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djphrenzy

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Does Verapamil actually work for anyone?
Feb 4^th, 2013 at 3:42pm

So if you read the medical literature, Verapamil is effective in 94% of episodic patients when sufficient dosing is achieved. But if you read the forum here, people post that they're taking 1200mg daily and still going through 'trex like candy.

This is contradictory and confusing. I would like to hear people's opinions.

Thanks.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Does Verapamil actually work for anyone? Reply #1 - Feb 4^th, 2013 at 3:47pm Not sure whose posts you're reading, but it seems to be effective in at least mitigating the symptoms of CH for somewhere between 50% and 60% of the people who eventually achieve sufficient dosage. The problem is that it usually stops working after a time.
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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: Does Verapamil actually work for anyone? Reply #2 - Feb 4^th, 2013 at 4:01pm Brew wrote on Feb 4^th, 2013 at 3:47pm: The problem is that it usually stops working after a time. I see. That makes sense then.
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Bob Johnson

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Re: Does Verapamil actually work for anyone?
Reply #3 - Feb 4^th, 2013 at 4:49pm

It's the nature of any modality in which people can express opinions to tend to get the extremes and, most especially, negative opinions.

When it comes to medicine, there are few things more effective than death to get a realistic "100% success" rating.

The worst thing you can do here is to attend to the single persons who report failures in a treatment. It's via mass, collective studies that you get a statistical picture which gives results with validity. This is why I keep posting the PDF file, below, and other studies of its kind as they are publishedd.

The effectiveness of any given med is important but the effectiveness of a med is affected by our bodies. Individual body chemistry also affects outcomes.

Bottom line: any absolute claims around a medicine are to be disregarded.

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« Last Edit: Feb 4^th, 2013 at 4:51pm by Bob Johnson »

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Bob Johnson

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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: Does Verapamil actually work for anyone? Reply #4 - Feb 4^th, 2013 at 5:10pm Good point Bob. Being a person who also suffers from GAD, I tend to find the worst possible outcome and assume that will be my outcome as well. I have to make a conscious effort to avoid doing that.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Does Verapamil actually work for anyone? Reply #5 - Feb 5^th, 2013 at 7:44am But to answer your question, yes. Verapamil does help me. I know because when I try to reduce the level I take, the CHs come roaring back in short order. Still, I have to take it in combination with other meds, so does it work by itself? Not for me. It is a vital part of the coctail though. blessings. lance
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Marc

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Re: Does Verapamil actually work for anyone?
Reply #6 - Feb 5^th, 2013 at 7:06pm

Yes. I've been chronic for over 14 years and I can very effectively adjust the dose I need at any given time. In MY EXPERIENCE ONLY (so I don't have people yelling at me):

- The "right' dose for mitigation of CH's can be the dose that causes arrhythmia's and other negative effects like edema and the ever dreaded erectile dysfunction. Not that that I would ever have that problem Wink

(I lie a lot)

- Every so often (like 12-18 months) I need to stop taking it. I know it's time when the effectiveness becomes obviously ineffective! It only takes about 2 weeks, then I can start over again.

After being at this for so many years, my approach is:
- ALWAYS have O2 available to knock them down at the first hint which is WAY before the pain of you pay attention.

- RC seeds once a month at 25-30 seeds ground up using a cheap pepper grinder. (I've tried up to 200 seeds in a does and didn't see any difference in efficacy)

- Batch's D3/magnesium/Omega fish oil/calcium routine FAITHFULLY.

Since I FAITHFULLY started using the RC seeds monthly AND the vitamin/mineral approach, my O2 tank has been gathering dust. My girlfriend "640 mg Vera" has been terribly neglected and my wife is smiling a lot more........

Oh, and the CH's have faded into the background.

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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: Does Verapamil actually work for anyone? Reply #7 - Feb 5^th, 2013 at 8:30pm Marc...delightfully written...with sly style.... AND informative...it don't get much better than that brother....thank you.... Best, Jon
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Slim CH.com Newbie Offline I Love CH.com! Posts: 17 Bethlehem, PA Gender:	Re: Does Verapamil actually work for anyone? Reply #8 - Feb 11^th, 2013 at 7:27am Verapamil does work for me, but I need 720 mg. Anything less and it becomes much less effective. I used to have to combine it with an assortment of anti-seizure drugs, but since I had ONS, I have been able to get off the depakote, topomax, etc., but I still need the verapamil for effective prevent.
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Mike NZ

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Oxygen rocks! D3 too!

