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Topic: My latest Fight (Read 1687 times) |
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av8r3400
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My latest Fight
« on: Feb 24th, 2008, 8:33am » |
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Hello all. Re acquainting myself with this sight. I've been PF for almost three (3!!!) years... Until the 2007 holidays.
Since then, I've been up and down with a lingering cluster.
Meds:
(I have a very supportive GP, but am 'between' neuros right now - maybe seeing a new one in a couple of weeks.)
Imitrex as a very effective abortive (stat dose).
I've been attempting the Prednisone tapper starting at 60 mg first (60 4 days, 40 4 days, etc.). I have had to restart the tapper several times.
I am currently on a 80 x 5 day tapper, dropping by 10 every 5 days. Today I will drop to 60 mg. I WILL tapper off this time due to the fact that I've been on for so long and feel like poop for the side effects.
I started on 120 mg verapamil 2x daily. I've varied this in an upward trend over the last few weeks. I am now taking 240 in the morning and 360 in the evening.
My current situation is that I get a repeat visit every night from the beat that requires the Imitrex.
I'm hoping that the larger dosage of the verapamil will help these nightly visits.
For the last 20 years this has been my attack on the beast. This time the pred/verap have not done by me very well.
Thanks for listening. Please feel free to comment.
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Av8r3400
Episodic for over 20 years
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coach_bill
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gimmie my imitrex!!
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Re: My latest Fight
« Reply #1 on: Feb 24th, 2008, 9:19am » |
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sorry to hear your back in the ring, the beast always wants a rematch!! im just braking my cycle as well. i found that melatonin at night 6mg did the trick, kept the beast at bay so far. it will help the night hits, (well it has for me) your right imitrex works the best!! but it is posion to me, gives me headache the next day, and seems to keep the cycle going longer, but it could just be me. get what works the best for you, 02, imitrex, whatever?? gear yourself up and go kick some some beast ass.!!! good luck.. coach bill.
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Bob_Johnson
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Re: My latest Fight
« Reply #2 on: Feb 24th, 2008, 9:32am » |
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May need to increase your Verap. See following:
http://www.plainboard.com/ch/chtherapy.pdf
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)
=============
But this is new information since you were here last. Print and share with your doc.
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.
http://www.personalmd.com/news.jsp?nid=607285
"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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Bob Johnson
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hotprestwich
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Re: My latest Fight
« Reply #3 on: Feb 24th, 2008, 10:10am » |
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have you tried 02? i manage my cycle with just 02 and lots of coffee, that way you stay med free, the last cycle was my shortest to date 5 weeks, 
hope you find some relief
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GonnabeatemJudi
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Re: My latest Fight
« Reply #4 on: Feb 24th, 2008, 12:07pm » |
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I am also using melatonin, have 5mg tabs and I also take a benadryl at night. Seems the more caffeine during the day the better. It has been almost two weeks since the beast came back. I had been pf for 13 years. My headaches are on the other side of my head this time. Last time was right side. For first 9 days they came every night after I fell asleep. Now they are skipping a night but I get two a night! Not much sleeping going on those nights, I chug two or three REDBULLS to try to drive it back, no sleeping after that. Work sucks the next day, hell, life sucks the next day. T hen I saw something on tv about an adult and a kid that feel NO pain, and ya know what? For the first time, I was like, ok this cluster crap is not the worst thing. The poor little kids chew their fingers to hamburger when they are teething cuz they cant feel pain. I am trying to be tougher. Ice packs on the head and writhing on the bed. PF days and nights to all of you.
(Old neurologist joined a group and first available appt. is 3/5! Can you believe that crap? )
Judi - Richmond, Va oceanjudi@yahoo.com
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av8r3400
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Re: My latest Fight
« Reply #5 on: Feb 24th, 2008, 1:52pm » |
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Wow. Thanks for the replies. 
My friend Imitrex had not been giving up rebound attacks until today. Had a 8-hour rebound. (2 am visit from the beast, then he stopped by again at 10 am just to let me know he still cares.) $75 later he's gone, hopefully for a while. (The shadow is still there, I can still hear him lurking.)
My 240/360 verap dosage level started yesterday, so maybe this will still work. I really don't want to extend the prednisone again, but will go back to 80 mg tonight if today is a further bust. If I get another rebound today, I'll up it again to 80 mg tonight.
My real problem is that I am currently on a business trip, 1500 miles from home until Thursday. I've got sufficient verap and prednisone with me, but my supply of Imitrex is beginning to run short. (3 doses left.) I may have to try and train in a strange pharmacy here and fight for refills.
I had forgotten the high caffeine doses I was taking before to help with things. Over the last couple of years, I had been trying to eliminate it from my diet. I guess that idea is out again, now. That red bull stuff tastes so bad, but I guess I can give it a try too...
We'll see what tomorrow brings.
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Av8r3400
Episodic for over 20 years
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av8r3400
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Re: My latest Fight
« Reply #6 on: Feb 24th, 2008, 2:01pm » |
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Yuck, that RB is nasty.
