Hey there, madsurfer, and welcome. It sounds as if your doc is at least somewhat familiar with CHs. The suma injections are right on...pills are too slow, and even nasal sprays take longer than an injection does. Read the imitrex tip at left. O2 is the way to go, but I am concerned with the phrase "oxygen therapy." That sounds as if it's a COPD type use: low flow, nasal canula, etc. That will be useless. You need a high flow regulator (at least 15lpm, but 25lpm+ is better) and a good nonrebreather mask, one that lets in no room air at all. The key is to inhale as much 100% pure O2 as possible as quickly as possible. Many of us, myself included, have found we can abort most attacks within 3-5 minutes. Chugging down an energy drink right before hitting the O2 and then huffing the oxygen seems to help as well. blessings. lance

Hi

sorry thats just how the doc put it, i'm currently in the process of waiting for the letter to get to the GP from the specialist (i'm in the military, we have to wait)

I'm from the UK and have been to see about 8 -10 diferent doc's and this one seems to understand the problem and has experience in dealing with it, she refered me to the specialist to confirm everything was right and to see his response the course and meds she had me trying over the past year.

Now i'm waiting to go back and start getting the new meds but currently inbetween cycles so will have to wait till the new year to see if either or all has any effect on me

My only real concern is the suma injections, since the nasal sprays and hit n miss whether they work or not, if they work they only postpone the attack till later that day and it bite back with a vengance.

Couple of thoughts: important to use the suma--injection form is best for Cluster--and to inject at the first sign of an attack. Waiting for it to develop before using will reduce effectiveness markedly.

Use of Prop. dates the doc's knowledge of Cluster. This is an old med which has almost no benefit for Cluster (always the exception but...).

First choice to prevent/reduce intensity of Cluster is Verapamil.

Suggest you print out the the PDF file, below, and use as a discussion tool with the doc. Also print out the following re. use/dosing of Verapamil.
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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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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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Since this high dosing is so different fromwhat most docs know to be useful (for heart problems), they refuse to use this procotol or get defensive. To  be honest with them, also print out the following. Points to a known side effect, sounds scary, but, in realitiy is well managed if you know how to Dx.

Main point: Verap is first choice for Cluster.
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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.

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." 
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J Headache Pain. 2011 Jan 22. [Epub ahead of print]

Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.

Département d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002, Nice Cedex, France, lanteri-minet.m@chu-nice.fr.

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877 ± 227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003 ± 295 mg/day) were taking higher doses than those without EKG changes (800 ± 143 mg/day), but doses were similar in patients with SAE (990 ± 316 mg/day) and those with NSAE (1,011 ± 309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID: 21258839 [PubMed
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Finallyl, work with the UK OUCH group. They have much to offer, espeically around working with your health care system.

I still think O2 is the best abortive agent out there. Fast and no side effects... you are back to doing what you need to in 10 minutes. I can completely hide my CH with O2, disappearing for 10-15 minutes every once in a while was never a problem at work...
As for getting it prescribed... you might consider your own set-up with welder's O2. I would spend my last dime to secure an oxygen supply... it can change your life.

madsurfer365 wrote on Oct 22^nd, 2012 at 5:55am:


It's good she prescribed while you're out of cycle, time to stockpile the injections. 

You should check back with a call to your doc about the verapamil, but it's used to prevent hits.  If you're not getting hits, there is no use for it now.  When a cycle starts, you can get on it right away though, without waiting for a doctor's appointment, so it's good to have.  She should have given you a schedule about how to take it, too, ask about that.  There's a graduated way of increasing it until an effectivve level is reached, such as 120mg a week, something like that, and up to a certain level.


Quote:


It wouldn't seem needed until you are taking it.  She might want to check you at intervals as you ramp up for the first time to see if it is safe.  I had one the first time I got on it, to see how things were going.  Increasing and decreasing gradually is important.  Thereafter, my doc might check every year, things came out consistently okay, or he might check whenever I needed to sustain a high dosage for long periods.  It's a good precaution, each doc can be different, some may wish to monitor closely as you first take it.

There can be side effects the first time.  All of mine gradually disappeared with slow increments when increasing or decreasing.  At high doses, I know I might feel like a car driving with some low air pressure in the tires, but I don't stay there long.

I see why the ECG's.  Good you have a schedule to go by when you get back into cycle.

Remember though, your doc is willing to go with verapamil up to the certain level of 960mg.  This does not mean that much will be needed.  You're increasing increments every two weeks.  If you get to the 480mg level and things are okay that may be sufficient.  If at 480mg things are almost okay, adding an 80mg increase might be all you need.  You will have two weeks to know at that time, but no need to take more than is needed.   This is stuff you talk about with your doc.  I mean, it's not automatic you will get to 960mg.

My doc had seen me back in a time when I'd tell him about being on the floor pleading with God, you know, when things were bad.  He had me take a bunch of tests and was musing the results over in a folder when he asked me how I was doing on the new verap we had started.  I said, "seems to work, my feet are swollen though and I feel a bit tired." 

My test results must have been okay because he closed the folder and said, "Get outa here, take a hike.  I got people waiting that are sick."  It's his bedside manner telling me I'm fine.  He knew it was a big improvement and it was comparatively a LOT less to be complaining about.  He took my pain seriously, this was not pain, small potatoes.

So I took a long walk to go fly a kite off a short pier, and in time the side effects went away and I had my first time with a prevent that worked.   

You may have a similar experience when you use it.




Next up, oxygen to work on before your next cycle. 

Kevin_M wrote on Oct 22^nd, 2012 at 7:26am:

You must always consult your doctor, we can't know all that she has in mind for you. That said, for clusters it is ramped up at the first sign of cycle start, and then ramped back down after it ends...
Bob Johnson wrote on Sep 28^th, 2012 at 11:57am:


madsurfer365 wrote on Oct 23^rd, 2012 at 3:29am:

You are right on here... you can't know where it becomes effective if you are out of cycle... makes no sense.