Was just wondering if anyone has had any success with alternative therapies and what they were (even just a reduction in spasms or pain)?
There doesn't seem to be a homeopath in my area (I don't believe off the shelf homeopathic remedies do the job half as well as a good homeopath) :( Has homeopathy worked for anyone?
Also, what else have people tried such as TENS machines, acupuncture, naturopaths or medical herbalists etc as those are all available to me at a cost. What about vitamins and supplements etc (have started B12)?
Porcelina, be VERY careful concerning TENS machines. Not only do they not seem to work for facial pain, but there have been reports of patients going into pain crisis because of the deep stimulation they seem to produce on the facial nerve.
There is a large section in the book "Striking Back -- The Trigeminal Neuralgia Handbook" that deals with alternative medicine and its remedies. Acupuncture has helped a few patients, and there was once quite a bit of interest in B12, though the latter has pretty much petered out with the introduction of Tegretol. Most vitamins won't hurt you, and people in pain do tend to get dehydrated and vitamin-deficient due to medication side effects. But I've seen no consistent evidence that any specific vitamin (other than those used to avoid deficiencies caused by the meds) will help you either.
I have never heard of a case in which naturopathic medicine or homeopathy has been successful in helping with trigeminal pain.
I have had great success with alternative therapies. I have and continue to use chiropractic, massage, cranial sacral, special biteplates and Reiki. I did use accupuncture but had marginal success. I learned how to give Reiki to myself and I have found that that has greatly assisted me in destressing and calming down when and if I get pain. By relaxing, my muscles, in the neck and shoulder area in particular, remained relaxed and this helped greatly in keeping things under control.
The bite plates we also extremely helpful in reducing the severity of the pain. I wear this crazy looking bite plates that help to keep my jaw in a position that maximizes the strength of my body.
My chiro is always there for me and has been my mainstay throughout the entire time. I know that as soon as I start to sense anything my C1 and C2 vertabrae are starting to get out of allignment. Usually a trip to correct that gets me out of trouble and keeps me pain free. The relaxing effects of Reiki helped to sustain the benefits of the chiro adjustment.
I had some complications with one of the drugs I was prescribed and I always felt like a zombie on the others. With the use of the alternative therapies I have been drug free for over 5 years. I am not sure that everyone will get the same benefits as I have had. I have been able to identify specific triggers t and I think I had TMJ issues that were impacting the Trigeminal Nerve. I suspected and found that my pain was structural in nature and pursued that line of treatment to help me get to where I am.
I hope that you are as successful in your pursuit of relief and I wish you luck. Keep smiling and keep trying.
Like Red, I have never read of homeopathic remedies to have lasting pain relief for TN. I have talked to a few people who have had small successes (like 1 pain free day), but nothing major. I have also found that the advocates of these remedies tend to be anti Western medicine, which can make them biased. I have not yet tried acupuncture, but am open to it though.
I asked my doctor about the TENS unit, but he said not to waste my money. I'm not sure if that's because my pain is mainly in my teeth. I have read that you're not supposed to use it on your face, but then I have read about tons of people who use it on their face, so I'm not sure.
I believe that it's important to have a good diet, and ensure you're getting the nutrition you need, and minimizing sugars and saturated fats. This is true for all people; it doesn't affect your TN or lessen your pain, but people with chronic pain and chronic stress will benefit from being healthy overall.
I believe that exercise is also very important to your overall health. It's something I'm still working on myself. Now that the days are longer, I am taking a 1-2 mile walk every evening. I plan to incorporate some strength training --- it's about finding the right things for each person, as we all have different triggers and certainly don't want to cause ourselves extra pain.
The only supplement I've taken long term is fiber -- Metamcuil. I was taking this for years before the ATN. It's so hard to get soluble fiber, even if you have a healthy diet, and I like to keep my digestive system happy. However, my partner takes tons of vitamins and supplements -- he recently convinced me to take glucosamine for my jaw, particularly DONA.
I hope you find something that works for you. It's always an ongoing process...
