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Topic: Verapamil and Prednisone Questions (Read 509 times) |
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Marcos618
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Verapamil and Prednisone Questions
« on: Aug 30th, 2002, 2:17pm » |
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I have been taking 60 MG of Prednisome for about 4 weeks now. 20 Mg 3 times per day. If I dip any lower the the 60 mg I get a cluster, I tried to go to 50mg and get hammered each time. Doc wants me off this stuff and set up a taper down schedule that lasts 39 days. Every 3 days one of the 3 doses I take gets reduced by 5 mg.
He set me up with Verapimil 120 mg ER. Take one twice per day. Have many of you had much success in this drug preventing the CH's? Getting worried here, I start the reduced prednisone schedule tomorrow and fear the CH's coming in.
I suck oxygen when I get the Ch's but have been lucky to never had to do this at work where anyone can see me. The ch's all hit at home the past five weeks.
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Drk^Angel
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Re: Verapamil and Prednisone Questions
« Reply #1 on: Aug 30th, 2002, 3:12pm » |
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I have great success with verapamil, but only after I started on 240mg X3/day. Good luck!
PFDAN........................... Drk^Angel
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ChristineL
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Re: Verapamil and Prednisone Questions
« Reply #2 on: Aug 30th, 2002, 3:13pm » |
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Marcos,
I have been on Pred for the past 2 weeks and am in the tapering off cycle.
My CH's have been less intense and less frequent but I am still getting them. I think I will have to try another med once I am weaned off.
I am not on Verapamil yet.
Chris L
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Kilo
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Re: Verapamil and Prednisone Questions
« Reply #3 on: Aug 30th, 2002, 8:22pm » |
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Ditto what drk said...verapamil 240mg 2X day used to work, but now I'm up to 3X day. It's worked for at least a decade, and no side effects for me, though you want to watch it if you have low blood pressure or heart disease. Your verapamil dose sounds a little low, but that gives you some room to increase it (with MD approval, OF COURSE) if you need to.
Verapamil does take a little time to get started, so I've learned to start taking it at the first sign the beast had tracked me down again.
Kilo
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ChristineL
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Re: Verapamil and Prednisone Questions
« Reply #4 on: Sep 2nd, 2002, 7:58am » |
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I am going to ask my doctor to start me on Verapamil as the pred has helped tone down the intensity and number of Ch's but hasn't broken the cycle.
She has been referring to the Neruoland webite for meds and doseage which suggests 240-480 MG. I'd like to give her some input from you guys so what doseage do you think I should ask for to start? I also understand there are different variations of Verapamil - which one should I ask for?
Thanks
Chris L
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forgetfulnot
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Re: Verapamil and Prednisone Questions
« Reply #5 on: Sep 2nd, 2002, 1:09pm » |
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240 did nothing for me, went to 480 and whamo went from chronic to mildly eposodic in about a week. That was about 4 years ago. BTW, I use the extended release type 2 x 240 daily, it is the opinion of some that the non extended release type works better.
Lee
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| « Last Edit: Sep 2nd, 2002, 1:14pm by forgetful » |
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Ueli
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Re: Verapamil and Prednisone Questions
« Reply #6 on: Sep 2nd, 2002, 3:06pm » |
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It looks like it's time to quote once more from the top notch expert on CH:
Correct management of cluster headaches
by Prof Peter Goadsby and Dr Manjit Matharu
Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved.
Print out this article and show it to your doc.
The same two experts prefer the regular release Verapamil over the extended release.
PFNADs
Ueli
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ChristineL
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Re: Verapamil and Prednisone Questions
« Reply #7 on: Sep 2nd, 2002, 5:38pm » |
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Thanks Ueli 
Chris L
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justin
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Re: Verapamil and Prednisone Questions
« Reply #8 on: Sep 2nd, 2002, 8:52pm » |
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same boat
i was on verapamil 6 months ago. i was getting 1-2 ch a day. switched to depakote and topomax and diltiazem and tried a bunch of other things in combinations. including dhe. but all that left me with 4-5 CH a day.
so i'm going back to verapamil. 480/day. i know it takes 2 weeks to get started and i was getting hit hard so i'm taking prednisone for a couple weeks to get verapamil going. hopefully. 40mg of verapamil works for me. i'm sensitive.
when i get off the prednisone i will be taking 480mg pred and 1000mg depakote. hopefully that will work. if not hopefully it will just be less than 4 a day.
otherwise maybe i'll try higher prednisone, but i get lightheaded sometimes and the constipation can be a bitch. better than CH i guess.
