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Topic: Maximum Verapamil dosage? Other Preventitives? (Read 1194 times) |
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Major_Headcase
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Maximum Verapamil dosage? Other Preventitives?
« on: Jan 3rd, 2008, 1:53pm » |
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Dear all,
I've had episodic CH for 7 years now. Each year I have had to take more Verapamil to achieve PF status. Year one I got relief from 360mg/day (if I remember correctly) combined with a prednisone blast/taper.
Last year I needed 840mg/day of Verapamil and had to fight my GP to prescribe that amount. This cycle I'm again at 840 but I'm having break through attacks about every other day. Not too bad, but still ... and I'm also staying at 50mg/day prednisone - even more troubling because ususally pred kills the beast until I get down to about 30mg/day - if the Verapamil isn't kicking in yet).
I'm not sure if it's time to find a new preventitive or if I can up my Verapamil to 960/day. I seem to remember some old posts saying folks had gone up to 1200mg/day ... so my question is this: how high a Verapamil dose have you taken, or have you heard first hand of another person using that much?
Any and all advice appreciated ... given my need for ever increasing dosages of Verapamil each year, at some point I'm figuring I'll have to move on to another preventitive ... but which one?
-John 
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| « Last Edit: Jan 3rd, 2008, 1:54pm by Major_Headcase » |
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E-Double
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #1 on: Jan 3rd, 2008, 1:58pm » |
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Not a doctor but I do have problem with you being on a steady dose of prednisone!
If roids are going to be used it is supposed to be used as a transitional med to give a bit of a break while you increase your preventative to a therapeutic level.
Follow the perscribed taper!
I'm a med free chronic and prefer it that way (not the chronic but being med free)
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Bob P
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #2 on: Jan 3rd, 2008, 2:19pm » |
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Dr. Robinson, the guest speaker at the OUCH convention in Vancover some years back, said that he had some patients tking as much as 1200mg/day. That's about the highest I've ever heard of.
For me - 480mg and at that level you may as well sew my a-hole shut cause it ain't gonna doo anything.
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Bob_Johnson
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #3 on: Jan 3rd, 2008, 3:17pm » |
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Print this article out and point out to your doc,Rozen's comments on drug dose for CH and on Verap. Also gives you some options if the Verap really has stopped being effective for you.
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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)
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| « Last Edit: Jan 3rd, 2008, 3:20pm by Bob_Johnson » |
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tommyD
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #4 on: Jan 3rd, 2008, 5:08pm » |
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Some really good preventives are discussed here:
www.clusterbusters.com
Of course, these methods are not for everyone, being illegal to various degrees, and not recommended for those with mental illness.
And you would need to get off the prednisone, but that's a good thing.
-tommyD
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www.clusterbusters.com
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Major_Headcase
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #5 on: Jan 4th, 2008, 9:59am » |
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Thanks all, good advice …
E-Double: Definitely share your concern about being on prednisone on a steady basis, I should have made it clearer that I’m “hovering” on 50mg a day for only a few days, in the hope those extra few days will give the Verapamil a better chance of doing its thing. Today I resume the taper (going down 5mg/day). I was on a low dosage of pred for 18 months a couple of years ago for another condition and learned about all the horrors prednisone can hold (had bone density scans before/after and used Fosamax during/after). I’m just in that early spot in my cycle where I’m still getting occasional hits and have to decide if I stick the course or try a new med. I chose to go a few extra days of prednisone in the hope it will get me over the hump without too large a risk.
Bob P: I knew I’d read somewhere about 1200/mg day, that confirms it. And regarding Verapamil as the “Great Aswan Dam” of the digestive tract … “Amen Brother!” At the dosage I’m taking it gets serious quick. My routine is to go to 3 glasses of Metamucil a day as soon as I start to ramp up the Verapamil (I forgot to mention I already take 240mg a day year round for high blood pressure). This seems to work pretty well, though an occasional dose of a mild OTC laxative is usually helpful about day 5. Two cycles ago I was at 740mg/day and didn’t take precautions (fiber 3X), on day 5 it was like getting a cluster in my colon!
Bob Johnson: Thanks for the link, I have that printed off somewhere at home but couldn’t find it for the life of me. Great info and good stuff to take to my doctor.
Tommy D: Fascinating option … if only it were legal. Still, not ruling it out forever … "Go ask Alice, when she's 10 feet tall!"
Bottom line: As I continue to drop the prednisone level, the next few days will tell me if my Verapamil level is sufficient. If I start to get hammered again, it’s back to the doc for a higher verapamil script or to try a new preventative. If my current meds means it’s only a few breakthrough attacks, I’d rather try living with that than trying to adapt to a new med mid-way thru the cycle. Today I have an appt. with my GP for a referral to a neuro I’ve heard good things about. I hope to leave his office with a script for oxygen (never tried it, but I want to and finally can afford to get the gear). I bought a Clustermask last cycle but never got a script so this time I want to follow through on 02.