I tried acupuncture, it helped with stress and sinus pain (which affected my eyes), but after my first treatment specific for eye pain, my eyes got worse!! So no more of that. I exercise, eat healthy, take vitamins, and try to stay busy through the pain. I have found that massage helps, meditation too. I just had my first hypnotherapy session and it seemed to help my eyes. Anything to relax the nerves in my eyes.
I use CranioSacral therapy as my first line of defense, I used acupuncture for my jaw pain. The acupuncture helped with the pain for awhile after the treatment but I wasn't able to get on a regular schedule. The craniosacral I believe has helped me the most. It has been a slow but steady process. I have not had any major lightning attacks for several months. Whatever treatment you choose I would recommend you research it thoroughly along with researching the doctor or therapist.
Good Luck and I hope you can get your pain under control!
Thanks everyone :) A lot of alternative practitioners over here aren't anti western medicine at all which is really good to find and will link therapies in with whatever your doctor has you on (being a registered nurse myself I certainly wouldn't put all my eggs in one basket with alternative therapy but then you can almost say the same for western medicine too, though I would take western medicine as the primary treatment with alternative to back it up a little).
Okay well TENS is out then! :) I have only ever had acupuncture for a physical injury before which worked really well however I have no idea what it's like for things that aren't an injury. Have used an osteopath before which I guess is along the lines of craniosacral therapy but I have been told before that sort of thing doesn't work for TN so who knows.
I agree with staying busy, I have preschoolers! My main thing for therapy is knitting however got told off today for doing it too much though I tried to explain that concentrating on a complex pattern distracts me from the horrible headache pain.
No doubt alternative therapies are a bit of a controversial issue! :)
since i have only had my diagnosis since last saturday and the major episodes since the beginning of february this is less about my TN.
I see a chiropractor almost every week and have for going on 5 years. I have fibromyalgia and am very hesitant to take meds during the day for it (though baclofen did help while i was on it), I am also very chemically sensitive. I dont know if it helps with the fibro or with the TN but when i am in pain I do not sit or lay in ways that are best for my spine and hips and when i have an acute episode of either i seem to throw my hips out of alignment (and close to out of joint) which brings a whole new level of constant pain to my life. My TN pain spikes cause Fibro pain spikes. I have to have my hips put back almost every week, this is the only painful adjustment i have done, my chiro works very hard to not do anything that will make my conditions worse and does research constantly to try and help with my list of issues. She is a network chiropractor not the kind that "cracks" things, and uses medium presure touch to do adjustments most of the time. Having my hips realigned and my body adjusted doesnt take care of the pain from either fibro or TN it just removes other pains, that make coping easier and my quality of life better. Quality of life is generally what I am striving for, I have never had a day where my medical issues werent an issue and where there was zero pain but a balance that allows me to get out and do things both necessary and for fun is the aim.
I called her on monday and let her know what i had been diagnosed with and she was well read on it by the time i saw her yesterday, she also saw me alone (she sees three patients at a time normally), allowed me to shut the door and turn off her music and sat and asked about my triggers (which I am still working out besides sound, hot/cold and touch in a few places). She is actually very concerned because I already have sensory integration disorder and have issues with sound touch and smell (she had to turn off her fountains in her office while I was there for years and then last year she just got rid of them).
My Chiro is against western medicine, which I have issues with her regarding, however in my case specifically she has been about finding me help (getting me better or relieving the pain) by any means.... she is more concerned about me than her own beliefs which is partially why I still see her.
Anecdotally, a few weeks ago when i didnt show up for my appointment because I was in to much pain to drive and couldnt get the pain to stop she called me and offered to send her receptionist to come get me (its in a different city than I live in, about a 20 minute drive each way), I refused the offer because my pain made me not want to go anywhere, but that is how concerned she is.
I LOVE acupuncture — it really helped while I was trying to get on the right type/dosage of meds. I don't think it would help me long term but it was great to get me through a 24 hr period or so. I found someone in my area that specializes in nerve pain so she was already very familiar with TN.
My TN2 which was mild, constant tingling in tooth was helped greatly by a hand held device which did something to the magnetic fields around my tooth. Sounds crazy yet the tingling in the tooth is 90% better.
