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DanCP
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Verapamil questions
« on: Jun 21st, 2005, 12:08pm » |
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Hi everybody, I am new to the site but unfortunately not to CHs. I have just started taking verapamil this cycle and it really seems to be working-no real headaches in 6 days. I was awoken last night with what felt like the start of one but it never really got off the ground. Needless to say I am pretty psyched but am wondering what other peoples experience with this is. Right now I am just taking 240 mgs/day-1 morning, 1 afternoon and 2 before bed. Will I have to keep upping the dosage as time goes on? Also, my cycles usually last about 6-8 weeks, if this does keep working the way it is now how do you know when to stop? Sorry if these sound like stupid questions-just trying to find out as much as I can. Thanks, Dan
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burnt-toast
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Re: Verapamil questions
« Reply #1 on: Jun 21st, 2005, 2:03pm » |
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Dan,
Verapamil is one of the stardards. Like most meds. used for CH it works for some but not for others. You may need to experiment with dosages and possibly med. combinations to get a mix/level that consistently works for you.
I've leveled off @ 1200mg lithium (300x4 daily)
720mg verapamil (240x3 daily)
9mg melatonin (9mgx1 daily)
This mix controls the severity of my CH and possibly frequency but does not stop attacks.
If I increase lithium I get hand tremors
If I increase verapamil my legs/feet swell
More melatonin just makes me sleepy
It sounds like you're getting good results. It's best to keep good records and work with your neurologist as needed.
Good luck keepin em at bay.
Tom
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Bob_Johnson
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Re: Verapamil questions
« Reply #2 on: Jun 22nd, 2005, 8:00am » |
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: Headache. 2004 Nov;44(10):1013-8.
Individualizing treatment with verapamil for cluster headache patients.
Blau JN, Engel HO.
Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-101 .
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Bob Johnson
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don
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An effective dosage for me is 480mg per day.
Verap won't eliminate the CH but will decrease frequency and intensity.
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| « Last Edit: Jun 22nd, 2005, 8:26am by don » |
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sandie99
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Re: Verapamil questions
« Reply #4 on: Jun 22nd, 2005, 9:36am » |
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My verapamil dose was 600mg when it started working for me (verapamil 200mg, 1 1/2 tabs in the morning, 1 1/2 tabs in the evening).
I'm a chronic, who had tried lots of meds before finding the right med & dose.
With verapamil, my doc said that sometimes bigger doses dimisish the side effects and begin to work. It was like that with me. The side effect I got was lower blood pressure, which was bad because mine is low anyway. Nearly fainted couple of times while I had lower verapamil doses.
Best wishes & PF days,
Sanna/sandie99
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Sunil Gururaj
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Re: Verapamil questions
« Reply #5 on: Jun 22nd, 2005, 9:55am » |
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My cycle started 20 days ago.
I am on verapamil since 12 days.
120mg X 3 times a day
The frequency of attacks have reduced. none in the last 3 days (touch wood)
But I wake up every morning with a heavy/dizzy head....
hope you get better
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birdman
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Re: Verapamil questions
« Reply #6 on: Jun 23rd, 2005, 10:06am » |
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Verapamil works for me but I am taking 1200mg a day. I take all five pills in the AM. Should probably spread them out though. Also try Oxygen too Dan. It's great for acute attacks.
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Bob P
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Re: Verapamil questions
« Reply #7 on: Jun 23rd, 2005, 10:43am » |
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I've got to say birdman that 1200mg is the highest dose I've seen.
Goadsby says 960 max.
Robinson said he had one patient at 1080.
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siv200
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Re: Verapamil questions
« Reply #8 on: Jun 23rd, 2005, 1:00pm » |
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I was going to post something about the wonders of Verapamil for me, and saw this posting.
Now I want to apologize ahead of time for all of you for whom V does not work very well. Of course I know the "pain" (that word barely describes it), and it must not be pleasant to hear how well it worked for someone else and not for you.
But for those beginners who have yet to try it:
It was prescribed to me a few years ago, so I had several years without it, thus I experienced my normall patterns several times.
Verapamil has been incredibly effective for me everytime I used it. It ended the period when i first used it, and over the last few years, I took it when i felt the beginning tremors of a period, and the periods did not come (though i have to believe that i was not going to have full blown periods those years anyway).
I had a FULL-blown period begin on Sunday, and started "loading" on V the next day.
I have only had two attacks since (NOT normal), and woke up during the night at the beginning tremors, but the attacks did not come the last two nights.
While my doc only prescribed 3x 120mgs a day, i took 5 the first full day, and 4 the next (i sympathize with his caution, but he has never felt a CH).... of course this is NOT MEDICAL ADVICE for any of you, just what i did, and could be dangerous for anyone with heart conditions...