Thanks again! Still hoping to hear directly from anyone also taking very high dosages of Verapamil regarding your levels and outcomes.
-John
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| « Last Edit: Jan 4th, 2008, 10:00am by Major_Headcase » |
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E-Double
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #6 on: Jan 4th, 2008, 10:10am » |
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I only got as high as 640 verap in addtion to 4oo something lithium before i finally decided that I had enough of the meds.
I went a decade without any meds (also un/misdiagnosed) and was a clear cut short cycle episodic. I introduced meds for the first time and it kept going and going. After 2 yrs on meds and really bad side effects including toxicity I decided to go back to baseline and not take anything so I did a 15 week taper very slowly. Each step down i would get whacked hard but then it would get easier. Once completely detoxed I noticed that the attacks were shorter and "cleaner"
I have not looked back.
In march if I do not get the 30 days consecutive pf time it will be considered my 4th yr chronic, however for me life has never been better regarding CH.
Once in a while we all need a break, for me it was with a major increase over the summer and complete lack of sleep, I'm talking an average 1.5 2 hrs of broken sleep for nearly 3 months...
I went inpatient for a few days and broke my NO sleep cycle and decreased attacks.
Life's good!
sorry for the ramble, we all have so many different experiences mainly because we all have such different body chemistry.
You will find more successful stories with regards to aborting attakcs vs. prevention mainly because despite us trying to define our pain by KIP levels, pain is still very subjective and individualized so it truly can't be defined universally.
good luck,
E
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BC_Battler
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #7 on: Jan 6th, 2008, 2:56am » |
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Tons of great info already given by the other posters, so I'm sure you'll find your answer. But I'll also throw my 2 cents into the mix in the hopes tht it might be helpful.
I was first hit by cluster headaches 2 years ago. In my first year I was episodic, but this year I'm now on month 13 in a row of CH attacks. I have been battling 5-7 daily attacks at a kip 6 or worse, in addition to the seemingly never-ending stream of shadows. The last year has been the worst of my life, and my neuro has tried everything to find the right mix for me.
He has me on 720mg of verapamil and believes that anything more won't make much of a difference. I know others here are on more, but he believes that 720 is max for me, so he's tried pairing it with other preventatives.
Earlier this year he had me on the 720mgs of Verap paired with Topomax, and that was a disaster. It didn't take away the pain and the side effects truly sucked.
So this month he has me on 720mg of Verap paired with Sansert (methysergide). There aren't a ton of people here on Sansert, and I hadn't heard much about it, so I didn't have super high hopes, but I was willing to give it a shot.
It's only been a couple of weeks, but I have to say that I am thrilled with the difference - I feel a thousand times better than I did with Verap and Topomax, and while I'm not totally pain-free, it's made a huge difference. When I get hit now the intensity isn't nearly as bad and the shadows are all but gone.
I have no idea how well Sansert has worked for others, but so far so good for me. It's a serotonin antagonist, and has a similar chemical compound to LSD. It's an older prescription drug, and may be tough to find, but for me it's the only thing that's really been working.
I still use oxygen and Rock Star as abortives, but apparently you can't use Imitrex while using Sansert.
Anyway, after the past 13 months of hell I am keeping my fingers crossed that this will continue to work.
Don't know if this would work for you, but maybe it gives you another weapon for the arsenal. Whatever you choose to do, I wish you nothing but success and PF times. All the best.
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cash5542
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #8 on: Jan 6th, 2008, 10:36am » |
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My daughter was put on 1280 Verapmil by one of the top nuerologists with out a thought. Last summer much research came back that these doses may be dangerous for CH. Her EKG's did come back with problems so her dose was lowered to 320. Be careful!
http://www.medscape.com/viewarticle/561540
Charlotte
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ccbiggsoo7
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #9 on: Jan 13th, 2008, 11:19pm » |
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My doc won't let me go any higher then 480 of verapamil a day. Then either added depakote wich had a lot of side effects on me. Now i take verapamil and lithobid.(LITHIUM)! He did tell me as read in some of the other posts that sansert is one of the best meds for clusters but really hard to get in the u. s. !
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Annette
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #10 on: Jan 14th, 2008, 5:49am » |
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Maybe its time to add another preventive to Verapamil. My husband went as high as 720 mg during his last cycle. He still had break through hits but couldnt tolerate any higher. His heart was fine and there was no change on ECG ( cardiogram ) but he developed pretty bad constipation and ankle swelling.
