Hi.  I just found out that my yearly, month-long cycle of headaches actually has a name.  I'm currently in the midst of the worst headache-year ever.  Yesterday, a neurologist put me on a 15 day course of prednisone (starting with 60mg/day).  I've heard lots of terrible stories about its side effects. Here are my questions:

1. Do most people feel that prednisone's benefits outweigh the side effects?
2. What side effects are most common?
3. How does a beer or two interfere with its effectiveness (and how badly does alcohol trigger headaches?)

 

Absolutely NO alcohol until you are over the active period/cycle.

Side effects with pred are uncommon when used for the few days we need it to stop a cycle. (Assumng that you are also starting a preventive, e.g., Verapamil, at the same time you are using the pred.)

Pred has a bad name from conditions where folks are using it for weeks. Overall, the good track record is strongly in our favor to break a cycle.

I've used prednisone..in short taper bursts like you're doing..for over 25 years and have suffered no ill effects. My appetite increases so I gain a little weight and I break out with acne when I go off. It provides 100% relief for me at levels as low as 30 mg a day. I use it while I wait for my lithium..my prevent...to take effect. That takes about 10-14 days.

It's NOT good for long term useage but is great when you just HAVE to have  abreak to catch up on sleep or get your preventative medication in your system.

And alcohol...an almost universal trigger for most when in cycle. Avoid it like the plague!

Joe

Hi Baxter and welcome.

I've been prescribed Pred for treatment of various medical conditions and having episodic CHs, when I go back into cycle, Pred is a life saver for me.

The side effects that I notice are:

- an increased appetite and thirst
- loads of energy to the point of almost feeling hyper at times
- some weight gain - maybe a pound or two which is usually lost when
 the Pred taper ends
- feeling impatient and irritable at times
- problems falling asleep or staying asleep
- concentration can be a bit scattered
- some swelling of my hands/knuckles

The side effects can be a bit rough to handle but knowing that the Pred usually shortens my cycle and usually lessens the severity of my hits makes taking the med worthwhile to me.

I also avoid alcohol during a cycle and for a while after the cycle is over as it is a big time trigger for me.

Hope the Pred provides you with some relief.

Like others, I have been on pred for various conditions, short-term usage, and it is a wonder drug!  I get a little more hyper (so the dog gets longer, faster walks and the house gets reorganized) and that's about it.  There are no long-term effects when used for these short-term periods.  My neuro prescribes for 18 days so that the Verap can take effect AND to abort flares.  

Absolutely no alcohol during your episodes, though.  I stay away from nitrites and MSG, too.  In English, that means no hot dogs, bacon, most lunch meats.  However, Rock Star and "sweets" are "in" and that works for me!  

I used Prenisilone for the first time this year. I did not have a taper and used it for 5 days. I had a hollow head feling afterwards and the Ch returned. BUT, it was worth it because I got rid of a bad stuffed up face and had 6 nights sleep.

Alcohol is sometimes the first time I know I am running in to an episode. I never drink during an episode. It makes it worse. I have learnt to see the signs now of an episode coming on for about 1 month ahead. If you can do this you can get started on the verapamil early and be on a high dose every day when the hits come. At least you can scale it down. I tend to find it works for me on about 480 to 600 per day. I wean off it at 40 mg per week nowadays.

Mind you the one thing certain about CH is nothing is; so a good supply of what you know works in the medicine cupboard all the year round is a good thing. I usually keep about a weeks worth of O2, a month's supply of verapamil and about 10 days supply of sumatriptan.

Best wishes,

Ellick.

Its a very good drug when used for acute episodes.
All drugs have a risk/benefit balance. If the medics outline benefits that outweigh the possible risks or the risks of not taking it outweigh its worth giving serious thought to trying it.

Its the only drug I have ever taken that stopped both the chronic migriane and cluster headache seesaw for a while. *sighs*

Beer and CH?
That is a really bad idea even for a masochist- I only had a teeny mouthful of communion wine yesterday, the pay back that hit means I am not even doing that again. The pain is just not worth it.

Thanks for all the helpful replies.  I have been avoiding alcohol and have been totally headache free since my first day on prednisone.  

Now I'm curious about the preventatives some people have mentioned.  My neurologist also gave me zomig inhalers to use as needed but didn't prescribe anything else.  Verapamil may not be an option because I have a heart abnormality.  

Any more advice/insight would be great!

B.

Ref. reply #7: good doc! Yes problems have recently been identified:
=========
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."  

OXYGEN, OXYGEN, OXYGEN....

The best abortive tool for 70% of us. Educate yourself and your Doctor.

Don

Another strong vote for oxygen as an abortive treatment. Read the great link to the left on oxygen, complete with pics to show you how to set it up. I can abort an attack in as little as 6-8 minutes using 02.

I use lithium as a preventative medication. I'm episodic, almost 49 years old. I use 1200 mg a day while on cycle, blocks 70-80% of my attacks. Historically it works better for chronics then episodics but I'm weird in so many other ways I guess that shouldn't suprise me. Might be worth talking to your doctor about.

Don't let the hollywood myths about lithium scare you. It doesn't turn you into a drooling, mouth breathing moron! The dose we use for CH is fairly low. Good luck!

