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        New Message Board Archives >> 2003 Posts >> Eposodics: a serious question about CH...
        
(Message started by: Ree on Oct 5^th, 2003, 8:39pm)

Title: Eposodics: a serious question about CH...
Post by Ree on Oct 5^th, 2003, 8:39pm

Hi Dave as you all know is hopefully ending his cycle... Only a mere shadow here and there...He wants to taper off his Neurontin he is down to one 300 mg 3 times a day... How long should he wait before he stops taking it all together?.. Do you guys stay on your preventative forever? How long are you pain free before you go off your preventative? Same question 3 different ways... Thanks... Love Ree and (Dave of course)

Title: Re: Eposodics: a serious question about CH...
Post by Leesa on Oct 5^th, 2003, 9:13pm

HI Ree, :-* Dave never comes off his prevents. Only reason is just in case the beast shows up outta the blue and he has in the past much to our dismay! >:(IMHO with the Neurontin yall may want to talk to your docs about that one. Sorry we werent much more help for ya hun. Love to you and Dave.
L ;D

Title: Re: Eposodics: a serious question about CH...
Post by Lori on Oct 5^th, 2003, 9:31pm

Hi Ree, I never took the med you mention, so I wouldn't want to guess on it. I know my neuro told me not to start weaning off my meds until I went a straight two weeks without any signs of CH, shadows, twitches, etc. Once I went two weeks, we started tapering the topomax first, then the verapamil. So, I guess he needs to talk to his doc but I'd make sure his cycle is completely over first before considering it. I am episodic, get hit every 2 years usually, so no need to stay on anything once cycle ends for me.

Title: Serious question about episodic CHeads...
Post by Mr.Happy on Oct 5^th, 2003, 10:05pm

Ree,

I dunno........but for me, the whole idea of being Episodic is to take crud in cycle, then get back to non-medicated reality ASAP. Would think dumping the Neurontin would be in order, unless you find him wandering around the house at night with an ax muttering "Red Rum, Red Rum."

Once he's weaned, Spike him with a Viagra......then come back with a _Giggle_ report. Heh.........

Nifty tits,
RJ

Title: Re: Eposodics: a serious question about CH...
Post by kim on Oct 5^th, 2003, 11:02pm

Hey Ree,

Dave has to tawk to his neuro bout the taper thing for Neurontin. I tapered off day by day and dose by dose and imagine same for Dave. It's up to the doc that prescribed it, not US. Well wishes for Dave and continued PFDAN :)

Title: Re: Eposodics: a serious question about CH...
Post by pigeon on Oct 6^th, 2003, 4:22pm

Hello Ree,

I would follow the docs advice. For myself I usally start tapering off the topamax after a few pain free weeks(3-4). Shadows may stick around for some time, as long as I don't get hit I keep tapering. Be careful with those dopey head drugs.

Good luck
JoeP

Title: Re: Eposodics: a serious question about CH...
Post by Ree on Oct 6^th, 2003, 4:28pm

Thanks guys I will tell Dave I appreciate the input... love to you and Happy Monday~~~~ ree

Title: Re: Eposodics: a serious question about CH...
Post by Elaine on Oct 6^th, 2003, 4:55pm

Ree,
I took the meds and stopped taking it but I was not Eposodic at the time so I can't answer it.
I just wanted to say I am so happy his cycle is coming to a end. Praise God!
Hugs

Title: Re: Eposodics: a serious question about CH...
Post by jonny on Oct 6^th, 2003, 5:03pm

Hey Dave

ROCK-N-ROLL!!!!!!

.................................jonny ;D

Title: Re: Eposodics: a serious question about CH...
Post by TxBasslady on Oct 6^th, 2003, 6:04pm

:)

Glad to know that Dave's cycle seems to be coming to an end. Wishing him the best of luck and lotz of pf vibes.

You are a great supporter, Ree. He is very lucky to have you! 8)

Jean

Title: Re: Eposodics: a serious question about CH...
Post by Ree on Oct 6^th, 2003, 9:50pm

Thanks Jean~~~There are times when I don't feel quite like a great supporter... I have to get tough and I even get to the point where I am quite spent... but thankyou for your kind words~~ I sure try really hard...
Love to you all... for it is with your support, that I am able to help Dave with all of this pain... Ree

Title: Re: Eposodics: a serious question about CH...
Post by don on Oct 7^th, 2003, 1:11pm

Quote:

Do you guys stay on your preventative forever?

A very famous British doctor has questioned why anyone would stay on an industrial strength drug if there was no obvious need to do that.

If the cycle is over.......its over.