Hello Everyone
I have been using information from your site for years but remained a "lurker".  I am just ending an episode today and have used your site again and think it's time to join in the chats. 

I am 42, happily married with 3 great kids.  My CH began in the fall of 1997 (when I was 28) and I have had them every other year since then.  Usually the fall, and usually only for 2 weeks.  They were misdiagnosed for years until I basically diagnosed myself and then an emerg dr. sent me to a neurologist who confirmed me as "textbook".  He also called me lucky because my episodes are short. 

My HA always begin without warning at night, usually 1 hr after i sleep and always while i'm dreaming.  Left side always, behind my eye, radiates into my temple and along my upper jaw.  Sinuses sting, nose runs, a piercing pain that lasts anywhere from 30 min to 6 hrs.  HA get more intense and more frequent within the 2 weeks.  Eventually they fall into a pattern of about 4-6 a night and like clockwork always at the same time. 

It tooks years of many different drugs to find anything that worked.  Thanks to your wonderful site, I now use Immitrex nasal spray and Oxygen.  Immitrex worked wonderfully for me for the first week and then at some point it burns/stings and makes the HA more intense.  At that point, it will no longer bring relief.  I finally tried oxygen this time........how wonderful is this gas!!!!!  I find relief with only 8L/min after about 5-10 min.  Thank you, thank you, thank you....

My family Dr. is useless and actually laughed at me when I suggested oxygen therapy.  It took an emerg dr ( I usually land in emerg by the end after 2 weeks of overdosing on drugs like percocet that do not work, etc.) to help me get it in my home.

This year, my CH began at the start of summer which is out of my normal routine and lasted 23 days instead of 14ish.  I'm worried that my remission is getting shorter and CH getting longer.

My dear friends and family all trying to help me, suggest that my life is too "stressful", i try to "do too much", or i must have an allergy, or i am not "praying enough".  I spent a day crying over all of these comments that suggest I do something to bring this upon myself. 

So here is my question ( because I think this site is the best source of info going these days!) :  Do you think stress brings on an episode?  If not, are there any other signs people get before an episode begins to give you warning?

Thank you again for being here.  I too cried the first time I read posts clearly describing how I feel.  And although my episodes are short, they feel like a lifetime when I'm lying in bed at night, moaning and groaning with cold cloths on my face and my finger piercing my temple looking for some relief.......Amy

Oh!, my long missing Amy.....  (She was my cat for 20-yrs.) <bg>

The role of stress is so dependent on the individual's judgment that I can't put much emphasis on its role in Cluster. If you think it affects you--that's all you need to know.

As it affects your Cluster experience: you can protect yourself via: 1. establishing a treatment program which experience says works for you; 2. requiring working with a doc who you trust to have the knowledge/skill to help you; 3. accepting the reality that Cluster regularly shifts its features so that you may have to rework your treatment plan from time to time.

Regardless of the source of your stress, you can do a good deal to help yourself by learning how to practice/train your mind on how to deal with both the stressor and your response to it.

This approach takes some discipline/time to develop the skills, but the track record is excellent. At least give this approach a look/consideration:

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

Welcome to the board! The role stress plays varies from Ch'er to CH'er.....I've never heard of stress starting a cycle. But while in cycle, for some, sustained stress will increase the likelyhood of an attack.......(me!!!)...for others, as soon as they relax.....Saturday morning!!!...they get hit. You'll see their avatars saying stuff like "never, ever. ever relax!!!"

As to your treatment regimen. CH is the worst possible malady to ignore while off cycle. It's nature is to ALWAYS come back, we need to enjoy our pain free time, and always be ready to do battle. Now is the time to establish a relationship with a headache specialist neurologist. That way as soon as a cycle starts, you can make one call and get your oxygen, imitrex and transitional prescriptions filled, as well as getting you started on a good prevent.

Transitional meds...prednisone provides up to 100% relief for many CH'ers. It should not be taken long term but works great as a transitional med while your prevent builds up. Most prevents take 10-14 days to become effective, the pred taper will give you some relief while that happens.

You hadn't mentioned any prevents, Verapamil, Lithium, Topomax, all stufff a headache specialist neuro can help you with. I use lithium while on cycle, at 1200 mg a day it blocks 60-70% of my attacks.

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

Take a few and read this link. Experience has shown higher flow rates can dramatically shorten abort times. Might be worth an upgrade, also make sure you're using the oxygen to its maximum effectiveness.

Have you tried energy drinks yet as an abortive? Rock Star, MOnster, any containing caffiene AND taurine. Many can abort or really reduce an attack using these.

So glad you checked in, wishing you a short cycle this go round.

