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Topic: Verapamil (Read 482 times) |
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j-wick
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Hello all. Been visiting this site for a few years now, but have never posted before. A little history:
I typically have two cycles a year. One sometime around Nov.-Jan. and the other May-July. Typically in my life one of two things happens when I get into a cycle. One I cluster everyday (sometimes multiple attacks in a day) for 3-4 weeks. Second I get 2-4 attacks a week for several months. The Dr. likes to call it a Cluster variant.
Anyway, currently I'm experiencing something completely new to me. Since November I have been in a cycle. When it first came on I took prednisone (sp?), which usually helps but this time didn't. I took it for 3 weeks, 3 pills a day for a week, then 2/day for a week and so on. Since November I can count the days I haven't had an attack on one hand. Not only am I getting them everyday, but several in a day. I have been taking Zomig for them, which helps, but I can only take it twice a day and the insurance will only pay for 6 a month.
Few questions:
Everybody on here seems to take Verapamil at 480mg/day, but from what I can get they only take it when the cluster occurs. I am at a level of 240mg/day, but I never stop taking it. I have been on Verapamil for over a year straight now. Is this not normal? Should I be taking 480mg/day? Can you take 480mg/day all the time? Does anyone know what the long term effects of taking Verapamil daily are? What about the long term use of Zomig? I've probably taken 10+ Zomigs in the past week or two, and the directions say not to treat more than 3 headaches a month with it.
Just wanted to voice my pain and concerns and see what everyone thought. Just a fellow suffer here looking for answers and relief that we all deserve....Thanks
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nani
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Re: Verapamil
« Reply #1 on: Jan 26th, 2005, 12:19pm » |
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Hi J...I'm a chronic and I take (and will continue to take) 360mgs a day along with lithium and Neurontin as preventatives. I can only use oxygen to abort so I can't answer your Zomig question. Pain free wishes to you...nani
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Margi
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Re: Verapamil
« Reply #2 on: Jan 26th, 2005, 12:33pm » |
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Hi J-Wick,
You would fall into the episodic category and, traditionally, episodics only take verapimil while in cycle. Some use dosages upwards of 720mgs a day when in cycle. It's always a toughie when to stop the verap, though - some stop it too soon and their cycle comes best. I guess you know best in that regard, your body lets you know when your cycle has passed. As verap is a blood pressure lowering drug, you would have to taper off it to prevent blood pressure spikes from stopping cold turkey.
Most of the triptans (zomig is one) suggested limited dosages like that - but most clusterheads use it sometimes more than once a day, a far cry from 3 times a month. Those directions are aimed at migrainers. Most clusterheads try not to use it more than twice a day though.
Have you looked into oxygen as an abortive? It sure helps a lot of folks.
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j-wick
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Re: Verapamil
« Reply #3 on: Jan 26th, 2005, 1:36pm » |
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I tried oxygen when I was young. It didn't seem to work, but I cannot honestly say I had the patience to let it take affect. I'm trying to get it lined up with my Dr. now to give it another shot. So does anyone think I should ask the Dr. to up my dosage?
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Bob_Johnson
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Re: Verapamil
« Reply #4 on: Jan 26th, 2005, 3:33pm » |
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One of the leading headache docs in the U.S. keeps some of his patients on Verap full-time, even when it has been years since an attack. But, your dose is on the low side. See following:
: 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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sandie99
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Re: Verapamil
« Reply #5 on: Jan 26th, 2005, 4:22pm » |
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Well, I've been taking verapamil since.... june, if I recall it correctly. First 200mg/day, now 400mg/day.
Neuros have not said to me how long time it is safe to take it but when I read the side effects list there was nothing horrid on it and so far I haven't had any side effects whatsoever.
I'm a chronic.
PFdays to you, wishes
Sandie
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maureen
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Re: Verapamil
« Reply #6 on: Jan 26th, 2005, 5:22pm » |
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I to am on 240mg a day, for 9 months now. I have talked to the DR about long term side effects he told me that this med was created for long time use and that there is no side effects w/ the exception of b/p dropping to low, is that why your not on a higher dose?
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Kris_in_SJ
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Re: Verapamil
« Reply #7 on: Jan 26th, 2005, 8:49pm » |
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Hi J,
Welcome.
I'm also an epsodic sufferer. Luckily, my cycles are several years apart, but I'm learning more and more about Verapamil.
For an episodic sufferer, 480mg/day is usually the average dose while in cycle. The last two cycles, I've weaned off totally after I was sure the episode was over. For me, that meant, no HA's for several weeks and no more shadows. I wean off very gradually. This past cycle, it took me a full 5 months to wean off totally. Why take drugs if you don't need to? Besides, I've always been afraid that staying on Verap between episodes might mean it wouldn't work as well the next time I needed it.
The key is ... Verapamil is not an abortive. It has to be started and ramped up rapidly in dosage as soon as a cycle starts. Prednisone is often helpful in that it helps until the high-dose Verapamil kicks in. The CHA's you do have get aborted with your drug of choice (mine is Trex injectibles).
At 240mg/day, you're probably not getting the benefit of its preventative effects. I highly recommend you read this link, print it out and take it to your doc. It covers the full range of treatments/drugs/etc. for CH, and was a life-saver for me.
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Many PF Vibes!
Kris
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j-wick
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Re: Verapamil
« Reply #8 on: Jan 27th, 2005, 9:19am » |
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I honestly don't know why the Dr. has me on such a low dosage. I beginning to think that he has never treated a CH sufferer before. I had to describe exactly what I needed from him for oxygen therapy, he had never prescribed oxygen before. Any way I have seen this link posted a few times and every time I click on it, it tells me that the page was not found.
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Anybody else having this problem? If not, could someone save it and pdf it for me?
Thanks a bunch....John
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j-wick
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Re: Verapamil
« Reply #9 on: Jan 27th, 2005, 10:22am » |
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Just another thought....
Anybody here from Houston and can recommend a good Dr. for me. Mine comes highly recommended, but I'm just not sure he has ever treated a CH sufferer...
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Gator
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Re: Verapamil
« Reply #10 on: Jan 27th, 2005, 10:07pm » |
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I am very sorry to say that the "good" people at the future drugs website have seen fit to make us pay for this document from now on. A mere $50 will allow you access to this document. Greedy bastages.
Try this: http://www.brightok.net/~mnjday/chtherapy.pdf
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j-wick
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Re: Verapamil
« Reply #11 on: Jan 31st, 2005, 1:59pm » |
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Thanks Gator. I'll give that a read when I get home.
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