Hello all.  Some of you may remember me from last year, as I was battling severe chronic CH for years past.  This past July I had a sudden very high heart rate combined with A-fib that landed me in ICU.  The cardiologist put me on Diltiazem (Cardizem) via IV to bring down my heart rate, along with constant oxygen.  All headaches stopped while in the hospital, I assumed due to the oxygen.  I was released the next day when my heart slowed down and got back in rhythm, and given a prescription of Diltiazem to take daily.  The dosage is now 360mg 24hr time released.  I have had no cluster headaches since that day in the hospital.  After discussing this with my cardiologist, he said this drug dilates the blood vessels in my head and gives the side effect of cluster relief.  He was going to bring me off of the drug but since it's controlling my blood pressure and getting rid of the headaches, he's leaving me on it.  I know everybody's different and this may not work for everyone, but I thought it my duty to let the forum know.  What I do know is I'm taking no more mind-numbing drugs and I've returned the O2 tanks.  The Diltiazem has absolutely no side effects with me except ridding me of CH.  I can't begin to express how thankful I am for that stay in the hospital in July.  I'll not be spending much time here going forward, but if anything changes, I'll definitely keep you informed.  Thanks for all the helpful advice many of you gave me in the past. 
Gary

Holy Crap Gary, yet another CH drug discovered by accident.  Seems that's how most of our best meds have been brought on board. Please check in with us at least monthly and give us an update. I'm adding this med to my "temporary" drug library, will be VERY curious to see the long term affect on CH. More so considering the lack of any side effects. Praying this is a permanent fix for you, thanks for sharing!

Joe

Thank you - I'll make it a point to give monthly updates going forward.  For now, I'm finally convinced it's more than just short fix or cycle.  I never had a remission for over 6 years and had resorted to using hydrocodone daily along with oxygen just so I could get my job done.  I tried some of the other CH drugs but they didn't work long term  and some messed my mind and speech up.   I haven't had so much as a Tylenol since July (to be truthful, I've had two, but those times were for a sore back so I'm not counting them). My cardiologist at Asheville Cardiology, confirmed that this drug is the reason my CH is gone, and he was visibly excited about it while explaining the reason it was working for me.  Well, I guess time will tell but this is the only break I've had since the CH began years ago, so I hope it's for keeps. 

Bob, you lived just a short drive from my town.  I used to drive right by you on my way between Marion and Shelby.  It's a pretty drive through there.

Quote:


I guess that means you don't have much to share with others who might benefit from your experience.

Too bad.

Brew wrote on Oct 28^th, 2013 at 12:08am:


I don't know where you get that.  When you quoted me, you left out the second part of my sentence.  Here's the exact quote: " I'll not be spending much time here going forward, but if anything changes, I'll definitely keep you informed." 

Also, my first sentence in my second post in the thread was, "Thank you - I'll make it a point to give monthly updates going forward." 

I'm not trying to start anything, but don't misquote me and then make it appear that I'm keeping useful information from the forum.  Just stop it.
Gary

Lol
The headaches are gone from the day I started the medicine, and a specialist said it makes medical sense with that drug.  That's enough confirmation for me!   

And with that I must go.  I'll be back in a month to report, or earlier if anything changes. 

Later!

fun2drum wrote on Oct 28^th, 2013 at 12:56pm:

Great information, Gary, and I look forward to the updates.

Cheers and beers,

Brian.

here here !!!

fun2drum,  that's excellent news !
  will be interested to here your progress.
     hope u stay pain free

colin
   

Perhaps you may want to ask either your Cardiologist, or a headache specialist about the use of a drug called Diltiazem.
These medicines work by opening up blood vessels, which lowers blood pressure and lets more blood and oxygen reach the heart. A cousin to Verapamil; Diltiazem is also used sometimes as a CH preventive medication.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Damnit Ben I missed that post, I try to copy the newer stuff to my CH files, thanks for the posting.

Joe

That's great news Gary, one more thing to be thankful for today. Here's hoping it's a lifetime of relief for you.

Joe

Thanks guys.  I want to share one more thing.  I'm not a drummer by trade - it's just a serious hobby that almost pays for itself.  By day I work in sales for a big company.  I was having to fly under the radar with the CH, and it's fortunate I have a manager who understood and covered for me, and I don't have regular clock-in hours.  That being said, I have been in the bottom 20% in my state for the past 5 years in sales numbers.  Since July I have reached the position of number one in my state, beating out 60 others.  I realize this can change and there are other market variables that affect sales numbers, but could it all be coincidence?  I don't think so.  I didn't think I would ever be able to do more than just barely get by at work, but with the CH gone, I feel like I have no limits.  Back to drumming, I've tried to keep my practice up but haven't been in a band just because I couldn't make it through a gig without the CH killing me.  Now I'm talking to some guys I used to play with about starting something back up and playing again.  I can't begin to express my happiness with all of this.  I know better than to get over confident where CH is concerned, but I'll ride this as long as I can.  I hope you know I'm not trying to gloat - this is just very exciting to me and I can't say this stuff to anybody else and expect them to understand.  Okay, I'm done now - thanks for listening.

Hey everybody - It's been a little over 3 months since my last report.  So far so good.  I don't mean to insinuate that the medication is the only reason for this, but at the end of the year I accepted an award for top in sales for the 4th quarter where I work, and there are over 50 sales reps I was competing with.  This is in contrast to being in the bottom third for the past few years prior to the remission.   I joined a rock band this month after several years of just practicing drums in my basement, too.   I really hope this is permanent because I used to think it was just about ridding myself of the pain.  Now I realize that it's also about getting my life back.  I'm not naive enough to have total confidence in my remission being permanent, but I'm hoping. Stay tuned and I'll keep you posted.   I'll be praying for all of us, that we all find the way to keep the pain away permanently and get our lives back.

Interesting find, and I'm glad this appears to work for you. I think some of those that have been around here for a while can sometimes come across a bit negative because we can get some horse**** on this forum from time to time from people whose intentions range from being cruel and deceptive to just flat out uninformed. I felt your account was sincere and useful to the CH community, and I hope you do stick around a bit to contribute to the discussion or just help keep the community lively.