Joe

Hello Amy

  I assume you have a non-rebreather mask (the one with the bag).  If you do, it probably has a 1 litre bag.  First, go on ebay (medical oxygen regulators) and order a 15 lpm regulator ($30) . . . MUCH more effective than the 8 lpm reg (which is what I started with also), then get yourself an Op2mask (links on this site) with the big green 3 litre bag . . . designed for clusterheads and allows you to hyperventilate with the 02 . . . even faster abort time.   Many recommend the 25 lpm regulator, but I am slim and have no problem hyperventilating with the smaller reg.

  I use water therapy (see "water X 3" . . . link on left) as my preventive, and have since 5/04,  when other med conditions required that I consume large quantities of water . . . frequency/intensity of attacks reduced where I could easily abort with the 02.  Water therapy IS NOT easy to do and maintain on a regular basis . . . and I really paid (in pain) for slacking up on my water a couple of months ago . . . am back on course now and am able to abort in minutes with the 02.

  I was able to go to Nashville last weekend and finally meet some of the folks I've been talking to on this site since my wife found same, after 13 months of mis-diagnosis, non-working meds and multiple daily/nightly hits.  My first response was to choke/tear-up, much as I did when I came here and found others who TRULY understood the pain of the beast.  If you ever get the chance to meet other CHers in person . . . take it!

   Be Safe,   PFDANs

     Richard

Quote:

My dear friends and family all trying to help me, suggest that my life is too "stressful", i try to "do too much", or i must have an allergy, or i am not "praying enough".  I spent a day crying over all of these comments that suggest I do something to bring this upon myself.

Hi, Amy. Friends and family mean well but unless they have this affliction they have no means by which to judge your pain. You may in fact be too stressed, doing too much or not praying enough but please realize these activities bear little impact on your cycle...except maybe the stress. Stress can be a trigger but is not the cause. Big difference. CHs are primary headaches, not secondary to stress or smokinlg or alcohol. These things can kick one off but so can REM sleep. It's good to identify triggers and try to avoid them but the beast will attack at will. Line up your armor and battle the beast. Blessings. lance

Thank you everyone who took the time to respond and for your thoughful wishes.  I feel like I've found 1000 new friends here and would definitely travel to meet some of you but I live in London, Ontario, Canada and would have to plan ahead. 

I will read more and try some of your suggetions for next time.  My cluster ended after 23 days.  I've just woken up from my second full night sleep and shadows are disappearing too.  What a great feeling.

I wish all of you short clusters and long remissions.

One other question....I've seen the name Verapimil often...would you start this when a cluster begins?  The year I think i'm due a cluster?  Are there any side effects worth worrying about?  How much?  Any help is great...my first task will be to find a Dr. who acknowledges this disorder for me....my Dr. is simply useless. 

Thanks!  Amy

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.
=======================
Print out the PDF file, below, and file away for future use. It's a good to use as discssion tool with any doc.
====
Verap is the leading preventive (re. precedin article) and is safe. Biggest "issue" is, sometimes, constipation--but that easily controlled.

In rare case it can cause a heart block but monitoring is the protection: no need to avoid it unless you have an established heart disease. Also print out following. 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.
-------
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
======
When to start Verap? If you have a very rigid cycle, you can start it a couple of weeks before the expected start day. More realistically, begin with first attack: and many begin to get early signs of an emerging cycle (something you may experience/learn) and that could the signal to start using.

---

Bob's posts are long and technical,  ;D Print them out and start a notebook with them! They have the research doctors will respect when you're suggesting new treatment protocols.

The headache specialist neurologist is your best bet at a knowledgeable doc. GP's get a couple of hours in doctor school to cover ALL headache types. It's simply not enough. Garden variety neuro's are sadly not much better. Your goal is to find a knowledgeable doc, or absent that, one who will LISTEN to you and what you bring them.

With as short as your cycles currently are, a simple 2-3 week prednisone taper might be all you need for your current cycles. That being said, continue to educate yourself as CH is notorious for morphing constantly, so don't be too suprised by change.

We're glad you found us too. ;)

Joe

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

thank you so much....Bob and Joe.  You have no idea ( actually you likely do!) how alone I feel when I am dealing with my demon (as I have always called it before reading that here as well).  I intend to print, read and make some phone calls to better prepare for the next round.

In the past, I have been so relieved to see it all end that I do not want to talk about or think about the HA again.  However, I've experienced it enough tiimes now to know that it's not going away for good, just for awhile.  I need to find better help. 

Thank you so much for taking the time to read and respond.  So glad I've joined....Amy ::)

In the past, I have been so relieved to see it all end that I do not want to talk about or think about the HA again.  However, I've experienced it enough tiimes now to know that it's not going away for good, just for awhile.

For years that's how I dealt with it. I was convinced even thinking about CH could trigger a cycle. So off cycle I stayed away from the board, and did no planning. Then when the beast returned....and we all know he will....the next cycle would catch me flat footed and un prepared. It's a common response to this hell early on. I get the feeling you'll be a welcome addition to this board with your enthusiasm. Hope to see you around for a while....and more importantly, pain free soon.

Joe