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        Cluster Headache Help and Support >> Cluster Headache Specific >> Verapamil question
        
(Message started by: prcole18 on Nov 23^rd, 2006, 4:50pm)

Title: Verapamil question
Post by prcole18 on Nov 23^rd, 2006, 4:50pm

Hi people.

Been PF now since 10th Oct. :D. Went through a hell of a cycle for four months prior to that.

The 720mg of Verap put the cycle to rest I think.
This is probably the best ive been Pf in 5-6 years because when not in cycle I still usually get 1-2 headaches a week at night so I think the Vearap is working a treat.

The thing is the last time I saw my nero he said wait another 2 weeks then cut down on the Verap to 480mg, then 2 weeks after that (which is now) stop the verap altogether, if the CH's return up the Verap again. Basically he wants to know if its the Verap working or i've come to the end of my cycle.

I haven't had any Ch's since coming down to 480mg verap but am a bit worried they'll come back if i stop it altogether then I have to wait 1-2 weeks or whatever for the Verap to kick in to stop them again.

Now I wont go against my neros wishes but im just wondering on peoples thoughts on this & what you would do & does anyone permanantly take Verapamil.

I think Chopmyheadoff does from when i've spoke to him, just wondering about other people?

Title: Re: Verapamil question
Post by E-Double on Nov 23^rd, 2006, 5:13pm

Taper slowly and you can always increase.

Don't be scared, it's only a headache ;)

Title: Re: Verapamil question
Post by prcole18 on Nov 23^rd, 2006, 5:31pm

Good point, think im gonna go down to 240mg for a week or two & see how that goes.

Title: Re: Verapamil question
Post by Jonny on Nov 23^rd, 2006, 6:42pm

As long as you have it stay on it......worked for me for 14 years ;;D

Title: Re: Verapamil question
Post by bothofus on Nov 23^rd, 2006, 8:01pm

Personally, do the taper. I stopped too early before and the hits started up again. I am down to 240 mg a day and next week will try 160 mg a day. Better to be safe than sorry and have to ramp the dosage back up again.

Hope ya had a Happy Thanksgiving !

Carl

Title: Re: Verapamil question
Post by BB on Nov 23^rd, 2006, 9:37pm

Hello

How long have you been on the Verap for ? and how how after taking the 720mg that the hits stopped?

Thanks for sharing the information and congratulations on being painfree.

Annette

Title: Re: Verapamil question
Post by paul2006 on Nov 23^rd, 2006, 10:18pm

My neuro said that I know my head... he said I should work with my gp to to whatever dose of verap works for me. '

I take between 720 qnd 960 mg per day... I have imigran injections for the times I need them and oxygen if I want.

My neuro said it is the NHS's duty to help me live as PF a life as possible... so...

I drop my verap... inject more... up the verap again... inject less... put up with fat feet and memory loss, but live relatively PF.

But that's me... everyone is different.

PF wishes
PAul

Title: Re: Verapamil question
Post by chopmyheadoff on Nov 24^th, 2006, 2:17am

hiya mate - great news on you being pain free again ;;D ;;D

sorry i forget your history bro, how long do your cycles normally last ?? and has this one run as long as they normally do ???

your right, im permenanty on verapamil. im on 480 ed at the moment, i still have the odd breakthrough and neurologist has told me i can increase if i want but im happy as i am now. i dont get ANY side affects.

and jonny used it to kick the beasts teeth in for 14 years !!!!

as for your question, me personally, i would maybe taper down a bit, see how that goes for a week, and then maybe taper down a bit more etc etc. like you say, you know your own body.

If you dont want to risk that then i would just stay on them. its not done me any harm.
but then again we are all different. i would prolly weigh up the pro's and con's.

bear in mind though - if you are episodic. your cycle WILL come to an end eventually, so your gonna have to do this at one point !!

if theres anything i can help you with or anything u need to know just giz a shout !!

peace
chops

Title: Re: Verapamil question
Post by prcole18 on Nov 24^th, 2006, 5:51am

Ive been on Verap since August. 720mg since October. When I went up to 720 mg, 8 days later the hits completely stopped. Prior to that I was getting anything up to 6 hits a day which started in July.

