What Works For My Body, Part Four: TMJ

Me on a bad day of TMJ.

Some of you may remember this picture that I tweeted of myself just over a year ago. I wrote, “What a bad day of TMJ pain looks like: a moist heat pack wrapped around my jaw, loaded up on ibuprofen.”

I’ve always called this excruciating affliction TMJ. Technically that’s incorrect, since TMJ stands for temporomandibular joint. It’s the disorder of this joint, correctly referred to as TMD (temporomandibular disorder), that has caused me and countless others years of chronic pain. However, since TMD is colloquially known as TMJ, inaccurate as it may be, I’m going to be calling it TMJ for the rest of this blog. Even Google does it.

If you’re not familiar with TMJ, you can read up on it at WebMD.

Now I’ll share with you my story...

When I was a child, my mom always told me not to grind my teeth. My dad encouraged me to let out my anger more so I wouldn’t feel the need to grind in the first place. Dad was onto something, not that I could ever manage to take his advice. I hold my stress, anxiety, hurt, and all kinds of emotions in my neck. They rarely make it past my voice-box. Maybe it’s because I’m an introvert and I’m terrible at expressing my emotions verbally. Regardless, all this emotion-stuffing and stress-grinding lead to TMJ. Some people get TMJ from physical trauma, like whiplash or boxing. Like many people, I got mine from mere tension. When I was 19, the effects of all that teeth-grinding and emotion-bottling caught up with me. My jaw joints were constantly in pain, especially on my left side.

You know the feeling you get in your facial muscles when you chew gum for too long, or after an especially long visit to the dentist when you’ve had to hold your mouth open for hours? If you know what I’m talking about, you understand the tender ache, the tired soreness that makes you feel like you just took a heavy-handed uppercut to the jaw. You might find yourself massaging the little nook where your cheekbones meet your ears. Soon a massage won’t cut it. Your ears start ringing for no reason, accompanied by intense bursts of searing pain that last from seconds to minutes. There is no pain like ear pain, especially when you can do absolutely nothing about it but rock your head back and forth and tell yourself that slamming into the wall like a wounded animal will do nothing to help, though you are tempted.

As my TMJ got worse over the next several years, so did my symptoms. In addition to the achey tenderness and tinnitus, my neck started getting so stiff that I couldn’t drive safely. Instead of turning my head to check that I was clear before changing lanes, I looked only at my mirrors and hoped for the best. I was fortunate, but it was foolish of me, and selfish. I’d wake up with my shoulders stuck way higher than they should be, and I found out later that my upper ribs were painfully higher than they should be as well. My trapezius (upper back) and neck muscles had pulled so many things out of place in trying to accommodate my stiff neck, which was connected to my stiff jaw.

Then there was the challenge of eating. Days would go by when I would be on a liquid diet, unable to chew anything solid. I'd eat nothing but soup, yogurt, and mashed potatoes. On a good day, I could eat pizza, but I could never manage the crust (and if you know me, you know that stuffed crust is a favorite delicacy of mine). If I did indulge in pizza, or an apple, or a burrito, I knew I’d suffer for it later. Sometimes it was worth it, sometimes it wasn’t even an option.

My acting performances also suffered because of my TMJ. In scenes where I’d have to be angry, or shout, or even just speak lots of dialogue or monologue, my poor jaw would be so tired and my headaches so bad that I’d start forgetting my lines. Advil did nothing. Scene after scene, take after take, I’d soldier through the often 12+ hour work days. Often no one knew I was suffering except the set medic and sometimes my hair stylist or make up artist. (No actress wants a reputation for being a complainer, especially about an invisible disease.)

Another embarrassing side effect I dealt with for several years… I couldn’t give any of my boyfriends blow jobs. I know this statement is ripe for joke-making—I’ve heard all the sarcastic, “Suuuuure you can’t give a blow job,” quips—but I seriously felt like less of a woman because of my TMJ. Guys love blow jobs. Why should one stay with me, an orally disabled shut-in with a heat pack wrapped around her head most nights, when they could get a girl with a perfectly functioning mandible? Fortunately, I pick good men. :) Any boyfriends I had during those painful years were kind, nurturing, and considerate of my sexual limitations. Not only were they understanding, they even gave me massages. I’m deeply grateful for their generous sympathy. Still, I was insecure about my bedroom limitations.

I tried many things to help my TMJ. There is no guaranteed cure, not even jaw replacement surgery (I talked to a girl who had one done, and it only made her TMJ pain worse). I tried physical therapy, mouth guards, chiropractic care, tooth filing, cranial sacral therapy, and a slew of other things in effort to lessen my pain. Nothing worked well enough or for very long, if I even saw minor improvement to begin with. Then a year ago, I found Dr. Graff-Radford…

I was under general anesthesia for seven and half hours getting thirteen cavities filled. Yes, thirteen. No, I don’t go to the dentist regularly. I only see a dentist as a last resort when I have tooth pain too stubborn to ignore any longer. Do I advocate this? No. But if you have TMJ, you know the special kind of dental-phobia I’m talking about. Make your pain even worse for a tooth cleaning?? Hell no. But for two consistent tooth aches that wouldn’t go away after several months? I finally went. Anyway, while I was asleep and my neglected teeth were being x-rayed, cleaned, and filled, my mom sat by my side chatting away with my anesthesiologist, Dr. Richard Roth. She told him the reason I’d avoided seeing a dentist for so long, and he referred her—well, me—to Dr. Steven Graff-Radford, the director of the orofacial pain program at Cedars-Sinai. It was an introduction to a new life.

