My TMJD story
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.
TMJD SYMPTOMS
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.
Hey Rachel,
This story is so inspirational for me and I am sure so many others. I have all your symptoms and it is so scary, not only for you, but for your friends and family that have no idea what might be going wrong with you. It seems like the more doctors you see and things come back negative, the more people in your life accept that you will be like this till you die, that there is no hope.
How did you end up convincing your family that this was what was causing your issues and to get them on board with all of it??
I am having a hard time doing that right now. I mean, its not well known, and it costs a whole lot of money so I can understand the skepticism. I am going to see a neuro-muscular dentist soon so hopefully they will understand then.
Hi Bob. So sorry you’re going through this. Don’t wish these symptoms on anyone. It is a terrible invisible disorder, which most people don’t understand. It has contributed to a lot of mishaps in relationships with family and friends because you can’t just snap out it…and to the outside world, you look fine. Fortunately, my mom has this disorder so she got it.
The costs to treat this is so ridiculous, and it’s so hard to get insurance to pay for it–especially because many of the modalities that actually work for it are more “alternative”.
I have to update this post, but I started with an upper cervical care called NUCCA (maybe for a year, I think) along with a GNM orthotic (it’s a more specific type of neuromuscular care). They both worked hand in hand. I also did PT with a woman who is known as the “TMJ” lady in Pasadena, CA. She helped a lot too. After a while I plateaud on NUCCA, and started another upper cervical treatment called QSM3. This was a game changer. I stopped PT, and became functional again. I still have symptoms, like ear ringing, dry eye, and floaters–but after years of vertigo I can live with these.
I still wear the orthotic. The next step is braces–because my neck and teeth don’t align naturally. I still have a long road ahead. But I have much of my life back.
Here are some links to look at:
https://occlusionconnections.com/gneuromuscular-dentistry-gnm/
https://qsm3.com/
https://nucca.org/
Rachel , I stumbled across your TMJD story and felt relief to know that there was some light at the end of the tunnel for you !
I have been suffering for years but only in recent years learned what it is ….. vertigo / dizziness / eye pain and vision issues have been some of my primary and scariest issues …. at times I have had a hard time getting them under control .
I started orthotic therapy w a NM dentist a few months back but have had some tough times with it so stopped .
Bc of your blog I started seeing an upper cervical chiro and am going to try the orthotic again soon …. unfortunately I don’t have one of the qsm3 specialist in my area … ?
Thank your for sharing and I hope your road continues to be positive !
Hi Rachel,
Thank you for your post! It is such a relief to know that there are other people who suffer from the same condition and symptoms. I just recently started to see a QSM chiropractor (2.5 months ago) and feel much better than before. However, due the years and years of my body being compressed in such an unhealthy position (crooked and twisted), I understand that complete healing is not going to happen in a day.
I see that your last post was made in 2017. I am curious how things are going with your TMJ and the symptoms associated with it two years later. In my case, my QSM doc believes that my popping jaw and neurological symptoms are a result of loss of cervical curve, twisted ribcage and unbalanced hips. In other words, I have severe misalignment in my body that has been going on and getting worse for years until those scary symptoms started. I really hope that this QSM doctor will make feel even better soon. Please let me know how you are doing and whether or not you found any other helpful resources in dealing with this. Thank you!
All the best,
Vickie
Hi Vickie,
Thanks for your reply. QSM3 has been a God send for me. I plateaued with NUCCA. My muscles kept yanking my bones out of place again.
I’ve been doing QSM3 for about a year now, and it has changed my life. I’m more “functional” now. I still wear an 24/7 orthotic but I have my life back, which is all that matters.
I keep meaning to write an update. Thanks for the reminder.
Keep doing the QSM3. It won’t happen overnight and there may be some bumps in the road, but I really believe that it is a great treatment for this TMJ mess we’re in.
Hi Rachel,
What does QSM3 detail of? I am in this tmj hell myself. Your symptoms are my symptoms. I’m still searching for help.
I’m currently in physical therapy also doing Intra oral massage.
