My precious husband has suffered from this monster for over 20 years. He has never had an episode last more than 10 weeks. He has been in this episode since June 12th. He is up to 400mg of Isoptin daily, has gone through 2 cycles of steroids, and so much Imitrex injections we have both lost count. Over the past three weeks it seemed as if it was ending. But he had 2 attacks last Tuesday, and then he was okay. Then this morning at 5 am he had an attack, and then at 11 am another, then at 6;30 pm a third. He feels so hopeless that he has turned chronic. Has anyone ever experienced this? Has anyone ever gone this long and had small recurrences then it ended? Please help.... :'(

I've had a number of cycles similar to your husband's in the past. I would have what I thought were my peak headaches that signaled the end of my cycle, with a week or so of pain free days following. After that week or so I would then have another bout of CHs, lasting from a few days to a couple of weeks. On one occasion I went from episodic to chronic, stretching nearly 2 years with CHs every other day or so. I'm now episodic again.

From my experience, CH cycles change each time they come around. My cycles are typically 8 months long, sometimes less, with 2-6 month breaks in between. Sometimes during a cycle I have one CH every third day and sometimes I have them 3 times a day. For example, I've historically had very few night CH attacks, maybe 3 a cycle. Just this past Thursday, I began having two attacks a night and a light CH when I awake in the morning for work. Not sure why it changed, but I was prepared with my O2 and imitrex.

For me, O2 has been a life saver. I'm not a fan of prescription drugs and refuse to take any of the preventatives, I'll only use imitrex nasal spray to abort attacks at work. Once I set up my O2 system, my life changed dramatically. I now abort 80% of my attacks before they even have a chance to cause a problem. The others either sneak through at work, when I'm out, or get me at night.

So in my opinion, the best approach to this is to have a good treatment plan, both preventative (although I don't I have one) and abortive. This way no matter how your cycle changes, your husband will be able to match what the Beast challenges him with. Make sure you or him look through the site for other preventative and abortive approaches such as O2, the "123 pain free days" thread, and methods for night attacks. The "123 pain free days" thread has helped many and is a good preventative approach that doesn't use damaging prescription drugs.

Thank you so much. I am so grateful for you sharing with us.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
=========
A more detailed medical history would be helpful, especially around meds/dosing/duration of use.

If possible, a headache specialist is the best source of skill/knowledge. Too many people have spent too much time with docs who lack sophistication around headaches. It's a complex set of disorders.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=======

He may need more than 400mg of isotopin (verapamil). Whilst 360-480mg a day is a typical dose for preventing CHs, some people have gone as high as 1000mg.

Obviously discuss dose changes with a doctor first and allow about 10 days or so between dose level changes as it can take a while for the dose to become effective at the new level.

~Bob

Thank you for the helpful advice. Unfortunately where we live I would doubt to find any greatly informed specialists on CH. My husband has spoken with many neurologists and NONE of them have a clue about CH. I am very thankful he has gained so much information on this site from what has helped others suffering with this and that he is a doctor so he can tell THEM what to prescribe and what he needs.

Thank you Mike

Watching helpless wrote on Sep 20^th, 2011 at 10:58am:

~Bob Thank you for the helpful advice. Unfortunately where we live I would doubt to find any greatly informed specialists on CH. My husband has spoken with many neurologists and NONE of them have a clue about CH. I am very thankful he has gained so much information on this site from what has helped others suffering with this and that he is a doctor so he can tell THEM what to prescribe and what he needs.

Your husband is a doctor?

     Potter

Yes he is.

And sadly, we are so disappointed in how little the Neuro specialists are suppose to know. I thank God he is a Doctor and he can at least get the medications he needs. I can not imagine how he would be suffering if all he had to go on were the Neuro docs that had no idea what was wrong with him.

May wish to try a much higher dose.... This is a widely used protocol.
--
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.

And be aware of precautions:

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." 
========================================

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
===

See PDF file below.

---

So are you in Illinois or Egypt?

          Potter

It is truly an unfortunate situation, but a doctor who experiences first-hand what we go through could be a blessing. Not for him - for this larger community.

He is finding out how inadequate conventional medical treatments are for this condition. How traditional meds sometimes can only take the edge off of the pain instead of eliminating it while providing a whole host of wonderfully unpleasant and dangerous side-effects.

Once he's had enough, tell him to wander on over to:

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

Have him see what I and so many others are discovering as the best treatment available to us: tryptamines.

I, too, was a sufferer of this god-forsaken condition for 20+ years. Now, at worst, it is a mild inconvenience.

I'm serious about this - have him read about the god-given treatment for our pain.

Thank you Brew...all the information is so helpful. What is your opinion of Topamax for CH? My brother (who I did not have any idea he had CH until 6 days ago) went into remission a year ago after being prescribed it. I was under the understanding that was just for migraines, but I researched it and the is a lot of published information stating it is helpful....any comments?

Potter ~ We are in Cairo. Does it say Illinois somewhere in my profile?

