Hi old and new friends-

it's been over a year since I've posted anything, mostly because it's been a year of managing the endless cycles with a fantastic specialist that I found because of THIS forum, and you people.

He literally saved my life last year. In Jan 2011, after 4 months of untreated, non stop beat downs (and two worthless attempts with neuros) I was at the end of my rope, and by the grace of something amazing, I ended up at a specialist who treats CH, right here in my city.

He immediately put me on preventatives and gave me an Occipital Nerve Block on both sides, the very next morning after having a level 10 attack.

Since then, I get a nerve block as often as allowed - I LOVE them. and I am on Verapamil and Topamax, so yes, my IQ is down considerably since last year.  And I can't remember my phone number sometimes, when asked ;)

While I haven't had a full on level 10 attack since then, I manage shadows that can get to a level 6, and weirdly enough, I can still feel the "cycle" happening underneath all the meds and blocks.  I can tell when it breaks naturally because I suddenly feel such a release and such happiness and vitality, for 2 weeks. and then the dreaded cycle returns. 
I've only had 3-4 natural breaks in the past 1yr and 4 months.

I think the hardest thing for me to manage is that while I am so thankful that I have been able to get to a specialist -- I know after having read so many stories here, how almost impossible that is -- and I am so happy to have the horrific, unbearable, pain under control, it still causes waves of emotional turmoil.
The shadows themselves still break me at times.
The weight of 16 months gets heavy - (I am humbled by you chronics that have been doing this for so long sometimes with much less.)
It is draining.

Trying to grow a new and wonderful relationship around this is really delicate.  At times, I want to duck and hide all of this from him. 

BUT.  this terrible thing has forced me to change in ways I wouldn't have otherwise, and I'm sure like every single one of you here, once you have been on the very edge of the cliff and looked down, things take on a much more accurate form of meaning.

I think we should all have badges to remind us of our own bravery. 

Wondered where you ran off to. ;)

I don't recall, did you ever check out our sister site, clusterbusters.com      Helped some of our tougher cases.

[smiley=hug.gif] Glad you're still fighting the good fight. Wishing you a break soon.....

Joe

Chronic since 2004 until I tried Batch's D3 therapy. Worth a look. No drugs and my first pain free days since Feb. 04.
Good luck!

Oops, under Medications,  Treatments,  Therapies

123 Days Pain Free and I Think I Know Why....

I am also a chronic, and have been for over 5 years of the 30+ years of CHs. And you are right: it changes us. Our struggle, as you point out, is to make the changes good ones. More vigilance, not taking pf days or nights for granted, learning to live in between...and of course, coping with high levels of serious and intense pain. It does restore a balance to things, doesn't it? Blessings. lance

Thank you guys. 
Good to be back here!
I'm definitely up for trying Batch's famous therapy / remedy. and I'll check out clusterbusters - it's been a long while.
Time to really gear up.

thanks for blazing a small path ahead. you all rock.