Joe

I use oxygen, imitrex, prednisone and verapamil for different purposes.  The first few times the prednisone didn't have any noticable side effects.  The time before last I noticed I peed a little more often and had a hard time sleeping the first couple of nights.  This last time though I had the peeing thing, night sweats, increased heart rate, irritability, had a hard time staying asleep, etc... it pretty much sucked, but it worked for the headaches.  The pills also taste god awful.  

hi I AM ALSO NEWBE TO SITE BUT HAVE SUFFERED WITH CLUSTER FOR TEN YEARS AND THIS IS ALSO THE WORST YEAR YET, SPOKE TO HEADACHE CLINIC IN DUBLIN AND THEY REPORT HUGE INCREASE IN SUFFERERS! i AM ON MY SECOND DOSE OF PRED THIS MONTH FIST ONE STOPPED THE HEADACHES FOR THE TWO WEEKS BUT BACK THE CAME ONLY WORSE AND TWO WEEKS LATER DOC HAS ME TRYING AGAIN AS LAST RESORT, AND DOES NOT KNOW WHAT TO DO WITH ME IF IT DOES NOT WORK THIS TIME! i DID USE TO USE TOPAMAX AND THOUGHT IT WAS THE WONDER DRUG BUT IT HAS STOPPED WORKING NOW I AM GOING TO GIVE VERAPMIL ANOTHER TRY IT USED TO WORK AND THEN STOPPED SO MAYBE I MIGHT WORK BECAUSE IT HAS BENN A LONG TIME SINCE USING IT. i ALSO HAVE THE OLD RELABLE OXYGEN WHICH i FIND GOOD FOR MILD ATTACKS BUT NOT FOR OFF THE SCALE ONES AND THIS TIME HAS BEEN TRULY OFF THE SCALE...IN ALL THE TEN YEARS i WAS SURE THE PAIN COULD NEVER GET ANY WORSE BUT i WAS SADLY MISTAKEN, i BEGGED TO DIE...i REALLY DID NOT THINK i COULD LIVE THROUGH THE PAIN ANY LONGER AND THEN THE DAYS ROLL BY AND MY STRENGHT COME BACK TO FIGHT BUT SOMETIME IT SEEMS LIKE AN ENDLESS BATTLE NOW IN MY FIFTH MONTH IT IS TAKING OVER MY LIFE...IT HAS TO END SOON....SURELY!

Heya Murph...2 quick internet ettiquette lessons! Not all caps and break the paragraphs up, amkes em much easir to read! ;) Said with love! [smiley=hug.gif]

Read the link on the left titled "oxygen info" Many have found they were using 02 at too low a flow, using the wrong masks, and when they corrected how they used it, radically increased their success rate. Hoping it helps you!

murph wrote on Mar 4^th, 2009 at 5:54pm:

hi I AM ALSO NEWBE TO SITE BUT HAVE SUFFERED WITH CLUSTER FOR TEN YEARS AND THIS IS ALSO THE WORST YEAR YET, SPOKE TO HEADACHE CLINIC IN DUBLIN AND THEY REPORT HUGE INCREASE IN SUFFERERS! i AM ON MY SECOND DOSE OF PRED THIS MONTH FIST ONE STOPPED THE HEADACHES FOR THE TWO WEEKS BUT BACK THE CAME ONLY WORSE AND TWO WEEKS LATER DOC HAS ME TRYING AGAIN AS LAST RESORT, AND DOES NOT KNOW WHAT TO DO WITH ME IF IT DOES NOT WORK THIS TIME! i DID USE TO USE TOPAMAX AND THOUGHT IT WAS THE WONDER DRUG BUT IT HAS STOPPED WORKING NOW I AM GOING TO GIVE VERAPMIL ANOTHER TRY IT USED TO WORK AND THEN STOPPED SO MAYBE I MIGHT WORK BECAUSE IT HAS BENN A LONG TIME SINCE USING IT. i ALSO HAVE THE OLD RELABLE OXYGEN WHICH i FIND GOOD FOR MILD ATTACKS BUT NOT FOR OFF THE SCALE ONES AND THIS TIME HAS BEEN TRULY OFF THE SCALE...IN ALL THE TEN YEARS i WAS SURE THE PAIN COULD NEVER GET ANY WORSE BUT i WAS SADLY MISTAKEN, i BEGGED TO DIE...i REALLY DID NOT THINK i COULD LIVE THROUGH THE PAIN ANY LONGER AND THEN THE DAYS ROLL BY AND MY STRENGHT COME BACK TO FIGHT BUT SOMETIME IT SEEMS LIKE AN ENDLESS BATTLE NOW IN MY FIFTH MONTH IT IS TAKING OVER MY LIFE...IT HAS TO END SOON....SURELY!

Have you tried the O2 with a high flow rate?  How about imitrex?  Lithium?

Yes I have the oxygen on high flow rate 15 and have correct mask...it must just be me. I use imigran it is a life saver for me...but with attacks every other day its alot of meds.

i have used topamax which has stopped working ....have just gone back on verapmil while taper down on prednisone to see if that works..

i mentioned lithium to my doctor and he just thought i was mad so i dont see him perscribing that..may have to find a neuro. I have been told that a doctor who studied with oadsby is now practising in Ireland  so I might track him down he has experience with cluster.

the population in Ireland is small so not so many suffer from cluster and doctors who have heard of it are few and far between.

Another frustrating aspect of CH. Meds that worked last cycle, stop working this cycle. Don't be afraid to try meds again that stopped working, as they may prove effective again for later cycles. Some have found success by combining lithium and verapamil as their preventatives. Might be worth talking with your doc about. Hang in there, sounds like you're in a tough patch right now.

Joe