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Title: Verapamil Question Post by Carla_Comiter on Jul 26th, 2003, 11:30am ??? I just started taking Covera-HS (Verapamil HCl) 240mg extended release 2 days ago. My doctor said to take one tablet before going to bed. I think they may be keeping me awake. Has anyone else had this side effect? I've read some of the postings about Verapamil, so I know that many people take it more than once a day. Is there any reason that I can't take it in the morning? I rarely awaken during the night with CHs. My usual pattern is 11AM, 6PM, midnight--with an occasional bonus headache when I get up in the morning. I'm taking 25 mg of Paxil daily. At first the doc said take before bed, but I changed that to AM since it also kept me awake. I'd appreciate some feedback, Thanks. By the way, my heart just aches for all the sufferers who are sharing their stories. I send light and love to you. Know that you are not alone. |
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Title: Re: Verapamil Question Post by Prense on Jul 26th, 2003, 3:34pm If anything, it made me tired... |
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Title: Re: Verapamil Question Post by Joanie on Jul 26th, 2003, 9:50pm Hi Carla.... Welcome to the board! I take verapamil in the morning, although it is not the extended release. As far as I know, there shouldn't be any reason not to take it in the morning, unless it has something to do with other medications you may be taking throughout the day. I would definitely give your doctor a call and question it before changing it to the morning. Verapamil also tends to make me tired. Good luck! Joanie |
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Title: Re: Verapamil Question Post by smfaison on Jul 28th, 2003, 4:58pm I have always taken mine in the morning. And now I'm taking 180 mg in the morning and another 180 mg at night, and having no problems with sleeping. Maybe the other stuff is helping me sleep though. Like Bellespas and Depakote. |
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Title: Re: Verapamil Question Post by godsjoy on Jul 29th, 2003, 7:48am I tried Verap after my last episode....that was the problem....it was "after" the cycle.....I took it and it made me feel like crap.....I already have low low blood pressure...so I was too low......soooooooo....PLEASE somebody tell me if there is a better preventative that doesn't lower blood pressure??????????? By the way I got on St John's Wort and at least I feel better between headaches.....not as much general crappy....dreading the next one kind of feeling....I'm keeping it in my routine....yippeeeeee......I found something to help me get through......I'm in the middle of my cycle.....just a few more weeks to go......I PRAY!!!!! Love and blessings, Karen |
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Title: Re: Verapamil Question Post by klutch on Jul 29th, 2003, 9:18am Curious about Verap as well, please keep posting if you use this and it is working. I would like to discuss this with my Dr. have not been PF in over 6 weeks. Starting to get really down about this whole thing. |
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Title: Re: Verapamil Question Post by ave on Jul 29th, 2003, 2:38pm Carla, not everybody has good results with the Extend release stuff. But you can't tell untill you have taken Verapamil for about 5-7 days. The amount seems small, some of us go to 2 or 3 times as much a day. No reason not to take it in the morning, but I have never noticed that it put me off my sleep. |
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Title: Re: Verapamil Question Post by Leslie71 on Aug 5th, 2003, 5:09pm I simply had to reply to this thread b/c I just found out how important it is to understand how your medication works on a time-release schedule, Verapamil in particular. Remember: not all brands of Verapamil are same! Since I was finally diagnosed in 1998, the combination of 1-week of prednisone and 30 days of Covera-HS have worked miracles for me. I have usually gone more than a year before getting another round of clusters. Each time, I've taken the same drugs, in the same way, and within the first day I seem to knock out the clusters that would otherwise hound me weeks on end. Covera-HS has been the wonder drug for me, a middle-of-the-night sufferer. ;D Shift to present day and my most recent round of clusters. I moved to California, and was forced (in a panic) to find another doc, pharmacy, etc. I took copies of my old prescriptions to a really great doctor out here who wrote the same thing up for me. I took it to Target's pharmacy, where the problem began. I was given *almost* the same thing, but not quite. They gave me Verapamil alright, but a *different brand.