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Cluster Headache Help and Support >> Cluster Headache Specific >> Is the beast back?
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Message started by Melby29 on Apr 7th, 2011 at 9:57pm

Title: Is the beast back?
Post by Melby29 on Apr 7th, 2011 at 9:57pm
I’ve had 2 CH cycles, each were about 7 weeks and I had 4 weeks in between. Each cycle started with a real sudden, distinct first headache.

Now I've been about 6 weeks PF, and I’ve been coming off topamax (down from 100mg 2xd to 50mg 2xd) but still on 90mg verap.

Just to recap, by the time I got in to see the headache specialist, I already had my O2, my stupid neuro had me on topamax for “migraines” and the CHs stopped about a week after I saw the headache specialist. So when I saw him again on 22nd March he started to wean me off the meds.

SO – now since Monday, I have been getting what seem like shadows a couple of times a day. Maybe a K2? 3? They don’t last too long, 10-20 min, sometimes I have an energy drink, sometimes nothing just out of curiosity to see if they turn into anything else. So far they haven’t. Just around the back of my head at the moment, nothing around my eye or nose. But mine have pretty much been mainly around the back of my head for most of the cycle.

Even though the first 2 cycles started quite dramatically – could this be a new one sneaking up more subtly this time? Or I guess the lower dose of Topamax bringing them back?

Title: Re: Is the beast back?
Post by Mike NZ on Apr 7th, 2011 at 10:20pm
It could be the start of a new cycle. It's very obvious from having read the forums for almost a year that CH can morph from cycle to cycle so you can't always expect that the next cycle will be exactly like your previous ones.

Title: Re: Is the beast back?
Post by Melby29 on Apr 7th, 2011 at 10:26pm
Thanks Mike - that's what I was afraid of.

I guess I'll have the O2 on hand for the weekend

*sigh*

Title: Re: Is the beast back?
Post by wimsey1 on Apr 8th, 2011 at 7:53am
I understand the fear. The good news is being prepared won't trigger another cycle, and it might save you a lot of pain. So...be prepared. With your favorite abortives and with a plan to ramp up on preventatives. The best emergency plans are the ones we never have to use. Blessings. lance

Title: Re: Is the beast back?
Post by chrisw on Apr 8th, 2011 at 10:18am
sometimes shadows last months after the cycle ends.  maybe its just leftovers.  Try to hope for the best.  Good luck :)

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