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Re: Does Verapamil actually work for anyone?
Reply #9 - Feb 11^th, 2013 at 1:15pm

It worked well for me in taking me from 2-3 CHs a day to perhaps 3-4 a week which to me was a worthwhile decrease but I had to get to the right dose level (480mg for me) for it to be effective.

I've since been using Batch's vitamin D3 approach and have been CH free for over a year and had only 10 CHs the year before, so I've not used verapamil for quite a while.

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Does Verapamil actually work for anyone? Reply #10 - Feb 13^th, 2013 at 7:44am Quote: and the CH's have faded into the background.
Back to top	Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!" IP Logged

Marc

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Re: Does Verapamil actually work for anyone?
Reply #11 - Feb 15^th, 2013 at 8:11pm

Boob,

Pretty weird after all of these years, huh? I remember waaaaaay, waaaaay back when you turned 60 and I hoped that mine would stop before that. Well, this year I'll be there - so maybe it's just old age doing the trick. Who knows.... maybe God figured that I had more important things to get done.

WOW! I just checked...after 4 years being retired, it looks like you're headed for Valley Ranch!!!?? Ya' gonna miss 16th st?

Hoping all is well with you, Sarah, the girls and their families.

Marc

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« Last Edit: Feb 15^th, 2013 at 8:22pm by Marc »

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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: Does Verapamil actually work for anyone? Reply #12 - Feb 15^th, 2013 at 8:50pm Marc wrote on Feb 15^th, 2013 at 8:11pm: Boob Couldn't help myself.
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Marc

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Re: Does Verapamil actually work for anyone?
Reply #13 - Feb 15^th, 2013 at 10:30pm

djphrenzy wrote on Feb 15^th, 2013 at 8:50pm:

Marc wrote on Feb 15^th, 2013 at 8:11pm:

Boob

Couldn't help myself. Cheesy

Long, long ago, and far, far away there were people on this board with strange sounding names like "Luinda" and "Drummer" and "Hub" and "Boob" and "Slammy" and "Jonny" and "Elaine" and "Margi" and "Riccardo" and "Pinky" and "Q" and so, so many more........

Sometimes I slip and revert back to speaking of them by their ancient names.

Marc

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Does Verapamil actually work for anyone? Reply #14 - Feb 16^th, 2013 at 6:42am Don't forget that Mark guy who spells his name with a "c"!
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jess-MTL

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Re: Does Verapamil actually work for anyone?
Reply #15 - Feb 20^th, 2013 at 9:44pm

Verap worked well for me in the beginning. I would have to be over 480mg a day though. It would help with the intensity of the attacks, and I would have 3-4 a day instead of 6-8. I stopped taking it when I noticed that it made my cycles drag on forever though. Sure, I wouldn't have as many attacks per day, and they weren't as painful, but I would have them for over 6 months, instead of the usual 2-3 months cycles.
I haven't tried it again since I have stopped. Maybe a break would help, as I have heard other people had to do this as well.

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ndhillst CH.com Junior Offline I Love CH.com! Posts: 28	Re: Does Verapamil actually work for anyone? Reply #16 - Feb 24^th, 2013 at 10:02pm Verapamil is working for me - 250mg twice a day along with 2000mg of Depakote once a day. I am also taking the Fish oil,vit d/zinc, vit k, etc regimine. Pain free now for about 3 weeks after 4 months of CH almost daily.
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yelsew

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Re: Does Verapamil actually work for anyone?
Reply #17 - Feb 25^th, 2013 at 3:29am

I've been on Verapamil 240mg/day for 13 years and it mostly worked. Sometimes the headaches would pierce through; oxygen, energy drinks, coffee, ice cold water on head, instantly doing intense workout, etc. would be a second line of defence then.

Some on this board mention that Verapamil drag the clusters out or even simulate chronic cluster headache and I can agree with this. In the beginning I was episodic, though I never got a good handle on when exactly the clusters were, but after starting Verapamil I couldn't get off this med or I'd have the beast return in a few days.

Finally this January I was able to wean off with help of the Vitamin D, Magnesium, Omega 3 regimen (thanks Batch!) with only one or none headaches a day.

Nonetheless it worked well for me all those years, and I can imagine for some to be the only option.

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