I don't do mainstream pharmaceuticals for CH anymore. Never took Topomax, but I have a pretty good idea from the testimonies around here that there's a good reason they call it "Dopeymax."

Cairo is a city in Illinois, too - that's why he asked.

My experience..and that of SO many others with Topomax is not a good one.  I couldn't add up a simple column of figures, forgot important things, walked into a room and didn't know what I'd come in for, lost things etc. etc.  I stopped taking it after several weeks of thinking I was going senile.

  If your husband is a doctor, I wouldn't imagine these kinds of side-effects of this drug would be a huge NO-NO.

Watching helpless wrote on Sep 25^th, 2011 at 12:08pm:

Thank you Brew...all the information is so helpful. What is your opinion of Topamax for CH? My brother (who I did not have any idea he had CH until 6 days ago) went into remission a year ago after being prescribed it. I was under the understanding that was just for migraines, but I researched it and the is a lot of published information stating it is helpful....any comments? Potter ~ We are in Cairo. Does it say Illinois somewhere in my profile?

Does it say Egypt some where in your profile?

              Potter

Hi - I see that O2 has been mentioned, which is very important, and I'd like to add that what also tends to be extremely important is to NOT administer it in the low flow / rebreather way that unfortunately is still the most common way it is prescribed. That's ineffective for many of us, and especially for a 20 year sufferer such as your husband.

Much better results are had with high flow 100% O2 as described in the oxygen info link to the left.

As a 30+ year CH'er who has been helped tremendously by info and advice found here, I also endorse the D3 regimen:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And clusterbusters - here's a good article and video:

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

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

Oh and forgot to mention that most every report I've heard from CH'ers about Topomax has been negative, especially due to it's 'dopeymax' reputation, and that fact that so many who try it lose a lot of brain functioning while on it but don't obtain relief for their CH.

Yup, that's been my experience as well. The only consistent relief I have had over the past 35 years is with verapamil and high flow O2 coupled with an energy drink. Occasionally I use imitrex but it tends to be when I get "caught" without O2. Being a chronic this tends not to happen very often since I'm always looking around the corner at the next hit. But, since the regimen I mentioned is so effective, I can be lulled into quiescence and then I pay the piper and all that. Blessings. lance

Thanks for all the info on the Topamax. I could not imagine he could take it either, but when you see someone suffering so badly, you grasp at ANYTHING that might relieve the pain. To the extent that if someone said eat green jell-o 8 times a day standing on one foot gets rid of the CH, I would probably plead that he try it, at least once... [smiley=slowlaugh.gif]

Once the pain goes, you are able to think more clearly and logically eliminate those treatments that are not suitable for the individual person suffering. Just as an example, O2 works for so many people giving them a lot of relief, but when he tried it, it did not work. I am learning this condition is a lot of trial and error. Very frustrating.....very, very frustrating.

Also, thanks for the geography lesson...I guess I assume when I say Cairo, it is understood as the Cairo in Egypt...I wasn't aware there was a city in Illinois with the same name. When asked where I lived before, I never needed to clarify the Country (no states here). I will update my profile to avoid future confusion...

One of the reasons we asked which Cairo, is that Egypt is so far away from all of us here and we don't know what type of medical doctors, treatments and pharmacies you have there.  Cairo, Ill. in the United States is a WHOLE different ball game for us.  We can help you with American laws and ways of getting what you need here.  Egypt...not so much.


That said...support for you is universal and we're here for you in any way we can. 

I can really feel for your husband. I have had these headaches for 19 years. I was finally diagnosed with chronic cluster headaches and trigeminal neuralgia about 4 months ago. My headaches almost never stop. I have been to the point of suicide several times. I have taken Topiramate, Depakote and Neurontin. None of these helped at all. I also suffer from ovarian cysts and was given a script for Percocet. One wonderful side effect of the Percocet was that it stopped my headaches. The horrible side effect is that it is extremely addictive! I was only able to get about a week's worth. Doctor's won't give it to you. My new doctor has me on carbamezapine which we are hoping will help. All I can do right now is take an Imitrex shot, Phenergan for the nausea, put an ice pack on my head and pray for the worst to stop. When I go to the ER they have put an Oxygen mask on me and used the "migraine cocktail" of Toradal, Compazine and Benedryl via an IV Push. It has helped on occasion to lessen the severity. I hope he finds some relief soon!

...and once you get sick and tired of never-ending merry-go-round of pharmaceuticals, go here:

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

Quote:

Just as an example, O2 works for so many people giving them a lot of relief, but when he tried it, it did not work.

Please do not think I am being critical here...it is not my intent. It's only that while some find O2 to be ineffective, usually when we hear this it means the flow was too low (15lpm or less) or the mask was ineffective (not a true rebreather with both valves closed on breath intake) or delivered through a nasal canula. If any of this is what your husband tried, no, it probably would not have worked. Our method of O2 intake is specifically designed for CHs, while most docs and therapists are still working off of the old COPD model. Just something to be curious about. And yes, it is trial and error. Good luck and God bless. lance