Dawn,
I should have re-visited this forum before now. The visit I had with the Pain Management Doctor, who is supposedly an expert on Chronic Pain, following this post, was completely fruitless. She never read the well sourced letter that I sent her, explaining my condition, and showing that long-acting opoids are indicated for ATN pain in many cases.
The reason why I started Opiate Therapy group, is due to the fact that, for many ATN patients, opiates are the only thing which soothes the pain. Tegretol, Carbamazipine and Baclofen did nothing to help me. I've tried a Chiropractor, a physical therapist, etc. I've had a bilateral MRI of my TMJ joints to rule that condition out. I've even asked my Psychologist if I could have an emotional attachment to Opiates. She told me that given my profile, and I have seen her for years, that it was highly unlikely. She also told me a story which parallels a story Red Lawhern told in Opiate Therapy group, about a high level executive who had to be on heavy narcotics to control her pain. In Red's story, the woman actually put two sons through college, if I am not mistaken. I could go on and on about the recreational user vs. the role of the D.E.A. on this matter. But, it is what makes doctors look at us like "drug seekers". I am tired chronic pain patients being treated that way.
No compression can be found on the MRI of my brain . . . .but here is the success story . . . .
Since the horrid Pain Management Clinic visit following my post here (afterwards, I was wrecked with female problems and unable to type long paragraphs, working on an Ipad until I could get a new computer charger . . . .weak and out of the loop, I let this post slide for too long).
Meanwhile, I made my way to another pain clinic, one where the only one of two caring Pain Management Nurse Practitioners I have ever known currently works. I got my letter of discharge from my old clinic. I got that appointment. I am so glad that I did.
I told Kim, my old and now new Nurse Practitioner, my horror story from where she used to work. She immediately got out a book and studied the definitions of TN, and found ATN described as "Atypical Facial Pain", in it. I told her that definition is a "pet peeve" of mine, as Atypical Facial Pain is a "wastebasket diagnosis". If the path of pain follows that of the branches of the 5th cranial nerve, then would not the diagnosis be, Atypical Trigeminal Neuralgia? She agreed. So did the doctor who she brought in to meet me. He seemed worldly, but humble, as he shook my hand upon entering the room. I explained my problems to him. Rather than being intimidated by my knowledge on the subject, he seemed to admire that I had studied my condition. Other doctors have cut me off with phrases like, "you can't pay attention to what you read on the internet", etc. After hearing me out, he agreed with the Nurse Practitioner that I needed a referral to a new Neurologist for an x-ray of the "Posterior Fossa" (sp?). I asked if , in laymans terms, this meant, "the back of the head where the cranial nerves are". They said I was right, yes it was. I told them that I had asked this question in my support group. (refer to "MRI of the TN Nerve", an old discussion of mine in which Red and our member, Vesper, go more in-depth with their explanations of research on this particular type of MRI. She calls it "Trigeminal Protocol MRI", and tells me how thinly an MRI machine can slice to view potential compressions - Red may jump in if I did not phrase all of that right, feel free, Red).
Yes, the fact that I need this particular MRI, although phrased differently by different experts I've spoken with, has always seemed like a "no brainer" to me.
The upshot of my last appointment is that the doctor I met with DOES know of the diagnosis "Atypical Trigeminal Neuralgia", and DOES agree that it is not as responsive to the surgeries and drugs which are typically used to treat Type I cases. Based upon my description, he agrees that I am a clear cut case of ATN. He gave me the medications which have opened up my world again. I have had one flair-up now in FOUR DAYS! I was beginnning to think that I would hurt every day for the rest of my life. But, no. Currently, I am maintained on the 3 30 mg Morphine Sulfate daily (I've only been needing two), 2 15 mg. Oxycodone HCL for breakthrough pain, 600 mg.x 3 daily Neurontin (I requested this, but haven't needed to use it), and Cymbalta 90 mg. daily (upon request, should I need it), as well as the 4-5 10 mg. Diazepam prescribed by my psychologist.
This sounds like a lot of medication. But, the worst side-effects I am feeling are a bit of nausea and grogginess, while my body adjusts to the Morphine Sulfate. I will take that over the crushing, searing, throbbing, aching hellilsh pain I was having in my face prior to my prescriptions.
I am surprised that medical staff anywhere would not be allowed to take pain medication, as many doctors have to take something for pain, for one reason or another.
Dawn, I am wondering if you have been seeing a Pain Management Clinic. Neurologists and General Practitioners are hesitant to prescribe opiates. They tend to lump Atypical Trigeminal Neuralgia patients in with regular TN patients, who are more responsive to anti-convulsants and surgery. As another member of this site pointed out to me recently, Fibromyalgia is also a neurological disorder. Yet, doctors seem to have far less inhibitions to prescribing them pain medications.
As ATN patients, we suffer from a rarer form of an already rare disorder. It is not widely understood by most healthcare professionals, nor is it even named correctly in a lot of medical literature, including what is known as the TN bible, "Striking Back", which addresses classic TN symptoms and dismisses ATN as "Atypical Facial Pain". Our diagnosis is new and correct. When the 5th cranial nerve is involved, it is a "Trigeminal Neuralgia". However, the symptoms generally follow the same pattern, as mine which I have described above.
I will copy and paste the letter I sent to my Pain Management Specialist, who did not care, in a following post. It contains the links I discussed. Somewhere, within each link, if they are still valid, you will find that Trigeminal Neuralgia may be treated with opiates. I included many, so they may not be discredited. I can think of one Major Medical Institution right now, that I was shocked and appalled to find, still describes ATN as ATFP. The term ATFP lends itself more towards an indistinct group of symptoms, which may or may not be related to the 5th cranial nerve, thus nullifying it's credibility as a diagnosis, and the patient's prescriptions, and understanding of his/her specific condition is lessened, I feel with this "pass-the-buck-we-don't-know" description of ATN.
I will climb down from my soap box now. Thank you for asking about the subjects I feel most passionate about, Atypical Trigeminal Neuralgia, and the opiate therapy that most of us require to gain any relief from it's constant, agonizing symptoms.
Please excuse any Type-o's made here, or repetition. It is Sunday and there is much work for me to do as a mother of two, around the house, to prepare for the upcoming school week!
As a Christian, on a personal note, I would like to give God the glory. I awaited my prescriptions, alone in the room I had been seen in by the informed Doctor and the compassionate Nurse Practitioner. I already felt comfortable that I had been understood by both, but I jotted down a small prayer, for a prescription to relieve my pain and bring my children's Mom back to more of who she was before ATN struck her down so hard, especially in the light that they have lost their Dad. I also prayed on my Fiance's behalf, for his life has been impacted so hard a) because his future wife suffered so with an invisible illness, which he never doubted for a minute, b) we are still relatively young, and he would like to get out and enjoy life with me, while we can. That day, a prayer was answered, for me.
I only want the same for each and every one of the people here at LTN, some of whom I know well enough to call "extended family", all of whom I already consider brothers and sisters, as they know the same demon I know, the pain which is TN and ATN. It is personal. It is life-changing. It is the big-cahoona of pain syndromes, and what is possibly "the worst pain known to man". It would be my prayer that each of you receive INFORMED AND COMPASSIONATE HEALTH CARE !!! You deserve nothing less both for you, and those who love and need you.
I feel so lucky today. I feel as if I may have found what will get me, once again, moving forward in a life interrupted by this illness.
Your friend,
Stef a/k/a S-Curve :)