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Cluster Headache Help and Support >> Cluster Headache Specific >> Could it really be ... ?
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Message started by scubaguy on Jun 3rd, 2008 at 1:59am

Title: Could it really be ... ?
Post by scubaguy on Jun 3rd, 2008 at 1:59am
I hesitate to admit it, but I've been (almost) PF for four days now! Apart from afternoon & evening shadows I haven't had a full-blown attack and haven't needed to get on the O2! So why am I not thrilled beyond belief?!

I'm on Isoptin 80mg (Verapamil, 3x a day) and have cut out alcohol completely as it really sets me off when I'm in a cycle. So, given that I've been PF for these past few days, I'm wondering whether my cycle might really have come (or be coming) to an end ... or whether the Isoptin is simply preventing the attacks from breaking out.

I guess my real question here is: can the Verapamil really prevent CH attacks altogether or does it usually just lessen their intensity? Naturally, I could reduce the Isoptin and see what happens, but if I really don't want to expose myself to new attacks if I can help it.

Any experiences out there are appreciated! Thanks!

Roger

Title: Re: Could it really be ... ?
Post by George_J on Jun 3rd, 2008 at 2:23am
Based on the experience of others here (not me, since I'm a reliable episodic and don't use preventives) you might want to give it a couple weeks before you talk to your doctor about tapering off.  Just to be on the safe side, you know.

Stuff does no major harm, from what I understand.  So no harm done.

Best wishes,

George

Title: Re: Could it really be ... ?
Post by Guiseppi on Jun 3rd, 2008 at 2:23am
I can only tell you how lithium works for me. It doesn't stop the cycle for me, only blocks the headaches. When I've gone pain free for a whole month, I'll start to wean off the lithium, when I hit 600 mg a day I'll know if my cycle is over or not. If I get no head aches, cycle's done, I finish weaning off the lithium. If headaches start breaking through, I ramp back up to 1200 mg and wait another month.

I suspect you'll find similar results with verapamil. Work with your doctor when your going up or down on the dosing as they like to monitor that part. Hoping the block works for the whole cycle!

Guiseppi

Title: Re: Could it really be ... ?
Post by LostAgain on Jun 3rd, 2008 at 3:34am
I can't take my Verapamil (I'm actually on Calan 320 mg per day, which is the non-genaric I think) normally because I don't have any endurance on it, but I was able to take it the past couple weeks and it completely blocked the headaches even with alcohol. I just stopped again because training continues on Wed. and they came back today, so I am still in cycle, but the Verapamil was working great.

So it obviously can block out the headaches completely, but I have experienced CHs in the past even though I was on the meds.

I say wait a little longer and then talk to your doc and see what happens.

Goodluck and pf time for you,
Lost

Title: Re: Could it really be ... ?
Post by Qazpur on Jun 3rd, 2008 at 4:06am
i'm on 480mg verap and have twice this cycle experienced a week or two PF (even had alcohol without problem) only to be pounced upon again once I taper off the meds. it can be very tricky deciding whether the verapamil has the beast vanquished or just subdued...

Title: Re: Could it really be ... ?
Post by habanero on Jun 3rd, 2008 at 8:29am
for me verapamil eased the beginning of period last time.
i think.

this time the first attacks weren't that bad so i didn't start the pills and
surprise, the same thing happened.
this time it's been tolerable.
constant shadowing but only about 10 major attacks in a month.
smaller ones plenty (pain level 6 or 7 sometimes 3xday).
personally i don't believe in verapamil.

don't believe in alcohol theory either.
binge drinkin maybe, but i don't do it so i don't know.
i drink like 3 pints of beer a day.
the pain starts whenever it wants, with or without beer.

m


Title: Re: Could it really be ... ?
Post by Jean on Jun 3rd, 2008 at 9:42am
I started taking Verapamil 360mg at the start of spring ( when my cycles usually begin).  Last year was the worst cycle I have EVER had.  This year since starting the med BEFORE my cycle even started, I have only had strong shadows.  Coffee and energy drinks have been able to knock them out. Even those are gone now.  I  have not used even one imitrex this season!  That being said, I have tried twice to wean off of the Verap.............. shadows start right up again.  

