Hello all,

New member to site, but have visited in previous years whe going through a cluster episode.  It is a great thing to have "real" experts to get information from, and people who can actually relate to what it's like to console with.  36 years old next month, and been having episodic cluster headaches for around 20 years.  From what I remember, first few were always around a month long, would get headaches approx every other day, and would go away for about a year.  More recently, been longer episodes but 1 1/2 to 2 years between.  First 10 years was prescribed Fiorocet, and I think it is effective for some, but did nothig for really bad ones.  Don't like taking narcotics.  In April 2003, a Dr prescribed prednisone and wiped them out completely, and I thought "awesome, take prednisone every 1-2 years for a couple weeks"  Well, 5 months later another episode, which was the quickest they ever came back, took pred again, then 3 months they returned, predisone again, then 1 month, predisone again and then they were back as soon as it wore off realized the headaches were going to find a way to happen.  Toughed through my longest episode up until then, which was 1 1/2 months and was in Aug-Sept 2004.  In Nov 2005, for some reason had the mildest epsiode, 3 weeks and no real excruciating pain, thought it was due to a "water treatment" cure I found online which I would just pound glasses of water.  Well, in jan of 2007 in my next episode, the water didn't work, and lasted two months, by 1 1/2 months finally saw nuero for first time, gave me imitrex and oxygen.  Both just delayed the headaches temporarily, and only tried a few times b/c episode ended.  Didn't like tightness in chest from imitrex and got rebound 2nd time I used it.  I find some of the posts about O2 very interesting b/c was follwing nuero's instructions at 12 lpm, and looks like maybe should have been following some of the techniques (25+ lpm) on here so that is encouraging.  Started current episode mid April this year and still going strong.  New nuero, prescribed fiorocet, verapimil and melatonin.  Haven't tried verap b/c some of side effects are scary, (heart stuff), and haven't tried melatonin even though this entire episode has been nocturnal b/c dont like to mess with my sleep and seems like it is not often effective, This entire epsiode being nocturnal is unusual ususally my patterns of time of day would be consistent for about a week and then switch. Anyway, hello to everyone again and I appreciate all the good information shared on here, much better than what I get from Drs and medical websites.

Best

Floicet is about useless. Pred taper is good to get other stuff going, but the CH will usually hit back as soon as you quit taking it.

Melatonin (I think) is great for the night hits. Been on it for years (I"m chronic). Keeps the night hits away for me. I take 15-18mg before bedtime. It helps you get thru the REM sleep where the CH hits.

O2 is the "drug" of choice around here to abort. High flow regulator (15-25 liters per minute) with a non-rebreather mask works for about 70% of us.

I use cafergot (don't like the side effects of imitrex) when the O2 doesn't work (rarely) for aborts, but mostly the O2 does the trick.

For prevents - it's a crapshoot - each of us has to find his/her own cocktail and we're all different. I take topamax and it's been my magic cocktail for the past 10 years. I don't have the side effects that some have reported but I take the WHOLE dose at night before I go to bed instead of the way it's usually prescribed. I've never had the dopey feeling that a lot of people have reported. Guess I sleep it off.

But whatever you take - you have to give it a chance to work. A couple of days isn't a chance - a month is.

Narcs do NOT work and may cause rebounds which are usually worse than the original. Be careful with them.

Hope it's a short cycle for you.

Hugs BD :-*

Welcome to the board. Prednisone works one of 2 ways for CH. For some, a short burst of prednisone will actually abort a cycle. For others, like you and I, it works as a block while you're on it, but the CH returns with a vengeance as soon as you go off of it! I use a 10-14 day pred taper while I'm waiting for my prevent, lithium, to kick in.

The preventatives do have a number of potential side effects, it's always measuring which devil you hate more, the side effects of the meds or the beast! A purely personal choice each of us gets to make.

