Hello friends,
I hope I have sourced this all correctly. It has been quite awhile since I have sourced or penned a collegiate paper. I am a bottom liner, and for the past 2 yrs. approximately, I have been researching the why's, how's and possibilities of how to cure/fix this horrific condition which plagues me, robs my children of their optimal mother, takes away my ability to function as a career woman, limits my abilities to give to others, as I have always been accustomed to in the past, terrifies my father and mother that their only child would be stricken so young with severe, daily chronic pain. . . . . and I cry as I type this, even came between myself and my late husband, and limits my ability to be the wife that my fiance, who has stood by me through this struggle, deserves.
I don't like going out much anymore. I don't see my friends. There are nights when my children need attention and I cannot be there.
THIS IS NOT ME!!! I kept a nice home. I cooked for my family. I held down a steady job. I took on all of life's situations with passion, diligence and tenacity. I simply gave my heart and soul to everything important to me.
Oh, God help me, and what I've become, this internet scouring, face clutching, low mumbling, poor housekeeping, researcher, who relies on the help of her fiance to help raise her daughters, heavily. Not to mention, leaning on her eldest daughter to do things like prepare meals for her youngest daugher, when she is incapacitated with facial pain on the couch with only the strength to search more for answers, that never materialize into anything but speculation, and type to others because speaking to those around her is painful. Someone who, through the years since '03 now has now has sought doctors, a chiropractor, a physical therapist, etc., literally wasting my family's money on meds that do not work and dead end therapies.
However, for awhile, in the summer of '09, I found myself again. I reconnected with my now fiance, whom I have known since my teen years. I helped my late husband's in-laws plan large get-togethers with friends and family. I was the mother on the block who took children, who are friends of my daughters to see sights they may never see in the larger city to my bedroom town. I put together a trampoline and a grill all by myself. I actively sought employment while helping my father care for my ailing Grandmother. I was, essentially, back, an energetic and viable human being. I know now that it was probably all due to something which seems like a curse word to some, the highly stigmatized drug, Methadone.
Wow! Did I say a dirty word?
I didn't crave it. I didn't get "high" off of it. It was substituted for Hydrocodone, which I had been taking for awhile.
I look around me at all of the lives that have been affected by my disorder. They all see the score. Even my Dad, who is firmly against narcotics, and my staunchest advocate in this ongoing battle, agrees that this has been my only successful treatment, thus far. What my Dad does not understand is why I cannot just get what I need from the doctor's we are paying, like in his day. "Just find someone who will prescribe it to you" - direct quote. Easier said than done these days, Dad. The D.E.A. has rules and regulations, and heavily review cases. Doctors lose their licenses for helping people like me, perhaps, they may think. "I'm lucky to have the Oxycodone and Neurontin that my Pain Clinic prescribed, Daddy!", I explain.
Below are some excerpts from online literature I have unearthed on the subject of this long acting drug on Chronic Pain. It has it's drawbacks. I just watched a dear friend of mine with Chronic Back Pain detox and almost die because of an uncaring specialist who cut her off completely for getting a little "emotionally unstable" in her office. My friend is bi-polar. This is another animal. This was the reason for her outburst. I am not naive to the fact that it takes more pain killers to help someone who has been seriously injured if they are being treated with Methadone. I have discussed this fact with several members of this site who currently use this medication reporting little or no side-effects.
Since this blog is a chronicle of my journey. I wonder, if this time next year, I will have found a physician with the compassion to just prescribe me what words already! Yes, Methadone has been shown to have positive results on Chronic and Neuropathic pain. It's not for everyone . . . . .but these are some citings which I have kept. I have lots more that I intend to print and take to my PM Clinic.
Will I have my life back by this time next month??????? My family and I are praying for the doc to put the pen to the paper!
Below are quotes from other websites which address this subject. I believe the full link is included, in case anyone would want to read the cited article in it's entirety:
"Beginning with its synthesis, methadone has been a misunderstood and perhaps underappreciated drug. Its unanticipated analgesic effect, the bizarre theories concerning its development and nomenclature, the controversy surrounding maintenance programs, the complexity of its pharmacokinetics, and the lack of a definitive role in pain control are all chapters in the unique and still unfolding story of methadone."
Methadone: History and Recommendations for Use in Analgesia
Winston M. Gouldin, PharmD; Daniel T. Kennedy, PharmD BCPS; Ralph E. Small, PharmD FCCP FASHP FAPhA
http://www.ampainsoc.org/pub/bulletin/sep00/upda1.htm
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"Methadone, a potent opioid agonist, has many characteristics that make it useful for the treatment of pain when continuous opioid analgesia is indicated. Although available for decades, its use has gained renewed interest due to its low cost and potential activity in neuropathic pain syndromes. Unlike morphine, methadone is a racemic mix; one stereoisomer acts as a NMDA receptor antagonist, the other is a mu-agonist opioid. The NMDA mechanism plays an important role in the prevention of opioid tolerance, potentiation of opioid effects, and efficacy for neuropathic pain syndromes, although this latter impression is largely anecdotal.