So there's my take on the Verapamil............ I can't say I believed in it much last year.  But this year I think that it has done wonders!  Oh.... I can even have a few drinks now!  I even had a glass of red wine the other day!

Jeannie/ Boo  ( for Brew who makes my original user name sound cute not whiny)

Title: Re: Could it really be ... ?
Post by seasonalboomer on Jun 3rd, 2008 at 9:48am

habanero wrote on Jun 3rd, 2008 at 8:29am:
personally i don't believe in verapamil.

don't believe in alcohol theory either.
binge drinkin maybe, but i don't do it so i don't know.
i drink like 3 pints of beer a day.
the pain starts whenever it wants, with or without beer.


you don't have to believe. verap works for lots of folks and brings a lot of people their lives back from the jaws of the beast.

as for believing in the alcohol theory....you might not right now. I've had cycles where going into a pub, and the beer musty smell triggered a headache. Other cycles when I could drink a half a bottle of Cabernet and never get a twitch. It ain't no theory when you're kicking yourself in the ass for being such a stubborn f&#$% and not believing in theories.

Scott

Title: Re: Could it really be ... ?
Post by habanero on Jun 3rd, 2008 at 11:42am
hi scott
you got your head, i got mine.
maybe i'm just a lucky #&%?.

my attacks don't come triggered.
they just come.
ofcoz if you're shadowing and decide to smoke a cigar and drink cabernet you might start a serious one, but then again
it might come without it

you can't call verapamil a wonderdrug just coz you got PF time
with it.
neurologists over the world prescribe it coz studies show it has worked for some.
be happy man.

m

Title: Re: Could it really be ... ?
Post by DennisM1045 on Jun 3rd, 2008 at 1:01pm
This is the first cycle I've used Verapamil properly and effectively.  It blocked 90% of my attacks and I'm very thankful for it.  I had to use the regular release formulation and worked my way up to 400mg a day using 40mg pills 120/120/160.

I'm sure it wasn't just a light cycle because if I missed so much as one dose I'd get nailed within 24 hours.  There were still lots of shadows to chase off with O2 but that was minor.  This was very successful for me.

I did have to back off on the energy drinks because of heart palpatations I got after drinking two in 24 hours.  That was a bit of a scare.

I'm tapering off now after a few weeks PF and successful alchol testing  ;)

Good luck...

-Dennis-

Title: Re: Could it really be ... ?
Post by seasonalboomer on Jun 3rd, 2008 at 1:23pm

habanero wrote on Jun 3rd, 2008 at 11:42am:
hi scott
you got your head, i got mine.
maybe i'm just a lucky #&%?.

my attacks don't come triggered.
they just come.
ofcoz if you're shadowing and decide to smoke a cigar and drink cabernet you might start a serious one, but then again
it might come without it

you can't call verapamil a wonderdrug just coz you got PF time
with it.
neurologists over the world prescribe it coz studies show it has worked for some.
be happy man.

m


If it changes anyone's life, it's a wonder drug for that person. Everyone picks their magic bullets and their poisons. One person's poison, is another's life changing elixir. You don't have to use any of it, or believe in any of it, but for those that do and get their life back, either through use of an effective treatment for them, or by avoiding something that consistently triggers a really bad experience for them, I say belief is in the eye that you get a cluster headache behind.

Scott



Title: Re: Could it really be ... ?
Post by scubaguy on Jun 3rd, 2008 at 1:25pm
Congrats, Dennis! May the PF period last!!

This is my fourth PF day and I've left the O2 bottle unused, even with shadows, which seem to be getting better today, too. Am ever hopeful! Only the 240mg Isoptin (80/80/80, Verapamil) is currently with me, but I'll discuss this with my MD on Thursday.

As for the alcohol test, I have an event to go to tomorrow evening (one, which I'm hosting!), so I'll try alcohol-free beer for that ... mind you, apart from missing the occasional bottle of wine with dinner, staying off the sauce has helped reduce my waistline  ;)

I've also been taking a few Aspirin before going to bed ... probably in a vain attempt to reduce the chance of the CHs breaking out. Will likely try without tonight.

