I think I have reached the end of this cycle and my doctor is thinking Verapamil. What dose (Millagrams) do you use per day????

Why on earth would you start a preventative at the end of your cycle?

My magic number was 480mg/day.

Brew wrote on Sep 9^th, 2010 at 10:58am:

Why on earth would you start a preventative at the end of your cycle? My magic number was 480mg/day.

So I guess it does not prevent a new cycle?

And is only used during a cycle?

I take 240mg OUT of cycle.( I start shadowing if I try to wean off of it.)  In cycle, I have been up to 560mg.

mikstudie wrote on Sep 9^th, 2010 at 11:21am:

So I guess it does not prevent a new cycle? And is only used during a cycle?

Some take it all the time, but if you have definite cycles (i.e., you know when they will strike), there should be no need to take it in between.

Jeannie has a use for it between cycles - are you sure you do? Hers is most likely the high and low cycles experienced by a chronic sufferer.

Why take it if you don't need to?

If your cycle is ending, maybe you could ask your Dr. about not starting it  until you are due for your next cycle.  That is what I used to do but have not been able to come off of it this time.   It will be a year next month.

Jeannie

last two cycles 2008 and 2010 have been July,Aug,Sept. mabey wait and start in early July next year.Thanks for the advise I'll see what doc thinks.

mikstudie wrote on Sep 9^th, 2010 at 1:07pm:

last two cycles 2008 and 2010 have been July,Aug,Sept. mabey wait and start in early July next year.Thanks for the advise I'll see what doc thinks.

The reason you don't want to take it when you don't need it is so you can avoid some of the side effects, which for me were quite bothersome: constipation and sexual dysfunction being the only two that really concerned me (like that's not enough to carry around, eh?).

See PDF below.
==========
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.

---

Went to neoroligist today I was increased to 3 120mg quick release verapamil from 2 120mg slow release pills about a month ago. Today I was changed to 2 240mg slow release pills a day. I'm a chronic sufferer and just wondering if anyone has heard of having EKG's because of higher dose? Never heard of taking ekg's for this, hoping maybe someone has some idea. Thanks for any info.

I take 480 mg daily during cycle, that is my magic # so far!  ;)

crisjensdad wrote on Sep 13^th, 2010 at 8:55pm:

Went to neoroligist today I was increased to 3 120mg quick release verapamil from 2 120mg slow release pills about a month ago. Today I was changed to 2 240mg slow release pills a day. I'm a chronic sufferer and just wondering if anyone has heard of having EKG's because of higher dose? Never heard of taking ekg's for this, hoping maybe someone has some idea. Thanks for any info.

Hi Cris,

I take 480mg/dy during low cycle and 960-1040 in high cycle...the IMMEDIATE release form is the one to consider. Works for me...most of the time.

Ekg's are the norm for high doses of this med...especially when upping the dose. Bob J has tirelessly posted the BEST info on this med (God Bless Bob...and I certainly do, EVERY day)....research those....you will be well served.

Best,

Jon

Hi Jon,
Thanks for the info on this. Seems the immediate release was not doing good things for me so doc thought it best to go back to the slow release for awhile anyway. Thanks for all the info and help, you guys and gals are great!

I'm on 720mg and everything is working fine!!! Good thing!
Still get a few hits but no dis-functioning here!
Topomax fixes the constipation for me...  :D

But once the cycle is done!  I'm off this crap till next bout, I
Just don't know when the next time is, but I am happy not to
take all this stuff year round!  Sure as shit don't miss the
visits either! ;)

Peace,

Boski

I'm on 360mg a day divided up into 3 equal doses. This is working pretty well for me as a preventitive although it is making me a bit tired at times and has dropped my blood pressure quite a bit too.

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

--------------------------------------------------------------------------------
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. 

--------------------------------------------------------------------------------
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." 

I am on 360 of the Verapamil SR which also seems to work better for me. 

You were given great advice and I would only reiterate it.    ;)

Bob Johnson wrote on Sep 19^th, 2010 at 8:39am:

MONDAY, Aug. 13 (HealthDay News) -- ... The medicine is typically given in doses of 180 to 240 milligrams per day to help ease hypertension.  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. ...

Thanks, Bob. 

I was able to go med-free for six months, but then things began again.  This go-round though, 120-240/day is sufficient for some reason, and no side-effects.  Have been more active, but it could be just getting older. 

Cool senior citizen benefits.   :)

My neurologist, who just started me on O2, is recommending I try Verapamil next.  The O2 is working very well.  O2 is a vasoconstrictor, Verapamil a vasodialator.  I'm having trouble making sense of this apparent conflict.  Moreover, I already manage my BP quite nicely with Losartan.  Earlier, when getting my BP under control, I had adverse reactions to atenolol, lisinopril and amlodopine.  Any thoughts on this?

Bill G wrote on Sep 20^th, 2010 at 3:10pm:

My neurologist, who just started me on O2, is recommending I try Verapamil next.  The O2 is working very well.  O2 is a vasoconstrictor, Verapamil a vasodialator.  I'm having trouble making sense of this apparent conflict.  Moreover, I already manage my BP quite nicely with Losartan.  Earlier, when getting my BP under control, I had adverse reactions to atenolol, lisinopril and amlodopine.  Any thoughts on this?

Verapamil is a pretty good preventitive for many people (including me) and it's much better to prevent the CH from happening in the first place (most of the time) rather than relying on aborting them quickly with oxygen.

There are alternatives to Verapamil, like lithium, which may be better for you to avoid messing up your well managed BP.

Quote:

Verapamil users

Just adding a personal experience to this thread.


After a time at higher doses, above 480 up to 900mg/day, and if a decrease in dosage is attempted because things have seemed ok for a while, for me, when it's a mistake, the effect would be known within about 48 hours. 

