Am using oxygen, and does good job aborting these beasts- but I need something as a preventive

My neuro suggests Verapamil - when reading some on it, at higher doses, need frequent ekg's, as verapamil could cause heart block - this sounds pretty scary. Have others had experience with verapamil - is it effective, how about side effects, and this stuff about heart block??

Another CHer has suggested Neurontin (Gabapentin) - has anyone else had experience with this drug??

As I said, I need a preventive, but I don"t like taking drugs, so am trying to balance being careful with getting on something that will work.

Thanks,

Joe W.

I used Neurontin and Verapamil together daily 11 or 12 years ago.  I thought that it was a winning combination for a short time, until the hits returned. Refusing to give up hope, I got permission to ramp the dosage up.

With Verapamil at 720mm and Neurontin at 2400mg I saw a big improvement. My Doc felt that it was probably the Verapamil doing the trick so asked me to try doing without Neurontin. He was right, Neurontin wasn't doing anything for me.

In really reading up on it, I'm not convinced that it's any good for it's intended purpose as a neuralgia and/or anti-seizure treatment.

Marc

neurontin did not help me

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.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

"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." 

After 30 yrs of clusters (episodic) I have found that Verapamil is the best thing for breaking a cycle/keeping it at bay.

It does not help in the beginning, but I have taken 360mg twice daily and it seems to be the only thing to help.  And trust me, I've tried everything...

Just my opinion on what works for me....

Wendy

I was on Neurontin from the time I was 12, until the age of 21.

I did fine on it for years, I'm not sure if my body changed or what... But some time after I turned 21 I became pretty ill, went off of it cold turkey (I was on 2700mg per day... Y halo thar withdrawls.) And when I went back on it, along with the rest of my meds...

...the Neurontin made me aggressive. Very aggressive. No one could stand to be around me. I couldn't even stand to be around me. My doctor tried me on Lyrica. Both seemed to make my migraines worse, and made me so cranky it wasn't worth it.

Mind you, I never was drugged due to it, it did help me a LOT... I had needles being jabbed into the nerve roots in my spine every other week, so the amount of nerve damage and pain I had was pretty severe... It did't make me out of it or anything.

So on the nerve pain front, and migraine prevention front, it did great for me. I have no idea how it works for CH...

PFDAN

Mystina

I've had success with Verapamil. 

Verapamil is often (and I thought was supposed to be) the first drug to try.

Your doctor should start you with 240mg.

That heart block info was pretty scary. My doc wants me to get a medical alert bracelet indicating high dose verapamil just in case. Anyway, I was on both verapamil and neurontin for years. Got as high as 640mg/day on the neurontin and while it did make the world warm and fuzzy, it didn't do a thing to prevent or abort cycles. Did help with my mood in between, but all in all, wasn't useful for CHs. Hope you have a better experience. Blessings. lance

Hi Graemel

Great to hear that verapamil is making such a difference, especially with such a low dose as many people need 360-480mg a day and some up to about 1000mg.

I hope everything is fine after yesterdays 6.5 centred in the central North Island.

Thanks Guys.

I am already on Verapamil.  Dr wants to add Neurontin to my daily medication (including verapamil).

I am wondering if anyone else here is on the combination of these two drugs and what their experiences are/were with them.

Thanks!

I've  been on Verapamil for 2 years - started at 120mg when I was first diagnosed with CH. When the cycle in Oct/Nov '09 ended I did not have any more true CH attacks until Oct '11 (still going). I had my Dr. increase my dosage of Verapamil to 240mg in Apr '10 because I was having shadows, fluttery heartbeat, etc. and was afraid I was about to start another cycle. But either the increased Verapamil kept it at bay (or very significantly muted) or I just wasn't going to have a true cycle then anyway. I could tell in Oct '10 that a cycle wanted to happen - I would have slight pressure behind right eye and the fluttery heartbeat, runny eye sometimes - but it never developed into true CH. I am anecdotally attributing that to the increased Verapamil, since the Oct time period is usually when a real cycle hits me hard. Unfortunately, being a complete idiot I started smoking again late '10 and now since this Oct am having another full-blown cycle - 2-3 attacks/day since mid Oct. I suspect that the smoking is exacerbating the cycle, and am going to quit and ask for an increased of Verapamil to 360mg or 480mg/day.

As for Neurontin, I have been on 100mg/day (very low dose) for about 2 years also, to treat periodic limb movement (related to restless leg syndrome). While it has somewhat helped a problem with a bulging c5-c6 disc, I can't say it has had any effect good or bad on the CH. Granted , it is a very low dose. At least i can say I don't feel as though they have had any negative interaction (Verapamil & Neurontin).

Verapmil didn't work for me. Gabapentin combined with Oxcarbazepine seems to have helped