The neurologist then added other preventives. He tried Epilim, Lithium and Lyrica. They all helped a little but not that much. In the end, the combo that worked was Neurontin and Verapamil, with Oxygen, Imitrex and Zyprexa to abort the break throughs.
For the night hits he took 12 mg of melatonin, started at 3 mg increasing by 3mg every 2-3 days, it worked quite well after 2 weeks and stopped his 4am hits.
Some people do take 1200mg of Verapamil but that is a hefty dose and it can cause problems with the heart. Adding another preventive may be a better solution.
Please discuss with your doctor. Good luck and painfree wishes.
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LeLimey
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #11 on: Jan 14th, 2008, 10:53am » |
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Annette I like Prof Goadsby's description of some of the higher doses of verap - he has called them "heroic doses" I always imagine the little pills with swords and shields after hearing that (I know, I know - I've been delusional since the topiramate LOL)
John,
As already stated though, verap when mixed with lithium has proved the silver bullet in fighting CH for a lot of people.
Here's wishing you luck with whatever you and your neuro decide is the next step!
Helen
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Miz_D
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #12 on: Feb 12th, 2008, 3:53pm » |
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I have taken 1080 mg of Verapamil for the last 6 years, increasing up to 1200 mg to deal with 'breakthroughs' (am chronic). I tried other prevents in addition to this (Sansert, Lithium, Topomax and some others that I can't remember), varying the amount of Verap, but nothing worked and I suffered severe side effects that my body could not tollerate.
Verapamil has been, for the most part, my saving grace. I have experienced some side effects but nothing I cannot cope with. My EEG tests continue to come back normal so I guess my heart is alright so far. I did have a 4 month period this year when the Verapamil seemed to cease effectiveness and it was a nightmare trying other prevents which didn't work and made me extremely sick. So, detoxed from them all and went back to my old standby Verap (1080 mg) and it seems to be keeping the beast at bay again. My Neuro also suggested taking supplements such as Magnesium (wish I would have known about it years ago!), Coenzyme Q10, Riboflavin (B-2) and Melatonin (15 mg at bedtime).
I'm feeling WAY better than I did a couple of months ago and my energy levels are the best they have been in years. Best of all I'm getting some blissfull PF time!
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lennycohen
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #13 on: Feb 12th, 2008, 7:24pm » |
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My neuro reallly hates verapamil, so he started with Norvasc, then added Depakote, then added lithium - and I've been on Topamax the whole time, so I'm really either oblivious to the side effects, or the fatigue is so great that I don't notice. I just did a Depakote IV this morning to try and break the cycle - we'll see how it goes - so it seems I've tried many other preventatives. I've been in cycle since 12/15 - but things seem to be lightening up, don't know if it's the drugs or the cycle, jabbed myself (imitrex) on Friday, then again this morning, usually it's at least every day ---
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Jonny
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #14 on: Feb 12th, 2008, 7:31pm » |
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on Jan 14th, 2008, 10:53am, LeLimey wrote:| As already stated though, verap when mixed with lithium has proved the silver bullet in fighting CH for a lot of people. |
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That combo gave me life back!....nuff said!
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superhawk2300
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #15 on: Feb 13th, 2008, 9:50am » |
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My experience (which is limited) with verapamil is that is just seemed to make my cycles last forever, though the hits were much less intense. So I tend to agree with E-Double's take for myself.
I am in a new cycle now and I told my neuro that I didn't want the verap / prednisone deal this time to see of the cycle shortens up again. So far the intensity and frequency of the hits is pretty f-ing high compared to last time - last week I had some nights I've had some real rockers that just laughed at the oxygen/frova/red bull combo. I skipped all meds last night (ouch) but got back on this morning and the Relpax seems to have me back to normal cycle.
Anyways, I won't ba asking for the verapamil / prednisone yet unless it really gets out of hand.
Thats just my take though. I'd rather have more pain for a shorter time adn than less pain that seems to last forever.
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Bob_Johnson
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #16 on: Feb 13th, 2008, 11:06am » |
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In the second part, see comments from our buddy, Dr. Goadsby.
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Verapamil warning
« on: Aug 21st, 2007, 10:38am » Quote Modify Remove
------------------------------------------------------------------------ --------
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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birdman
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Re: Maximum Verapamil dosage? Other Preventitives?
« Reply #17 on: Feb 13th, 2008, 11:22am » |
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I have in the past gone as high as 1200mg. I felt like a semi was parked on my chest. Dealt with it because it kept the hits to a minimum. Eventually had a routine EKG due to a scheduled procedure for kidney stones and all sorts of bells and whistles went off. They discovered that the verap caused, as mentioned here before, an arrythmia. My heart was way out of wack. Due to family history, I had to drop off and now do not use it as a preventitive. O2, ice, and clusterbusters for me!
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