Sunday, January 19, 2014
A little bit about Trigeminal Neuralgia, and Peripheral Trauma Nerve Injury
I thought I'd share this link over Trigeminal Neuralgia, and also over Peripheral (Trauma) Nerve Injury Induced Dystonia. Every now and then I receive questions about it, since I primarily talk about embouchure dystonia. I'll come back and explain a little bit more in the near future. This still is an area I want to discuss on my blog, especially about my facial nerve damage.
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I'm interested in your progress using acupuncture. I have lingual dystonia (of the tongue) and has proven to be extremely intractable. I've tried many, many therapies and modalities without much progress but am convinced we are close to a cure. As an aside, I have found that Ambien helps enormously, even a half dose. Perhaps Ambien can be used as an adjunct while we try to retrain our brains.
ReplyDeleteHi David! It's great to hear from you. I'm glad to hear about Ambien helping with your lingual dystonia. I am always interested in hearing about other people's dystonia. So far acupuncture has helped relieve the tension in my face, as well it's somehow activated (not sure what the proper terminology is here) some changes in the nerves in my face.
DeleteI have peripheral neuropathy which triggered embouchure dystonia. As a French horn player I got hit with a terrible 3. At first I was diagnosed with a muscle tear in my upper lip, most likely due to extreme pressure against my upper lip combined with playing, or due to the crooked tooth I put pressure up against. Then after taking time off to heal, I was still having problems with spasms, lost full control of my playing, and I felt a lump in my upper lip which is supposidly scar tissue. My second diagnosis showed nerve damage via nerve conduction tests (I think that's the right term?) ...there was sensitivity specifically around the upper lip, and as a result having dystonic symptoms.
I retrained myself for a long time to reduce the dystonic movements by adjusting my playing in many small subtle ways. Really I was just listening to my body and being highly aware of all areas of my playing and how it affected me I was able to reduce my spasms a ton and regain quite a bit of my playing abilities. Yet within the last 7 months, I recently started having a huge amount of pain in my face (all over), and started to hurt while eating, talking, singing, playing, it became a chronic pain that came on very quickly.
At first I thought it was TMJ or a dental problem, so I went and got looked at again, and they said it was neither, that it was my nerves in my face. The pain was most intense in my cheeks. So as an option, they suggested acupuncture to help.
Like I stated in my other posts that after my first acupuncture session it set off a ton of sore spots all around my face. The sore spots moved from one place to another. My acupuncturist has been doing work on my facial nerve. We combined that with two other herbal medications (which are quite intense but help tremendously), cupping, facial massage, a pain reliever/liquid, electric stimulation, and just recently a bit of moxi. After the first 4 or 5 sessions the pain that use to be triggered so easily in my face has gone down tremendously, and even the way my muscles move in my lower lip are different. When I play the spasms are no longer triggered in the same spots, or same way I play....I don't know how to describe it. It's different...it feels different. Yet, most importantly, I noticed, that feeling you get when a spasm is just about to go off is no longer within my awareness.
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DeleteBefore, even when I could tame my spasms, I still could feel the initial contraction suppressed deep beneath the surface, and I could do a great job at avoiding it, but now, I can't even feel the contractions beneath the surface. I don't know if this makes any sense. It's hard to describe what I feel. The spasms still happen in different areas, but they feel less "rooted" if that makes sense. Less ingrained into my movements. Overall the tension in my face has gone down even more. It's hard to show the progress in my playing because I haven't been playing very much at all. I'm only allowed to 15 minutes a week or 35 minutes a week. All I can say is my face feels a lot more normal than it has in a very long time.
DeleteI'm only on my 8th or 9th acupuncture session(?), but I plan on receiving acupuncture consistently and for a very long time, otherwise I don't think it will be helpful. For as intense as my dystonia was in the very beginning in 2010/2011, and for how far I've come to regain almost half of my abilities now, I still believe it will take a long time or many sessions to overcome it fully.....a year or years. I just think it's a matter of sticking to it, and having faith.
I know every dystonia case is different though, so what may work for me may not always work for someone else. But I am always happy to write about it and share the journey, no matter if this ends up being something I'm able to fully overcome, or if it's something I'm stuck with coping with for the rest of my life. I still believe it's possible to overcome it, and I will always work hard to do my best to inspire others as well.