There was what I will always think of as my own personal "dark moment".
My fiance and I were house and dog sitting for the parents of my late husband whilst watching the movie "Pirates of the Caribbean". I remember trying to concentrate on the movie that it seemed, everyone in the world had seen except for myself. The pain in my teeth and gums, that day, was not allowing me to do so. I remember, I kept eyeballing the teeth and oral areas of the characters in the movie, and some of the faces of the non-human-like characters, and thinking to myself "my face feels like that creatures face looks", or "I wonder if Jack Sparrow's teeth hurt as much as mine, and if so, how is he able to concentrate on anything but that fact". I felt gruesome, both inside and out. My entire lower face was an aching, throbbing, mess of different stimuli consisting of jabs, pinching and all sorts of pressure to go along with these sensations. It seemed a horrid nightmare, but it was one I had lived with for so long by then. This was the winter of 2009. My first symptoms had presented
When the movie was over, with my children safely out of earshot as they were traveling back home with my mother and father in-law, I began to sob and perched on the chair beside my fiance. It was then that the rambling gush came out of me . . . ."I -I - I want-to-die! I can't go on living like this. I'm in such pain everyday", I said (or something like that. I was too upset to remember my exact words). I continued," You are better off without me. I'm broken. My kids are better off without me in their lives. They need to be with someone else . . .someone who deserves them and can be a good parent!!! I DON'T WANT THEM TO SEE ME LIKE THIS ANYMORE!!! THEY DESERVE BETTER! YOU DESERVE BETTER! " I kept rambling on for awhile until my face, nose and eyes were all drippy.
My fiance tried to comfort me. I cannot even remember how now. What he was saying was really of no consequence. I felt I had just unearthed my darkest of secrets, that I didn't want to exist inside this pain any longer. Sharing a body with it was more than I could bare.
I won't name names here, but whenever my mother and father-in-law came home, it became known that I was having a crisis, and an "angel", as I will call them armed me with seven Hydrocodones, which they really could not spare. (I did have a script for 1 a day, at that point, from a small town doctor who didn't believe I really had anything wrong with me. His office staff all encouraged me in whispers one day, previously, to seek other help as he didn't seem to be taking me seriously, even for what my diagnosis was at the time, which was TMJ. My point is that I did have to pay these back, because most chronic pain patients need their entire prescription, and this person is no exception. I thank God sometimes for the windfall of relief they provided which would allow me to get my head together and do what I am about to tell you. Pain had taken away my ability to even think straight. So, I treated these like god and used them sparingly).
Armed with these seven Hydrocodones, and the backing of my earthly father, I managed to make the phone calls (after a long time for searching for answers many different places ie. chiropractic, psychotherapy, diet, exercise, other medications) to the pain clinic where one of my friends, who is a back patient had been going for some time, one with a particularly compassionate nurse practitioner. COMPASSION! Sounded good to me!
I did a lot of soul and web searching those two weeks while I awaited my first appointment. On one of those nights, I unearthed for the first time, the diagnosis, Atypical Trigeminal Neuralgia. I felt as if I were reading a description of my pain word for word. I phoned both of my parents, told them to go to their computer and READ! I cried as I exclaimed, "THAT'S ME!" My symptoms had really never fully seemed to be that of a classic TMJ patient. I had tried to believe it for years, since my General Practitioner diagnosed me with TMJ in 2003, that it was what ailed me. He had treated it with Diazepam. I had kept working. The Diazepam had been providing just enough relief for me to get by. However, the pain had gotten too bad. It simply no longer worked. The pain ruled my life.
I was honest about everything I had tried when I went to go see my first Pain Management Specialist for the first time. I had to see the doctor before I could request to see the Nurse Practitioner I had heard raved about. I told him that I had tried opiates for my condition, the ones I had tried and that they were the only things which seemed to help me. By this time, I had also tried a slew of other treatments, TENS unit included, and countless other types of meds, each time believing it may help. Diazepam and Hydrocodone had worked the best of anything I had ever been given.
I didn't tell the Pain Management Physician that I thought I had Atypical Trigeminal Neuralgia whenever he told me that it is what he suspected was my correct diagnosis. I was rather opoid naive, at the time, so the prescription of 3 5 mg. Hydrocodone per day, at the time, seemed almost miraculous, to me. He also gave me something called Gabapentin (Neurontin). I couldn't tell (and still cannot tell to this day) to what degree it helps, but I still take it to this day.
Now, I've been in Pain Management for around three years. Opiates have been the only thing which have brought relief enough to speak of. I've read books. My newest trial is one of Acupuncture. I am always looking for an alternative, as I am aware that opiates can be an upwards, spiraling staircase.
The one I have tried which brought the best relief with the least side-effects happened to be Methadone, which has a long half-life, seems to be tolerated well by my system, and in essence, at the right dosages, gives me my "normal life" back.
Luckily, I have found another Pain Management doctor willing to prescribe it to me. I am so glad to be titrating down from MS Contin and up on Methadone. That is the way they have to handle it, I am told. MS Contin has such horrible side-effects, for me, that it was all but intolerable. If it weren't for the minimal relief it was providing at a median dose, I would have stopped this drug. It is like poison to my system. But, my poison was keeping me from pulling my hair out with Atypical Trigeminal Neuralgia pain.
My story with this illness is so long. I cannot sum it up here. I have also typed this at breakneck speed, as I am supposed to be watching a movie with my now "husband", who was with me on my "dark day", the day I wished for death above life. Please forgive bad grammar and omissions in the above. There are many gaps here, as I cannot begin to tell you the impact that Atypical Trigeminal Neuralgia has had on my life and on the lives of those who need and care about me.
Atypical Trigeminal Neuralgia is my formal diagnosis from a Neurologist who specializes in "Head and Face Pain". By the time I saw her, I had already tried all of the treatments she offered. I will be leaving my Pain Management to those who specialize in Pain Management.
I look forward to the coming month, whenever the change from MS Contin to Methadone is realized for me. I think that this will bring about positive changes in my life and in the lives of those who I stated both "need and care" about me.
As an only Grandchild on both sides, two aging and ailing parents and two girls who need me to be more than good, but organized and on top of things, I am excited that I may finally be getting the treatment which has historically worked the best for me.
One day, I hope to watch "Pirates of the Caribbean", and actually pay attention this time. Hopefully, research and hope for my illness will prevail before Methadone quits working (my system tolerates it, or such), or some unfeeling doctor denies me of what helps. ATN has no magic bullet cure. But, hopefully, my life holds no more "dark moments", such as described above, one in which I would, in all honesty, choose death over life with the agony of Atypical Trigeminal Neuralgia.