Thanks
Ana
Hi Ana, QSM3 focuses on the fascia. It’s very gentle but powerful. There aren’t many chiropractors who practice this in the states. There’s a doctor listing on this site – http://www.qsm3.com/
This article is something I’ve gone back to many times over the last couple of years and has provided me with so much comfort in knowing that I’m not alone. Your post inspired me to write one detailing my own journey, my first blog post ever, thank you so much for that. I referenced your article at the beginning for its significance in my life. Best!
Rainbowstewblog.com
Hi Rachel,
Have your floaters ever got better with treatment?
Thanks.
Dom
Unfortunately, I still have them.
Hi Rachel,
I have been experiencing every symptom you’ve experienced to a T. I’ve never read something so accurate that pertained to my symptoms in my years of search. This has caused me extreme mental health issues and has caused me to be taken to the ER multiple times and see multiple specaialists around Michigan. I would greatly appreciate if we could talk about your progress, as I would love to know how this has helped you. And maybe give me a little more insight on your journey and how you’re moving forward with this. I’m desperate and defeated and I need help but feel very alone in the process. Please email me.
Hey Rachel,
I was hoping to get an update on how you’re doing with your TNJ visual symptoms?
Has anything really made a difference?
Thanks!
Max
Hi! I came across this thank you so much. I have had VS alongside many of your symptoms for about 8 years now. It has been a struggle, to say the least but i have learned to manage my anxiety. How is your treatment? VS? any other symptoms? Are they still there? Thank you again!!! I have contacted a NUCCA chiro in the area (very expensive) I have already spent $1000s on trying to get better so I am hoping this may be it!
This really helped me regain hope I’d been desperately holding onto since my symptoms began 4 years ago. I am so happy you are on your path to healing – thank you for sharing your story.
Thank you for blogging about your experience! I have many similar symptoms, except TMJ which I am thankful that I do not have. Many visual disturbances and random aches and pains I never had until the beginning of this year. I have been to many eye doctors and other doctors including neurologists as well. 10 months later, I finally got myself to a NUCCA chiropractor a few weeks ago and so far, things are going well. The first adjustment really was eye opening as when I stood up, I did not feel off kilter or twisted anymore. My vision still fluctuates and I have to deal with dry eyes and floaters still..but some good things have been happening. I had a runny nose like crazy which is good b/c I had been diagnosed with a sinus infection and was just congested for several months. I’m hopeful that things will continue to improve as this year has been so rough on my family and me. Wish you the best of luck on your continued health healing!
After many many years of searching about my symptoms I found your blog, long have I wished to find a means to recover from a few symptoms. I have visual snow, jaw ache, tinnitus and health anxiety caused by thinking about these symptoms, it really gets in the way of enjoying life sometimes. I understand you no longer have the visual snow as you said it went away in the comments, I would really appreciate it if you could give me a few ideas on what worked for you. I have tried changing my diet in many ways, exercising and even fasting, nothing I have tried has worked so far.
Hi Phil,
My TMJ eye symptoms got better with the use of my orthotic and NUCCA treatment, which only focuses on the c1 and c2. I still have a hard time focusing, floaters and dry eye. But for me, it’s all stemming from my neck. My c2 yanks my jaw out of place, which gives me tinnitus in my right ear. I am constantly getting neck adjustments, as my ligaments are now beyond stretched. Next step is ozone therapy injections to strengthen my neck and jaw. You should get some x-rays or MRI done to see what’s going on. So hard to just guess when it comes to TMJ.
Regarding diet – My naturopath urged me to get off of gluten because she felt it was causing inflammation in the joints. I feel better, but I can’t say it has had a direct impact on my TMJ symptoms. But it’s going to take time. I removed it from my diet six months ago.
Hi there
I just read your blog and I am suffering.
I don’t know what to do anymore.
I keep getting massages and now I’m worse.
Everytime.
I hope this isn’t too forward but can I call you?
Going on the computer hurts my eyes so much.
This has been and is pure hell.
So glad I read your blog I thought I was crazy.
