I’ve been wanting to write a more comprehensive post about my temporomandibular joint dysfunction issue aka TMJD, but never really knew where to begin. I still have so many unanswered questions myself and am currently in the process of treatment. But I know how scary it can be and how little information there is out there. This post is for those who are going through this battle. If you googled this disorder and found your way here, I want you to know – You are not alone. Your symptoms are real. And yes, your jaw can cause a lot of strange problems. To get right to it, I’m going to just break down what I went through and what I’ve done to get myself to a better place.
I’m not 100% sure how I developed TMJ disorder. I’m attributing it to a bad fall that I had when I was kid and years of stress that turned into Bruxism, which led to a serious case TMJD. After a difficult time in my life, I got my first “flare up” in 2005. It started with severe neck pain literally over night, roaring tinnitus with pulsating beats, vision issues that included visual snow, lack of 3-dimensional perception, light sensitivity, jaw pain, fatigue, eye and sinus pain, lethargy and a nice case of health anxiety. I had no idea what was going on. I blamed the botox I recently received to control my eye twitching, which I later learned was my first TMJD symptom.
Not being entirely convinced that it was a botox issue, I thought it may be my wisdom teeth so I had them removed. When that didn’t work, I was convinced I had a brain tumor. Yep. A tumor. I got an MRI of my brain done but of course it came back normal. With no answers, I thought I had some kind of neurological issue so I went to a neurologist. I checked out fine.
Frustrated, I decided to go down the holistic route. I did massage, acupuncture and even went to a spiritual guru who told me that I had a sensitive Incan blood line so he proceeded to ring bells over my head. Um, ya, that didn’t work either. Then I thought it could be an ear problem so I went to the top ENT in LA. She told me that I likely have something called TMJD. Really? My jaw?
I did some research and found a very reputable neuromuscular dentist in my area, and (yes!) I started to get better within 6 months or so. He measured me for an orthotic, which seemed to do the trick.
Once I started to feel better, I stopped wearing my orthotic and lived my life. Awesome, right? Nope. As the years went by, my body started adapting to my moving jaw position until the day it just didn’t anymore, which was in January of 2014.
Up until that point, I had been dealing with random muscle pain. Nothing to get alarmed about, I thought. We all get them, right?
Well, apparently I let it go so much, it progressed into excruciating chest pain. Now that was worth getting alarmed about! Not thinking at all that TMJD was rearing its ugly head, I kept going to ER. They could never find anything wrong with my heart. So I figured it was posture related, as I sit at a computer all day. I tried yoga and massage and started to see some improvements. Well, eventually, the latter sent me into a TMJD hell hole. I won’t blame the massage because it did have its blissful moments. Instead, I will blame a neglected muscular system that decided it was going to kink up somewhere to compensate for all the torture it has been through. Unbeknownst to me, my jaw twisted me up like a pretzel (well, that explained the hip and shoulder being on higher on one side!) and the moment the masseuse tried to relieve a knot on my trapezius was the moment my neck and jaw said f-you. My vision went completely off, my ears started roaring, my back was sore and I had shooting pain everywhere – my eye, my face, my toe, you name it. Thinking it would get better in no time, I started looking for my orthotic but it was nowhere to be found. It was upsetting but there was no way I was going to drop several thousand again on an orthotic. I tried 100 different routes instead (which essentially ended up costing more money in the end).
Now here’s where it gets fun. I went to my Osteopath, who basically told me it was all in my head. He did osteopathic treatment and moved my jaw over by releasing a muscle. I felt great when I left the office. The next day, I developed what would become a year long battle with vertigo. I soon developed sleep terrors, panic attacks (oh, those suckers are real, my friends), hyperacusis, eye floaters, light sensitivity, loss of 3-d perception, nerve pain, hypnic jerks (but all day), digestive issues, arrhythmia (my heart wanted in on this too), knee pain and a unicorn horn. Well, no. But I wouldn’t be surprised if I did. I still had sternum pain and felt like I was walking through a moving video cam on a rocky boat 24 hours a day. It was debilitating. I went to the eye doctor, cardiologist and a chiropractor who cracked my neck and told me I was all better now. I wasn’t.
Here’s the deal – Your jaw can be a bully. If the joint is not happy, it will wreak havoc everywhere. Simply put, it’s cloaked by the strongest muscle in your body that leads to your head, your neck, your spine. Every-thing. It’s all very connected and very complex. Your entire vertebrae is filled with nerves that send messages to your brain. As far as my nerves were concerned, I was being hunted by a wild boar, so it set my brain into flight or flight mode at all times. No amount of meditation, yoga, massage, PT, visualization combined with a good pillow, Epsom baths, gluten free diet, osteopathic treatment or bell ringing guru was going to help. It may help some people, but I was way past that point. When I opened my mouth, I looked like a Picasso painting. The left side of my face protruded while the right sunk in. I desperately needed an orthotic. Now they don’t work for everyone. But it helped me once before, so it was worth a try. I went to my regular dentist (thinking they’re all the same) to get one. His was less expensive the last one I had so I went that route. Needless to say, it was nothing like what I had experienced years ago with the neuromuscular dentist. He’s a great guy and can whiten the heck out of some teeth, but was not very well versed in TMJ disorder. He thought he was, my jaw didn’t agree.
Out of desperation, I joined a FB group for TMJD folks, and soon learned that the sufferers in this group knew more than healthcare professionals. However, the solutions offered in the group were a financial nightmare for so many. which made me very hesitant.
Even though I was armed with more info, I was convinced that a massage may do the trick. You know, when you’re desperate you think maybe “this time” things will be different. So I found another therapist who had a great track record.
Welp. Sure enough, I left the massage table with the most debilitating vertigo I had ever experienced in my life. My mother had to fly in from Texas just to take care of me because I was unable to walk, let alone drive. That was the last straw. I finally took the group’s advice, and didn’t care that it was going to cost thousands of dollars. With the help of my family, I was able to start the treatment I needed. I researched a site called Occlusion Connections and started neuromuscular treatment again. But this time I added a NUCCA chiropractor (they only deal with the atlas and do not crack bones!). The two doctors work closely together, which is a major plus. I also got x-rays done, and it finally made sense to me what was happening on a structural level. I also switched over to a Naturopath who specifically deals with these kind of disorders and women’s health issues. She’s been helping me on the whole body aspect of this disorder starting with nutrition (another factor in all this). I’m going into my 5th month of treatment and am starting to see improvements. I have good days and some that are not so great, but I strongly feel that I’m on the right path as symptoms gradually disappear.
Now, I am no doctor. I can only tell you what worked for me and what did not. The reason why this is such a complicated disorder is because every case is different. There’s a lot more I could share on the topic but the beauty of blogging is that I can always come back and share more.
If you’re looking for some information, confirmation and a few words of encouragement, I hope that my experience helped in some small way.