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        New Message Board Archives >> Jan-Mar 2004 >>  Verapamil - for episodic, chronic, or both?
        
(Message started by: CJohnson on Jan 22nd, 2004, 2:06pm)
Title: Verapamil - for episodic, chronic, or both?
Post by CJohnson on Jan 22nd, 2004, 2:06pm
 What is the perception of the clusterhead community regarding verapamil? Is it more for episodics, chronics, or equally effective for both kinds of clusters?

PFDANs
-Curtis
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by brad267 on Jan 22nd, 2004, 2:13pm
Episodic -- works WONDERFULLY, once ya find the right dosage..

-Brad
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by CJohnson on Jan 22nd, 2004, 2:16pm
Hey, Brad. How long does that typically take? How long did it take you? Do you stop taking it when your cycle is over?

PFDANs
-Curtis
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by thomas on Jan 22nd, 2004, 2:40pm
Didn't help me at all, tried all different dosages, I'm episodic.
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by JDH on Jan 22nd, 2004, 2:46pm
I’m episodic and I have used up to 480mg of Verapamil daily. The only results I seemed to get were low bp and constipation. I couldn’t tell if affected my ha’s one way or another.

Jim
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by PatFan on Jan 22nd, 2004, 3:04pm
I am episodic as well and I convinced the doc to prescribe Verapamil in January of 2003 and it worked very good for me. I found that after about three days of 240mg X 2 a day, all the full-blown headahes were gone and only had shadows which were only a couple of minutes in duration. Once I felt like there were no more shadows (about a month later) I tapered off Verapamil and did not start back on it until about two weeks ago, as this time of year is prime time for me. I started feeling the shadows so I am taking 120mg X 2 a day and the shadows ceased a few days later. If they start back up, I will go to my full dosage of 240mg X 2 a day with O2 to abort.
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by thomas on Jan 22nd, 2004, 3:07pm
I would also like to add that during the verapamil trial time, I was using imitrex to abort, so I may have been experiencing re-bounds........... dunno?
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by don on Jan 22nd, 2004, 4:42pm
Profeesor Goadsby suggests you start tapering off the verap about 2 weeks after the last attack.
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by ozzman on Jan 22nd, 2004, 5:05pm
Reprint from the meds board:

Right down my alley. Ohhhh, Verapamil, the wonders, the never ending cycle....

My first time I took Verapamil was last year at the end of the cycle. I had the feeling that it lenghtened my cycle (4 months), then after 3 months PF I felt the beginning of a new cycle coming along so I started ramping up on the Verap as soon as I had breakthrough CH's. After 6 months on it I decided to quit the Verapamil since it had made my usual 4-6 week cycle a 6 month (so far, actually going on 7 now) cycle.  

I only went up to 320 mg and it was the the regular release kind. Never before, in 15 years have I had such a long cycle. I get periods of PF days that last up to two weeks and then things start over again. I am not hit as my "old regular cycles", that is, I'm not hit 4-6 times a day, but rather once or twice a day or every two days.  I still get all of the symptoms, droopy eyelid, stuffed up nostril and the pain of course. Imitrex has a 90% success rate and if I use it with O2, the combo is 100% effective.

So Verapamil for episodics, even as a preventative before the cycle starts, seems to me it is not such a good idea.  

I have mentioned this to Catlind and it will be one of the topics she will bring up at the New England Center for Headaches next week when she meets with Drs. Bigal, Shefftel, and Rappaport.


Ozzy
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by Kirk on Jan 22nd, 2004, 5:24pm
Chronic and it works pretty good at 320Mg a day. Sometimes have to ramp upto 480 Mg. a day. Other than that fine.

TTFN
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by pubgirl on Jan 22nd, 2004, 6:08pm
Small add on. Goadsby also recommends longer term/constant Verapimil users should take a 'holiday' from it occasionally too.

Wendy
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by t_h_b on Jan 22nd, 2004, 6:17pm
Chronic, took 240mg for a long time, then 480mg.  Helped reduced the intensity and frequency but never even came close to eliminating them.
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by brad267 on Jan 22nd, 2004, 6:54pm
480mg/day...  It took 3-4 weeks to start working for me, if I remember right, and have not gone off it yet.  Neuro wants me to take it all the time -- in cycle or not.

-Brad
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by jonny on Jan 22nd, 2004, 7:07pm

on 01/22/04 at 17:05:40, ozzman wrote:
So Verapamil for episodics, even as a preventative before the cycle starts, seems to me it is not such a good idea.  


Now I know your not trying to turn anyone off with that statement Ozzman, but, read it...it could do just that......What dont work for you dont mean it wont work for another episodic.