I found the same problem you had with oxygen in the early days of trying it. The 02 would abort the attack, but 10-20 minutes later it'd be right back. Now I pop an oral cafergot as soon as I start the oxygen. The 02 beats the attack down, the cafergot buys me up to 12 hours pain free time. Others have posted similar results from downing an energy drink as soon as they get on the oxygen. Might be worth a try for you.

Welcome to the board, hoping you're nearing the end of the cycle!

Joe

Thanks Barb and Guiseppi,

It sounds like the o2/cafergot combo is effective for the both of you.  I will call my nuero tomorrow.  Right now 1am and slowly creeping up the kip scale, and hoping this one doesn't last too long.

I hope that it does not last long for you either.

Wishing you PFD.

Iddy  

Quote:

Narcs do NOT work and may cause rebounds which are usually worse than the original. Be careful with them.

One of my early doctors prescribed Stadol NS. That attack was the worst ever, would have been a Kip 11 if the scale went that high. I could not get up off the floor to call 911.

Welcome to ch.com. I  am glad you got a prescrition for O2, it works about as well as Imitrex injection if you get on the O2 fast enough. My doctor also has me on verapamil 180 mg twice per day. I have high blood pressure so verapamil takes care of that too.

Hello,
I've been battling this for many years (eposodic).  My last battle was the longest ever for me, about 4.5 months, followed by my longest break ever, 3+ years.  Like dmaestro, I am in the middle of an episode which started mid-April.  My response is to dmaestro's statement that these things are going to come, and no matter how hard you try to stop them, they are going to happen.  I have had success with Immitrex and O2, then began to experience terrible rebounds.  Usually, I will have the longest amount of time between headaches when I take narcs or just ibuprofen.  They do almost nothing and the headaches are absolutely brutal, but I'm at least "rewarded" with 24 to 36 hours of CH free time.

I've tried Treximet a couple of times this time around as it is new.  It works about like Immitrex, only I've had significant side effects experiencing pain and stiffness in my jaw, neck and upper back for up to 3 hours after the CH.  

Unfortunately, I have no recommendations and little hope of doing anything other than trying to deal with the CH's until they are gone.  I've tried some standard treatments, had some periodic relief from some things for short periods of time, but there seems to be no pattern to help shorten the cycle or get around a CH that wants to happen.  On top of that, the nuero's are clueless.  Glad to have you all to listen and to search through for potentially helpful nuggets.

Hi,

You and I have very similar stories as regards age and length of time we have suffered from the beast and the increasing length and severity of  cycles. Two years ago i was prescribed Prednisone near the end of my cycle  it finished of the cycle and i thought 'great that's it my silver bullet'...!

I took it at the start of this cycle and as soon as i finished my taper WHACK I started getting bigger hits than ever.After being misdiagnosed for years I am finally getting some proper treatments. The advice I received about 02 from this site has changed my life during cycle. I know longer fear the beast. I crank my regulator up to 15lpm and the little shit is gone within 5mins. I also will have to find a preventative for my next cycle as this is something my neuro did not offer me I just got the pred and imigran injections.

If you can get a regulator that has at least 15lpm then hopefully you to will no longer have to fear this little "bollocks" of an infliction...!


Lefty...!

Lefty,
I thought O2 was my answer after the first 2 uses.  It still makes my CH go away pretty quickly, but it has produced rebound CH's within an hour or two.

Right now, afraid to go to bed.  Seems as soon as I go to sleep, it starts.  Not really sure what I can do right now to stop it from coming.

PB

Guiseppi wrote on May 31^st, 2009 at 11:40am:

Others have posted similar results from downing an energy drink as soon as they get on the oxygen. Might be worth a try for you. Joe

I never heard of this before. I will keep a healthy supply of Red Bull in my office. Thanks!

Jay

ptownballer wrote on Jun 6^th, 2009 at 11:35pm:

Right now, afraid to go to bed.  Seems as soon as I go to sleep, it starts.  Not really sure what I can do right now to stop it from coming.

PB try the Melatonin. It seems to work wonders for many on this site.

Hopefully this will offer you some relief from those nasty night time hits.

