When it comes to things like weighing risks of a course of treatment, how much voice do I have as a patient?

Example: Every doc I talked to about Verapamil believes the max safe dosage per day is 480mg. 480mg is plenty enough to keep me off the toilet but I can't say it does a lot to prevent CH attacks, however, after reading some of the articles I'd be interested in trying doses up to around twice that.

The doctor is worried that high doses like this might lower my blood pressure too much or cause some irregular heart beats. I'm sure that risk exists. But I also know what my quality of life is like without an effective preventative medication.

On the basis of medical ethics that doctors adhere to, can I insist that the risk be taken? Or am I spitting in the wind?

Another example is the oxygen: These people act like you're going to implode if you go a little overboard with the O2 - as if days and nights of agony are a much better alternative than whatever supposedly results from too much oxygen. I finally got my proper O2 prescription but had a hell of a time getting the LPM up to 15.

BTW, has anyone ever heard of anyone actually getting sick or hurt from overdosing on their O2?

After all of these years, I have never heard even a hint about problems with O2 - UNLESS the person has other lung related health problems.

I've spent massive numbers of hours researching this and the key is that we only use the high volumes of O2 for very short durations.

For what it's worth - 15 lpm won't even come close to stopping my bad attacks. That's what I tried doing for the first 10 years of being chronic, so I said that "O2 doesn't work for me."

Once I got to 25 lpm, I could see that it was going to work. When I finally got above 25 lpm, I suddenly got me life back. As Joe has said before, it's something close to a miracle.

The trick is to forcibly hyper-ventilate on pure O2 for just a few minutes, then crank it down to a normal breathing rate for a few more.

Marc

You have a voice. The problem is that doctors are given a role as a gatekeeper, and unless your voice can convince them that the best medical option for verapamil is more than 480 mg, then they aren't going to write a prescription to open that gate.  Most doctors know little about clusters, so it is often up to us to educate them - print out articles, highlight appropriate sections,  etc.  A good doc should eventually come around, but it often takes polite persistence and some work. If you make it clear that you are asking for what the specialists consider to be the most appropriate care,  they should work with you on that.

There are some summary articles on clusters that people link to from time to time, and there is pubmed.com - search for clusters and verapamil, and print out the abstracts that show the higher doses, the 'stepping up' procedure to gradually raise the dose, the various ideas about recommended heart testing.  Put this together into a plan that you can present to your doctor.

I have always had success by being civil and giving the doc MEDICAL literature which is mainline and supports the request.

Just posted, in Treatments, a message which has "Goadsby" in the title. Shows a 20% heart involvement with high dose Verapamil.

Two items you can print out and use:

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).
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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."  

Listen to Bob - he's our research guru...  Me - 90 mg of Verap puts my blood pressure down to the danger point so it's off my list of meds I can take, but we're all different. I had to find something else. You have to find what works for YOU. That's where you and your doc have to communicate.

As to the O2 - I agree with Marc... I used it for years and it was just OK - THEN I found out it was wonderful if used at high flow with a demand valve and used properly. Now I'm an O2 pusher all the way. Side effect - I don't think so. My neuro is just happy that something is working for me.

But the BIG secret is finding a doc (gp or neuro) who you can work with and who will listen to you and keep trying stuff till you hit on something that works for you. And then life is good....

Hugs BD :-*

We all agree on the "shoulds" and can tell each other what works all day. My main question is to what extent we have control over the gatekeeper. I believe in being polite and persistent too but the ratio of time face to face being polite and persistent with the doctor, waiting for them to come around and the time at home dealing with attack is not on our side.

In other words, how much leverage do I, as a patient, have over my the decisions about my treatment.

If I say "Yes, doctor, I understand there are some risks with that course, but I would like to take them and work with you on managing them because I believe the payoff would be well worth it in terms of my quality of life if it works." What is the doctor's obligation? I'm guessing absolutely nothing, his or her best bet is to let me suffer with the CH because if I had a problem from the meds he'd be afraid of a law suit.

In the end, the doc has the final decision because he, ultimately, carries the responsibility for the outcome.

Your option--if he won't budge--is to find another doc. It has happened any number  of time to folks here when they find encounter someone who simply does not understand the nature and treament of CH.

Medicine, in the end, is both science and an art form. Differing judgments are common and not necessarily a sign of a poor doc. Why it's sometimes difficult for us.

If your offer of information and acceptance of the risk is not acceptable--and that's IS his option--then you have to move on....

Simply put... a doctor can not be forced to treat you in a manner he/she thinks is not safe for you.  You can refuse treatment and/or find another doc, but you have no right to a drug unless you find a doctor who thinks it is in your best interest to take it.

This is why many of us had to find new doctors.

The first advice I got here was to find a new Dr. I did and things improved. My new doc & the neuro he eventually sent me to listen, read, learn, try things, and are kind.

Charlotte

You can voice all you want but if a doc doesn't want to listen then you need to find a different doc, just like the others said. Many yrs ago I found one at a pain clinic. He is no longer there but my gp seems to know some but not willing to go up on my Verapamil. At 240mg my blood pressure can be low (in the 50's/Dia) at times. I also have developed a skipped beat.

I think you hit a big one when you said law suit!
That's one reason medical care is so high. I hope the 'new reform' will bring that up!

Good luck!

campergal wrote on Jul 29^th, 2009 at 11:52am:

I hope the 'new reform' will bring that up!

I can't believe people still think the "new reform" will actually make anything better  - it certainly won't facilitate doctor shopping. Doctors are already in short supply, government run health care will do nothing to make the profession more appealing, just the opposite, and with the sudden increase in demand...

Anyway, back on topic: Its an interesting issue. I understand the reality of it perfectly, but I don't agree with it. Where risks can be managed and where there are arguably greater gains to be had by taking them, I think it should be the patient's ultimate decision even if the doctor doesn't feel comfortable going beyond a standard treatment - along with a waiver signed explaining the risks and releasing the doctor and anyone else from any liability if something goes wrong dues to the treatment.