During our first consultation, Dr. Graff-Radford said to me, “I’ll cure your TMJ in six weeks.”

I tried not to laugh.

Six weeks later, and a year after that and counting still, I am 90% of the time pain-free. This is an indescribably huge improvement.

While I highly recommend seeing Dr. Graff-Radford yourself if you’re in the Southern California area, I know many of you don’t live nearby, and/or can’t afford the services. My Blue Cross insurance didn’t cover the six week program, and it cost me close to $2,000 including doctor’s visits and supplies. It was worth every penny—you only get one mouth for this life. Still, I’ve not always been in the position to be able to invest in my body, and I remember how hopeless, broke, and in pain I felt. I believe in free health information and in sharing what works. So for those of you who are desperate to find relief from your TMJ, I’m going to share what the six week program entailed. While I wish I could say that it's totally free, I can't; you’re going to need to see a doctor at least once, because this regimen requires prescription drugs and a custom-fit mouth guard. But do feel free to print these instructions out and bring them with you to your next dental appointment. (I recommend seeing a dentist as opposed to a general health practitioner, since they'd probably refer you to a dentist anyway. And remember: I am not a doctor, so please don’t sue me for any inaccurate self-diagnoses.)

Basically, Dr. Graff-Radford’s TMJ treatment is to give your muscles a break from inflammation so that they can heal themselves (assuming your TMJ is tension-related and not from skeletal misalignment). Here is a summary of what Dr. Graff-Radford had me do:

• Take four 220mg liquid Aleve pills per day (two in morning, two more 12 hours later), every day for six weeks straight. Naproxens like Aleve act as an anti-inflammatory for your chronically inflamed muscles, giving them a chance to rest and to rebuild themselves.

• Take one 10mg pill of cyclobenzaprine (name brand Flexeril) each night for six weeks straight. This is a muscle relaxer and will help prevent you from clenching your jaw, grinding your teeth, and tossing and turning while you sleep. LIFESAVER. I still take one of these pills at night after the occasional bad pain day, usually after I’ve been flying or long-distance driving, or during a particularly stressful time. The next morning I wake up rested, if a bit groggy, but my muscles have had a nice long break from tension.

•Do a series of muscle stretches at least six times a day, six weeks straight, accompanied by Gebauer’s Spray & Stretch cold spray. The fine stream of ice cold, instantly evaporating spray distracts your brain from any discomfort you may have as you stretch your neck, jaw, shoulders, back, and ribcage muscles. *I couldn’t find the stretching program I did online, but these links (1, 2) will take you to PDFs that illustrate the same routine I did.

• Keep your tongue in the N-position at all conscious times. (Say out loud the letter ‘N’. Keep your tongue gently on the roof of your mouth to remind your teeth not to touch and your jaw not to clench.)

• Use a custom-made mouth guard nightly. I was supposed to wear it every night for a year and a half, but I stopped after three months because it was too cumbersome to sleep with. I still saw results, though.

I went to see Dr. Graff-Radford a total of four times—once for the initial consultation, secondly for the mouth guard molding, thirdly for the mouth guard fitting, and lastly to summarize my improvement after six weeks. I couldn’t believe how much better I felt, and I mainly credit the constant intake of Aleve and the nightly muscle relaxers, since physical therapy alone (with similar stretching exercises) hadn’t given me even half this much relief. I’d also tried a mouth guard alone, and it didn’t do anything for me before. The combo of these in addition to an anti-inflammatory + muscle relaxer = pain free me. Back to eating crusty bread and gnawing on crisp apples!

Every now and then I still experience a bit of neck pain, especially if I’ve been sitting at my computer, driving for long periods of time, or traveling by plane. The neck pain leads to TMJ pain. To help minimize any aches I feel, I do my stretching routine, keep my tongue in the N-position as often as I can remember, and occasionally I’ll take some Aleve. If it’s a bad day, which happens less than once a month for me now, I might take a muscle relaxer before I go to bed. Also, I try to get bi-monthly maintenance massages, ones that focus on my neck and jaw muscles (I ask the masseuse to skip my lower body and only focus on my upper). I recommend getting massages at a chiropractic center, as the masseuses and masseurs there are often better trained to work on the sensitive neck area than the ones you'd find at a spa. Spa masseuses are always afraid to touch my neck, and rightly so. If you can find a masseuse who is trained in TMJ massage, even better! They'll massage your mouth from the inside (with gloves on)!

Dr. Graff-Radford’s combination of treatments is the only thing I’ve found that has helped my TMJ for the long haul. What has worked for you? I’d love to know!

2019 UPDATE: Sadly, Dr. Steven Graff-Gradford has passed away. I am forever grateful to him for drastically lessening my TMJ pain, and I stand by his regiment.