Lefty...!

ptownballer wrote on Jun 6^th, 2009 at 11:35pm:

I thought O2 was my answer after the first 2 uses.  It still makes my CH go away pretty quickly, but it has produced rebound CH's within an hour or two.

What's the flow rate? Type of mask?

Hello...I am also new to the site...been researching for months and got very conflicting info...especially when it comes to coffee..It seems for most coffee is a friend...But I think it's a trigger for me. When I eliminate it from my diet, the CHs go away within 2-3 weeks. When I start drinking again, they return within 2-3 months after, with a vengence....
I recently started a new period last week, been free of the beast for a little over a year. I got a new job, and started drinking coffee again in February. Last nite I had a 9-hour BATTLE ROYAL with the demon. Couldnt even go to work this morning...
Can anyone tell me that it is the coffee for sure that is bringing the CHs back?
Also, I DONT HAVE HEALTH INSURANCE and it seems that O2 works for alot of folks. Is there a cost-free or low-cost way of obtaining that treatment?
Thanks....

Suffer4Nothing wrote on Jun 8^th, 2009 at 5:29pm:

I DONT HAVE HEALTH INSURANCE and it seems that O2 works for alot of folks. Is there a cost-free or low-cost way of obtaining that treatment? Thanks....

I believe the caffine /coffee route may not work for everybody.It's a matter of trying different angles and seeing what works for you. I know many use welders 02 as a cheaper alternative to medical. You will have to source yourself a tank and regulator with a non rebreathing mask that can accommodate at least 15lpm.

Have a look in the medications and treatment section and this should be discussed in greater detail. Sorry to hear the beast is playing havoc with you, hopefully you get sorted with the 02 shortly, as it does work wonders.



Lefty...!

A few observations about your meds use:

1. The effectiveness with Prednisone at breaking a cycle is why it's a major tool to use at the start of a cycle. BUT we know that attacks will return rapidly when it's stopped and this is why--during the period of using Pred--we start one of the standard prevention meds. Verapamil has the longest track record for effectiveness but it does take a number of days to become effective (and dosing adjustments are routine). Therefore, standard to take both meds at the same time.

Your expressed concern about Verap safety needs to be balanced with the clinical evidence/experience. This report gives both sides of the equation but, if you will read carefully, you see it's possible both to catch the side effects early and they resolve quickly. (See the last few lines in the last paragraph of the second portion of the article.)
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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.  

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The article summarized in layman terms from the website below.

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"Cluster Headache Treatment Poses Cardiac Dangers  
Off-label use of verapamil linked to heart rhythm abnormalities, study finds  

By Jeffrey Perkel
HealthDay Reporter  

MONDAY, Aug. 13 (HealthDay News) -- People who use a blood pressure drug called verapamil to treat cluster headaches may be putting their hearts at risk.

That's the finding from a British study that found heart rhythm abnormalities showing up in about one in five patients who took the drug in this unapproved, "off-label" way.

"The good news is, when you stop the drug, the effect wears off," said study lead author Dr. Peter Goadsby, professor of neurology at University College London. "So, as long as doctors know about it, and patients with cluster headaches on verapamil know they need EKGs [electrocardiograms] done, it is a completely preventable problem."  

The study is published in the Aug. 14 issue of Neurology.

In a review of the medical records of 217 patients given verapamil to treat their cluster headaches, a team led by Goadsby found that 128 had undergone an EKG, 108 of which were available in the medical records.

Of those 108 patients, about one in five exhibited abnormalities (mostly slowing) in the heart's conduction system -- the "natural pacemaker" that causes the organ to beat. Most of these cases weren't deemed serious, although one patient did end up having a pacemaker implanted to help correct the problem. In four cases, doctors took patients off verapamil due to their EKG findings.

One in three (34 percent) developed non-cardiac side effects such as lethargy and constipation.  

