So I had my second electro shock treatment on Monday, the first one was a month back and seemed to really help but my SUNCT was being mellow at the time and my pain level was low but for three weeks after I felt the best I had in two years. Well this time I was in a lot of pain the beast was really kicking my ass the doctor said he could tell something else was going on since all my reactions to the shocks where far different, well that turned out to be a bad thing the next day the pain was at about half and I figure this is great maybe tomorrow it will be even better, wrong it was way worse and the following couple days fell in line and I got my ass kicked good but today it has finally dropped back off a bit and is tolerable. Here is what he had to say about this second treatment and my lack of responding:
I am sorry that you are back in a pain flare.

What we seem to have learned so far is that:

1) TMS may be able to stave off your SUNCT flare if caught early in the process.  This is consistent with the experience of using TMS for migraine headache.  Furthermore, in that early prodrome state, rTMS to the left motor cortex immediately replicates the SUNCT pain sensation.
rTMS to the prefrontal cortices, the right motor cortex, and over the greater occipital nerves on each side have no immediately apparent effect, although it is possible that they contribute to a treatment effect in a way that we cannot readily observe.

2) Once several days into a SUNCT flare, a single session of rTMS to those same regions described above provided only a day or so of reprieve.  Furthermore your brain seemed to be in a different physicological state in which the left motor cortex stimulation no longer seemed to elicit the SUNCT pain pattern.  It is consistent with the TMS experience with most conditions to which it has been applied that once someone is in an exacerbation of that condition, it is tougher to get them out of the episode than it is to prevent them from going in to that episode.

As you know, there is no research literature that can tell us with certainty what to do next. Implanted occipital nerve stimulation appears to be a promising, although imperfect approach to SUNCT pain.
Furthermore, I am impressed with the way the left motor cortex stimulation reproduced the SUNCT pain pattern when you were in the early prodrome of a flare last month, and the lack of detectable change in response to stimulation over the occipital nerves.  It could be that implanted motor cortex stimulation would provide relief.
Prior to doing this however, exploring the likely effects of implanted stimulation by using a series (perhaps 3-5) TMS treatments might be helpful.

Most, if not all disorders that may be successfully treated with TMS require multiple sessions.  When the treatments go well, these multiple sessions produce effects much greater than single sessions can elicit.

Accordingly, my best recommendation at this time is to try a series of
3-5 sessions on consecutive days.  I realize that this is a significant decision for you, and further recommend that you speak with Dr. Wilcosky about his thoughts on the matter, and options that he sees.  Of course, I would be glad to discuss with him directly.

Please let me know how I can best assist as your decision process progresses.
So he wants to hit me three days in a row at $315 a pop that my insurance will not cover and I have told him over and over that I really cannot afford this but if it fixes me it will be worth it. One question I had for him and asked the first time was do they make a device that can be turned off since I go into remission a year at a time and would not want to be getting shocked while not in pain, he told me he would find out. Well I asked again today and here is his reply:
I don't know the answer to your excellent question.
Best to get a consultation from Stanford's faculty expert on implanted neurostimualtion devices, Jaimie Henderson, MD.

Would you like me to send him information about you and request that he do a consultation?

So now he wants me to go see yet another friggen doctor that will charge me like $300 for a five minute meeting, do these guys talk to each other and when they find someone who will pay they pass them around until there broke or what? I responded and reminded him he had told me he would find out for me and that I really did not want to spend money on yet another doctor. On top of all this my girlfriend of a year and a half or so last night tells me the first time she met my mother one of the first things my mom asks her is, “so is Matt still a hypochondriac” what the hell my own mother thinks I am making this up? Oh this so sucks makes me wonder why I even friggen try, man that really hurts my own mom thinks I would make something like this up. For the record in my life I have always avoided going to doctors for the most part and have been very healthy so I have no idea where she would come up with this from but it sucks.

Well said Lance...eloquently perfect.

Lynae'

Just finished up the three day in a row treatment they wanted me to do and dam am I glad that is done. I really hold no hope that this will end my cycle but if I did not try I would always wonder so I went through with it even if it was expensive and my insurance would not help. Here is what the chair of pain looks like.