Any clinician with a Schedule II DEA license can prescribe methadone for pain; a special license is only required to prescribe methadone for the treatment of addiction. In some jurisdictions, it is necessary to apply the words "for pain" on the prescription."
- "Compared to morphine, methadone is inexpensive, may provide improved analgesia in neuropathic pain and will provide a longer duration of action. Dosing intervals at the start of treatment are q 4-6 hours, and may be increased over time to q 6-12 hours.
- Methadone is not indicated in poorly controlled pain where rapid dose adjustments are needed; do not increase oral methadone more frequently than every 4 days.
- Dose conversion to:from other opioids and methadone is complex; consultation with pain management specialists familiar with methadone use is recommended.
- Patient and family education is essential as they may misinterpret prescription of methadone to mean that their physician believes that they already are an addict."
www.mywhatever.com/cifwriter/library/eperc/fastfact/ff75.htm
Citation for referencing. Fast Facts and Concepts #75 Methadone for the treatment of pain. G Gazelle and PG Fine. September 2002. End-of-Life Physician Education Resource Center www.eperc.mcw.edu
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Treatment
There is no cure for trigeminal neuralgia, but it can be treated with anticonvulsants such as carbamazepine (Tegretol), phenytoin, or gabapentin (Neurontin). Anticonvulsant effects may be potentiated with an adjuvant such as baclofen or clonazepam. Baclofen may also help some patients eat more normally if jaw movement tends to aggravate the symptoms. Pain may be treated long-term with an opioid such as methadone in some patients, but due to the nature of the neuralgia, traditional analgesics typically have negligible effect. Low doses of some antidepressants such as nortriptyline can also be effective in treating neuropathic pain. Surgery may be recommended, either to relieve the pressure on the nerve or to damage it further to prevent the transmission of pain. Surgery is effective in more than 75% of people with classic trigeminal neuralgia.
The nerve can also be damaged to prevent pain signal transmission using a fine beam of radiation, so-called gamma knife. This is used especially for those people who are medically unfit for a long general anaesthetic, or who are taking medications for prevention of blood clotting (e.g., warfarin). Excellent success rates using a cost effective percutaneous surgical procedure known as balloon compression have been reported[3]. This technique has been helpful in treating the elderly for whom surgery may not be an option due to coexisting health conditions. Balloon compression is also the best choice for patients who have ophthalmic nerve pain or have experienced recurrent pain after microvascular decompression (MVD).
Alternative and Complementary health care treatments such as Chiropractics or Acupuncture are sometimes used either in combination with drugs or alone to help manage pain caused by this disorder.
Atypical trigeminal neuralgia is more difficult to treat, both with medications and surgery. Surgery may result in areas of numbness bothersome to the patient and lead occasionally to "anesthesia dolorosa," which is numbness with intense pain. It should, however, be noted that many people do find dramatic relief with minimal side effects from the various surgeries that are available.
Capsaicin can be helpful in short term temporary pain control of trigeminal neuralgia. It works by over stimulating the nerve endings at the site of current trip points on the face.
In one[4] case of trigeminal neuralgia associated with tongue-piercing, the condition resolved after the patients jewellery was removed.
http://www.dalcross.com/trigeminal_neuralgia.php
References
1. Babu R, Murali R. "Arachnoid cyst of the cerebellopontine angle manifesting as contralateral trigeminal neuralgia: case report", Neurosurgery 1991 Jun;28(6):886-7. (PMID 2067614)
2. Burchiel KJ. "A new classification for facial pain", Neurosurgery 2003 Nov;53(5):1164-6; discussion 1166-7. (PMID 14580284)
3. Natarajan, M. "Percutaneous trigeminal ganglion balloon compression: experience in 40 patients", Neurology (Neurological Society of India) 2000; 48(4):330-2. (PMID 11146595)
4. Gazzeri, R., S. Mercuri and M. Galarza. "Atypical Trigeminal Neuralgia Associated With Tongue Piercing", JAMA 2006 October 18;296(15):1840-1. (PMID 17047213 )
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Well, I look up and it's almost three in the morning. I'm going to bed, and I'm going to say prayers, prayers for all of the fine people I have met here on this site, and their loved ones. I have found what I need to maintain. The journey now, is accessing it. I hope each of you find what you need, and the access is readily available.
They always say a journey of a thousand miles begins with a single step. I took that step 8 years ago, when my symptoms presented, and in those 8 years, this is the only things about my particular case of ATN that I have found to be true. It is responsive to opiates combined with anti-convulsants, as I am on now, but vaguely, and it is very responsive to Methadone.
This seem like the last resort and the bottom line.
As always, best of wishes for compassionate and effective care to all.
Stef