will no longer be effective for CH... so /sigh Dr is totally against Topamax, which I wanted to try, but he was very adamant...so, I am at the mercy of feeling like crap AND feeling a attacking is imminent....which makes for a lovely day!!   :o 

I'm convinced Verapamil made me Chronic, and a few years back I remember a thread or two full of people who thought the same.  If I remember correctly though, those of us who it made worse were also those who it never helped at all.  There were probably far too few people to get any sort of statistically accurate read on that though.

Hey Stegmut, funny, I've been struggling with some similar issues - my cycles have historically lasted 4-6 weeks (going back 20 years) with a 2 year remission.  My current cycle started in late Dec 09 and I'm still getting some hits almost 5 months later.  I've used verapamil for the past 4 cycles with very good results (640mg-720mg per day) but I've tried twice to tapper off during this cycle when I thought I was through and have gotten hit each time.  I stopped the verapamil about a week ago and have has 2 hits since then that resembled strong shadows.

I haven't renewed my verapamil script again, I think I'm going to try to hold off and see what happens just using O2 and imitrex as long as possible.  To be honest I'm out of answers and am just trying to go with the flow and hope for the best (and pray I don't turn chronic).

Please consider the evidence of claims made about any treatment we use.

PDF file, below.

---

@Bob Johnson
Didn't go chronic
Not to thread necro, but thanks for the PDF you enclosed and I wanted to let posterity know that I didn't 'go chronic.' As others suggested, my cycle was atypical but not exceptional. I had a pretty standard remission period of 3 years, and went back in cycle around February 2013. I ended up tapering off the verapamil and used subcutaneous sumatriptan to deal with the higher level hits. My cycle ended conventionally.

The suspect wisdom of crowds
On a more philosophical level, it's well established that humans have a strong tendency to overvalue anecdotal evidence to the detriment of systematic study. Message boards like this can be a great source of succor and community, but as the pdf mentions, they can be breeding grounds for suspect logical leaps because we overvalue what our community self-reports and then make broad, unsupported conclusions. I suppose because it's a lot easier to say 'so and so said it, so it's true' than to try to understand basic statistics, normal distributions, t distributions, null hypotheses, heteroschedasticity, whatever.

Moreover, I had completely forgotten about this thread until I googled verapamil and this thread popped up. I was struck that a reader stumbling onto my post for the first time in 2013 might be left with a strong suspicion that verapamil caused someone to go chronic. And this incorrect conclusion would've been based on a half told story.


Bob Johnson wrote on May 17^th, 2010 at 4:41pm:

Please consider the evidence of claims made about any treatment we use. PDF file, below.