Hello everyone,
I’ve been on a self-help TMJ programme for two weeks [jaw, face & body exercises] so it’s early days: no more nerve shocks but different types of pain kicking in as different jaw and facial muscles activated. At the moment it’s 2 steps forward & 2 back. Only time will tell. I am not on anticonvulsants but occasionally need painkillers or heat packs.
For Pat Gascoigne as well as Sara: In my opinion, a tremendous amount of damage is done to patients desperate for hope, by practitioners who label themselves as “holistic” practitioners. Regrettably, quite a lot of pain is also created or made vastly worse by dentists who over-diagnose TMJ out of their own financial self-interest, not appropriately recognizing or crediting the evidence of non-TMJ sources of facial neuropathic pain.
Thus I would think that the number one priority before anybody goes haring off to find a local holistic practitioner would be to get an informed second opinion concerning their diagnosis. A neurologist would be an appropriate practitioner to render that opinion. In my personal though informed opinion, a program of “body exercises” has just about zero chance of significantly helping a facial pain patient over the long run, except very indirectly. Exercise of all types can raise endorphin levels in the blood stream, thus contributing to feelings of general well being.
That being said, Sara there is indeed a record for acupuncture and other techniques of non-traditional medicine. Outcomes have been spotty overall. Some patients have been helped at least temporarily. Others have had incidents of horrendous pain when acupuncture needles were applied directly to TN trigger zones.
The Trigeminal Neuralgia Association (http://www.tna-support.org) hosted a number of sessions on acupuncture in their national bi-annual conferences during the early part of this decade. They once had a lending library of video tapes from those and other sessions. You may want to visit the website and contact the national headquarters by phone at Gainesville FL.
Other non-mainstream therapies are also summarized in “Striking Back: The Trigeminal Neuralgia Handbook”, available through Amazon.com.
Go in Peace and Power,
Red
Dear Red,
I can quite see your fears that desperate people may pay out money to snake oil merchants, however in my case it is far from the truth and I am afraid that you have made several assumptions. My decision to go down the holistic route is an informed choice not influenced in any way by anyone else. I diagnosed my own TMJ, I have not seen a dentist since my last checkup in April. The jaw exercises I do are taken from a book. It makes sense to me that dysfunctional muscles need to be re-trained to function correctly. I like to take charge of my own health as far as possible.
In fact, although not a doctor, I am highly qualified in the health field and have published, and peer-reviewed, research papers. By nature and by training I am used to evaluating evidence. My decision to go down the holistic path first, but not exclusively, was taken in full knowledge of the risks. The many reasons are too long and boring to go into here.
I am fully supported by my GP, who incidentally said that my whole body was out of balance and arranged emergency physiotherapy [free on our wonderful NHS]. I have not abandoned the conventional route and may resort to it eventually. Overall though there have been more gains than pain for me so far by taking a holistic approach, however it is not a road that I would necessarily recommend to anyone else.
I think that we all need to keep an open mind. TN is such a terrible condition, we cope with it as best we can in our different ways.
Sarah,
Hello, and I hope you don’t mind if I add my tuppence, I tried chiropractic, before I had a firm diagnosis of GPN, and while it didn’t help with my cranial pain it sorted out my period pain, tingling in my arms that I had been blaming on the tegretol, and my knees giving out, none of which I had told the practitioner about, so for certain things, I am certain it works, unfortunately for me it didn’t help with my nerve problem.
As for acupuncture it is a mixed bag, it didn’t help my pain, but I have read some really interesting results from permanent implants here:
http://www.associatedcontent.com/article/1292049/permanent_acupuncture_for_parkinsons.html?cat=5
<a href=“http://webcache.googleusercontent.com/search?q=cache:nmnsS8ajz80J:www.implant-acupuncture.co.uk/More%2520about%2520Implant%2520Acupuncture.doc+permanent+acupuncture+parkinsons&cd=6&hl=en&ct=clnk&gl=uk&client=firefox-a” target="_blank">http://webcache.googleusercontent.com/search?q=cache:nmnsS8ajz80J:www.implant-acupuncture.co.uk/More%2520about%2520Implant%2520Acupuncture.doc+permanent+acupuncture+parkinsons&cd=6&hl=en&ct=clnk&gl=uk&client=firefox-a
have a wee read and see what you think, it’s the most promising sounding of the alternative therapies that I’ve come across, because generally ( and I speak only in general terms) with neuralgic pain, the results aren’t great when it comes to anything that;s not surgical or pharmaceutical, there are some things that may give temporary relief, but unfortunately it seems to be one of those conditions that is just blooming awkward to treat.
