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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> VERAPAMIL
        
(Message started by: EDHASFORDS on Apr 25th, 2008, 3:03pm)
Title: VERAPAMIL
Post by EDHASFORDS on Apr 25th, 2008, 3:03pm
Hi all,
I haven't posted here in a while but I do keep up with all your posts.
My question is; how long should a person stay on Verapamil? I have been on 480 mg for the past month.
I am having some side effects. ie swelling of my legs and feet and a few other things!
My doc says it is up to me!
By the way, it has helped with the beast!
Ed  8)
Title: Re: VERAPAMIL
Post by Bob_Johnson on Apr 25th, 2008, 4:34pm
There is no clear medical protocol on when to stop but a sort of agreement, here, to try stopping about four-weeks after your last attack. If the attacks return, start again.

There is no problem with continuing as long as you feel necessary/comfortable--assuming no significant side effects or $ problems!
Title: Re: VERAPAMIL
Post by thebbz on Apr 25th, 2008, 4:41pm
It's always up to you.
http://www.plainboard.com/ch/chtherapy.pdf
Maybe you can find something with less side effects
all the best
thebb
Title: Re: VERAPAMIL
Post by DennisM1045 on Apr 25th, 2008, 4:45pm
Hi Ed,

It's an individual answer.  How much can you put up with is the real question.  

Can you try backing off a little?  Maybe you can find some middle ground where you have a better balance between relief and side effects.

Good luck...

-Dennis-
Title: Re: VERAPAMIL
Post by Jonny on Apr 25th, 2008, 4:57pm
I took 480 everyday for 13-14 years, but I was chronic.

If the beast is gone try taking 240 for awhile, if he dont return you know its safe to stop.

No need to take the shit if you dont have to.  ;)
Title: Re: VERAPAMIL
Post by EDHASFORDS on Apr 25th, 2008, 5:12pm
Thanks to all you guys!
I really appreciate your input!
I was put on a water pill for the swelling but it makes me go pee every hour on the hour. Sometimes more!
Oh well, that is better than the beast every hour!
Ed   8)
Title: Re: VERAPAMIL
Post by bnewman on Apr 25th, 2008, 11:56pm
try dropping your dose to 120mg per day thats what i take now year round . Also ask your doctor about taking hct that might help with the swelling ;)
Title: Re: VERAPAMIL
Post by tony-PA on Apr 26th, 2008, 5:42pm
My last cycle endend feb.23-06.  Since then i've been on verap (my effective dosage is 300mg pd).
Tried 5 times to decrease and had single attacks (twice) or heavy shadows after couple days of being at 160/120 mg.
At present i'm at 200 and going down slowly; cross anything i can cross   ;;D  
Title: Re: VERAPAMIL
Post by KipBubank on Apr 28th, 2008, 3:00pm
I tried Verapamil 6 or 7 years ago and tried Verilyn (time released?) recently.   The first night, I had crazy upsetting dreams.   Second night out of this world dreams with bright red and yellow colors and people I knew and creatures.  I have never done anything like LSD, but that's how I would describe it.   I woke up all freaked out and scared.    The following two days I thought I was going crazy.  Unable to think, panic, scared, paranoid.   I looked up the side effects of Verapamil and there they were, including pychosis.   Great.   So I cut that 120 MG crap out pronto and felt "mentally" like me again in two days.

I will try it again in a week or so, much lower dose, but this time I will be aware that if my mind starts playing tricks on me, I know where it's coming from instead of thinking that I just went off my rocker.  It would be wonderful if it worked, I am really, really desparate right now for a break after 5 weeks of poundings 5 and 6 times a day and night.

PS   I am a cluster lifer.   Diagnosed sometime in early 1990, tried it all, everything, every single thing that exists except adderall.   O2 and Imitrex injections work, everything else, doesn't. I even did Sansert and Prednisone for 3 years!   Remember Sansert?  Depacote, Cafergots, etc, nothing except a dizzy head and a stomache.   Pain pills are a total waste of time unless I catch one the second I feel the first pulse and do not hesitate to down the pills.   If I wait, even 5 minutes to feel-it-out, the window is closed.    

I just finished 2 weeks of Prednisone therapy to "break" they cycle.  Very hard to tolerate 10MGs of that stuff and I was doing 60MG a day and tapered.  Now, Doc says, the prednisone lowered my immune system too much that now I have a blood infection from at the injection point used to take imitrex.    I need this to stop really soon.
Title: Re: VERAPAMIL
Post by brewcrew on Apr 28th, 2008, 3:56pm

on 04/28/08 at 15:00:57, KipBubank wrote:
I tried Verapamil 6 or 7 years ago and tried Verilyn (time released?) recently.   The first night, I had crazy upsetting dreams.   Second night out of this world dreams with bright red and yellow colors and people I knew and creatures.  I have never done anything like LSD, but that's how I would describe it.   I woke up all freaked out and scared.    The following two days I thought I was going crazy.  Unable to think, panic, scared, paranoid.   I looked up the side effects of Verapamil and there they were, including pychosis.   Great.   So I cut that 120 MG crap out pronto and felt "mentally" like me again in two days.

I will try it again in a week or so, much lower dose, but this time I will be aware that if my mind starts playing tricks on me, I know where it's coming from instead of thinking that I just went off my rocker.  It would be wonderful if it worked, I am really, really desparate right now for a break after 5 weeks of poundings 5 and 6 times a day and night.

PS   I am a cluster lifer.   Diagnosed sometime in early 1990, tried it all, everything, every single thing that exists except adderall.   O2 and Imitrex injections work, everything else, doesn't. I even did Sansert and Prednisone for 3 years!   Remember Sansert?  Depacote, Cafergots, etc, nothing except a dizzy head and a stomache.   Pain pills are a total waste of time unless I catch one the second I feel the first pulse and do not hesitate to down the pills.   If I wait, even 5 minutes to feel-it-out, the window is closed.    

I just finished 2 weeks of Prednisone therapy to "break" they cycle.  Very hard to tolerate 10MGs of that stuff and I was doing 60MG a day and tapered.  Now, Doc says, the prednisone lowered my immune system too much that now I have a blood infection from at the injection point used to take imitrex.    I need this to stop really soon.

120mg/day is a very low dose. Probably wouldn't be effective for most.

You said you never took LSD. Well, if you took Sansert, you took something very, very close to it. Both are derived from the same fungus that grows on fermenting grain.

And please don't call verapamil "crap." It works very well for many people, and has perhaps, dare I say, saved a few lives along the way. I never like to see things here that might discourage new members from trying things that may give them their lives back.
Title: Re: VERAPAMIL
Post by Superdave on Apr 28th, 2008, 4:33pm
I  have used Verapamil recently. I experienced little side affects other than digestive issues. On the other hand  I experienced more along the lines of what Kip is talking about when I tried my first and last dose of Topamax, scary night, including blindness in my ch side  eye.  :o

Fact is people react to different drugs in different ways, but it is hard not hold grudges when one scares you like that. >:(

Superdave
Title: Re: VERAPAMIL
Post by brewcrew on Apr 28th, 2008, 5:21pm
A simple "it didn't work for me" would have sufficed.
Title: Re: VERAPAMIL
Post by mezza on Apr 28th, 2008, 10:14pm
kip-

Verap has controlled my ha although I am on a much higher dose than 120 mg-  I take 660 mg a day- 240 in am, 240 at 5 pm and 180 at bedtime-  
also- no side effects to note here that are meaningful-

As brew said- maybe not on high enough of dose to rule out verap as effective or ineffective?  and it has given me a much better quality of life i might add

good luck to you

kelly


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