Has anyone tried taking a taurine supplement (is that available?) and gotten the caffeine from something decent like diet coke or coffee?
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Av8r3400
Episodic for over 20 years
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E-Double
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Re: My latest Fight
« Reply #7 on: Feb 24th, 2008, 2:34pm » |
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try splitting your doses of trex....follow the tip (look at the link on the menu)
I always found that less is more and I could abort with 1/3 or even 1/4 of an injection and that left me with more meds which = less $ and actually fewer attacks
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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av8r3400
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Re: My latest Fight
« Reply #8 on: Feb 24th, 2008, 2:58pm » |
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on Feb 24th, 2008, 2:34pm, E-Double wrote:| (look at the link on the menu) |
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Sorry?
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Av8r3400
Episodic for over 20 years
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av8r3400
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Re: My latest Fight
« Reply #10 on: Feb 24th, 2008, 3:36pm » |
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What do you do with the partially 'spent' syringe?
Can it be put back into the holder in the stat-dose kit?
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Av8r3400
Episodic for over 20 years
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E-Double
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Re: My latest Fight
« Reply #11 on: Feb 24th, 2008, 4:17pm » |
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clean it with alcohol and reuse....as long as your not sharing...
it may get a bit duller but it will save ya a headache or 3
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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kevmd
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Re: My latest Fight
« Reply #12 on: Feb 24th, 2008, 4:49pm » |
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Hey....looks like we are in similar situations. Been pain free for about 4 years, I suppose because I was on verapimil the whole time. I am winding down my second taper of pred while upping to 1200mg verap a day. Hoping it works. Will consider a thid taper if needed. Hopefully i will not. Definitely use the imitrex taper bing recommended while your on the road. Good luck , keep us posted
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av8r3400
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Re: My latest FightPF
« Reply #13 on: Feb 25th, 2008, 6:28am » |
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 PF night for a change!!!
Maybe the 80 mg of pred, maybe the RB. Don't know. But 6 hours of sleep, I feel like a million bucks! Thanks everyone for the good vibes!
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Av8r3400
Episodic for over 20 years
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chewy
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Consider using the imitrex vials instaed of the stat doses.
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Guiseppi
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Re: My latest Fight
« Reply #15 on: Feb 25th, 2008, 10:26am » |
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If the verapamil is failing you, you might consider lithium, either in addition to the verapamil or as a stand alone preventative. I'm 48, weigh about 190, and use 1200 mg a day of lithium while on cycle. It blocks 80-90% of my head aches, really reducing the amount of imitrex and oxygen I use.
Side effects have been minimal, a little lethargy the first few weeks and you pee a lot at first. It requires a lot of blood work the first few weeks until you figure out what the therapeudic doseage is for you. I'm in law enforcement so very limited as to the meds i can take and still work. It's been the silver bullet for me.
Good luck to you, wishing you some pain free time soon.
Guiseppi
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av8r3400
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Re: My latest Fight
« Reply #16 on: Feb 25th, 2008, 3:51pm » |
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Thanks for the information.
I too, have to take care with the meds. I am a licensed pilot (Av8r, get it?) and the FAA does not like much for medications. (I don't fly for a living, I'm an engineer, but I fly in order to live sometimes.)
I have gotten their approval on the three, verap, pred and Imitrex. I cannot and will not take any of the anti-seizure meds due to the red flags and questions they raise.
I will question for the use of Lithium. This may be a secondary weapon for me.
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Av8r3400
Episodic for over 20 years
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Barry_T_Coles
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Re: My latest Fight
« Reply #17 on: Feb 25th, 2008, 5:06pm » |
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on Feb 24th, 2008, 2:01pm, av8r3400 wrote:Yuck, that RB is nasty.
Has anyone tried taking a taurine supplement (is that available?) and gotten the caffeine from something decent like diet coke or coffee? |
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Hi av8r3400
This is a piece I wrote back in 2006 about Taurine suppliments.
"Magnesium has been used by a few people here with varying results; the one problem with magnesium is that it’s not readily absorbed by the body and needs a promoter to metabolize to the full extent.
I started a trial initially with Taurine after reading of the good results people were getting with Red Bull to abort low level hits; after a couple of weeks on 26 April 06 I added Magnesium to the mix and agree with you that it takes about 4 weeks to get some sort of change, I have been recording my results in a blog that I will attach to the bottom of this post, after 4 months I got my biggest break since going chronic in 2004 39 days straight without a hit but still shadowing to varying degrees, I then had two low level hits in the one day and now I'm currently on 26 days free with no hits so far and hoping to break the last record.
After about 3 months I added Zink @ every three days.
My regime is Taurine 500mg & Magnesium 500mg three times a day at meal time and Zinc 25mg every third day.
My thought at the moment on this is that the regime may not work for episodic’s and may not work for all chronics but is working for me, I wouldn’t discourage episodic’s from giving it a try but I suspect that they would have to start 2 to 4 months prior to knowing that they are going to come into cycle. "
Here's a link to that thread if you want to read the whole lot.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;a ction=display;num=1162005663
Buy using this regime I have been able to achieve these results.