Here's to the hope of a long PF period!

Roger

Title: Re: Could it really be ... ?
Post by DennisM1045 on Jun 3rd, 2008 at 1:35pm
When in cycle I can't touch near-beer either.  There is alchol in that stuff too.  Though not as much.

-Dennis-

Title: Re: Could it really be ... ?
Post by habanero on Jun 3rd, 2008 at 1:49pm
so no point arguing if we both agree scott.

just tryin to share oppinions.

peace

m

Title: Re: Could it really be ... ?
Post by icedragon on Jun 3rd, 2008 at 2:18pm

Hey Roger, be careful man.  There are some strong warnings against the use of asprin with Verapamil.   Wishing you many PF days...

Thomas

Title: Re: Could it really be ... ?
Post by Paige_H. on Jun 3rd, 2008 at 3:42pm
Verap has prevented cycles before, but the past 2 times it didn't work.  Just depends...

Title: Re: Could it really be ... ?
Post by AlienSpaceGuy on Jun 3rd, 2008 at 4:53pm
Verapamil, in a high enough dose, dampens down the attacks strongly or suppresses them completely. Im my current cycle (started 1999-02-01) I didn't have an attack above a Kip 3.

Aspirin is utterly useless against CH.



wrote on Jun 3rd, 2008 at 2:18pm:
Hey Roger, be careful man.  There are some strong warnings against the use of asprin with Verapamil. ...
Now, Icedragon, that is completely new for me ::). Could you give us a reference about that?
At least START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE quotes:
No interactions were found for the drugs you selected. (Aspirin and Verapamil)



                 [smiley=smokin.gif]




Title: Re: Could it really be ... ?
Post by icedragon on Jun 3rd, 2008 at 5:45pm
I first read about avoiding the use of aspirin with verapamil in my copy of the "Nurse's Drug Guide" printed by Prentice Hall.  When looking up "verapamil," it states under "patient and family education;" "Do not use OTC drugs, especially aspirin, unless they are specifically prescribed by physician."  Being I could not find a reference on-line from this specific book, I found this site to cross reference it with.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It states under drug interactions: "Aspirin and concurrent verapamil use may increase bleeding times; monitor closely, especially if on other antiplatelet agents or anticoagulants."


Title: Re: Could it really be ... ?
Post by Mattcentralnewyork on Jul 12th, 2008 at 11:54pm

For what it's worth, beer has been a major trigger for me in the past and everything I've read seems to reiterate that.  As far as the Verapamil is concerned, if there is any possibility it's helping me, I'm going to stay with my Neuro's recommendation.

Good luck to all,

Matt

Title: Re: Could it really be ... ?
Post by Kirk on Jul 17th, 2008 at 8:34pm
I had great results with Verap for  4 years at 480 mg/day. Then other medical issues required that I stop taking Verap. And I had to change to Topomax and O2.
I'd switch back to Verapamil in a heart beat if I could.

[smiley=smokin.gif]

Title: Re: Could it really be ... ?
Post by scott t on Jul 19th, 2008 at 4:12am
I took 120 MG Verapamil a year ago...it worked. I then foolishly stopped thinking the CH were gone...They are back and now since March I am suffering two to three attacks a day. I think the verap takes awhile to "kick in"...I hope. Nothing else works!
I hope it works for someone...anyone!

Title: Re: Could it really be ... ?
Post by geosailor on Jul 19th, 2008 at 10:55pm
Since Verapamil relaxes (widens) blood vessels,how does this fix a ch which is a widening of the blood vessels?

Title: Re: Could it really be ... ?
Post by Charlotte on Jul 20th, 2008 at 12:27am
my understanding is that verapamil affects the electrical conduction aspect, somehow.

I wondered the same thing myself.

Charlotte

Title: Re: Could it really be ... ?
Post by Chris Matthews on Jul 20th, 2008 at 7:43pm
Verapamil has worked really well for me in the past. I stopped it mid-way in a cycle and suffered my worst CH ever. I've used oxygen recently but the Verap was a really good preventative - and huge relief.

Alcohol will trigger an attack, particularly red wine.

Chris , London, 36

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