Back again after 2 years of remission.  CH hitting me like clockwork around 9pm each night, lasting 1.5-3hrs.

The cycle started again after I had been put on beta blocker for AFIB - got out of shape again (had been doing triathlons) and strained by right shoulder/back area again.  The strain aggitated prior nerve damage from 20 years ago and here we go again.  

My neurologist told me that a large percentage of CH cycles are precipitated by neck/should/back injuries.  He gave me Axert to take which seems to work pretty good at aborting, although it takes about 30min to start working.  I'm going to try Kudzu also this time.  Would have tired LSA, but not sure it's a good time with heart surgery coming up in Sept.

I've got AFIB cath ablation surgery scheduled for Sept.  After that I plan on getting back in shape again.  Keeping my should and back strong is the best preventative for me.

Chip80 wrote on Jul 11^th, 2008 at 10:38am:

My neurologist told me that a large percentage of CH cycles are precipitated by neck/should/back injuries.

Never heard that one before and ive been in this game for nearly 34 years. :o

welcome back Carl/Chip80.  I had good luck with the kudzu for about 14 months.  Fortunately, when it stopped working for me, verapamil started working for me.  

You can check with your pharmacist about using kudzu and beta blockers.  I ran kudzu and verapmil together past my pharmacist, doc, & neuro - with the printed info in hand on kudzu.

I used a liquid form but the company stopped making it (I think I was the only one that used the liquid at that time).  You can get kudzu quickly on line at both iHerb and Vitacost.

Charlotte

I just went to a chiroprator in the area that my friends rave about.  I've gone to a chiro before, but this guy was amazing.  Using CRA (Contact Reflex Analysis) he identified 3 spots in my spine that were "out" and corrected.  Just sitting here typing, my back feels better than it has in weeks - no more burning or spasms.  He said that when my right shoulder/neck area muscles spasm they pinch the trigeminal nerve and that is triggering the CH.  The muscles in my right upper right shoulder/neck area were knotted hard as rocks when I went in, but not now.

I have to go back to him 2 more times for adjustments.  I hope and pray that this brings me relief, as nothing else seems to work.

In this cycle, I've tried all of the following:

Prednisone - On second course.  No affect, other than making my voice very airy sounding.
Kudzu - No affect.
Oxy - Seems to bring relief while using, CH starts again shortly after tank empties.
Axert - Aborts the attack after about 45min.
Ice - Helps if I get it on my shoulder/back as soon as I notice the burning sensation starting.
Hot shower - While it tends to distract me from the CH pain, I think it's worse after I get out of the shower.
Advil - Nope

I've got to belief that I've got an atypical form of CH.  Since it seems that my attacks are always precipitated by back/shoulder muscle spasms.  

Chiropractors can help a number of musculo/skeletal/structural issues, but CH isn't one of them.


Quote:

He said that when my right shoulder/neck area muscles spasm they pinch the trigeminal nerve and that is triggering the CH.

If he did, indeed, tell you this, run for the hills. Or, keep going back to him if he makes your frame feel better, but if he claims he can cure your CH, I would not return if I were you. How are his techniques supposed to fix a defective hypothalamus?

wrote on Jul 14^th, 2008 at 3:00pm:

Chiropractors can help a number of musculo/skeletal/structural issues, but CH isn't one of them. Quote: He said that when my right shoulder/neck area muscles spasm they pinch the trigeminal nerve and that is triggering the CH. If he did, indeed, tell you this, run for the hills. Or, keep going back to him if he makes your frame feel better, but if he claims he can cure your CH, I would not return if I were you. How are his techniques supposed to fix a defective hypothalamus?

I think, in my case, correcting my biggest trigger (muscle spasms), may be the right thing to do.  Only time will tell.  I can pretty much stay away from my other triggers right now (perfume, booze), but I can't seem to get my back/shouder under control.

I agree that Chiro can't cure a defective hypothalamus, but I do remember reading something recently that not all CH case are accompanied by abnormal hypothalamus.

I'll keep you guys posted and let you know if chiro made a diff with my CHs.

Quote:

I'll keep you guys posted and let you know if chiro made a diff with my CHs.

Please do.

I'm glad you're feeling better but don't spend a lot of time with chiropractors if they say they deal with CH.....Nope.

Charlie

I had 1 neuro who told me that I had Occipital Neuralgia along with Clusters.  And that when I triggered the Occipital Neuralgia, that I showed a greater chance of triggering a cluster at the same time.  So he treated the ON to try and reduce the number of CH I had.  The treatment did not reduced the # of hits, but at least some of my day light hits where not as high a KIP.  It did not touch the night hits at all.

Sorry you are back because of the CH, good to see you though.

Tia

It's been exactly 1 week since I went to my new Chiroprator.
On Monday when I saw him the first time and he adjusted me, I had shadows of CH that evening but no attack.  I've had some soreness in my back and shoulder off and on since last Monday, but NO MORE CHs since then.  I've been extremely careful about staying away from my triggers and hope this cycle has come to and end.

I am not saying that the Chiroprator cured my CH, but he did correct what I believe to be my biggest trigger.  

Be careful not to confuse correlation with causation. What you experienced had way too many variables to be considered even close to a controlled experiment (i.e., really watching your triggers, the fact that it occurs over time, which may mean a natural cessation to your cycle, etc.).

That said, I'm glad you're feeling better.

Just a strange note to add.  My very first cycle ended the same day I started having symptoms related to disks in my neck being out of place.  I had to have 2 replaced, but the pain I experienced (for whatever reason) only started the day after my CH cycle ended.  At least the neck pain could be controlled with Vicodin or percocet, unlike CH.