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'd like to hear about Neurontin, too...I have a friend who's a pharmacy tech and when I first explained CH to him, that's one of the drugs he wondered about.  Anyone?  Beuller?

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 was the first prevent I tried.  It didn't work out so well.  I walked around with a two martini buzz that didn't go away for the month I used it.

The final straw was when I almost pulled out right in front of an oncoming mini-van with the wife and four of my little ones in the back.

I did much better on Verapamil.  It did take a bit of experimenting to find the right regime though.

Initially the Dr perscribed 120mg of sustained release.  We eventually moved up to 240mg without any relief.

Then Bob Johnson posted an abstract on individualizing treatment of Cluster Headache with Verapamil.  I printed it out, took it to my Neuro and finally found my magic bullet.

The EKGs are no big deal.  20% of those taking high doeses of Verapamil develop heart arythmia.  That means 80% don't!  If you do, the EKG picks it up and you are back to square one looking for another prevent.  Once you stop taking the med, the problem goes away.

The biggest side effects are slow heart rate and digestive issues.  

A slow heart rate forces you to adjust exercise routines a bit while you get used to the med.  You also have to reset your target heart rate as it will be lower.

Digestive side effects include indigestion and constipation.  The later being the most difficult to deal with.  Some have reported that Miralax is helpful.  Also taking the med with some food helps.

I hope this helps...

-Dennis-

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


Quote:

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.

neurontin did not help me

I have been using verapamil 480 mg. for many years now. About a year ago I also started using Neuroutin ( Gabapentin ) 600 mg. daily. For me it has made a big difference I have only had to abort a hand full of attacks in the last year.
I am thankfull as a chronic suffer that this combo works for me.

Good Luck & PFD.

Marty

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."  

Thanks for the interesting info Bob.

I was on Verapamil for many years 480/day and occassionally much higher(I cannot recall exactly) with periodic EKGs.

Out of the blue, one day, i experienced a heart block that made me unable to stand up...at the emergency department they called in all the Doctors to watch my printout since the type of heart block was so unusual...it was a modified Wenckebach in transition to full block....the oddest feeling I ever had, with my heart banging and missing like an old out of tune car at the slowest rate possible without losing consciousness....immediately taken off Verap and never experienced anything similar since.

If you are on it and you feel the slighest murmer or flutter in your chest (which i had on occassion b4 my problem) get to the hospital...it could become a medical emergency.


Paul

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

Presently on 75 mg of Topamax a day. A pain specialist had me to try Neurontin for restless leg syndrome. At 900 mg a day, the legs felt better, but I was flying. I also couldn't see any help for the clusters from the Neurontin.

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'd start with the Verap because it has a long track record of success and the side effects are well known.

Because Gab and Neu, etc. are all new meds when used for CH, the outcomes are not well esablished. Not an argument for not trying them, but just not until the older meds have been given a good trial.

Docs are not above trying "every new kid on the block" before there is a decent clinical track record of effectiveness. They want relief for their patients too but the latest is not always the best. I've been reading the literature for 20-years plus and have seen a number of meds come and go but Verap sticks.

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.

Decided to resurrect this topic since my Doc wants to add Neurontin to my daily regime. 

Any further input regarding combo of Verapamil and neurontin would be greatly appreciated! 

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

Verapamil seems to be helping me. 120mg tablet per day but doc says I can double it. I probably take 10 tablets per week and i have cafergot a a back up. My CH have almost disappearedmaybe 2 a week now. that is down from 2 per day before the verapamil. I have not heard about neurantin. I had to find verap myself and just tell the doc to give me a script. GPs are hopeless here. I have had no real side effects except maybe low level depression at times. Ihave been on it for 3 months or so and no EKGs. I dont want any for now anyway and am much happier.

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 Mike yes I am pleased so far but there is always the worry CH will return. You know we never even felt the quake here! It was very deep though. I meant to add before that in fact I got the idea for verapamil from this site and then asked the GP for it. They are hopeless here and seem more interested in testing me for diabetes and all the other stuff but cant get a handle on the CH.

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!

verap helped for a while, verap lithium combo worked for a while, verap, lith, neurontin trio helped for a little while. Neurontin does make some people a little loopy though. did me. Felt like i was high! also locked up bowels.

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).

I was given neurontin by one of the neurologists who I was sent to and let me tell you it didnt do a thing for the headaches, it just made me exhausted all the time and as a mother of a 5 yr old I cant be exhausted all the time.

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

Topirmax worked great for CH but made me stupid (although that isn't a side effect for everyone)

Verapamil at 240 twice a day plus 2000 depakote once daily is working.  I am also taking the vitamin regimine (fish oil, vit k, D3, etc).