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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Verapomil - friend or enemy?
        
(Message started by: FramCire on Jun 12^th, 2006, 1:45am)

Title: Verapomil - friend or enemy?
Post by FramCire on Jun 12^th, 2006, 1:45am

I have been on verapomil since my first headache this cycle. Once I started taking verapomil at 480 mg /day and 9mg of melatonin, my headaches because fewer and lesser in pain.

However, this cycle is now almost 8 months long whereas my last cycle was only 6 weeks (they started the same time of the year in different years, of course)

Anyway, tonight I had one of my worst HAs for the first time in a LONG TIME. I wasn't ready for it and the jaw pain I had with it was as bad as ever. O2 wasn't an option. I took everything else i had (Except Migranol because I had taken a triptan within the last 24 hours) and got in a hot shower.

The meds have knocked it down to bearable levels but I am a bit annoyed.

Anyway, do people on Verapomil end up having easier cycles but MUCH longer?

The owrst part was that my family is all out of the house tonight so I WAS going to get a great night sleep but I am afraid to go to sleep until the HA goes away and usually when I have ones like I have, I get back to back to back ones until 3am.

Sorry for my rant. My question is why I posted this but I needed to vent.

QUESTION: Do people on Verapomil end up having easier cycles but MUCH longer?

Title: Re: Verapomil - friend or enemy?
Post by Kris_in_SJ on Jun 12^th, 2006, 5:46pm

Sorry you're having such a hard time of it this time around.

There are a significant number of people here who have experienced longer cycles when taking Verapamil, though from 6 weeks to 8 months seems REALLY long to me.

Personally, Verap has been a savior for me in terms of decreasing the intensity and frequency of my HA's. After about 2 weeks, I'm usually down to shadows only for the rest of my cycle. However, this last time I had a hard time weaning off of it. Took about 5 months to go from 480mg/day down to 0 without the shadows and twinges creeping back in.

If I were you, I'd sure talk to my doc about it.

Hugs,

Kris

Title: Re: Verapomil - friend or enemy?
Post by FramCire on Jun 12^th, 2006, 9:39pm

Thanks for the reply.

I had an awful night last night and today only a few light shadows. However, nighttime is when it gets the worst for me usually. It had been a while since I had back to back ones like that.

Here's hoping for a better night tonight.

Title: Re: Verapomil - friend or enemy?
Post by Richr8 on Jun 12^th, 2006, 10:10pm

In 2004 I was never able to get off of Verapamil. Everytime I would cut back the shadowing would start and I would up the dose on my Neuro's advice. Lo and behold the entire year passed and i never got below 240mg. Well, this year on the advice from folks here, I continued to cut back and handled the shadows with O2. Voila! In under three months I was off the Verap.

Not sure if it will work for you, but worht the time.

good luck!

Title: Re: Verapomil - friend or enemy?
Post by E-Double on Jun 12^th, 2006, 11:16pm

Hey Eric,

Much like you I never had a cycle longer then a "few" weeks.......then tried meds..........2+ yrs.
I'm med free and still get whacked, some days A LOT but it's a hell of an easier ride.

Personal choice and as ya know.....we're all different

Eric

Title: Re: Verapomil - friend or enemy?
Post by FramCire on Jun 12^th, 2006, 11:40pm

Thanks again guys.

Knock on wood, I haven't had anything yet tonight which is a rarity for me. 10:30 and I usually have got 1 or 2 hits (at least shadows)... so far tonight.... none.

I am currently at 240mg. I cut back from 480 over a month ago when I had a PF day and hadn't had anything too bad since.

Eric

Oh yeah, and congrats Eric.

Title: Re: Verapomil - friend or enemy?
Post by chewy on Jun 13^th, 2006, 6:57am

CH is a day to day struggle for me when in cycle. That being said,verapamil dramatically reduces the frequency and intensity of the hits. That alone improves my day to day existance when in cycle.

IF verapamil extends the cycle then I am willing to trade off for improved day to day quality. I say IF because CH cycles are so unpredictable I dont see how you can accurately attribute a longer cycle to anything.