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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Marcos618
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Re: Verapamil and Prednisone Questions
« Reply #9 on: Sep 3rd, 2002, 9:08am » |
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Thanks everyone for the info. It has been a WIERD weekend. I forgot to take one dose of the Prednisone on Saturday, but did NOT get a CH. THought that was strange, so on Sunday I did the same, skipped one dose as a test to see if I was going to trigger a CH. Nothing happened on Sunday. My cycle only started 6 weeks ago, think I an exiting it already. THis will be a record for the shortest CH period ever for me. Had one that lasted 18 months. Still get a few "jabs" every so often, but plan to start to reduce the Pred every few days till I am off. Will keep taking the Verap until next DR appointment.
I lost about 50% of the feeling in my right arm and hand. Dr. said that was from the prednisone and should get the feeling back as I reduce the levels. Guess this will take a while as I get off this stuff.
Thanks again for everyone's help. Just learned of someone else in my neighborhood that gets CH's also and pointed them in this sites direction.
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Buster
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Re: Verapamil and Prednisone Questions
« Reply #10 on: Sep 11th, 2002, 10:52pm » |
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Hi All,
We are new to the board. My husband, Buster has been a Chronic Cluster sufferer for 30 years now. We have taken all these remedies one time or another. The last series put him in the hospital and they did the DHE injections, oxygen and Prednisone. that cobo did knock them out after 18 months of hell. His average series is 6 months, 15 HA daily 24X7. He finally collapsed-thus the hospital stay. He is now coming off prednisone. He started with 5 a day (20mg each). He is down to 1/2 a pill for 2 weeks. Even with the reduction he experiences awful leg and hand cramps. We are taking potassium and eating our bananas.
My question to those that are taking Verapmil, which we haven't been offered by the doc yet is: Now that our series is over, do we WAIT until the next series to start this treatment? Or is this something he should get on now. From what I am reading-this is a preventative-something that never ever works in our case ( a preventative). What a find if it works! 
Your best ideas are appreciated! Of course, no one likes to take meds if not needed, and if side effects are minimal on this drug it sounds like what we may need. If history repeats itself, Buster will start another series in Feb. What is the longest any of you have gone between series? And I dont know if this info helps. They say CH are not herditary-but out of 5 siblings. 3 of them suffer or suffered with CH's and the other two may have-those were the days where no one had a clue what theywere. Thanks for listening to my ramblings. I am excited to find this board! Finally some folks that know what we feel...Pat- wife of a sufferer!
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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: Verapamil and Prednisone Questions
« Reply #11 on: Sep 11th, 2002, 11:15pm » |
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Hey Pat and Buster.....sounds like you've been "the Rounds" with this awful thing and I'm glad you found us....sorry you're here. There is a WEALTH of information here and somewhere down in the upholstery we will find the "key". Read up....these crazy SOB's are not gonna give up until we are all pain free.....Join OUCH (special offer all day today and tomorrow...and tomorrow...and tomorrow...FREE!!) and help us with your experiences.....we'll try to support you with ours.
Pat ...we have a forum for supporters.... and kids.... and we are all here to help sufferers.....Buster!....step up and be counted!
Welcome and come back......best....Steve
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Ueli
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Re: Verapamil and Prednisone Questions
« Reply #12 on: Sep 13th, 2002, 7:44am » |
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Welcome Pat and Buster, you'll find lots of information here.
One point that got me: 15 headaches a day. That is a lot more than for the average clusterhead. It is more typical for a related disease, CPH (Chronic Paroxysmal Hemicrania). I would recommend Buster to look into this possibility, as Indomethacin (Indocin) has an almost 100% success rate for CPH.
PFNADs
Ueli
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justin
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Re: Verapamil and Prednisone Questions
« Reply #13 on: Sep 16th, 2002, 2:22pm » |
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sorry, i had some typos in my post above
40mg of prednisone works for me. i've weened off decreasing 10mg every 3 days. (worked great for slow taper)
so now i'm going bare with 480mg/day of verapamil and 1000mg/day of depakote. so far , no headahces. knock on wood and pray for me!
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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ChristineL
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Re: Verapamil and Prednisone Questions
« Reply #14 on: Sep 17th, 2002, 4:11pm » |
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Just an update...............I have been off the Pred for a week and have been on 120 mg Verapamil twice a day for about 10 days. Knock on wood no headaches for a week so far. The added benefit of the Verapamil for me is that I was on Altace for high BP - now the Verapamil takes care of both problems. Went to the Dr. this morning and my BP is great.
Chris L
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