Hello Friends,

My last 'regular' cycle ended in October, then shadows showed up in December, followed by full attacks starting January 7th (Thursday night).  Over the weekend I was "dancing" with KIP-7s.  This totally surprised me, as I am used to 21 months remission.

Monday AM I had Rx for verapamil refilled and Dr. faxed new Rx for O2.  All set for a surprise cycle.  Monday night another attack came, which I caught early and aborted with O2.

That was the last attack, and since I've had 5 PFDANs in a row.  It seems far fetched to think 2 days on 320 mg verapamil conquered The Beast.  Right now, I'm confused.  Trust me that I'm not complaining about PFDANs, just confused about the successize, climbing KIPs ending like that.  Apparently my old, reliable cycle has turned tricky in my 50s.  What to do?

I should check in with Dr. Sheftell tomorrow.  And I'm still counting the PFDANs before I decide anything about this cycle.  Still taking 320 mg verap.

Wishing PFDANs to us all,

Fox

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Regular as clockwork then all of a sudden the beast throws you a curve ball.
I did notice a change in the beast when I entered my 50s. The attacks were less regular and I could sometimes fight them off with deep breathing excercises. I decided it was due to getting older and the arteries getting harder and less flexible meaning less pain as the nerves were getting less streched during an attack.
That theory went out the window in early December. The beast proved he was just as strong as ever. Although I did sleep clear through the night last night, so maybe he is going to take a break for a while.
Glad you are having some pain free days. Hope it lasts for you.

Fox, I posted in your other thread as well, but will re-post the info here;

I don't know if verap would cause this kind of behavior or not, since I am pretty significantly hypOtensive and was never able to get beyond 240mg without passing out.

Many here have used a verap and lithium combo as a preventative strategy and that works well for them, and of those, many had to go that route when just verap either didn't work to begin with, or stopped working as it had been.  Something you may wish to talk with the doc about.

Dr. Sheftell I know myself, although not as a patient, but as part of the Advocacy team with OUCH and I spent a fair amount of time talking with him and his fellow docs and researchers about CH and it's treatment options.  I would strongly suggest that you relate your information to him and discuss the alternatives or how to proceed from this point with him.  He's certainly one of the Dr's that truly KNOWS about CH and was always open to new information and discussing different ways to tackle CH.

I think the one thing I've learned over the years is that there is only ONE certainty with CH - and that's that nothing is certain.  The beast seems to have a knack for changing and morphing and generally doing things to keep us on our toes and ensure we are unable to always be prepared and know what is going to happen!

Cat

Hello Cat,

I am certainly learning much more this year about the extra uncertainties of CH, particularly in my 50s, after 20+ years of battling the Beast.  That regular cycle I had for so long was just too easy to plan around.

I saw Dr. Sheftell last week after the KIP-7s hit, and I am due to phone an update to him tomorrow.  We were checking out a possible systemic infection correlation to this re-cycle*, but GP reported Friday all tests AOK.  I will discuss the latest events/non-events of the cycle and see what he says.  Agreed - he is an excellent CH fighter, and I feel fortunate to be in his care (but it took me years to eventually find him).

Fox

*Just thought I'd add to rebound vs. recurrence  ;)

Seems I spoke too soon and/or jinxed myself.

After 5 PFDANs, 3 attacks came overnight.  Glad I had the O2 handy.  Need to keep tabs on this strange cycle, and expect the unexpected. [smiley=confused2.gif]  I wasn't counting chickens yet anyway.

Fox

Hey Fox.
   sorry to hear you are getting hit again.

My cycle was also very unpredictable this year. 
I'm 55., and usuall cycle of 3 months in Oct. turned into 6 months starting in July.   jeesh
   no ryme or reason...just got to hold on I guess.

  Keep us posted please...         pfdan to you

Fox,

I am like a lot of people this year in that my usuall 6-8 week cycle went haywire this year.My cycle was so predictable for the last 15 years...But  Like lorac mine started at the end of JUNE and has been ongoing for 6+ months now, although much duller except for a few weeks in october. I still feel a dull shadow every day kip 1-2 at most but it just reminds me that the beast is inside my head.

I did a post back in August ,I think, asking about others cycles last year,I got  a big response about how others cycles had changed or went much longer. I definately belive there is something to do with daylight hours etc... but I wish we could put a definative finger on it besides just a mafunctioning Hypothalamus. I just wonder why the hypothalamus reacts the way it does... I guess I will leave that to the experts to try and figure out, I am done trying to find an answer.

Hope you get to feeling better,   Jay