Ive always considered my self Eposidic but would still get 1-2 headaches a week at night when not in a severe cycle, so maybe I was more Chronic?

I cetainly never went 30 days without a headache!

Untill now that is, this is probaly the longest ive been PF so im sure the Verap works for me.

Ive now gone down to 240mg a day & will leave it at that for a while, obviously if the headaches return i'll be ramping up the Verap quicker than you can say cluster!!

Oh & also, like Chop I don't seem to get any side affects from Verapamil ;;D

Title: Re: Verapamil question
Post by chopmyheadoff on Nov 24^th, 2006, 6:29am

on 11/24/06 at 05:51:18, prcole18 wrote:

I cetainly never went 30 days without a headache!

then you are chronic - by definition.

you sound like your in just the same boat as me mate, i would sometimes go a week, or even 2 with no hits but then wham, every day for a couple of weeks
then one day off, one day on, just random . . . :-/

if you dont have sides off the verap then why are you wanting to stop ??!! :)

has the neuro diagnosed u as episodic or chronic ?

if it was me , i would (and do) just stay on !!

Title: Re: Verapamil question
Post by prcole18 on Nov 24^th, 2006, 7:15am

on 11/24/06 at 06:29:40, chopmyheadoff wrote:

Hi Mate, yeah you sound identical to me, thats exactly how my hits were, all over the place.

Its not that I want to stop the verap, it's just that the Neuro said stop after going down to 480mg as I said earlier because I think he wants to see if its the verap working or the end of a cycle.

But as I say, even when not in a heavy cycle, I would like you, still get headaches here & there & definatly not go 30 day's totally PF like I am at present.

My Neuro hasn't really called me chronic or Eposodic but as you say i'm pretty sure i'm chronic with the amount of hits i get.

Title: Re: Verapamil question
Post by chopmyheadoff on Nov 24^th, 2006, 8:19am

LOL i class myself epichronic !!

we are a breed of our own !!!

Title: Re: Verapamil question
Post by prcole18 on Nov 24^th, 2006, 8:32am

on 11/24/06 at 08:19:12, chopmyheadoff wrote:

LOL i class myself epichronic !!

we are a breed of our own !!!

LOL, epichronic I Like That!

Title: Re: Verapamil question
Post by Kevin_M on Nov 24^th, 2006, 8:51am

on 11/23/06 at 16:50:30, prcole18 wrote:

The thing is the last time I saw my nero he said wait another 2 weeks then cut down on the Verap to 480mg, then 2 weeks after that (which is now) stop the verap altogether, if the CH's return up the Verap again. Basically he wants to know if its the Verap working or i've come to the end of my cycle.

Now I wont go against my neros wishes but im just wondering on peoples thoughts on this & what you would do & does anyone permanantly take Verapamil.

If not needed, I'd step down from 720mg and it seems your neuro is using the decrease to 480mg as a stepping stone. I know we are all different but 480mg is usually all I need for prevention, sometimes 600. At 480, I will still be very CH active but not get hit with that level of protection, that level wouldn't tell me if they had stopped or not. It is the slow, gradual descent from there that would give me clues in about 48 hours after decreasing each step.

Quote:

Its not that I want to stop the verap, it's just that the Neuro said stop after going down to 480mg as I said earlier because I think he wants to see if its the verap working or the end of a cycle.

At 480mg you could still be active but be protected. I taper gradually from there, like E double also mentioned.

Quote:

Taper slowly and you can always increase.

Don't be scared, it's only a headache ;)

Near breakthroughs, shadows, can accompany when decreasing to a minimum level, if still needed, but when consecutive nights of breakthroughs happen, up it goes again for me, keep the oxygen handy awhile.

It seems he's considering you episodic to stop completely from 480mg after two weeks pf time there.

Title: Re: Verapamil question
Post by CynthiaB on Nov 24^th, 2006, 9:29am

My doc started me on 100mg, which I understand. I'm tolerating it just fine. No changes in heart rate or blood pressure. But she wrote the script for 100mg. I don't understand how that is going to do anything at all. Just like it isn't doing anything at all right now. I'm still taking 8 - 10 hits a day. This is my 9th week and I am so tired.

