Hello CH Friends,

I am back since my cycle in 2005-2006.  Last cycle in Fall 2007 I did not visit this board, for various reasons I won't detail.

First, let me thank all of you who recommended keeping a detailed diary of headaches, meds, etc.  I have learned a great deal from 8 years of CH journalling, most significantly the rhythm of my cycle, which allowed me to predict my 2007 cycle within 3 weeks, and the next cycle I expect in July 2009.  So I will repeat the mantra:  KEEP A CH DIARY.  Some doctors will appreciate it as well.

In April I phoned New England Center for Headache, and fortunately was squeezed into a canceled appointment in June, just weeks before the Beast's awakening is expected in July.  NECH understands and cares.  Dr. Sheftell is an amazing advocate for CH care.

Previous cycles were treated with prednisone and Imitrex (oral tablet).  My insurance allowed Imitrex injection 2 times per year (useless).  I have a ~30 day cycle so the other preventives didn't make sense to those doctors.  There is a list of other meds tried with no help; the worst experience was with Topamax (Dopamax).  Dr. Sheftell shook his head.

Dr Sheftell's plan is two-fold:
PART 1
A.  Start verapamil immediately.  160 mg per day for 7 days, then double to 320 mg.
B.  Get sumatriptan (generic) injections to prepare for first attacks.  Any BS from pharmacy or insurance he would bulldoze, and assured me I would get the medication I need.  I have the starter kit and 1 refill ready.

If the verapamil can take hold before the cycle starts, he is hoping it could block the entire cycle (there isn't a smiley big enough to fit here), or at least significantly reduce the intensity & duration of a cycle.

PART 2 - If CH attacks occur
A.  Use the sumatriptan injection to abort as needed
B.  Begin prednisone taper immediately
C.  Fill O2 prescription immediately.  Tank should be delivered next day.  I already have the O2PTIMASK.
D. Start using O2 instead of the sumatriptan to abort attacks.  He suggested starting at 10 LPM, up to 12 LPM.
E.  Call NECH for counseling and adjustment of verapamil and prednisone dosage.

This is the first time I am trying verapamil.  This will be the first time I try O2 (if CH attacks hit); same for sumatriptan injection.

This is the first time I feel like I am under the care of a doctor who knows and understands.  20+ years later.  NECH and Dr. Sheftell are a blessing indeed.

Taking verapamil, waiting, hoping my newfound optimism lasts.  Full news story at eleven.

Cheers,
Fox

Good for you. Glad you got the lowdown. 02 first, trex if it dont work.
all the best
the bb

Yep, Verapamil it is for a preventative.  I've been on Verapamil (first at 240 mg/day, then 360, and now 480 mg/day) for the past 4 years.  It doens't always stop the headaches, but it does help keep the cycles spread out.  Good Luck!

i use 460mg verapamil and 900mg lithium as prevenative.
my abort is o2 25lpm then energy drink and a trex shot

as you see alot of us are in the same boat

My only advice is to stay ready for the unexpected.  The headache diary is great but you do have to know that CH can change on you in an instant.  So, as I said, enjoy the pain free time but be prepared for the unexpected. 

The good news is that we have seen people go years without a cycle.... so sometimes the surprises are GOOD.