"It is a very nice piece of work, because it provides commentary on a boutique [that is, niche and off-label] use of the drug," said Dr. Domenic Sica, professor of medicine and pharmacology in the Virginia Commonwealth University Health System. He was not involved in the study.

Cluster headache affects about 69 in every 100,000 people, according to the Worldwide Cluster Headache Support Group Web site. Men are six times more likely than women to be afflicted, and the typical age of onset is around 30. According to Goadsby, the disease manifests as bouts of very severe pain, one or many times per day, for months at a time, usually followed by a period of remission.  

Verapamil, a calcium-channel antagonist drug, is approved by the U.S. Food and Drug Administration for the treatment of cardiac arrhythmias and high blood pressure. The medicine is typically given in doses of 180 to 240 milligrams per day to help ease hypertension.  

However, the patients in this study received more than twice that dose for the off-label treatment of their cluster headaches -- 512 milligrams per day on average, and one patient elected to take 1,200 milligrams per day. The treatment protocol involved ramping up the dose from 240 milligrams to as high as 960 milligrams per day, in 80 milligram increments every two weeks, based on EKG findings, side effects, and symptomatic relief.  

Many patients may not be getting those kinds of tests to monitor heart function, however: In this study cohort, about 40 percent of patients never got an EKG.  

Given the typical dosage, Sica said he was surprised so many patients were able to tolerate such high amounts of the drug.

"When used in clinical practice for hypertension, the high-end dose is 480 milligrams," said Sica. "Most people cannot tolerate 480."

Dr. Carl Pepine, chief of cardiology at the University of Florida, Gainesville, was also "amazed" at the doses that were tolerated in this study. "The highest dose I ever gave [for cardiology indications] was 680 milligrams. This might give me more encouragement to use the drug at higher dose," he said.  

But Sica said he thought cardiac patients -- the typical verapamil users -- were unlikely to tolerate the drug as well as the patients in this study, because verapamil reacts differently in older individuals, who are more likely to have high blood pressure, than in younger patients. The average patient in the United Kingdom study was 44 years old.  

According to Sica, two factors would conspire to make older individuals more sensitive to verapamil. First, the metabolism of the drug is age-dependent, meaning that older individuals would tend to have higher blood levels of the drug, because it is cleared more slowly than in younger individuals.

Secondly, the conduction system of the heart (the natural "pacemaker" becomes more sensitive to the effects of verapamil with age, Sica said.  

"It's likely that an older population would not be able to tolerate the same dose," he concluded.  

According to Goadsby, the take-home message of this study is simple: Be sure to get regular EKGs if you are taking verapamil for cluster headaches. Goadsby recommended EKGs within two weeks of changing doses, and because problems can arise over time -- even if the dose doesn't change -- to get an EKG every six months while on a constant dose.  

"The tests are not expensive, and they are not invasive," he said. "They are not in any way a danger to the patient."

For the most part, Goadsby said, should a cardiac problem arise, it will typically go away once the treatment is halted."  
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2. Imitrex: chest tightness is not  unusual but is not a sign of impending heart problems. It has been reported and examined for a long time with the conclusion that this is a safe med.
        Rebound with 2 uses is highly unlikely. What can occur is that an attack of long duration can "outlive" the effective duration of the meds effectiveness. Only working with your doc can resolve this issue, usually by shifting to a triptan with a longer effective life. Given the extraordinary effectiveness of this class of meds, they represent one of your best bets--if you work with your doc.

3. Melatonin: one of the most benign products we use. May or may not affect sleep--an inconsistent response--but still worth a try when you have a night time attack pattern.
     If you can get it, 1mg. ergotamine tab one hour before bed is an old approach which often blocks night attacks.

4. Overall, it's critical that you stick with one medical regimen, making needed dosage adjustments, giving each med time to become effective (notably after a dosage change), before you make a judgment that it's not effective. Impatience is self-defeating.

5. Hope you are working with a headache specialist. Our messages are filled with problems neuros who lack education/training in treating complex headache disorders.
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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.  Call 1-800-643-5552; 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.
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6.
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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