If you have yet to try Verapamil, pls consult your doc asap (i have read it is still VERY underperscribed), and if you have no blood pressure issues, i hope you can start it soon.
I have never had an issue with it, but it is a serious medication, and I do try and cut down on cigs and strenuous activity completely while taking it. Taken near imitrex, i get a little tired, but i will take that anyday.
I sincerely pray that it stays effective for me for as long as i get CH's.
And yes, i also thank God (my rare prayers nowadays) that both imitrex and verapamil work so well for me, and i am so sorry for those of you for who they don't.
For all i know, i could be in the same boat next year.
Take care all, and best of luck
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Dave
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Re: Verapamil questions
« Reply #9 on: Jun 25th, 2005, 2:53pm » |
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Verapamil is the usually the first medication prescribed for cluster headaches.
While it does it does not always work, it can be extremely effective for many people a significant percentage of the time. If 240mg/day for 8 weeks is all you need to knock out an episode, that is not unusual.
Be careful about high doses of Verapamil. It has side effects and can slow down the heart.
If Verapamil does not work, your doctor may look for other options.
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BikerBob
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Re: Verapamil questions
« Reply #10 on: Jun 25th, 2005, 6:03pm » |
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My neuro said increase the verapamil dose by 120mg/day every 3 days until I got to 480mg, then get an EKG before every dose increase above 480mg/day. A week after I got to 600mg/day the episode ended. I was taking 6-9 mg/night Melatonin with it and believe that combination is what ended my last cycle so soon. It was my shortest CH episode of more than 15 episodes in the last 30 years.
BB
edited to add: Regarding your question "if this does keep working the way it is now how do you know when to stop?"
After I was completely PF for 3 weeks while taking 600mg verapamil and 6-9 mg melatonin, I started to taper off the verap by decreasing the dose from 600mg to 480mg. Two nights later I got hit at 3am so I killed the damned beast with shrooms.
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| « Last Edit: Jun 25th, 2005, 6:49pm by BikerBob » |
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Kevin_M
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Re: Verapamil questions
« Reply #11 on: Jun 26th, 2005, 7:29am » |
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on Jun 25th, 2005, 6:03pm, BikerBob wrote:| decreasing the dose from 600mg to 480mg. Two nights later I got hit |
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I feel the effects of a drop in verap after two nights also, and it's then I find out how good a decision I've made.  Usually NOT, so far. It seems to build strength again whenever I decrease too early, starting from 600mg also, after attaining that level in stairstep fashion the first month of an episode.
After each 120mg drop for me, if it seems ok, I stay there awhile, no set period of time, frequently trying to test the water with another decrease after a few weeks. Two nights later I get the first hints. If it's just shadows, I'll stay there. I've tended to decrease very gradually, but have very long episodes.
Kevin M
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| « Last Edit: Jun 28th, 2005, 8:51am by Kevin_M » |
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birdman
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Re: Verapamil questions
« Reply #12 on: Jun 28th, 2005, 8:27am » |
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At what point is blood pressure/ pulse considered dangerously low? Yesterday I was at 110/60 with a pulse of 56.
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Margi
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Re: Verapamil questions
« Reply #13 on: Jun 28th, 2005, 11:12am » |
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Bird, I'd say you're approaching the danger zone. Normal is 120/80 and I think normal pulse is between 60 - 70, isn't it? I'm probably wrong on the pulse, but I know you're lower than normal.
Please talk to your doc, Bird, about maybe tapering off some ok? And, definitely, you should NOT be taking all five doses at once!
Bird, you're scaring me, man! Please be careful, ok?
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birdman
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Re: Verapamil questions
« Reply #14 on: Jun 28th, 2005, 1:00pm » |
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Spoke to my boneheaded primary doc and he said to stop for a couple of days. Can't stop verapamil cold for a couple of days. Even I know that. So I called the neuro and am waiting for call back. I trust him and noticed that he is one of the recommended(?) docs on the ouch site. Sorry for taking the thread in a different direction. Another CHer who thinks the world revolves around him.
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Margi
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Re: Verapamil questions
« Reply #15 on: Jun 28th, 2005, 1:07pm » |
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LOL bird, it's ok to take something off track - sure isn't the first time that's happened!
Please don't let it go too long though, ok? If you start feeling light-headed/dizzy, or feel like you're going to black out, call 911 or go to emerg. Keep on monitoring that b/p!
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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birdman
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Re: Verapamil questions
« Reply #16 on: Jun 29th, 2005, 11:40am » |
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Thank for the concern Margi. SPoke to neuro and lowered my verap by another half pill. Couple of days, another half. Pulse seemd to be holding at 62.
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Margi
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Re: Verapamil questions
« Reply #17 on: Jun 29th, 2005, 12:58pm » |
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Good to hear, Bird. I read on another post here today that 60 is the magic mark for pulse. Don't let it go below that again without getting some help, ok?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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