* Instead of Covera-HS, they gave me Calan SR. "What's this?" I ask. "Oh, it's Verapamil--same thing," says the pharmacist, who dismissed me quickly. Desperate for pain relief, and not quite up for questioning the pharmacy folks, I took my prescriptions and ran. 3 weeks later, I was still suffering. :'( You see, I suffer from clusters in the middle of the night. I wake up like clockwork from agonizing pain at 2am (give or take a few minutes) almost nightly. After finishing the prednisone and most of the Calan SR, I was still suffering terribly. So I looked closely at the label and what I was taking. I also remembered that I used to take Covera-HS at night, and was now taking Calan SR in the morning. So I called the pharmacy. They confirmed that these forms of Verapamil are identical with the exception of their time-release factor. Covera-HS begins to release about 4-5 hours after you go to bed--which is great for a night sufferer like me. Covera-HS is an extended-release verapamil delivery system and is designed to release a night-time dose which reaches its peak effectiveness in the early morning. Perfect for me! My taking Calan SR and its system of release (which does not include a peak in the night), was not helping me at all. Granted, I have not suffered horribly from daytime pain (which I used to years ago), but I still usually end up with a tender and sore left eye socket from my bout the night before. So Target apologized, and has made a note on my account not to "switch up" on me again. They confirmed that my new doctor had indeed specified Covera-HS, and were apologetic for my problems. It's been 2 days now with no problems whatsoever. Keeping my fingers crossed. If I go headache-free for 4 days, I'll know it's really working. Just wanted to share. This is in *no way* meant to endorse one drug over the other, just to indicate the importance of learning about the small differences among the various treatments, and the importance of working with your doctor to figure out what works best for you. |
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Title: Re: Verapamil Question Post by eyes_afire on Aug 5th, 2003, 5:29pm Excellent, rock solid post Leslie 71! I think sometimes people give up on verapamil when one particular form of it does not work. I believe the general consensus here is that the immediate release works best, as you discovered. I'm lucky because I'm having good success on SR, but if that ever fails, I will probably be trying the immediate release. Excellent post. --- Steve |
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Title: Re: Verapamil Question Post by jonny on Aug 5th, 2003, 6:40pm Been taking Verap for well over ten years, lost my insurance a while back and a bro sent me some. Im over five weeks PF which is three times my PF record in 28 years. I know its not the same as I was taking, er, sr....ahhhh who knows Ill find out. ..................................................jonny |
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Title: Re: Verapamil Question Post by Ueli on Aug 5th, 2003, 9:15pm I'd like to add some thoughts to this Verapamil discussion. Drugs whose patents are expired, like Verapamil, can be marketed by everybody. Some companies add some new 'features' to an old drug, in an attempt to grab a higher share of the market. The worst example is 'Excedrin migraine' which is exactly the same stuff as Excedrin forte, with the only difference that the leaflet contains the warning to visit a doctor if the headaches should continue. ::) In Europe 'Aspirin' is a protected trade name of Bayer; others have to invent a new name to sell acetylsalicylic acid. But nevertheless, in the last years Bayer has marketed three fancy variants of the over 100 years old stuff, duh. Verapamil comes in different variations: regular, SR (sustained release), PM and HS (controlled onset). Regular Verapamil takes 1-2 hours to reach maximum plasma concentration. The renal elimination half-life of Verapamil is 4.5 to 12.0 hours. It therefore seems to make sense to split the daily dosis into several parts and use a slow release version, in order to get an almost constant concentration throughout the day. I don't know anything about Verapamil usage for heart disease, could be this is an important point there. However, experience for clusterheads shows that Verapamil takes a much longer time to show any effect, a week to 10 days. Therefore, the short time variations throughout the day are of little consequence. (A year ago I dropped my daily dosis from 560 mg to 480 mg. After about a week the attacks got worse. So after a few day I went back up to the previous dose and it took another week until the attacks were reduced again.) In view of this, there should be no reason to prefer any variant over the other. But Dr. Peter Goadsby, the world's most knowledgeable expert on CH, recommends the regular Verapamil over the SR version, on pure empirical reasons. He doesn't know why, but suspects the different mix of the (about a dozen) metabolites for the different variants. There are quite a few testimonials on this MB on improved results from changing from SR to regular. Now to the story of Leslie. First, I think his/her pharmacist is rather irresponsible, switching the rx on his own from HS to SR; there have been reports of very serious overdosing on doing that. :( Second, I can't believe that the difference noticed by Leslie is due to timing: The 4 - 5 hours delay of HS taken before bedtime comes too late for the nightly attacks that strike with the onset of REM sleep, usually 1.5 hours after falling asleep. Furthermore, it takes days until Verapamil brings its full effects. I guess, the HS version has yet another mix of metabolites, one more useful than from the SR version and more similar to the regular. PFNADs Ueli |
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Title: Re: Verapamil Question Post by murazzio on Aug 13th, 2003, 7:47pm For two months in the worst and longest cluster ever. been taking verapamil for almost a month now, seems to work a little but haven't found the right dose yet. I'm on 120mg a day now, probably going up on friday. As side effect it makes me dizzy, tired and i tend to forget small things more often than usual. It also lowers my heartrythm. No problems sleeping so far (until it hits again) PFDAN painfull murazzio |