Me?....I like my 480 a day of verap sprinkled with 600 of Lithium and it has liked me for over a decade ;;D

........................jonny
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by Prense on Jan 22nd, 2004, 7:21pm

on 01/22/04 at 18:08:29, pubgirl wrote:
Small add on. Goadsby also recommends longer term/constant Verapimil users should take a 'holiday' from it occasionally too.

Wendy


Wendy,

I had never heard that.  I have been on verapamil for 3+ years now...  Is that in an article somewhere that you could link?

Thanks,

Chris
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by jonny on Jan 22nd, 2004, 7:33pm

on 01/22/04 at 19:21:24, Prense wrote:
I had never heard that.  I have been on verapamil for 3+ years now...  Is that in an article somewhere that you could link?


Almost 13 years every single day for me, Dude.....no breaks

..............................jonny
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by eyes_afire on Jan 22nd, 2004, 7:37pm
For me, verapamil starts working in a week.  Since I started taking verapamil I no longer know whether I'm episodic or chronic.  My cycles used to be 5 or 6 months.  The only thing I know is that now I can't stop taking it.  Didn't really matter anyway because I don't have enough finances to treat these damn things using strictly abortives.  Costs too damn much.    >:(

--- Steve

PS... but verapamil works very well for me... so far... [smiley=worried.gif]
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by 5-string on Jan 22nd, 2004, 8:59pm
Verapamil pulled me out of cycle. Following my neuros direction I tapered off after cycle...BAM! got slamed. went back on and no more attacks. I get shadows though. I guess my cycle was'nt over.
I've been on it daily since august with the exception of 2 weeks in october...I'm staying on it....
...Mark..
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by pubgirl on Jan 23rd, 2004, 5:03am
Sorry Prense, no link, but I think somewhere floating around in the US is a copy of the video of his talk at the conference in Birmingham last year about the latest news in CH research and treatment.(which was fascinating)

Cathy videod it for ch.com and sent it over.

It was at that talk that he said it.
It may be in some published material somewhere, but I wouldn't know where.
My guess is that it is still his expert 'opinion', but that he has not published meaningful data to back it.


Wendy
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by ozzman on Jan 23rd, 2004, 9:51am

on 01/22/04 at 19:07:28, jonny wrote:
Now I know your not trying to turn anyone off with that statement Ozzman, but, read it...it could do just that......What dont work for you dont mean it wont work for another episodic.

........................jonny


Fair enough, let me rephrase. Verapamil worked for me at ending the cycle and making the CH less frequent and less painful. The cycle however became extremely long.

Now for all the new people reading my previous statement or any statement I may make in the future. This is only my opinion, my experience. I am not a doctor, nor pretend to be one. Any advice, or opinion must be taken with a grain of salt and an ounce of judgement.

Ozzy
Title: CaRe:  Verapamil - for episodic, chronic, or
Post by Carl_D on Jan 23rd, 2004, 9:54am
When I was episodic and discovered it through MHNI (Michigan Head-Pain and Neurological Institute), Verapamil coupled with Lithium helped me, but the Lithium made me ill the first two weeks on it. Worked like a charm. Since going chronic in '98 though, it has had no effect.

Peace,
Carl D
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by carries on Jan 23rd, 2004, 11:40am
once the right dose is found it works wonders for cronic
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by pubgirl on Jan 23rd, 2004, 12:28pm
Sorry, just another quick point.
I've seen from the meds board that some people are taking the slow release Verap. This may be why it isn't working for them.
From reading/his lecture only as I don't use it but Goadsby says the slow release is almost pointless and always prescribes the quick release for his patients.


W
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by BruceD on Jan 23rd, 2004, 1:20pm
OK, my 2 cents. Last August I started taking vera for the first time. I'm episodic & my fall cycle always starts sometime late Aug to early Sept. This year I was PF (except for a handful of shadows in Oct) That's about the first fall I can even remember not having CH. What a Godsend!

I'm now tapering off vera & plan on starting back up in Aug as a preventative. Hey, it may have been a fluke, but I'm happy.

Take care
BruceD
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by Brian_Y on Jan 23rd, 2004, 2:25pm
I just read that 2 weeks after last attack you should start to taper.

What is a good approach to this?

Take it every other day, then every third day, etc. etc.?

I am feeling mucho weird right now and I thought that maybe it was the verap.  Called the neuro.  His "nurse" called back and said:

"Well, the symptoms you are describing he [the neuro] does not feel are cuz of the verap, but he said you can stop taking it if you want"

What the fuck?

This nurse got an EARFUL of straight out, unfettered Brian_Y arrogance and misanthropy.  

Still do not know how to taper off, tho.

But it made me feel better to ruin her day.

Ah, I MUST be getting better...

So what do y'all think?  How to taper?
Title: Re:  Verapamil - for episodic, chronic, or bo
Post by t_h_b on Jan 23rd, 2004, 6:27pm
How much are you taking and when?


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