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        New Message Board Archives >> Jul-Sep 2003 >> Afraid
        
(Message started by: Jewel on Sep 15^th, 2003, 8:58am)

Title: Afraid
Post by Jewel on Sep 15^th, 2003, 8:58am

I'm on my 18th day without a cluster but afraid to discontinue Verapamil. I want to be absolutely positive that this cycle is over before doing that. You know? What should I do?

Title: Re: Afraid
Post by hopefull on Sep 15^th, 2003, 9:16am

don't take it then if you feel it coming back take it ..do this untill you don't feel it coming back....but at the first twinge take it...before you know you won't be needing it...but don't panic and make it worse than it has to be....

Title: Re: Afraid
Post by TxBasslady on Sep 15^th, 2003, 9:33am

Oh wow, I know the feeling, Jewel...

I am on my 6th pf day. Doing the prednisone taper. It has been great not having a visit from the beast. But, much like you, I wonder......Dread it when I complete the taper, not knowing if the ch returns or not.

Oh well, guess I better worry bout things I can control..... ???

Best wishes to ya for pfdan....and for the courage to do what ya need too

Jean

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 1:52pm

on 09/15/03 at 08:58:13, Jewel wrote:

What should I do?

Rip off your arm and beat yourself to death with it.....LMMFAO ;D....................(Just kidding)

You should know that if you slow down on the Verap you will have less in your system so if you do get nailed it will take time to build back up, you cant just pop one and expect it to work.

Id give it a few more days just to be safe, a few more days of Verap will do you no harm as long as your body handles the stuff ok.

..................................jonny (And I was just kidding ;D)

Title: Re: Afraid
Post by Jewel on Sep 15^th, 2003, 1:57pm

Thanks Jonny! And I know you were kidding. Hehe! :)

Title: Re: Afraid
Post by ZAIRA on Sep 15^th, 2003, 1:58pm

My experience ;D, if I realize that the dosage I’m taking makes feel me better, I reduce Verapamil “gradually” till arriving to 0 mg/day.

Best wishes to you to remain PF and don’t forget to stay hard. ;D ;D ;D ;D ;D ;D

Zaira :-*

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 2:02pm

I have a wacked out sense of humor ;D

Verap is one thing I know, well two (lithium)....ive been taking both everyday for 13 years. I made the mistake of going cold turkey and paid for it for nearly a week till I got the levels built back up.....I aint never doing that again.....LOL

..............................jonny (And good luck to you)

Title: Re: Afraid
Post by TxBasslady on Sep 15^th, 2003, 2:08pm

;D

........jonny.........jonny........jonny
What a sense of humor you have.... 8)

You are so damn funny. Some of the stuff you post makes me laugh till i cry.

My wish is that someday I have the ultimate pleasure to meet you and all the others that gather here for support and relief.

Laughter is such good medicine......you must truly be an "angel".

Thanks Jonny........

Jean

Title: Re: Afraid
Post by 5-string on Sep 15^th, 2003, 2:15pm

I was told by my neuro to take it through the end of cycle then stop until about 6 weeks or so before it starts again.
I'm with Jewel, I've doing really well over the past week or so. With the exception of these shadows that won't go away. I'm afraid to stop taking verapamil also.
I did'nt know you could take them year round.hmmm.
I guess the only problem is the fact that it costs me $30.00 a bottle with insurance. At a buck a piece it would'nt make sense to take them out of cycle but like Jewel, I'm afraid to.
Jonny, what happened when you went cold turkey??? did you kill anybody?
....Mark..

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 2:15pm

on 09/15/03 at 14:08:59, TxBasslady wrote:

.you must truly be an "angel".

"Angel"?.......LOL

If you saw me you would want to arrest me, Jean.....LMAO ;D

Not your average looking clusterhead ;D

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

Ya 5-string...damn near killed myself ;D

Title: Re: Afraid
Post by ZAIRA on Sep 15^th, 2003, 2:19pm

on 09/15/03 at 14:15:46, jonny wrote:

"Angel"?.......LOL

If you saw me you would want to arrest me, Jean.....LMAO ;D

Title: Re: Afraid
Post by TxBasslady on Sep 15^th, 2003, 2:36pm

Well now, I have read this entire site.....seen all the pics that you guys have taken over the years. ummm, musta missed the part about us havin to look a certain way !! :o

I have seen your pic....and have seen the smiles and laughter and can only imagine the good times you guys have had when you have been able to get together.

Just hope that I can be there one day!!!!!!!!!

You just keep that great sense of humor.........it really is a calm in the storm. I hope you know how much it helps.

Jean (who is old, retired, has grandchildren, but would give jonny a hug when and if she ever gets the chance)

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 2:41pm

on 09/15/03 at 14:36:35, TxBasslady wrote:

Jean (who is old, retired, has grandchildren, but would give jonny a hug when and if she ever gets the chance)

You will get that chance mark my words!!

I love bass fishing although I know its better fishing where you are (I watch fishing shows.....LOL ;D)

Think "Convention"

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

Title: Re: Afraid
Post by Jewel on Sep 15^th, 2003, 2:52pm

If I stop cold turkey at 180 mg I don't think I'll have much withdrawal....do you?

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 2:54pm

on 09/15/03 at 14:52:48, Jewel wrote:

If I stop cold turkey at 180 mg I don't think I'll have much withdrawal....do you?