I hope that is of some help to you though.
Gracie x x x
I would add a thought for Pat in this thread if I may… I respect your approach to medical treatment, as valid for someone with your qualifications and level of awareness. Where I have something of a problem is that your approach is one that very few people in pain are able to exercise on their own behalf. Most patients go to doctors expecting to be guided or told what to do to get better – and expecting that what they are told will reflect a careful and effective standard of care. Standards by their very nature must reflect a consensus on what works and what doesn’t. The so-called “holistic” practitioners simply haven’t been able to develop that consensus. Worse, in my personal view, a lot of them aren’t particularly interested in building a body of medical evidence under peer review. Instead, what we get from such practitioners is a diversionary tactic founded on anecdotes “I tried Doctor X’s gizmo and Viola! It worked for me” with absolutely no experimental controls or oversight concerning the underlying physiological mechanisms that operated – if ANY.
During the 15 years I’ve been supporting face pain patients, I have seen an incredible number of outright scams being worked by practitioners under the rubric of “holistic” medicine. Thus I am candidly skeptical of the effectiveness of procedures, devices, food additives/supplements, herbal preparations, detoxification, acupuncture, laser light therapy, Ayervedic medicine, Homeopathic medicine, Reflexology, Chiropractic, and other branches of so-called “holistic” or “alternative” medical treatment. I have yet to see a single scrap of evidence that any of these techniques has a better record of outcomes in treating nerve pain than placebo effect.
This being said, I am well aware that “some” patients get positive outcomes “some” of the time, with each of these techniques – even though underlying mechanisms of healing are simply unknown. Given the poor record of mainstream medicine in treating neuropathic pain of nearly all types, I respect the desire of patients to try the alternatives. What I generally counsel patients to do, however, is to approach each as an experiment, carefully observing and documenting their own outcomes with the assistance of a mainstream practitioner who is trained to watch for potentially negative or toxic side effects of treatment. For each category of treatment that a patient wishes to experiment with, there are also a few meaningful questions that should be asked of the care provider on the front end: (1) what has been your record of success and in how many patients have you used this technique? (2) how soon (or after how many treatments) should I expect to be able to observe positive results? (3) how long should I expect these results to last? (4) how will we determine if this technique has not been effective and should be discontinued?
I also suggest to patients that they research and carefully read the current consensus statements on various techniques of alternative medicine, at sites such as the US National Institutes of Health.
Just my two Red cents, for whatever they’re worth…
Regards and Best,
Red
HI all.
I have tried acupuncture, chiropractic, myofacial release and physical therapy for my ATN pain before I was formally diagnosed. None of them worked well for me.
However, I have been asked to be an interviewee for Bastyr College in Seattle, WA, a naturalistic and homeopathic school of medicine. I will be interviewed by an ND in front of a class of 100 students and then given a homeopathic remedy to try. I was told that I will not have to go off of any of the prescription meds that i currently take for ATN. In fact, I was encouraged to not change any of my current treatments and that any homeopathic remedy suggested to me would be only an addition to my current regimen.
Homeopathy differs from naturalistic medicine as homeopathy is based on identifying what is wrong with the body and then determining a remedy which would cause the exact same symptoms of the overarching medical condition. By inducing the body to produce the same symptoms the body is in turn able to adapt and heal itself- in theory (I may be butchering the definition so if you’re more curious look it up). From what I understand this is very similar to the way that some vaccines are developed.
I accepted this interview as I am interested in trying to find additions to my current therapies, IN ADDITION TO WESTERN MEDICINE, that may help with ATN pain. I am a cautious person and have been somewhat reluctant to go entirely Western Med vs. Eastern Med routes of treatment. I am giving this a fair shot to see what happens. If the requirement by the doctor that I am seeing was to eliminate Western Med all together I WOULD NOT be doing this interview or seeing a homeopathic or naturalistic doctor.
I will post about my experience back to this discussion or start a new one once I have had my interview and follow-up appointments with the doctor. The ND that I will be interviewed by is Paul Herscu of the New England Naturpathic School of Medicine (if anybody wants to look it up).
