(Cross posted on CB forum as well. Figured there were some folks over here that aren’t active over there)


As posted in another thread, my wife started the 3rd cluster of her lifetime the first week of May.  In 2014 her cluster lasted 5-6 weeks, in 2015 2 weeks, and she's currently in the 5th week since this one started.  (The other two were in late June/early July, so the May cycle is a first). For the first weeks of this cycle it was consistently a single Kip 6-8 once per night, each night between 2AM and 4AM.  She went on a prednisone taper the 3rd week of 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days.  She was CH free the first day of the prednisone, and currently she's 5 days past her last pred dose with no CH at all since she stopped.  (Good sign). She started taking Verapamil ER (I know, not the preferred formula) at 120mg for the first few days of the pred taper and increased to 240mg which she's been on since.  She's also been on the D3 regimen since day 2 of the entire cycle and hasn't missed a day.  Did the 12 day accelerated loading and is still taking 20K IUs per day. 

The fact that she still hasn't had the CH come back 5 days after the low dose pred taper ended seems like great news.  That said, she been having what may be shadows, or just bad tension headaches every morning upon waking, which go away with coffee, water and advil each morning.  Then she usually gets another one of these same headaches early afternoon, which also go away with the same treatment.  These definitely aren't severe compared to the CH, but are still very much bothering her.  She describes the pain as either whole head, or one sided, interestingly enough on the opposite side of where her CH were this cycle. 

We're kind of in a holding pattern, as it seems like 1 of 3 things is happening:

1) The cycle is ending naturally, and the verapamil is causing these tension headaches as a side effect.

2) The cycle is ending naturally with shadows marking the end of her cycle, and the verapamil/D3 aren't changing anything at all.

3) The Verapamil and D3 are helping by slowing down her daily CH to only a few manageable shadows per day.

We are about to go out of town for a week, and she has an appointment with her neurologist when we get back.  Our plan now is to not change anything, as the current situation is absolutely manageable and we don't want to risk changing something and revamping the cluster.  Is that also what you all would recommend?  She's still too new to this disease to know exactly what her patterns are.  She hasn't been brave enough to try the beer test, but we did try one other test involving an activity that's normally a trigger for her, and she passed that.    Any feedback is appreciated!

Have been on a Verapamil for 15 years.  Take 240 er 2xd and just watch my BP so it doesn't drop.  I went many years without any preventative and off and on abortive.  The Verapamil just stops the HA from coming on.  The problem is: Verapamil does not work for everyone but it seems it might be working for your wife.

Good luck to your wife on finding her freedom from these devils.