No, but why chance it when you can taper in one week? ;D

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

Title: Re: Afraid
Post by Jewel on Sep 15^th, 2003, 3:00pm

I guess I'll take your advice.... ;)

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 3:02pm

TY ;D

Title: Re: Afraid
Post by UnsolvedEquation on Sep 15^th, 2003, 3:04pm

The Verapamil won't hurt you if you keep taking it, however...it might if you quit.

Better think about it !

Title: Re: Afraid
Post by surfshi on Sep 15^th, 2003, 3:06pm

I had the saome thought coming to my mind but I made the decision on my own without any other information and for me that was the wrong thing to do. Reluctant as I was, I made it a point not to take any medication unless I thought it was going to help me sometimes if the "Doc" said it would" none of us I think really find the pleasure in taking medication if we didn't halfto, thats one of the reasons I find it so difficult to accept the fact that their are people out their that would take anything without reason just to get off and they dont even need to know what it is for sakes it could be rat poison or drano and they still wouldnt care.This really bothers me ....Anyway...I was cluster free for about two weks myself at one time and I thought oh man the cycles broke, Yipe, so I discontinued the Verapimil, shortly after words the demon came knocking and I don't know who let the beast in. The cycle got into full swing just a few days later and it seemed forever to break it once again. Of course the first thing I asked the doctor was how long will it take to get back up to 720 that was my eraser level to combat the demon. I cant answer your question all I can tell you is this is what happened to me I still am maintaining a dose of 240 sr at night as a preventitive I have concern to discontinue. So glad you have been pain free,just keep up your shield and take care all of you... Surf

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 3:07pm

on 09/15/03 at 15:04:57, UnsolvedEquation wrote:

The Verapamil won't hurt you if you keep taking it, however...it might if you quit.

Better think about it !

I think thats been established.....LMMFAO ;D

........................jonny :D

Title: Re: Afraid
Post by CathiP on Sep 15^th, 2003, 3:27pm

Jonny?!!! ??? An Angel? !!!! ???HeeHee ;D, Hoo Hoo ;D, Haa Haa ;D......I'm rolling here ;D......tears streaming down my face!!!!!!!!!

............yeah, truth is, he is a devlishly good angel!

.....with a great sense of humor!!!!

Jonny, hope you're doing better now...I know you were doing battle for awhile.......are ya back on top now?

PF!
Cathi ;)

Title: Re: Afraid
Post by Jewel on Sep 15^th, 2003, 3:28pm

I'm taking enough medication as it is. I'm actually quite eager to stop taking Verapamil. I don't like having all these drugs in my system. You know?

Title: Re: Afraid
Post by UnsolvedEquation on Sep 15^th, 2003, 3:31pm

It might be the Verapamil that is keeping the beast away. Maybe ?

Title: Re: Afraid
Post by jonny on Sep 15^th, 2003, 3:41pm

on 09/15/03 at 15:27:39, CathiP wrote:

Jonny, hope you're doing better now...I know you were doing battle for awhile.......are ya back on top now?

The battle rages on Cath, but I had nine weeks to recharge the old batteries so im ready for anything this prick can throw at me, the thing that he has been unable to understand in the last 28 years is that "I NEVER LOSE!!" ;D

But thanks for asking :D

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

Title: Re: Afraid
Post by Charlie on Sep 15^th, 2003, 3:45pm

Sorry about this kid.

All I know is to work on my technique. I know you all give up on the thing but it works a good chunk of the time. It doesn't work immediately but it can really shorten them.

Kick it in ass.

Charlie

Title: Re: Afraid
Post by stevegeebe on Sep 15^th, 2003, 4:41pm

For what its worth Jewel (and I don't know if the following was the cause), I discontinued my meds, Verap included, about a week after I went PF.

Went about 6 weeks with just a bump here and there. I've now been in another cycle for about 3 weeks now.

I think I did the wrong thing and am paying for it now. Do what the others have said.

Best of luck.

Steve G

Title: Re: Afraid
Post by godsjoy on Sep 15^th, 2003, 5:50pm

Interesting...'cause I've been Cluster free for about 3 days....though I kind of shadow some.....My Neurologist told me to just stay on it.....I really don't want to be on it 24/7 though.....I think I'll wait a few weeks...Its not that expensive after all....
Blessings,
Karen

Title: Re: Afraid
Post by Prense on Sep 15^th, 2003, 6:00pm

I'm at 480mg now and likely will be bumping that soon...gotta do that indeffinately I reckon. Hopefully it starts working before I hit 960.

Your decision would be simple if I were in your shoes.

PF!

Chris

Title: Re: Afraid
Post by Ueli on Sep 15^th, 2003, 10:49pm

Once upon a time there was an erudite doctor who wrote in a book that Verapamil does have the ability to shorten a cluster cycle. And since for what one has in black and white, one can carry home in comfort (Goethe) this old fairy tale is still hawked around by some doctors who get all their knowledge from black squiggles, and not from treating real life clusterheads.

All that Verapamil does is to dampen down the CH attacks, in the ideal case down to zero.
So, it is sometimes a tricky decision to make: Is the cycle over or is Verapamil just bringing a 100% success?
A comparison with the length of previous cycles can help to decide if it is already time to stop Verapamil.
But it certainly is recommended to reduce the dose by a small amount. If after a week there are no attacks returning the tapering down can continue, otherwise go back up the previous amount.

PFNADs
Ueli