Hey everyone.  I don't post often, but this message board has been invaluable to me over the years, and I thought I might be able to give back. I've had CH for 20 years, and it took me a long time to get them under control.  I've had success over the years with oxygen, Verapamil, and even the anti-inflamitory regimen.  All of those things are great at helping me deal when my cycle comes. However, I am starting to suspect that something I started for a different problem may be preventing the episodes completely.  A year ago I started Cranial Electrotherapy Stimulation (CES) at the advice of my psychiatrist as a treatment for mild depression and insomnia (I've noticed the insomnia is much worse when I'm in my cycle, and not just because of the hits).  I thought this was preferable to taking antidepressants if it worked, so I gave it a shot.

The first bit of good news is that it works for both of those other problems.  I no longer wake up at 3AM wide awake. However I have also been PF since I started, and I'm starting to think that there is a connection between the CES and my CH being in remission. Hear me out...

First, it is widely suspected that the hypothalamus is involved in CH, and CES it thought to work by stimulating the hypothalamus region (I haven't posted enough to post links, but you can look up Cranial electrotherapy stimulation on wikipedia). That could be a coincidence, but I've also found a research paper
which is a case study of a severe CH sufferer who was helped by hypothalamic electrical stimulation via implanted electrodes (again, can't post the link, but you can google "CES cluster headache" and it is the second link).  I know that is scant evidence, and obviously it is a little early to draw any conclusions, but I am curious if any other CH sufferers have also used CES, and if it had any affect on their cycles.

If its working for you that is awesome.  Please keep us posted on your results.  It could be helpful going forward.

How is this different from the occipital nerve stimulation via implants that has been tested? Sounds promising. blessings. lance

My understanding is that occipital nerve stimulation is a pretty serious last resort type treatment, since it requires surgery.  What I am talking about only requires that you wear headphone-like electrodes on your earlobe for 20 minutes a day. 

As an aside I have had an occidental nerve block which was recommended to me by a pain specialist I saw a few years back.  It is a shot of local anesthetic and a steroid at the base of the skull. Insurance covered it as a procedure to treat occipital nuralgia which is the medical term for the tightness in the neck that can accompany cycles. That shot hurt LIKE HELL, but the cycle went away completely.  Would highly recommend it based on my one experience though I've read that some people have little or no response.