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Title: Re: Verapamil Question Post by Carla_Comiter on Aug 13th, 2003, 8:39pm Murazzio, Please read other posts regarding Verapamil. It seems to me that your dosage is very low, especially if you've been on it a month. A lot of Clusterheads have good success with it, but it seems that a much higher dose and being aware of the difference between extended release and immediate release formulas make a big difference. There are great details on this site, please do research before going to doc on Friday. Good Luck and PFNAD Carla |
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Title: Re: Verapamil Question Post by mustang on Aug 14th, 2003, 7:38am I take 640 mil. of verapamil aday, keeps the headaches away, get a shawdow once in awhile but nothing real bad. I have been chronic for years with no releif this seems to be working. Not much in side effects will take them in exchange for HD. |
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Title: Re: Verapamil Question Post by Carla_Comiter on Aug 16th, 2003, 10:30am [quote][/quote] Dear Julie, See quote from Leslie71's reply to this topic. Apparently he has had success with Prednisone and Covera-HS. I found some relief with Prednisone, Lithium and O2 in 1991. I went to a headache clinic. I don't know if the *triptans were available in '91. Nonetheless, it was the first time I had any relief in the 24 year history of CH that I had. The lithium gave me hives but the Prednisone treated that allergic reaction. Wasn't a perfect solution, but did give me hope. Carla[quote][/quote] |
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Title: Re: Verapamil Question Post by Carla_Comiter on Aug 16th, 2003, 10:32am Dear Julie, See Leslie71's reply to this topic. Apparently he has had success with Prednisone and Covera-HS. I found some relief with Prednisone, Lithium and O2 in 1991. I went to a headache clinic. I don't know if the *triptans were available in '91. Nonetheless, it was the first time I had any relief in the 24 year history of CH that I had. The lithium gave me hives but the Prednisone treated that allergic reaction. Wasn't a perfect solution, but did give me hope. Carla |
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Title: Re: Verapamil Question Post by Cooked Brain on Aug 18th, 2003, 12:04pm Dear Carla, you are right, I miscalculated i was on 240 when I said 120. because my heartrate was low from the beginning the neuro was very careful with the verapamil, the cardiologist advised an ecg of my heart which turned out ok, so the dose is going up, we started at 60 and today it has been set at 360, it seems to help :) too early for celebration though, still have shadows and some still reach kip 8, but most seem to remain small. have cut back on the relpax, want it to work if I really need it. Thanks for your comment PFDAN painfull murazza |
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Title: Re: Verapamil Question Post by Lori on Aug 18th, 2003, 3:05pm Please go to OUCH (button on left) and click on Cliuster Help, then medications. This is a start, a good start, as you will see there are many different things that can be tried. Read as much as you can. Thanks UeLI for that great verapamil info. I printed it for my file. I also have used verapamil and don't think it caused me to be tired. It did however give me another type of wicked headache for a couple days every time I'd increase my dose though. The doc kept saying, "It doesn't cause HA's." Yeah, right. It did for me. Good luck. |
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Title: Re: Verapamil Question Post by Cooked Brain on Aug 18th, 2003, 3:21pm Had that same kind of hangover type headache when my dose was increased, as I dont drink my neuro said very likely from the verapamil. And I think it causes minor loss of memory?? Anyway, as long as it helps the cluster with nothing more serious... PFDAN painful Murazza |
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Title: Re: Verapamil Question Post by Smurf on Aug 18th, 2003, 4:41pm And I think it causes minor loss of memory?? Right on! and how about talking like a moron? Saying the wrong words for stuff? Like, "is that dream fail?" was really suppose to come out as, "is that drum full?" What the heck is that all about...? ??? But, better than a CH any day, I say. -Smurf |
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Title: Re: Verapamil Question Post by Cooked Brain on Aug 18th, 2003, 5:28pm Hi Smurf, I really don't know, the info packed with the veapamil doesn't mention this. What dosis are you on? Have had some very clear examples that I am not my normal self lately, like forgetting turns on the road, on a road I have taken a million times and having to go back in the house two three times because I keep forgetting little things..? Forgetting what you wanted to say in a second? Weird ??? PFDAN, c u around painful murazza |
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Title: Re: Verapamil Question Post by mustang on Aug 22nd, 2003, 5:38pm All I can say is that I have been on 640 mil. aday for about 7 months now and mostly HD free. I have not had any of the side affects you mention, ya some constapation but nothing that a small change in diet fixed. :) :) NO MORE :'( |
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