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        Cluster Headache Help and Support >> Cluster Headache Specific >> sort of new here...question about Verapamil
        
(Message started by: danm on Apr 4th, 2006, 2:49pm)
Title: sort of new here...question about Verapamil
Post by danm on Apr 4th, 2006, 2:49pm
Hi....I have been on 360 mg of Verapamil for about a month now and the beast has finally subsided....keeping my fingers crossed.  Does anyone have a recommendation for how long I should stay on this dosage and if/when I should stop.  My neuro recommended staying on for good but this much makes me feel a little sluggish.  

Thanks for any help.
Title: Re: sort of new here...question about Verapamil
Post by NotH20 on Apr 4th, 2006, 2:58pm
Sluggish?  Wait until you get on 960/day like me  :-/  Sluggish is an understatement.

My recommendation would be to slowly reduce your meds for a few days....if you don't get a ch, then taper some more for a few more days.  Pretty soon you'll be off your meds.  If you start getting hit go back up to the higher dosages.

After a while you could be med free!   ;;D

Sounds like you ran off the Beast - great job!   :)

Mia
Title: Re: sort of new here...question about Verapamil
Post by dejay on Apr 4th, 2006, 7:08pm
 Glad this came up. I've been painfree for about 5 weeks, and no hits or shadows for 2 weeks. Started tapering verapamil 3 days ago. Today I felt 1st hit in a while. freaked me out. I went back to daily doseage, which is only 240, 120 2x.  I was wondering if that would get me back on tract. I don't want to go through steriod tapper again.

 It's so hard judge this cycle. Different from others and allergies are bad here right now. Maybe it was just that and my sinuses, but it freaked me. I'll try again in a couple of days.
Title: Re: sort of new here...question about Verapamil
Post by Kris_in_SJ on Apr 4th, 2006, 7:17pm
With Verapamil, slow and steady withdrawal wins the race.  It took me 5 months last cycle to go from 480mg/day to 0.  I was stuck at 240 for about 5 weeks, then stuck again at 120 for about 8 weeks.

Work with your doc, and don't be in a big hurry to get off.  However, any doc who tells you to stay on meds when you're not in cycle needs to be better informed.

I did that first cycle, and found out the next time I needed twice as much for it to finally work.  During cycle, Verapamil reduces the intensity and severity of cluster attacks.  It does not - repeat, does not prevent the next cycle from happening.

The moral here is ... why take meds between cycles if you don't need them.

PF Wishes,

Kris
Title: Re: sort of new here...question about Verapamil
Post by Mr.YL on Apr 4th, 2006, 10:26pm
The moral here is ... why take meds between cycles if you don't need them.

hmmm verapimil...good topic I wish to respomd to . after a huge burst of prednisone an the doc should have put his pencil away or take away from him I finally broke the beast with a 700 something mg of verapimil. Since then I have maintained a 240 mg daily am. Slight shadows here an their nothing worse the a kip 5 give or take . have tried to lower the dose cause ( maybe it to makes me groggy) though when I go from 240 to lower after asking my doc if I could try it it is always a no go and bacxk to the original 240 after tryin to cut it in half. only a few bad ones... so their is my perspective. Blood pressure is excellent. Even bads  are not as bad as without support and understanding. Thank goodness i got a good support group. THANKS...Mr.YL
Title: Re: sort of new here...question about Verapamil
Post by burnt-toast on Apr 4th, 2006, 11:45pm
This issue should be discussed with your Neuro.  It comes up often and there is definately a tapering off requirement that your doc. should take you through.  Stopping suddenly or ramping down too soon may give this nightmare the reason it needs to pay an immediate return visit or worse.  The process of ramping down usually begins after a month or more of pain free time.  You're on a relatively low dosage so the process my be short for you but definately take this up with your doc.

You should also discuss ramping up requirements as well.  This is typically based on the anticipated start of your cycle(s) or your first indicators that a cycle is beginning.  This is a period of time when some Neuros. I've talked with belive a cycle can be shortened/aborted by getting on the preventatives quickly and maybe hitting CH with a Prednesone taper prior to the cycle being fully active.

On being sluggish - most folks will develop tolerance over time.  After being @ 720mg daily for several years I no longer felt sluggish however after starting to ramp down my dosages - I now feel sluggish - go figure.

Tom

     
Title: Re: sort of new here...question about Verapamil
Post by danm on Apr 5th, 2006, 9:12am

on 04/04/06 at 19:17:21, Kris_in_SJ wrote:
With Verapamil, slow and steady withdrawal wins the race.  It took me 5 months last cycle to go from 480mg/day to 0.  I was stuck at 240 for about 5 weeks, then stuck again at 120 for about 8 weeks.

Work with your doc, and don't be in a big hurry to get off.  However, any doc who tells you to stay on meds when you're not in cycle needs to be better informed.

I did that first cycle, and found out the next time I needed twice as much for it to finally work.  During cycle, Verapamil reduces the intensity and severity of cluster attacks.  It does not - repeat, does not prevent the next cycle from happening.

The moral here is ... why take meds between cycles if you don't need them.

PF Wishes,

Kris


Thanks for this helpful info.  My doc - and this is my third neurologist in the last year - has told me that I should stay on a small dose (180mg daily) for good.  I'm not crazy about that idea, especially if it won't do anything to stop next cycle from coming.  I think I will stay on 360 mg for another week or so to make sure I am still PF, then tone it down to 180mg for a 3-4 weeks before cutting down to 0.  Does that sound reasonable?
Title: Re: sort of new here...question about Verapamil
Post by burnt-toast on Apr 5th, 2006, 10:54am

on 04/05/06 at 09:12:35, danm wrote:
Thanks for this helpful info.  My doc - and this is my third neurologist in the last year - has told me that I should stay on a small dose (180mg daily) for good.  I'm not crazy about that idea, especially if it won't do anything to stop next cycle from coming.  I think I will stay on 360 mg for another week or so to make sure I am still PF, then tone it down to 180mg for a 3-4 weeks before cutting down to 0.  Does that sound reasonable?


There's so much unknown about this disorder that at times nothing seems unreasonable.  You have a choice to make - follow your Neuro's directions to the letter or work with your Neuro to establish the type of treatment options that you prefer.  

Finding what works/doesn't work for you will take effort and a collaborative relationship between you and your Neuro.  There are no magic answers

If you want to stop Verapamil while in remission work it out with your Neuro. - get an explanation of why he/she believes small dosages during remission are beneficial,
do some research/soul searching and make a decision.

Keep a journal and track your progress.

If you experience an increase in CH or a rapid return - then work with your Neuro. to establish a treatment option/level that works - and one that you are comfortable with.


Tom

Title: Re: sort of new here...question about Verapamil
Post by sandie99 on Apr 5th, 2006, 12:15pm
Here's what I did: I was on 600mg/day when ch went into remission. After a month of PF time (I was a chronic and had taken verapamil for a long time, first 200mg, then 400 and then that 600mg) I slowly begun to taper the dose down. I dropped it 100mg at once slowly, ready to get back up if promblems would appear. But none did. I was PF nearly a year, which was wonderful for a chronic. :)

Best wishes & PFdays,
Sanna


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