Marianne
I am going to email you, Marianne
When I was 13 years old, a dentist told my parents that I had severe TMJD and that someday I would develop real problems from it if not treated. My parents never heard of TMJD, so just blew it off. Soon after I developed eye floaters, but nothing else until I was 27. Then I got vertigo and severe jaw pain BAD. Having long forgotten about the TMJD diagnosis, I went to several doctors that said it was all in my head. Eventually I went to the library and researched my symptoms and found TMJD again in my life. I found a doctor who gave me two mouth guards, one for day and one for night. After several months, things got better, but never totally. I would say that I have been dizzy for over 25 years (I’m 52 now). I still get neck pain, photophobia and visual snow. The doctor I saw when I was 27 is retired and I can’t seem to find another one. So I have learned to adapt to my symptoms, though sometimes they still get to me.
Rachael, I know what you mean about motivation with a chronic pain disease. With my Ehlers-Danlos I had been to the Mayo and numerous other doc who missed the diagnosis. I know about TMJ with all of the medical reading I do. Very sorry, it is hard when a doctor thinks it in your head. I go for dry needling treatments ( not Accupuncture) which uses a filagree needle to release muscular knots throughout my body. I have done it before with the inside of my jaw area from going to the dentist. Reach out anytime. Thank you for sharing. My blog became a creative outlet and also a distraction from pain.
Take care
Jessica
http://www.elegantlydressedandstylish.com
Hi Rachel,
Thanks for sharing your experience. Such a difficult disorder to treat. Just wondering if it is an aclussal splint that you use and if so have you found it beneficial.
Like you and many of us I have tried so many treatments, given different opinions from each specialists.
Loving your Instagram feed and hope you are still enjoying some relief .
Cheers Vicki
Hi Vicki,
Yes, it’s so very hard to treat this.
What I use is called an orthotic, which is the appliance created by GNM dentists. I get adjusted every few months or so. I also see a NUCCA chiropractor. It seems my issue stems from my atlas and axis.
Thanks for your post Rachel, very comforting to know I’m not the only one with this issue! Did the visual snow eventually go away??
Hi Lisa. Yes, eventually it did.
What specifically made it go away?
Hi Joe,
I am still grappling with symptoms. TMJ never really goes away. It’s a condition that requires maintenance. With treatment, it can become manageable. I see a naturopath to help keep my inflammation down, a GNM dentist that created a 24/7 orthotic for me and a QSM3 chiropractor (they only work on the cervical area, no cracking). I’ve gotten better than before but it’s still a process.
Thanks for this post Rachel! I have been trying to figure out what’s wrong with me for the past 4 months. It has included sinus pain with absolutely no congestion, eye pain, fatigue, visual snow, sore neck and jaw pain (I have TMJ). My ENT is sending me for a CT but suggested it is most likely facial tension and jaw issues. Reading your experience opens up my eyes to other options of what it could be than me just thinking the worst. Thank you so much !!! Happy to hear you have gotten answers!!
Omg, Rachel I am going through eveeything just like you. I have lost hope in doctors here in the NYC.
I have everything from tmj, to floaters, visual snow, tinnitus, muscle pain, feeling like losing 3d perception.
I need desperately to find someone that understands what I’m going thru and helps me.
If you can share the information of the doctors that are working with you, I would totally go to LA to see if they can help me.
Hi Rachel, as soon as I read TMJ on Facebook I had to read the rest of your story. If I had known, you the first thing I would have done is send you to a NUCCA chiropractor. I study Paul CHEK and have learned about NUCCA 15 years ago. I also own a personal training studio and do a very different assessment with my clients including an atlas test. You would be suppressed how many people have an atlas problem that shows as SI joint disfunction, sciatica, back pain knee pain, TMJ, headaches, and so much more. I am so glad you are doing better!
Excellent post Rachel. My adult soon has TMJ issues and cannot work because of the constant pain. More bad days than good. It is so very unfortunate that many medical professionals do not understand the issue or believe the patients and pass it off as a physiological issue. The insurance companies do not want to pay for treatment leaving so many without care and treatment, like my son.
I hope that many people read your blog and gain better insight into this disorder.
Thank you for posting.