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Gramma-Nancy
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Verapamil question...
« on: Jun 30th, 2003, 12:43pm »
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I'm certainly not new to this site...but have never posted here.  Figured this would be the BEST place to get an answer to my question though.  Smiley
 
Brief background:  I'm a 55 year old female who has had CH off and on now for 23 years.  The past few cycles have settled into 2- 2 1/2 years between them.  What works the best for me is taking Verapamil when a cycle starts (which doesn't abort the cycle, but lessens the frequency and intensity of the HAs), and oxygen when I get a HA, which 'usually' cuts the length of the HA down from an hour to about 20 minutes, and lessens the intensity.
 
Now for my question!  My blood pressure has gotten to where I need meds for it, but we're having trouble coming up with a med that I can tolerate.  I know that Verapamil is used for BP, and the only unpleasant side effect from it seems to be constipation, which I can deal with in other ways...but I hesitate to go on it on a regular basis for fear that when a CH cycle starts my body will have adjusted to the meds and they won't be as effective for the headaches anymore.  Can anyone offer any enlightened input into this subject?
 
Thanks in advance for any help.  Bless those who started this site.  It has been my 'friend' for many years now for information and a place I can go when I feel alone and that nobody understands!
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  cathy_lucas47   cybersis1965
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Re: Verapamil question...
« Reply #1 on: Jun 30th, 2003, 1:03pm »
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Hi and welcome....I have just returned from a conference with Dr Goadsby he suggested that if you are episodic to have a break from it between cycles, which is okay if you can accuratley determine your cycles...this is because there is some evidence that your body may become used to verapamil.
 
Cathy
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Gramma-Nancy
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Re: Verapamil question...
« Reply #2 on: Jun 30th, 2003, 2:07pm »
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Thanks for the welcome and the info, Cathy.  That's kinda what I suspected, but was hoping I was wrong.  One thing I definitely don't want to do is lessen any of the relief I *am* able to get from the Verapamil...
 
Thanks again for the info.
 
Nancy
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Major_Headcase
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Re: Verapamil question...
« Reply #3 on: Jun 30th, 2003, 3:18pm »
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Welcome & Howdy Do Gramma Nancy,
 
Well, looks like I'll be a guinea pig for this ... I'm a 52 yr old male, episodic (usu 12-14 months between cycles), I've used Verapamil and Prednisone to treat my CH previously. After my last CH cycle, my doc says my BP is a tad too high and he wants me to stay on the Verapamil 24/7 now.  
 
During my last CH cycle, I took 720 mg/day - previous cycle was 480mg/day - until the cycle ended. For now, my BP Verapamil doseage is 240mg/day. Verapamil has worked well for me in the past ... I REALLY hope that staying on it full-time, albeit at a lower dose, does not affect its ability to help me with my next CH cycle. If the Beast stays on schedule, I should know sometime between December '03 and March '04 ...   Roll Eyes
 
-John
« Last Edit: Jun 30th, 2003, 3:18pm by Major_Headcase » IP Logged
Gramma-Nancy
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Re: Verapamil question...
« Reply #4 on: Jun 30th, 2003, 3:35pm »
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John:
 
I really do hope it works for you!  Finding another BP med that I can tolerate has turned out to be much harder than I would have imagined!  Undecided  I hope you post again about it if/when you find out.
 
Good luck!
 
Nancy
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eyes_afire
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Re: Verapamil question...
« Reply #5 on: Jun 30th, 2003, 4:55pm »
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Good to meet you Nancy.  I can't really address your concerns because I don't really know.  Although I have always suspected that the body will eventually get used to it.
 
Cathy,
Uh oh.  Damn.  You can't just plop that statement in there without me asking more questions  Smiley Shocked ??? Roll Eyes
 
1.  Does that mean that the CH will come back stronger when it breaks through the verapamil?
2.  How long a break is required?
3.  Does the body's blood pressure also get used to it? (meaning that you have an elevated BP after stopping it).
4.  Is this also true for lithium?
 
Fear is here!  I'm trembling!
 
--- Steve, one of many... Cry
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cathy
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  cathy_lucas47   cybersis1965
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Re: Verapamil question...
« Reply #6 on: Jun 30th, 2003, 5:07pm »
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Hey Steve...sorry don't know....all I do know is that Dr Goadsby insinusted that there may be a link between Verapamil and clusters turning from episodic to chronic...
and that if possible you should take a break even if when ch returns it doesn't work as quick...
 
As for BP it does lower the blood pressure so not sure what would happen when you come off..?? maybe someone could help me out here...
 
Sorry didn't mean to go upsetting anyone...
 Undecided
Cathy
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jonny
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Re: Verapamil question...
« Reply #7 on: Jun 30th, 2003, 5:11pm »
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on Jun 30th, 2003, 4:55pm, eyes_afire wrote:
Good to meet you Nancy.  I can't really address your concerns because I don't really know.  Although I have always suspected that the body will eventually get used to it.
 
Cathy,
Uh oh.  Damn.  You can't just plop that statement in there without me asking more questions  Smiley Shocked ??? Roll Eyes
 
1.  Does that mean that the CH will come back stronger when it breaks through the verapamil?
2.  How long a break is required?
3.  Does the body's blood pressure also get used to it? (meaning that you have an elevated BP after stopping it).
4.  Is this also true for lithium?
 
Fear is here!  I'm trembling!
 
--- Steve, one of many... Cry

 
Looks to me that all Cathy is saying is get off meds if you dont need them.
 
I have no idea where some of your questions arise from, Bro
 
...............................jonny
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Wendy the Brit
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Re: Verapamil question...
« Reply #8 on: Jun 30th, 2003, 5:18pm »
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Steve
 
Since Cathy isn't a doctor and couldn't possibly answer the questions you ask I can think of two possible ways of getting an answer
 
1. Post on OUCH UK as lots of Prof Goadsby's patients are on there and may know the answers from their meetings with him
 
2. Email Queen's Square and ask. I emailed them with a CH question before I was being properly treated and I got an answer back from one of Goadsby's team in less than two days
 
 
Hope this helps
 
Wendy
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Wendy the Brit
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Re: Verapamil question...
« Reply #9 on: Jun 30th, 2003, 5:23pm »
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Also Steve
 
He was only recommending a break for Episodics OUT OF CYCLE. If the cycle restarts you take the Verapimil again, so the break is as long as your remission lasts.
 
W the B
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eyes_afire
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Re: Verapamil question...
« Reply #10 on: Jun 30th, 2003, 7:09pm »
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No apology needed Cathy.  My bad.  Sorry for the Freak-out session, folks.  Yup, Jonny, you're right.  As usual my imagination and curiosity exert a controlling grasp as sanity takes a hike... temporarily.  Sure wish I could put them to better use.  Apparently I've been spending too much time ice fishing with my (other) demons lately.  Mind is in the crapper.  It can be recycled (again)... most likely.
 
Cathy and Wendy... thanks for the advice.
 
--- Steve, one of many...
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