Thought I would drop a line/update on my latest approach in fighting this thing. If anyone has any questions about my procedure I'll post in great detail.

I'm chronic, and exhausted most of the pain and preventative meds on the market. The nerve block worked for about a year, and the Imitrex Injection, while still effective to this day, has been losing its strength over time. O2 didnt work, but didn't give it a fair shot as I still don't know if I used it correctly.

After my last 6 week taper of dexamethasone (gained 30lbs, acne up the wazoo), my neuro recommended a neurostimulator implant.

I had the procedure two weeks ago. It consisted of the implantation of a battery in the tush, with a neurostimulator running up the spine and feeding into three leads that are placed in the area of the occipital, super orbital and peripheral nerve. The frequencies of the transmitter are controlled by a remote device.

So far, the HA's have been increasingly more frequent day by day. I have yet to see a  kip 10 since the surgery, but I've been at consistent 7s twice a day with a few 4's sprinkled in. I occasionally abort a few with the timely chugging of redbull but for the most part I'm singing "why me's" without Imitrex.

IF INTERESTED IN SURGERY: These "surgeries" are a form of pain management and not a cure. I have been told that there have been successful surgeries for CH. If you are interested going this route, it is important that you discuss and investigate the placement of the leads (wires placed in the head that are supposed to stimulate the nerve to reduce pain) before they do the actual implant.

The problem with my surgery, as with other procedures out there, is that they cannot surgically implant the leads directly behind the eye. By strategy, surgeons place the leads close to the eye (by the sideburn) and hope that the frequencies of the stimulator will reach the eye to alleviate most of the pain.

On full blast, the frequencies have extended close to the eye, and reduced some pain but not to the point I was hoping for. The pain has still been unbearable, and I can't be without Imitrex.

This type of procedure is much more successful for typical migraines as leads can be placed at the location of pain. Maybe there's something better out there for us.

Oddly enough, I have yet to go the clusterbuster route. I used it recreationally in my teens (15 years ago) but haven't given it a try since my first CH. Moving on to plan Z…

Hope everyone has a pain free evening.

What Bill said!

Thank you Batch.

I have read your threads in the past, and did follow up with my neuro regarding this approach. I don't remember what my Vitamin D3 level was, but recall that that both calcium and phosphate levels were ok. My testing ended there, but continued the regimen at 10,000 IU (with magnesium, K, and Omega 3), as I noticed the rebound HA's were not as severe while on the regimen. The frequency and duration of each HA, however, was the same as before. I kept a log, but could never find a dose that was most beneficial.

One thing I know I never inquried about was my parathyroid hormone level. That could be it.

I really appreciate your help with this. Thanks again.

Evan