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        Cluster Headache Help and Support >> Cluster Headache Specific >> How do you know when you're out of cycle??
        
(Message started by: Wayne on Jun 5^th, 2007, 1:55am)

Title: How do you know when you're out of cycle??
Post by Wayne on Jun 5^th, 2007, 1:55am

G'day All

A question to all, and one to which i got the answer wrong last year. if you're on a good preventative which is working effectively how do you know when your cycle is over.

last year Iwas on Topomax which, apart from making me a bit dopey, was very effective and banished the CH completely. I stayed with it for three months when I thought I should be out of cycle and then slowly stopped them, a week later the beast returned with a vengeance so I obviously wasn't.

Problem is these things are so unpredictable one is never sure if the cycle is finished, just taking a break or if the meds are working.

Title: Re: How do you know when you're out of cycle??
Post by Bob_Johnson on Jun 5^th, 2007, 10:13am

There is no medical test. Your trial without Top/any preventive is the only thing you can do.

After you have gone thru this process several times you will get some idea of what your particular pattern is.

Just another of the little cluster frustrations which fill our lives! <bg>

Title: Re: How do you know when you're out of cycle??
Post by Guiseppi on Jun 5^th, 2007, 11:16am

My neuro sez after 4 pain free weeks start to wean off and see if you get hit!!!! Through trial and error I know they will always run 8-12 weeks. I slowly start the wean off at 8-10 weeks. As Bob said, it's one more of the annoying aspects of this damned thing.

Someone should creat a little EPT for this so you can pee on a little stick, if it turns blue you celebrate and go off your prevent! One of you really smart guys get to work on that will ya? ;;D

Guiseppi

Title: Re: How do you know when you're out of cycle??
Post by BMoneeTheMoneeMan on Jun 5^th, 2007, 12:06pm

i have heard weaning off your med very very slowly is a good way to do it. Take a full 30 days to wean off, towards the end of the 30 days, you should have a feel as to whether the beast is gone.

Title: Re: How do you know when you're out of cycle??
Post by Brewcrew on Jun 5^th, 2007, 12:12pm

Have a few cocktails. You'll be able to tell mucho pronto. Screw that 30-day stuff. ;)

Title: Re: How do you know when you're out of cycle??
Post by midwestbeth on Jun 5^th, 2007, 6:22pm

Glad you posted this question. It's something I've been wondering about myself.

Through trial and error I've found that I can have a few drinks without getting hit. Red Wine and Beer BAD. White Wine and Vodka GOOD....... in moderation (no more than three drinks)

Beth

Title: Re: How do you know when you're out of cycle??
Post by ClusterChuck on Jun 5^th, 2007, 6:24pm

on 06/05/07 at 18:22:03, midwestbeth wrote:

Red Wine and Beer BAD.

So have a red wine or a beer, to test if you are out of cycle or not. It is a LOT quicker than waiting the 30 days!

Chuck

Title: Re: How do you know when you're out of cycle??
Post by midwestbeth on Jun 5^th, 2007, 6:31pm

on 06/05/07 at 18:24:54, ClusterChuck wrote:

So have a red wine or a beer, to test if you are out of cycle or not. It is a LOT quicker than waiting the 30 days!

Chuck

I'm still waiting for the 30 day pf thing I keep hearing about :-/.

Beth

Title: Re: How do you know when you're out of cycle??
Post by Guiseppi on Jun 5^th, 2007, 6:33pm

So have a red wine or a beer, to test if you are out of cycle or not. It is a LOT quicker than waiting the 30 days!

Chuck

Provided in the other hand you have your oxygen mask, and an imitrex jab close by!!!!

Guiseppi

Title: Re: How do you know when you're out of cycle??
Post by George_J on Jun 6^th, 2007, 1:24am

As others have said, when you're episodic, you get a pretty good idea after a while how the thing is going to go. For me, it's always around 6-8 weeks. If I go seven days without a hit or a shadow, I take the "beer test". If I pass, it's over.

Besides that, I can "feel" that it's not around any more. I don't know any better way to describe it, but when it's gone, I know it.

Best,

George

Title: Re: How do you know when you're out of cycle??
Post by Wayne on Jun 6^th, 2007, 1:47am

Thanks for the advice folks, I thought there was a technique I was missing here, last year I stopped off the meds in 3 days (which I thought was slowly), won't do that again in a hurry. so gathering from the above the strategy should be to chug back a few cold ones in double quick time and if I survive the experience without a hit then time to start weaning off slowly.

On the brew thing I have found something that I can drink socially without bringing on the beast, Vodka and Redbull. definitely not the same a a cold beer but it beats the hell out of clean coke. I've tried this twice now with only a shadow second time round. I got really hyper though which also wasn't bad.

Title: Re: How do you know when you're out of cycle??
Post by birdman on Jun 6^th, 2007, 7:54am

Whatever your preventative of choice is, always taper off slowly. I have learned over the years that a rushed taper is no good. Take your time. And the alcohol test works for me too.

Title: Re: How do you know when you're out of cycle??
Post by aprilbee on Jun 6^th, 2007, 9:35am

I use the beer test too, I'm not even a drinker, but that's what I do after 2 weeks or so...and here I thought I was the only one... ;)

Title: Re: How do you know when you're out of cycle??
Post by GrandPotentate on Jun 7^th, 2007, 10:20pm

It seems a lot of us use the beer test, and it works well for me. I love good beers, and miss them during a cycle. Perhaps we users should start our own little group:
Cluster
Headache
Users
Group

CHUG!

(sorry)

Title: Re: How do you know when you're out of cycle??
Post by midwestbeth on Jun 8^th, 2007, 7:59am

on 06/05/07 at 18:24:54, ClusterChuck wrote:

So have a red wine or a beer, to test if you are out of cycle or not. It is a LOT quicker than waiting the 30 days!

Chuck

Went to a Cardinals game last night and had a beer.............it's kinda mandatory at Busch Stadium ;)............Anyway the beer only brought on a heavy shadow that lasted for about 15 minutes and then I was fine. I think I'm in a low cycle since I only get two or three a week now and the beer only bringing on a heavy shadow is a good sign to me.

Beth