I never knew the name, but i recommended the physcio who used the devise on me to my colleague who suffers from TN2 caused by dental treatment. She has had poor results as the Physcio told her to come off her meds and she suffered a lot and had to go back on them, the strange thing is Im not sure if the physcio used the devise or used some other method, from what my colleague was saying she was taking her back in time before the pain began, which she tried on me and did not work. I hope to catch up with her soon and hope to find out more.
Most of the work with Vitamin B12 pretty much went dormant after the discovery that Tegretol was an effective agent in managing TN, in the 1950s. Those interested in reading of patient efforts to investigate B12 may want to become members of the Facial Pain Association (http://www.fpa-support.org), so you can search their knowledge base. My impression from 18 years of reading in this literature is that no clear benefit has yet been demonstrated for facial pain, under conditions in which placebo effect was controlled for. The same is also true of the "remedies" of homeopathy.
Sorry I can't offer something miraculous, but I'm afraid it just isn't out there...
I am going to try to make this short, although I could never have imagined something could be so complicated both physically, mentally and emotionally. Hopefully soon I will have time to sit down and write out my whole complex experience.
I went to a physical therapist who does Mckenzie method. He didn't touch me or move me. I would not have been able to stand it. He showed me how to do a neck exercise. (Let me say, I did not think the problem could be in my neck, I had not noticed any neck pain or problems before my first TN attack, but my husband talked me into trying it). The physical therapist said he would know in two appointments if he could help me or not. And he wouldn't have me do anything that caused pain. I don't think he even charged me for the first appointment, he said to wait and see if he could help me. After my first appointment I was so much better I couldn't believe it. After my second appointment I was 80% better and no longer 24/7 pain. I think it was by the third week my trigger points were gone and my kids could touch and kiss my face. That was a big day at our house! Whenever I would feel my nerve start to fire, I would do my exercises and the pain would go away. I have been off of my trileptal and other crappy meds I was taking for about six weeks now. My Trigeminal Neuralgia pain has been gone for two months. It takes between 4 to 6 weeks of doing the exercises. It only cost me $50 per appointment (my insurance does not cover it) compared to the $450 for my first visit with the Neurologist. I think my neurologist would say I am just in remission. But I could see a direct correlation between doing the exercises and the pain going away. My husband and I did a lot of research first, reading, watching youtube videos, talking to doctors and physical therapists. I would definitely recommend researching a lot. If prayer is something you believe in I would suggest that too. I searched a lot on here. I found a few other people in this group who I think did the same or similar thing as I did, and I tried to contact them, with no answer. To me that said they must be better and getting on with their lives. Why else would you not come to this site if you were still having pain? When my pain was 24/7, I was here almost that much. Anyway, that was kinda long but I get real excited that maybe this might work for someone else and they could be pulled up out of that deep dark hole that evokes such fear and dread when I think of it.
Hi: I do acupuncture at least twice a month…it does not last nor really help too effectively for Type1 TN pain, but it def grounds me, helps with my anxiety and dizziness and leaves me feeling euphoric for days (even during intense type1 attacks ). Also I do get the occasional Type2 attacks such as top of head or ear and it eliminates those in their tracks.
My Type1 attacks are such a beast of its own the only thing I ever found to counter it was a high dose of tregretol which left me as useless non-functioning heap of a man which made me suicidal so…they won’t let e touch that stuff even if I promised to wear a straight jacket in a padded room…so net (for me realizing we are all unique) the acupuncture is great for a “natural high” or type2 but only provides a few hrs of relief for type1 and oh by the way a few sessions we found some “hot spots” aka massive TN trigger points that must be avoided unless you want to wrestle with a massive intense battle of ongoing TN attacks for 48-72hrs .,just brutal
Can it be that your physical therapist is working with you on a trigger points and muscles that are pressing on nerves. In one week I seem to encounter couple of people with nerve problem that physical therapy helped so much, so it's making me intrigued. But i am trying to understand and please answer to the degree that you know or what your own therapist informed you about it... what is he doing actually (1 relieving trigger points? or (2 relieving the pressure of the muscles cramps from your nerves? or (3 maybe manipulate a vessel compression to get distant from the surface of the trigeminal nerve in the brain steam?