While on much less recently, about 240mg, and a decrease is attempted, my mistake is known within about 16 hours.  A time difference has personally depended on how much is regularly being taken. 

There can be many other factors affecting this, though. 

I've read here some can have more immediate consequences if a dose is skipped.

Just to add what is going on right now with me is very similar to Kevin, as I am taking only 160mg Verap daily during cycle, and so far so good!! :)
I am 51 and maybe we are out growing them, but I doubt that just yet!! ;) O2 full and at the ready!!! 8-)

Kevin_M wrote on Sep 20^th, 2010 at 5:30pm:

Quote: Verapamil users Just adding a personal experience to this thread. Me too...and similar After a time at higher doses, above 480 up to 900mg/day, and if a decrease in dosage is attempted because things have seemed ok for a while, for me, when it's a mistake, the effect would be known within about 48 hours.  I know within 24 hrs.... While on much less recently, about 240mg, and a decrease is attempted, my mistake is known within about 16 hours.  A time difference has personally depended on how much is regularly being taken.  Same here.... There can be many other factors affecting this, though.  Oh yeah!...we is all the same and all different...thinking that's why we are here. Share your experience...hope it helps someone... I've read here some can have more immediate consequences if a dose is skipped. Yup...that has happened to me too. The ONLY way you gonna know for yourself is experience. It can be a HARD teacher...... Best, Jon

I just want to bring back to this thread what Brew said earlier about taking verapamil when we're "off cycle." I agree this makes sense for those of us who are chronic, and we now know we do experience cyclic highs and lows while chronic. But if one is episodic there is nothing to prevent between cycles, so it seems to obviate the need for verapamil. Again, it depends on whether you are episodic or chronic. lance

jon019 wrote on Sep 20^th, 2010 at 8:09pm:

The ONLY way you gonna know for yourself is experience. It can be a HARD teacher......

Like a true/false quiz and guessing.      ;)

Please keep in mind that these dosages are based on treating a condition that chronic and severe.

I’m currently at 1200mg Lithium Carbonate and 960mg Verapamil daily.  And as previously documented some on-going, routine tests are important.  Mine include routing blood tests for Lithium levels and Liver function, and EKG for heart function.   
 
Something to understand about Verapamil - It comes in three forms, CR (Controlled Release), SR (Sustained Release), and ER (Extended Release).  Depending on the individual this apparently this can make a significant difference.

My Example,
I’d been taking CR for over a decade or so at 720mg daily with no side effects and able to maintain somewhat predictable CH highs and lows. 

While my original prescription was for CR, a Neurologist who I saw for a very short period of time wrote my prescription for SR and I failed to notice the change.  (For this and a variety of other reasons I decided to switch Neurologists fast).  The Pharmacy continued filling the prescription with CR like they had for over a decade but suddenly noticed the change and filled it with SR.  My dosage remained 720mg.
      
I questioned the change but the Pharmacist insisted there was no difference between the two.  Within two weeks the frequency/severity of CH attacks had gone through the roof and my ankles began swelling seriously anytime I was on my feet for a few minutes.  The Pharmacist insisted that the excessive swelling was the result of the unusually hot weather and that CR and SR are same.
    
Through my current Neurologist I had my Prescription re-written for CR.  With the significant increase in CH activity the Neurologist asked me to increase my daily dosage to 960mg, which I agreed to do.   Within two weeks CH attacks were back to normal daily levels and nearly all ankle swelling vanished.  We’ve agreed to stay at this level for another 3 weeks and monitor CH activity before reducing the dosage back to 720mg.  Note - the EKG was normal. 

I guess my point in all of this is to say that it is important to do research into the meds being prescribed, side effects, and any recommended tests.  As is apparent in my case what a Pharmacist and one Neurologist believed to be no change - was in fact a major change.  Secondly, a H/A journal is a key tool for communicating facts to good doctors.  With it I am able to quickly communicate when changes occur, the results of those changes - and quickly get a busy Neurologist to discuss options.


Best Wishes,
burnt-toast
(Tom)

The first year taking Verap SR, feet swelling occurred, but thereafter didn't seem to happen.  I've also noticed my scripts over time have changed from SR to SA to ER at times, probably due to the pharmacist, nothing changed on the written script.  Good mention to watch that, Tom.


Quote:

a H/A journal is a key tool for communicating facts to good doctors.  With it I am able to quickly communicate when changes occur, the results of those changes

This is good advice for communicating feedback.  I've worked with my doc for several decades and verbal commication is understood and ok, but a journal is a must when giving feedback for follow-ups whenever occasionally seeing a neuro.

Good post, Tom.

Prescription meds and people's reactions to them are funny things...

I've seen people who go from brand name to generic completely lose the benefit of the medication.  I've seen people go from short to long acting or vice-versa suddenly start having wacky side effects.  I've seen people who can take a 12hr release of one med but be completely unable to take an immediate or 24hr release...

And, docs and pharmacists can change meds from one manufacturer to another depending on what's currently 'in vogue' or what the pharmacy has in stock or what manufacturer made the most recent delivery of meds.

Technically generic vs brand name and/or different length preparations are supposed to be chemically the same in terms of active ingredients.  But, the different patient reactions are there, sooooooo there you go...

If you are one of those people who tend to be sensitive to different med preparations - watch your bottles - check the name of the med, the manufacturer, and the pill shape/color/size when you pick up your meds at the pharmacy.  Have your doc be careful and specific of what she writes on the prescription - and also have her mark the 'do not substitute' box on the prescription - otherwise, pharmacy will just give you what they have on hand rather than the specific med by the specific manufacturer ordered.

I sometimes wonder, how many current chronics started out as episodics, but could never get off of verapamil?