Title: Re: Verapamil question
Post by Kevin_M on Nov 24^th, 2006, 9:39am

on 11/24/06 at 09:29:11, CynthiaB wrote:

My doc started me on 100mg, which I understand. I'm tolerating it just fine. No changes in heart rate or blood pressure. But she wrote the script for 100mg. I don't understand how that is going to do anything at all. Just like it isn't doing anything at all right now. I'm still taking 8 - 10 hits a day. This is my 9th week and I am so tired.

My first neuro appointment, with the second neuro, started a pred taper and 360mg verap. However, with my regular doc I give regular feedback as to how it is working, he increased the verapamil for me to 480 and monitors me.

Title: Re: Verapamil question
Post by chopmyheadoff on Nov 24^th, 2006, 9:48am

on 11/24/06 at 09:29:11, CynthiaB wrote:

hi babes,
you say your doc STARTED you on 100mg
did he give and indication that he was going to increase ?
maybe he's waiting for you to go back and tell him its not working ??

i dont know of anyone (shout if im wrong) that has found relief off verap at less than 240mg ed

Title: Re: Verapamil question
Post by prcole18 on Nov 24^th, 2006, 10:27am

on 11/24/06 at 09:29:11, CynthiaB wrote:

Agree with Chop, think you'll find most people need at least 480mg to find relief.

As said above, my magic number was 720mg, now tappering off.

I would go back to the doc & personally ask to go up to at least 240mg minimum.

Title: Re: Verapamil question
Post by snyder on Nov 24^th, 2006, 11:16am

For what it's worth.
I was recently diagnosed with some cardiac problems. I have had CH for 45+ years and have used verapamil for about 20. My cardiologist has indicated that verapamil weakens the heart when used long term and I have to weigh the risk. He would prefer that I take something else but is aware of its help for CH and is sympathetic so put me on another med in addition that strengthens the heart some. We are currently sort of in limbo waiting to see if one med cancels the other out as far as the CH goes. So far so good, it seems, and it has been long enough to evaluate, I think anyway.
Bill

Title: Re: Verapamil question
Post by mathieulives on Nov 25^th, 2006, 10:21pm

This is my first time on verap.. i stopped after i felt better and within a day i was shadowing and i had a couple episodes at work within the next couple days...
i'm back on the verap now.. i thought it was over. its not. its been about 6 weeks now since i've known my headaches were C.H. geez... :(

So i've cut out cheese, other dairy (which i never really ate), i've cut out nuts, alcohol, the occassional smoking.. and i can't name what else...

I don't want to deal with this for the rest of my life and i don't want to have any medical issues later in life b/c of all the drugs i'm pumping in now. There has to be a natural ways to handle this...

Title: Re: Verapamil question
Post by ccbiggsoo7 on Dec 3^rd, 2006, 11:16pm

don't be afraid to experiment a little with doses. been on verapamil for 10 years and constantly adjusting doses as needed. Just make sure you let your doc know so you don't go to high of a dose. Alittle tweak here and there is part of being a clusterhead. Get used to it. Good luck!

Title: Re: Verapamil question
Post by jcline871 on Dec 5^th, 2006, 2:24am

Reading about these doses of 720mg and so on, I am very surprised that my Neurologist prescribed me only 180mg (once a day long lasting type). Now, having said that, I took them before my typical cycle started and the entire 3 months passed pf. Not one attack! So, I thought I was good to go and stopped. Rookie move! Somebody was keeping track and knew I was due. It was like I still had a debt to pay and my cycle started up in the end of November, 6 months later than normal and only after I had stopped taking the V. So now, of course, I'm scrambling to get the V back into my system and heading back to the Neuro for some other abortive option. Ugh. Ugh. Ugh.

Anyway, the 180mg seemed to work as a delaying tactic...

-John

Title: Re: Verapamil question
Post by mathieulives on Dec 7^th, 2006, 9:34am

on 11/23/06 at 20:01:48, bothofus wrote:

Personally, do the taper. I stopped too early before and the hits started up again.

Same w/ me!! Had to start up again, i will try to taper next time. Dr gave me 4 refills of 60.. I intend to use them all.

Hang in there!