Title: Re: Verapomil - friend or enemy?
Post by Filbert on Jun 13^th, 2006, 9:07am

I think Chewy has hit the nail firmly on the head here. There is no definitive answer to the question about verapamil being good or bad overall. The evidence is all anecdotal. I know a couple of people who believe verapamil turned them chronic. I know people who have taken verapamil and it's reduced the effects of a cycle and then they have come off it successfully. Prof. Goadsby has admitted it may extend cycles and /or turn people chronic. Purely personally I aim never to start taking it as an episodic with short[ish] cycles and relatively long remissions. I am not prepared to risk it. On the other hand if my cycle had been going on for a long time or I was chronic then I may well try it, if all other avenues had been exhausted. I would certainly go down the "alternative " route before verap but that's just my opinion.

One thing I do know is that I hope your cycle ends very soon!!
Fil.

Title: Re: Verapomil - friend or enemy?
Post by FramCire on Jun 13^th, 2006, 2:05pm

on 06/13/06 at 06:57:54, chewy wrote:

I pretty much agree with this. I keep taking the verapomil because I will take this day to day exsistance over what I went through pre-verap.

Title: Re: Verapomil - friend or enemy?
Post by Charlotte on Jun 13^th, 2006, 3:55pm

I took Verapamil , and Fiorinal, years ago. I had a bad experience, but it may have been from the combination. Still, it makes me hesitant to try it again.

Charlotte

Title: Re: Verapomil - friend or enemy?
Post by paul2006 on Jun 28^th, 2006, 9:43pm

This is my first post after a long time just reading the boards!

I have just been confirmed as chronic by a neurologist and he wants me to increase my verapamil up from 480mg to 960mg a day.

I have no worries about this because it is the best thing I have ever been prescribed. I was chronic before starting on it and had tried other meds which didn't work. Headaches [4 a day] are now rarely more than 5 or 6 kip scale and I hope they will be even less when the verap dose increases [up by 80mg every 2 weeks with ecg each increase].

He also prescribed Sumatriptan injections for the 'emergencies' and O2 as well, so I'm hoping life will improve even more.

It seems to me that it is mainly episodic sufferers who have the bad experiences with verapamil, but I know everyone is different. I used to be episodic and turned chronic without any reason. I don't really think any sort of treatment 'causes' episodic to turn chronic. I think it just happens and is easy to 'blame' the meds, whatever they might be.

To me at least, verapamil is an absolute godsend and I would take it for ever and recommend it to anyone. I am terrified of the alternative...

Title: Re: Verapomil - friend or enemy?
Post by Katherinecm on Jun 29^th, 2006, 11:09am

on 06/13/06 at 09:07:30, Filbert wrote:

I am one of the people who believes Verap was one factor in turning me chronic. I wouldn't neccesarily say it should be thought of as the "last resort" preventative though because statistically it helps more people than it hurts. Of course, I once read that book "How to Lie with Statistics" and I don't know if that's what the makers of Verapamil did, but my cousin in medical school at Mayo Clinic said that Mayo has had success with more than 90% of sufferers there. It may have been something like 93%, I don't recall the exact number.

So try it. Possibly even try increasing the dose unless the side effects (for me an immediate different kind of headache and constant exhaustion) are so bad as to warrant not trying it. But do not make my mistake- don't blindly follow your doctor's instructions to increase the dosage simply because the doctor is too lazy to research other treatment options, or frustrated at their inability to "cure" you. Don't let them keep increasing the dose for months when it's clear it doesn't help at all. If you're already experiencing less severe attacks, increasing the dosage may be warranted in your case. But this is not a drug that takes months to build up in the system - you should know within a few weeks if it's helping you or not. Above all, research treatments yourself, get educated, and trust your instincts. When you know something is not helping or is making it worse, don't let your doctor talk you into staying on it and increasing the dose. They work for you, not the other way around.

Here's a PDF of current treatments that you may want to become familiar with: http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Verapomil - friend or enemy?
Post by TimJohnson on Jul 6^th, 2006, 10:48pm

I have been taking 360 mg or verapamil a day for 2 years - EVERYDAY with 400 mg of Topamax. If I go off of the Verapamil, I know I get socked right in the kisser with a massive headache. So I know it has been a blessing for a me.