After 11 months of CHs without a break I think finally I'm either hitting the end of a very long cycle or am moving away from chronic CH.

Before I started using any preventives I was getting 2-3 CHs a day, with preventives this dropped down to 2-3 a week, however since New Years eve I've been getting them less and less, only 13 so far this year, with the last one 20 days ago, the one before that 10 days further back, two one day and then a 17 day gap.

I've also been getting a lot less shadows although several times a week I'll get ice pick headaches that have the pain of a CH but only last a couple of seconds. These arrive about the time I'd normally get a CH.

With all this improvement I saw my GP to discuss things. I had an ECG which showed that the verapamil is not affecting my heart (PR interval is fine) and we decided that I can start to reduce my verapamil in stages from 480mg, seeing how it impacts my CHs. With everything I've learnt here it was very much a discussion about what we thought would be the best option rather than a GP telling me what to do.

After so long it seems unreal that they might be going away, even though I know that they are quite likely to return at some point. I've seen myself change from trying to just keep my head above water to enjoying life between hits which are getting pretty infrequent.

I also saw the hospital respiratory service who confirmed that my 3 month oxygen trial that started in November last year will now continue as long as I need oxygen and I only need to keep in touch with them once a year.

I've got a huge smile on my face with all the good news.

It's great to finally post news like this.

I'll also be hanging around too, there is no way I'll run away from this forum.

So glad to hear of that Mike!  Here's hoping your pain free days are never ending!
-Gary

Congratulations Mike! May you be pf forever. And just a word of caution...go down slowly on the verapamil and be prepared to jump back up if they come back. Last April I went into a kind of remission (was getting hit 4-6X/day, then went to 1-2X/week) and like you, I felt I had hit the good health lotto. After 9 months, started retreating from the verapamil and bingo...it's baaack! This doesn't have to be your experience and I pray it is not. Good luck and keep us posted. Blessings. lance

Congrats! Words can't describe the happiness I feel for you.

After being diagnosed it always seemed like this will be an uphill battle, but news like this coming from other clusterheads gives us younger members hope for a brighter future.

Congrats again and thanks for giving me hope!  ;D

I'm now up to the total of 50 days pain free with no sign of any CHs as I've reduced my verapamil slowly to zero.

Looking back, it's hard to imagine or remember the absolute agony of a CH other than the description of a Gom jabbar from Frank Herbert's Dune books.

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I think I'd now pass the test to be considered human.

I know that it's likely that I'll experience CHs again first hand, but for now I want to live and enjoy life without constantly thinking about preventives and oxygen to abort.

And you're still stuck with me, after all, people here helped me so much to get to where I am today.

Yaayyy!  On all counts. Blessings, Mike. lance

Thats so great to hear Mike!

You were a HUGE help when I first came here. Thanks again :)

hooray!!!
:)

shifto wrote on May 15^th, 2011 at 9:38pm:

Thats so great to hear Mike! You were a HUGE help when I first came here. Thanks again :)

Yes I've seen Mike dish out a LOT of succint and very helpful advice to the incoming here - it can feel like a busy emergency room sometimes.

I didn't even realize you were dealing with a serious chronic battle through all that Mike - a huge YAY for your recent PF-ness.  :)

Anyone beats beasty we all win a little bit! Hoping this remission lasts a lifetime. ;)

Joe