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Been to doctor to talk about O2, verapamil, rb etc (Read 1085 times)
RuVa
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Been to doctor to talk about O2, verapamil, rb etc
Jun 22nd, 2010 at 8:32am
 
Hey all,

it's been a while since my last post but I'm back with an update. Previous week's Tuesday I went to my housedoctor to talk about a possible switch from topamax to verapamil, the possible use of O2 during an attack and drinking red bull.

I sent her a mail with info I found on this site.
After talking things through with some of her collegues this is the result of that meeting:

- Taking Verapamil can only be taken while under surveilance by a cardiologist. So >> meeting with neuro coming up and needs to be discussed with him in accordance with a cardiologist. No further information only that verapamil can actually have quite a bunch of negative side effects as well. Since topamax is really causing so many issues, I want to try anything else but I don't want to replace one issue with another.
My sparkling excitement has been slapped in the face but well... I still have an appointment with the neuro coming up so we'll see.

- My doctor is a very good listener.
She did question having a huge oxygen tank in the garage, while I might only have 1 cluster period in the year anyway... + what if I run out of oxygen in the weekend? I won't just get extra oxygen overnight. It seems it's not so easy getting small portable oxygen thingies either so I need to look up a bit about that.
Either way, she said I should definately talk about that with my neuro and if I really want it, she'll do whatever she can to get me an oxygen tank.
She knows companies that provide them so...

- She actually told me off when I told her I started drinking red bull. Lol, she's funny. Haha, anyways... She doubted it would help + it's not very healthy. However, it seems to me it does help. It seems to really take away some of the feelings I have in my head... I don't know... I don't drink them every day and I only started a week and a half ago with the red bull but the times I've been drinking it I've felt at elast temporary relief from all the buzzes in the head.

- Then we discussed which neuro to go to...
I told her I'm ok with the one I have now, but I'm affraid that I'll do my story and he'll be like... whatever... what you say is not true... He acted like that last time, or at least that's how it seemed to me.
So she told me to contact another neuro. A pretty young guy but according to her a very good one.
Someone who really listens and someone you can go into discussion with. I think that last part is really important! She said he's a person I can definately tell everything I learned on this site.

I'm really looking forward to visiting this guy.
Don't know when yet. I think I'll call this Friday to make an appointment.

Cheers all, I hope you are all having some relief from the beast!
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Bob Johnson
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #1 - Jun 22nd, 2010 at 8:55am
 
The need for a cardiologist may reflect rules/laws in your country but it would be excessive in the U.S. The side effect of Verap. (below) can be Dx and handled by a decent primary care doc. Still, you might send the following to your doc and see....
==============
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.

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"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." 
==============
And,

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.






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Bob Johnson
 
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #2 - Jun 22nd, 2010 at 9:36am
 
A doc who will sit and listen to you is worth their weight in gold. For the oxygen, I keep a little cart in my garage with 8 E-Tanks. My oxygen supplier, APRIA, does next day service. When I'm down to only 2 full tanks, I call, the next day they drop off a six pack of full ones. I've never used the larger tanks.

Good luck with the new neuro, here's to hoping he really is a good listener.

Joe
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wimsey1
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #3 - Jun 22nd, 2010 at 9:49am
 
Quote:
She actually told me off when I told her I started drinking red bull. Lol, she's funny. Haha, anyways... She doubted it would help


I don't know about the others, however the advice I was given on this site, and to which I adhere, is the use of a caffeine/taurine drink at the onset or as close thereto as possible. I treat it like an abortive, not a prophylactic. Her reluctance to O2 and energy drinks may have more to do with her lack of knowledge concerning CHs, but if you hang in there with her, she'll learn. Blessings! lance
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #4 - Jun 22nd, 2010 at 8:28pm
 
your family dr. sound like a neat person and a good dr.  A doc who actually spends time listening and respects the opinion and viewpoint of her patients is invaluable...
good luck to you!!!!
It sounds like you're in a good partnership with your doc...
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #5 - Jun 23rd, 2010 at 2:54am
 
I think you are on the right track with your Drs.  I concur with your GP's suggestion of the new Neuro.  Having one you can discuss matters with is essential for good treatment.  Otherwise you are stuck with what they want to give you as opposed to what you have studied and believe you need.  Don't take no for an answer without a rational explanation for the no.

If you are unable to convince your Dr to let you try Verap instead of the Topomax you might consider Kudzu.  It is an herbal that is over the counter and some of us have had good success with it rather than the RX's.  I had some success with Verap for a while, and more with Lithium added, but I couldn't handle the side effects of the Lithium and didn't like the listlessness brought on by Verap.  Topomax and Depakote got no more than two dosages before I knew I couldn't handle them.  I ended up weaning myself off the Verap and started easing into using Kudzu until I got up to a full dose of Kudzu/day and was off Verap totally.  I found I was able to tolerate it MUCH better (the only side effect I noticed was a bit of gas) and I found I had as good a preventative as Verap and Lithium together.

Each of us is different, and each of us reacts to meds differently, so you will need to experiment a bit to find what works for you, and then will probably have to do it again and again as the beast morphs on you over the years.  That is why it is so important to keep reading up on things even when out of cycle.  Always have a plan of action in mind for when you need to change.

Jerry
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Re: Been to doctor to talk about O2, verapamil, rb etc
Reply #6 - Jun 23rd, 2010 at 3:53am
 
Thanks all for the good luck wishes!
I feel happy with my doctor indeed, it looks good with the new neuro. I'm looking forward to the first meeting and I'll post an update later.

Bob_Johnson, thx for all that info but the more I learn about verapamil the more scared I become of it. I'll make sure to have a decent talk about it with my neuro. I'll print out the info in your post just to make sure!

Callico, I didn't hear of Kudzu before. I can live with gas Smiley
Time to get revenge on some of my collegues  Grin
LOOL
Well, it might be worth looking into anyways. the more info the better. But I can't try everything at once. I'll wait until I'm back from the neuro but the kudzu is surely noted!

Thanks all for the support!
Cheers,
Ruben
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