I have always tried to have a balance of both forms of medicine in my life but I strongly suggest that if you see a Naturalistic or Homeopathic Doctor that you always ask what their background is in Western Medicine. For me, I would never be comfortable with trying an over-the-counter naturalistic medicine without seeing a medical practitioner of either Western or Eastern Medicine philosophy.
I am a take charge of my health type of person and believe that Western nor Eastern Medicine alone maybe the best route of care. In taking charge of my health the most helpful part of my treatment is to always make sure that all of my doctors speak to each other so that I have a coordinated and vigilant team of people looking out for my health at all times. Take care. Johanna
Joanna, I wish you well with the trial you have volunteered for. I think it can be said that at the least, so long as you maintain your treatment plan in mainstream medicine, it is unlikely that a homeopathic treatment will actively harm you. However, I think it also reasonable to quote from a fact sheet issued by the US Institutes of Health with regard to Homeopathy:
“Most analyses of the research on homeopathy have concluded that there is little evidence to support homeopathy as an effective treatment for any specific condition, and that many of the studies have been flawed. However, there are some individual observational studies, randomized placebo-controlled trials, and laboratory research that report positive effects or unique physical and chemical properties of homeopathic remedies.”
If you care to read in greater breadth from this authoritative source, the link is
http://nccam.nih.gov/health/homeopathy/index.htm
Go in Peace and Power,
Red
Red-
Thanks for the link. I will definitely read it. I have spent considerable time looking into alternative forms of treatment; including homeopathy, naturalistic medicine, chiropractic, accupuncture, etc… I have found very little in means of scientific evidence that shows that any of these treatments can be or would be effective in helping reduce pain in patients with ATN. I have read some blog posts and discussions on this site and the TNA website from patients who have had benefit from additions to there treatments such as fish oil, biofeedback (for relaxation), accupuntcure and a couple more. I do take fish oil and have had extensive training in biofeedback with a psychologist (I also have an anxiety disorder). Relaxation exercises have proved to be very beneficial to me in helping with pain as often times I can relax enough to go to another place in my mind or nowhere for the matter. I work on letting the pain go or calming myself and it works most times and other times not at all (mostly when my pain is really awful).
I will not ever drop my current therapies. If I find that an addition to my therapy such as vitamins, a homepathic remedy or a massage or two helps with my overall health, I am going to pursue it. I am completely aware of the fact that there is no definitive evidence that homeopathic or naturalistic medicine can, alone, help with TN. At least, I have come across a study that says so yet.
In my former job, I have worked in an education/science field (marine resource management and marine mammology) and I do know how to read a scientific paper and have a pretty good background in statistical analysis. I, of course, rely on my docs heavily (GP & neurologist) for help but I feel that I am an equal participant in my health and would never do anything to jeopardize my treatment in Western Medcine.
I do appreciate your point of view as it is one that is based in fact and science. I hope, that homeopathic remedy helps with my pain; with or without scientific evidence. I believe that I have nothing to lose by trying it as I will not be changing any of my current treatment. If I feel that this naturalistic/homeopathic doctor does not have the neccessary background in Western meds and I am uncomfortable I will not take any medicine that is prescribed to me.
Thanks for your help. Best. Johanna
Hi again, Johanna.
Overall, I find your approach to the treatments of alternative medicine to be refreshing and balanced. In the years I’ve been talking with face pain patients, I have often encouraged people to become members of their own treatment teams, and to take responsibility for understanding and managing their treatment program with the assistance of medical professionals. If a doctor cannot work and participate with the patient in that kind of relationship, then in my view, the doctor needs to be retrained and perhaps should be told so.
Sometimes patients have a problem with this kind of responsibility. It has not been all that long since doctors were generally regarded as the high priests (and occasionally priestesses) of a mystical art. Patients assumed that if they questioned the art, they would be left bereft. Fortunately, attitudes have changed a lot in the past 70 years. Likewise I am sometimes at pains to remind folks that medicine still IS an art, despite all the observational science that we try to bring to it. It has only been 200 years or so since surgeons initially qualified by working as apprentices to barbers. Such perspectives may generate a degree of humility at times, that opens new doors to opportunity.
I do wish you well with your homeopathic experiment. Do keep us updated with the outcomes you observe.
Regards, Red