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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Can't get off verapamil
        
(Message started by: birdman on Jun 19^th, 2007, 8:17am)

Title: Can't get off verapamil
Post by birdman on Jun 19^th, 2007, 8:17am

I have always battled my HA's with pred taper, verapamil (720mg-960mg), o2 and trex. Latest cycle has been a long one for me, about four months. Usually two - three months and done. I am at the point where it is controlled and the verap is working. Currently taking 840mg and trying to taper of by 120mg at a time. Each time I get to 720mg, I get either shadows or a kip 2-3 once a day so I go back to 840mg and am fine. Other then dizziness, low heartrate and being tired. Then I try again and same thing. Is the cycle not over? Is it part of the taper and I need to get past it? Any suggestions are appreciated.
Tim

Title: Re: Can't get off verapamil
Post by E-Double on Jun 19^th, 2007, 8:31am

I wasn't on that high but a pretty high dosage nonetheless.......When I decided that I was sick of meds and wanted to detox Dr. Sheftell had me taper at 40mg per week. This equated to a 15 week taper and made things much easier.

Good luck

Title: Re: Can't get off verapamil
Post by Guiseppi on Jun 19^th, 2007, 10:06am

My last cycle went 8 and a half months! Prior to that they were always 8-12 weeks. Every time I'd try to taper off my prevent, lithium, I'd get half way thru the taper and WAM I'd get nailed. It's possible you have a rogue LONG cycle this time. Just about the time I was convinced I'd crossed the dreaded "chronic" line the cycle broke. Hang in there!

Guiseppi

Title: Re: Can't get off verapamil
Post by birdman on Jun 19^th, 2007, 12:53pm

"Dr. Sheftell had me taper at 40mg per week"

Unfortunately the pills I have now are 240mg and I split them in half. I guess to do a slower taper I will have to ask for different doses.

"I was convinced I'd crossed the dreaded "chronic" line "

I was afraid to use that word in my original post. It is way too soon for me to start thinking that, but if it goes to 8 1/2 months like yours did, I might start to panic. Right now I think it is barely hanging on. I hope

Title: Re: Can't get off verapamil
Post by birdman on Jun 22^nd, 2007, 1:24pm

Sure enough, I tapered down for two days from 3 1/2 - 3 pills and lunch was a trex stab. Back to 3 1/2 as of tomorrow. Dangit!

Title: Re: Can't get off verapamil
Post by michael on Jun 22^nd, 2007, 1:46pm

All of my cycles throughout 40 years have been around 6 to 10 weeks except 2 that were 6 months each.

Rogues happen!

Mike

Title: Re: Can't get off verapamil
Post by Kate in Oz on Jun 24^th, 2007, 8:08am

Hey Tim,

Goodluck is all I can say [smiley=huh.gif]

I have that problem too!! Last year I had a cycle like that just felt like it was never going to end, every time I started slowing down the verap I'd get shadows all day long! In the end I just bit the bullet, put up with full on shadowing... and they did eventually stop. (didn't get any big hits - and I know we are all different but I have noticed for me anyway that a cycle (of hits) will usually end on a big one kip 8-10...then shadowing thereafter).

Having said that, my Feb/March cycle did its thing... I was on the verap, came off it slowly, then in May the cycle was back again ??? don't know what that was about... thinking its time to get off again now before the August cycle kicks in.

Wishing you all the best,

Kate

P.S I have also had a cycle that lasted 6 months!! Damn tricky beast >:(

Title: Re: Can't get off verapamil
Post by birdman on Jun 25^th, 2007, 11:02am

Went back to the 3 1/2 pills on got hit that first day, but the second was just shadows. Both days o2 did not work. It is usually effective for me. Weird.

Title: Re: Can't get off verapamil
Post by Wayne on Jun 25^th, 2007, 2:13pm

Hi Birdman

I asked the question a while ago about how you know when your cycles over if you're on a preventative. many suggested the beer test ie. have a few pints and if you get hit then you're not.

I know that these things are really tricky but Verap seems to be fairly harmless and you can stay on it for long term if need be.

Cheers,

Wayne

Title: Re: Can't get off verapamil
Post by birdman on Jun 25^th, 2007, 4:51pm

Wayne,
I read that post and I think I even replied. I tried the beer test twice and have had no problems will drinking so I start to think I am fine. Then I try to go down to three pills and get hit and return to 3 1/2. Today at 11:30 (that seems to be the time right now) I started feeling it and tried the o2 and this time it worked. Thank God, I hate having to use the trex. Maybe it was because I am back on the 3 1/2 pills? Who knows! I will wait another week and try to taper again.
Tim

Title: Re: Can't get off verapamil
Post by Wayne on Jun 26^th, 2007, 7:35am

Hi Tim

Believe me I do understand your problem. was completely PF for 18 days last Friday so I figured lets do the beer test. I had all my abortive ammunition on standby, had 4 pints and not even a shadow. Saturday I thought I should push the test a bit further so went on a complete binge, not even a shadow. Now I am trying to decide whether to start tapering but I'm scared witless of inviting the beast back. After reading this post I've decided to wait another week, Coward hey!

Title: Re: Can't get off verapamil
Post by birdman on Jun 26^th, 2007, 8:13am

You are not a coward, just an experienced clusterhead. Even more concerned as I am going on a cruise and want to imbide in a little drink. Also concerned about seasickness adding to already existing dizziness.

Title: Re: Can't get off verapamil
Post by E-Double on Jun 26^th, 2007, 9:36am

Sorry to burst a bubble but being able to drink does not mean that your cycle is over.

Many chronics can imbibe without having it trigger an attack.

This should not be your "test"

Enjoy your life regardless and know that their could be things a lot worse.

