Good evening!

Please understand that I am a newbie.  Please understand that I haven't tried half of the meds or methods that most of the experienced CHers have.  Please understand that I know what works for one person may not work for another.

OK........having said all of that................

I would like to "share" with you my recent experience.

I have had attacks for the past 5 years..............on and off...........episodal................I had no idea what was happening to me.  I thought I was having problems with my right eye. About 8 months ago, I became chronic..........attacks 2 - 4 times per night; every night.   Last November (4 months ago), I was diagnosed.  Great!  I had a name for my 'beast'.

My neuro put me on Verapamil.  It was able to control my attacks...........minimize them.  It did not remove them totally, but the attacks were less severe, and less often.  It was SUCH a relief.

However, I have low blood pressure to being with.  The verapamil put me in a tailspin.  I was weak; sick; dizzy.  It was hard to judge whether I was having a reaction (Type 1 diabetic) or low blood pressure.  My neuro told me I would adjust to the medication, in time.

It didn't happen.  After 3 months, I had enough.  I had to get off Verapamil.  However, most of the other meds were NOT recommended for Type 1's. (lithium, etc............too much of a worry about renal problems).

Of course, the minute I started to reduce the verapamil, my attacks became more frequent, and more severe.  SIGH.

Oxygen is a GREAT abortive.  However............like all of us...........I would prefer a preventative.

For some reason, I decided to try CoQ10.  The less verapamil I took, the more CoQ10 I took.

Right now, I have been off verapamil for 4 weeks.  I am taking CoQ10 (60 mg) breakfast, lunch and dinner.  I take 150 mg at bedtime...................and 150 mg. at 1:00 a.m.  (Note:  I always get up at 1:00 to test my sugars anyways, so taking a pill is no big deal).

So far, my attacks have been less frequent, and less severe, than when I was on the verapamil.  They have not subsided completely, but I am not complaining.  I appreciate that, perhaps, I could obtain the same results without taking quite so much CoQ10.............and, in time, I will try that............but right now I am just enjoying the results.  This is a better solution (FOR ME) than verapamil; without the nasty side effects.

After reading various posts (especially the three page dissertation  and discussion about serotonin), I am going to start taking Ginkgo...........and increasing my exercise from 45 minutes/day to 1.5 hours/day.  My goal is to find a preventative that is 100% effective.  However, at the moment, I cannot complain (compared to what I had been suffering for the past 5 years or so, without explanation or any type of relief).

This may not help anyone else.  Perhaps I am a freak.  However, if my experience could give one other person some relief?

Comments; suggestions and/or explanations are greatly appreciated.

Debbie

Several years ago I found one report using Q10 to control CH. The effective dose was so high that it would have cost as much, or more, than the other effective meds to use it.

Have never seen another report in the medical literature.

BUT, if you are getting good results at this modest dosing--very good!
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After posting this I was curious about its use with CH and explored PubMed for more current reportgs. Zero hits on CH but small group of recent articles on its use with migraine--with some positive results.

Yes, research has described an 'energy deficit' in the cells of people with migraine and CH ...  and at least for migraneurs,  CoQ10 seems to help.  I would not be surprised if it also helps some with clusters.  CoQ10 levels are lowered by taking some beta-blockers and statin drugs - this is one area where they might be especially useful. Combining CoQ10 with statins does not lower their effectiveness, but it can prevent some negative side effects.    

As Bob said, it can be pricey - although I have seen prices drop in the past 5 years, and buying it at a warehouse club is much less than most retail places.

A good summary, theorizing and usage of CoQ10 from Mayo.

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