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

You really hit the gold mine on this one! Search of the largest medical library in the U.S. and found only one citation, that in 1986, on the use of this med and that was for migraine. So, clearly, it didn't get any attention for Cluster. (Suspect, in part, because it was just coming into the U.S. as a new med--and then Verap took hold.)

(Too bad we didn't make contact ages ago. I lived on 226 just 2-mi N of Polkville until 5-yrs ago. It was then that I discovered Olanzapine as an abortive.)

Holy Crap Gary, yet another CH drug discovered by accident.  :D 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

The only way to find out if it works for more people is by trying it on multiple people with active CH in a double blind study to rule out things like someone going into a long break between cycles or a placebo effect.

There is the hope that more accidental discoveries like this can result in more CH preventives being found from different drugs which will benefit people who don't get a favourable response from the standard armoury of things like verapamil, lithium, etc.

Do keep us updated...

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. 

Very interesting find we have here. It is a member of the drugs known as calcium blockers, used in the treatment of hypertension, angina and arrhythmia. It is also effective in the treatment of migraine.  :D

Quote:

I'll not be spending much time here going forward,

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

Too bad.

I was being treated with Diltiazem (aggressively, like you do with verap) back in the early 90's by a headache doc. He thought it was the better choice. But, I responded to neither.
Edit: I would think the hospital stay/treatment broke the beast's back, and the Diltiazem is keeping him at bay.

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

Quote: I'll not be spending much time here going forward, I guess that means you don't have much to share with others who might benefit from your experience. Too bad.

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

fun2drum wrote on Oct 27^th, 2013 at 6:32pm:

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.

    How did a cardiologist confirm this?

               Potter

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:

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!

  Pretty sketchy and absolutely worthless information.

                 Potter

            

          

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

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

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

Cheers and beers,

Brian.

I expect better than this from members of the board. STOP TRYING TO STIR SHIT UP ON INNOCENT FREAKING POSTS! These are EXACTLY the kind of posts that get all the nay-sayers jumping on this board complaining about the "few mean people who consistently attack posters" and convincing all others to stay away from this board. If you're looking for a fight, go get drunk at a bar and throw some punches at the biggest guy there.

Damnit this is NOT what this board is about.

Fundrum, as a moderator on this board I apologize for your treatment on this board, It is NOT an example of what this board is about. It does NOT illustrate the reason DJ started this board and continues it.

Joe

here here !!!

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

colin
   
   

Onya fun2drum, CH relief from a Calcium channel blocker; Who would've thunk it?
Genuinely glad that it works for you.

My CH specialist, a Professor of Clinical Pharmacology, leading CH expert & researcher, principal investigator in the creation of Zolmitriptan and over 700 other clinical trials, trialled me on Diltiazem for CH.

I shall give Potter the Professor's details, should he wish to discuss the validity of Diltiazem use in managing CH.

Diltiazem:
It does get used in CH.
It does work for some in CH.
Nothing accidental about it working in CH.
The news is not new.
I've been banging on about this drug since 2005 and I'm not the only one. But who listens?

From an earlier post, here May 25th 2013: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[quote]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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Glad you're PF mate.

Cheers, Ben.

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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

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

Joe

Hi - I told you I'd be back to report in a month and here it is:  I'm still pain-free with no meds except for the Diltiazem.  I'm convinced I'm not being fooled and just in a remission. That's because I'm still getting the tinnitus "warning" I always got before the headaches would kick in, but then it goes away and no headache occurs.   This is happening a few times a day and lasts a few minutes before disappearing.  It's happening now and that's what reminded me to include it.  Overall, before Diltiazem I had chronic cluster daily with no treatment being totally effective.  The day I started Diltiazem back in July, the headaches stopped completely up to the present.  If the other treatments aren't working well for some, then maybe this drug could make sense for them too.  Keep in mind that this drug affects the heart rate and blood pressure, so it may not be compatible with some peoples' medical situations.  My heart rate was too high, so that's why they put me on it in the first place.  Anyway, it's still working out.

I'll let you know if anything changes, and thanks again to all of you who've helped me through this.  I've not posted a lot in the past but have gained a lot of your knowledge through reading your posts in this forum.

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

Hi Gary,
I've been following your story with much interest, and
was pleased to read your outcome thus far.It's amazing
how just by accident you can stumble across a drug for an
unrelated medical problem and send the [smiley=evil.gif]
packing.

PFD, Hoppy.

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.

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.

It's not gloating, it's living out the CH Mantra. "Live your life between the hits!" As a guitarist and struggling keyboardist, here's hoping you get the music back on track too! ;)

Joe

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. 

Adam, I'm not going to go in the reasoning, but my doctor and I discussed Verapamil and it was decided it wouldn't be right for me, so to answer your question I didn't try it.  I have tried lots of other commonly headache-prescribed drugs, though, and had either little to no relief or really bad side effects. 

Edit:  This post was in reply to a preceding post that is for some reason no longer in the thread.  I'm not sure why it was deleted and I may have missed something because I'm not spending much time here.   Anyway, it's still possibly relevant information so I'll leave my response post intact. 

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.

Thank you japanzaman!

Excellent news. I'll write down the name of this drug. So glad it is working for you, Drummerman! You're going to have to change your sign-off, seems like.   
(Gary
A drummer with a headache)