As far as the tapering goes, take it slow and when you feel like tings are getting worse agian, you may have to suck it up IF this is what you want to do.

I personally had enough of the side effects so I came off everything completing my taper and being med freee since MArch '06.

I'm a med free chronic and have ups and downs like anyone else in life.

PF wishes,

Eric

Title: Re: Can't get off verapamil
Post by Wayne on Jun 26^th, 2007, 12:19pm

Well either way its quite pleasant knowing that I can have a few beers without terror. I commend you Eric, I am much to much of a baby to go med free without knowing that I have at least a very good chance of going PF as well. I am trying an alternative route but haven't developed the confidence yet to chuck away the pills.

Title: Re: Can't get off verapamil
Post by horsegirl on Jun 26^th, 2007, 3:20pm

i too am too scared to even tapper off the verapamil but i think this is m 5 week and every sense they went to 3 years they last 4 to 6 weeks campared to 2 to 3 weeks when the came 2x a year,but i didnt have a ha for 5 nights or days then the third night i had a rum and coke no problem then the last three nights in a row ive had ha kip 4 o2 worked in ten thats it,im just ready to get off meds.

Title: Re: Can't get off verapamil
Post by MR_FLOOR on Jun 26^th, 2007, 10:42pm

Being chronic I will never be able to be off verapamil I need it to survive when I miss 1 dose within 2 days I will get pounded with hits.So you could I love my Verapamil

Dave

Title: Re: Can't get off verapamil
Post by birdman on Jun 28^th, 2007, 8:40am

Dave,
What dose is your normal successful level?
Tim

Title: Re: Can't get off verapamil
Post by horsegirl on Jul 2^nd, 2007, 4:33pm

i only take 120 three times a day and it realy helps me i have had a few big headaches at that amount but very few and it controls them where the o2 works fast and no postpone or delay,im tired is my main side effect so how someone takes 1200 is beyond me,this is good enough releif for now but then i was on the down slope of my headaches

Title: Re: Can't get off verapamil
Post by billyjoe on Jul 3^rd, 2007, 10:56am

I can relate to an unusually long cycle also. For me, switching to verapamil has allowed me to drink. I'm on a 480 verapamil / 50 topomax mix with only one minor ch an hour after bedtime, that 3mg of Trex takes care of very well. I'm just starting to increase the verapimil and taper off the topmax but I feel a bit dizzy already and concerned about being tired. I wonder if a little pain may be ok. At least then you know when it's over. Anyone else doing a verapamil/topomax mix? I found 50 mg topomax ok, but I can't handle more than that. In fact, I'm starting to think a little of both may be a good mix of pain relief and few side affects.

Title: Re: Can't get off verapamil
Post by Patrick_A on Jul 6^th, 2007, 4:31pm

I had no problem, and was so glad to get off of it. I hated the soggy heartbeat!

Patrick_A

Title: Re: Can't get off verapamil
Post by birdman on Jul 9^th, 2007, 9:05am

Tried again over the weekend and sure enough, Sunday at 11:30 am started getting twinges. Never developed but I went back to 3 1/2 (840mg) today. Never had a cycle that I couldn't get out of. Frustrated. Thinking I may need to use alternative methods to end this cycle. Starting to think the med's are causing cycle to last longer. This beast is such a wily creature.

Title: Re: Can't get off verapamil
Post by Kate in Oz on Jul 9^th, 2007, 10:29am

Hey Tim,

I think it might be worth a shot`- have you got 02?? I've just started to taper down my verap and the shadows are definately worse.... but I'm going to endure it for a while and see if the big ones are over.... like I say my cycle last year was like that - just went on and on, couldn't get off the meds until finally I just bit the bullet.

Good luck, whatever you do.

Kate

Title: Re: Can't get off verapamil
Post by birdman on Jul 9^th, 2007, 10:31am

Hi Kate! Yes I do have O2 but am very often not at home or work were I have tanks. I have been thinking that I may have to suffer through some shadows/twinges to get off the meds. How did that go for you? How long did it last?
Thanks,
Tim

Title: Re: Can't get off verapamil
Post by Kate in Oz on Jul 9^th, 2007, 10:49am

Geez now your asking tough questions - my memory is shite to say the least !!!!

I think last time the shadows lasted a couple of weeks at least, and definately they were really bad to begin with.... had me going for a while with the fear of a full on hit and all, but nothing eventuated. I'm a bit like that now. dropped a dose this morning and I feel like I could cop a hit any time - bad shadowing - but I'm hoping it'll just be like before and nothing will eventuate.

I hope this is helpful, it definately lasted a couple of weeks and then finally pettered out to nothing.... and I was so relieved!!! Like I say, there was the constant fear of a hit cos the shadows were bad... but nothing really happend - lots of light sensitivity and shadowing, that was it.

All the best to you,

Kate

Title: Re: Can't get off verapamil
Post by birdman on Jul 9^th, 2007, 5:21pm

Kate,
Thanks for the quick reply. What dosage are you currently taking? I keep saying I am going to try again and then chicken out.
Tim

Title: Re: Can't get off verapamil
Post by Kate in Oz on Jul 16^th, 2007, 8:37am

Hey Tim,

Sorry I didn't get back to you. I'm eating my words here :P copped a couple of bad hits so back on the verapamil I go :-/ I suspect I'm not going to get any kind of break before my scheduled July/August cycle kicks in blah blah....

How are you going??? I've not read your thread re the shrooms just yet, assume all is well?? Hope so anyway.

Kate

Title: Re: Can't get off verapamil
Post by birdman on Jul 16^th, 2007, 9:53am

Tried to taper this weekend and was very excited as I had no hits. This morning though is a different story, lots of shadows and twinges. We will see.