PF time 2-10-06 to 20-6-07 261 days
High cycle 20-6-07 to 9-8-07 50 days
PF time 9-8-07 to today 201 days
Regards
Barry
"I just copied this post from Garry's Girl across from the Medications Treatments & Therapies area as an addition.
If you're going to take magnesium, please include calcium supplements as well. They work together - and without the calcium, magnesium often creates diarrhea.
Also there is a warning about taking Taurine with verapamil:
"CAUTION: Taurine should not be taken if you are currently on a prescription for Verapamil or any other calcium channel blocker. Until more is learned, it is wise to assume that Taurine may increase the action of Verapamil, which could slow the heart excessively, causing irregular heart beats and possibly a heart attack. It is also not clear if Taurine would interact with other medicines like Sodium Valproate or Lithium." - http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Taurine
Good luck - and let us know how it goes!
Laurie "
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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av8r3400
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Re: My latest Fight
« Reply #18 on: Feb 26th, 2008, 6:51am » |
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2nd PF night in a row! (Cautiously optimistic.) 
60 mg prednisone (pm) - 240 (am) /360 (pm) Verap. - 1 RB (am). Will do the same for today. (Trying diet RB - Not optimistic...)
Maybe my rebounder on Sunday was the thrashing of a dieing cluster?? Maybe, maybe... It's going on 9 weeks now.
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Av8r3400
Episodic for over 20 years
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Guiseppi
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Re: My latest Fight
« Reply #19 on: Feb 26th, 2008, 12:05pm » |
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Keep going with the optimism...but.........prednisone, as low as 30mg a day, provides a complete block for me. As soon as i go off they come back. Many have shared similar experiences, it's a great transitional drug as it provides complete relief for many. I use a 10 day prednisone taper when I start my lithium now, buys me some time while the lithium kicks in.
Guiseppi
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av8r3400
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Re: My latest Fight
« Reply #20 on: Feb 26th, 2008, 6:05pm » |
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"... I use a 10 day prednisone taper ..."
What are the dosages that you use on your 10 day taper? How about anyone else? What is your prednisone routine?
The taper that I start with it 60 mg for 4 days, 50 - 4 days, 40 - 4 days, 30, 20, 10 and finally 5 mg for 4 days. That is usually good enough to take care of me.
This particular cluster has required me to re-start the taper several times. The last being Friday, 2-15, with a 5 day increments starting at 80 mg. (Then 70, now I'm down to 60 again.) I'm hoping to get off the prednisone soon, because I've been on it waaay tooooo long now.
I had been reluctant to increase my verapamil to more than 480 mg, but since I went to 600 mg things are looking up.
BTW, the diet RB still tastes terrible, but at least it's not all sugar.
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Av8r3400
Episodic for over 20 years
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Guiseppi
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Re: My latest Fight
« Reply #21 on: Feb 26th, 2008, 6:46pm » |
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I start at 60 mg a day. I step down to 30 in 3 days, 10 mg a day, then stay at 30 for about 12-14 days. Years of trial and error proved 30mg is my "break even" point. Then wean off at 10 mg a day to zero.
One side effect I get from the pred is when I go off, my back breaks out so bad it looks like a 16 year olds pimply face all over my back! Freaked me out the first time!
Guiseppi
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av8r3400
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Re: My latest Fight
« Reply #22 on: Feb 26th, 2008, 8:34pm » |
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on Feb 26th, 2008, 6:46pm, Guiseppi wrote:One side effect I get from the pred is when I go off, my back breaks out so bad it looks like a 16 year olds pimply face all over my back! Freaked me out the first time!
Guiseppi |
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Yeah, I got the prednisone face right now too. Sux.
(Funny side story, the first time I took prednisone I had the hiccups continuously for the first 3 days, plus the acne. Cluster, hiccups and acne. What else do you need?)
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| « Last Edit: Feb 26th, 2008, 8:37pm by av8r3400 » |
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Av8r3400
Episodic for over 20 years
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Superdave
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Re: My latest Fight
« Reply #23 on: Feb 27th, 2008, 8:37pm » |
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av8r3400
Today I battled those beasty shadows with something new to me. You might find easyer to swallow than Red Bull, at least I did. It's called " Stacker2 6 Hour Boost"
It comes in 2 oz. bottles that you can consume in record time and if they were'nt suger free they would probably be quite tasty. The little bottle seemed to do the job real well and I'm going to get more of them for myself.
I've been reading this thread and noticed you didn't care for the flavor of the red bull, ditto that.
PF days your way! 
Superdave
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Wow! you mean it's just in my head?
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alan
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Re: My latest Fight
« Reply #24 on: Mar 5th, 2008, 12:39am » |
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hi there,
i read your post and am curious. how long do you take 80mg for?. i'm currently getting hit and i'm far away from home. i have prednisone(ive been taking 60mg for 2 weeks) and verapamil but almost out of immitrex needles and be on a boat for 10 days! thinking of extending my prednisone and increasing dosage. thanks for any insight
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