It seems that most here are a candidate for, are considering, or have already undergone at least one MVD, Gamma Knife, or some type of surgical correction.
Aside from one other member, who I have not heard much from is the people like me, who have been given no hope of such things by their Neurologists. Mine has referred me to a head pain specialist, whatever that is. Even my Pain Management doc said to me verbatim, "I will be treating your pain for the rest of your life". At the time, I dismissed his comments as a way of collecting $80 or more a month from me for his practice indefinitely. However, after some study on the subject, I am beginning to think that he was speaking the truth.
I began with, and have only had ATN symptoms for years, since '03. It began on my right side, then moved to the left, as well. They became too severe to bear in November of '09, so I sought out a Pain Clinic, with only a suspicion of what my diagnosis would be. Without telling the doctor my suspicion, he diagnosed me that very visit.
Only now am I beginning to have the twinges which lead up to a shock like quality, bilaterally, possibly a pre-cursor of things to come. But, I hope not. It worsens with varying factors, but between doses of pain meds, my pain level can reach as much as a solid 8, I believe. The pain is of a severe crushing pressure, burning, stinging, throbbing quality in both sides of my face. My lower teeth throb. My jaws ache like crazy. My cheeks, tongue and palate, both upper and lower burn. Sometimes, even my lips hurt. Talking is difficult at times. If I eat, I know approx. 20 mins. later, I am going to be in the midst of a major flair up, which is going to make me wish I hadn't. I suppose I should also mention that I have moderate Scoliosis of the cervical spine, one bulging disc and several arthritic ones.
I have bought the book, "Striking Back", but I don't know that it was really written for ATN sufferers. I haven't run across any literature which is.
So . . . . pain management for the remainder of my life, I suppose, is what I am looking at? I wonder if there is anyone else on this site. who has had to wrap their head around this fact, who has any advice for me, as I am told by a credible source that surgery would not only probably not work, but may make my pain worse. If this sounds anything like you, I wonder if you have developed coping skills. I wonder if anyone has been prescribed a long acting medication, so that they do not spend their life clock watching, as I do, between doses of relief.
All of my life, and whenever I began posting to this site, I have been a fairly positive person. But, doctors don't like to deal with people like me, people with chronic pain which is non-fatal. I see a psychiatrist who doesn't understand why I am not being treated with stronger, longer acting pain medications. I asked her if one could maintain a career if treated as such. She replied, "well, I'll tell you that one of my patients is on very strong pain medication and is also the C.E.O. of a fairly large company", which was encouraging. But, because Type I TN seems to be more responsive to anti-convulsants and surgery, I get lumped in with the rest of the TN patients, when my case, as it is with other ATN sufferers, is not the same.
I want my life back so badly. I want to be a better Mom, housekeeper, an employee and to want to do things with my fiance. We are relatively young still, in our late 30s'. I am losing my ummph, and though I try to count my blessings, this feels like a slow march towards darkness.
Has anyone come down to a life of pain management? What has worked for you? Is there any quality of life left to be had? Are there any ATN patients, like me, of you who are well maintained on medications? Or is there a procedure I am overlooking which may help?
Any advice would be much appreciated.
P.S. I would try Yoga, but only for the psychological benefits. If it helped, great, but the pain is so severe, I am pretty sure it is beyond techniques like that. In fact, it is beyond Hydrocodone 10 mg. 6 daily now, which I was almost maintained on for quite awhile, as I am on a higher dosage of meds now. They are the only relief I've found which lasts for any amount of time. Reiki is great, but I cannot walk around with my head glued to my fiance's chest.