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Cluster Headache Help and Support >> Cluster Headache Specific >> On a break from hell
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Message started by Bonnie lee on Oct 17th, 2012 at 4:38pm

Title: On a break from hell
Post by Bonnie lee on Oct 17th, 2012 at 4:38pm
It seems that I am lucky and the devil has decided to give me a break. A much needed one since he has been my best buddy for a straight year and a half.
Thank you batch for your vitamin regimen! It seems that since I started it my life has changed. I have had 1 small episode a month which is quickly taken away with a nasal spray!
I was wondering if any of you who are lucky to have breaks keep taking your medications such as topamax and verapamil?
I really don't want to stay on them if I dont have too.

Title: Re: On a break from hell
Post by Guiseppi on Oct 17th, 2012 at 6:43pm
I'm peisodic so I go off everything.....except of course the Batch Regimen....when I'm off cycle. Great to hear you're catching a break....hoping it's a long one.

Joe

Title: Re: On a break from hell
Post by Kevin_M on Oct 17th, 2012 at 7:01pm

Quote:
I was wondering if any of you who are lucky to have breaks keep taking your medications such as topamax and verapamil?
I really don't want to stay on them if I dont have too.


Congrats on doing some great PF time.   :)

I wouldn't like staying on them if I didn't have to either. 

Stepping down very gradually will let you know if they are needed or not, because maybe they are still preventing very well. 

You could call and check with your doc about it and see what he suggests as a good decreasing rate. 

It's safer doing it gradually and if you are wrong in supposing the episode is over, it is only a small step up again.  It may be a lower dosage of each will suffice now, or even none at all. 

I test the water on lowering preventatives when it seems quiet.  Sometimes I'm right, a few times I'm wrong, but I try to get off them when I can.

If you decrease gradually to no medication and no hits, then SUCCESS!!


A usual safe range for increasiing or decreasing verapamil is 120mg/wk.  If you've different increments, 80mg every four days is smooth, too.  I'm not familiar with Topomax adjustments.

Title: Re: On a break from hell
Post by wimsey1 on Oct 18th, 2012 at 10:31am

Guiseppi wrote on Oct 17th, 2012 at 6:43pm:
I'm peisodic so I go off everything.....except of course the Batch Regimen....when I'm off cycle. Great to hear you're catching a break....hoping it's a long one. Joe


Nice variant spelling, Joe! Try Googling it...there's all kinds of cool examples. But that aside, I agree with Joe's sentiment, I'm glad you're catching a break, too! blessings. lance

Title: Re: On a break from hell
Post by Guiseppi on Oct 18th, 2012 at 11:02am
Wut ken i sae,,,,hukt awn foniks kleerlee faled me..... :P

;D Joe

Title: Re: On a break from hell
Post by LasVegas on Oct 19th, 2012 at 1:03pm
Congrats Bonnie Lee   [smiley=applause.gif]

I am episodic and personally choose to wean off Verapamil and all meds when i'm not in cycle.  You might consider speaking with your prescribing doctor for advice of gradual reduction to avoid possible unwanted side effects of stopping abruptly.

The vitamin regimen did not work for me at all, however I believe there are many benefits to taking multi-vitamins for daily health, so you may want to consider continuing the vitamins.

Time to finally enjoy yourself  ;)

-Gregg in Las Vegas


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