In August of 2014, I experienced an allergic reaction to cephalexin - more commonly known as Keflex. The reaction was initially minor producing only a slight body rash, but what started 4 days later was anything but minor. Temporomandibular Joint Disorders, or TMJ or TMD, are incredibly painful, and in my case are persistent. This posting is a chronicle of my terrible journey, and my hope is that if you are reading this - there is something in it that can help you gain some sort of relief.
After my initial Kelfex rash, the muscles in face started tightening up. I found it difficult to open my mouth wide, it was difficult to talk, my tongue hurt, and there was a constant dull pain deep in my jaws. Initially, my bite felt normal and I didn't feel that there was any malocclusion. Initial symptoms:
Tight and sore face muscles
Jaw popping
Difficult to talk
Painful tongue
Possible coating on tongue
Sore neck & shoulders
After a week or so I decided to visit a nurse practitioner at our on-site work clinic. Judging by my symptoms, she suspected that I had oral thrush (because of the slight coating on my tongue), and prescribed a short course of difulcan. In my opinion, the coating on my tongue was normal, and didn't look any different, but it was worth a try. After all, I have never experienced anything like this before.
After one week, I experienced no benefit and the tongue pain just became worse. What I discovered at a later date is that because of my dysfunction that my tongue was continually rubbing against my teeth which made the tip of my tongue raw and painful, but more on that later. This pain was the worst symptom and the focus when I visited my doctor. Here are some photos on another site of what my tongue looked like (not me, but tongue looks close).
My Doctor
My doctor didn't really see much wrong, and diagnosed me with a case of glossitis, which is basically a swollen tongue, and recommended that I see an ENT. He also suggested that some of my issues might be in my head, or have manifested by surfing the internet too much. After all, I have never experienced anything like this before, so I decided to see an ENT.
ENT
The ENT really didn't see anything more than an irritated tongue and reiterated the glossitis diagnosis, and speculated that it could be some acid reflex and post nasal drip. He recommended using Mylanta after eating and before bed, and using saline nasal spray to combat the post nasal drip. It also sounded very similar to LPR or silent reflex.
It had been 2 months since my problem started, and since then I have been in constant pain. I was so hopeful that this was the fix, but it was not. It wasn't LPR, and it wasn't post nasal drip. I went back to my doctor, and either I was crazy or maybe it could be some sort of TMJ Disorder he said. So I turned my research to TMD.
I have discovered on my journey that TMD is easy to diagnose and hard to treat. Medical professionals will take standard steps or make you feel like it's in your head. Stay strong and keep trying and you will find help, but it will not be cheap. So prepare yourself.
My Dentist
My initial TMD guess led me to visit my dentist. She verified that I had jaw popping and recommend that I buy a night guard because I am probably clenching my jaws and grinding my teeth at night. I showed no wear on my teeth from grinding, but I couldn't rule out grinding. What I knew for sure is that I never had any issues before the Keflex reaction. At this point I really was desperate and would try anything, so I purchased a mouthguard for $499. Luckily, my insurance covered some of it and my cost was $99. The mouthguard was soft and was custom fitted to my lower teeth.
Initially the mouthguard felt good. It helped me sleep, and I felt that I could "stabilize" my jaws. This feeling was short lived however, and it actually made my pain WORSE. That's when I decided to see a TMD Specialist.
The TMJ Specialist
The first visit consisted of an in depth interview, measurements, and an x-ray. The expertise of this Dr. was immediately apparent. After months of self research, she took the time to explain the intricacies of the jaw (and concepts like the coronoid process), and gave brutally honest expectations. Finally, i felt like I was going to get some relief, but it would not be quick - especially since I waited so long to get treatment (or the right treatment).
The Diagnosis
My problem is the lateral pterygoid. It's in spasm, worse yet stuck in a spasm-pain-spasm cycle. When a muscle is in spasm like the pterygoid, its change in motion may affect other muscles in the face and body. The muscle spasm, through the central nervous system, creates more contraction, which then creates more spasm, and this cycle goes on and on.
Initially, it was hard to blame the lateral pterygoid solely, as all of the muscles in my face (and neck) were sore, but there was great confidence. Regardless the treatment was the same.
The Treatment
You have to break the cycle and get those muscles to relax, which is a real challenge if you have to talk most of the day at work. The initial treatment consisted of an had acrylic mouthguard and a pain relieving cream.
The mouthguard took a bit to get used to as I was used to both no guard, and a soft guard on the bottom teeth. Here is the type of guard (except on top):
The splint is adjustable, and it is usually adjusted on every visit. Adjustments typically consist of adding and removing material from right or left side of the splint to balance jaws.
The cream is a topical cream that you actually rub on the jaw muscles, and it is wonderful. The first time I applied the cream, I immediately felt the burning pain go away. This was the first time in nearly 18 months, that this pain had left. The Flurbiprofen and Cyclobenzaprine combination cream was custom ordered from an apothecary and was nearly $200 for a tube the size of a toothpaste tube. It takes very little cream to feel relief. Flurbiprofen is a pain reliever and Cyclobenzaprine is a muscle relaxer. The great thing about the topical cream is that you can use it and it does not have the side effects of an oral muscle relaxer. I used this 3x a day in the beginning. Warning: also it applies unnoticed it will stain your collar on your dress shirts - like an oil stain.
One Month
After just one month I felt some noticeable improvements. My range of motion was a little better, and the pain was much, much, less. When the mouthguard is in, it relaxes the muscles of mastication, and the pain literally just goes away. However, the bulky mouthpiece makes it hard to talk, so you will find yourself continually taking it in and out during the day. After getting pain relief from this condition, you really do not want to go back to being in pain - AT ALL.
As a result, I went back to the TMJ Specialist and she was able to provide me a low-profile day splint that went on my bottom teeth, that is "hidden" and is much easier to talk with.
Gelb Splint
I wear this splint 4-5 hours throughout the day, and I wear the hard splint at night when I sleep.
6 Months
I return to the TMJ Specialist monthly, and get adjustments on the splints. I can feel when a splint needs adjustment, and the feeling is a deeply sore jaw. Overall, I feel much better still. My back, neck, and face feel better, but my bite is still out of alignment, and my jaw still gets sore after talking and eating.
The treatment remains the same, but now we add lidocane injections into the face and neck muscles, including attempts at the lateral pterygoid. These offered minor short term relief, but have failed to be the solution to the problem.
9 Months
My relief has plateaued. It hasn't gotten any worse and the splints continue to relieve the pain, but there has been little improvement the last few months. At this point I am running out of options. The next step is to try a stronger muscle relaxer called Clonazepam. interestingly enough, if you look up Clonazepam, you will see it does much more than relax muscles - it was originally intended as an anti-seizure or anti-anxiety medication.
The doctor's hopes is that will cause further relaxation during the night time and will reduce any clenching that is going on. The first few mornings after I began the drug, I felt a little better. My pterygoids still had not released, but I felt my range of motion was slightly better. However, if i take the pill too late at night, it is difficult to get going in the morning, so be careful and give yourself 8 hours before you have to wake up.
Looking Forward
This is where I am at right now: using splints and taking Clonazepam. If this doesn't work, the next course of action is ultrasound guided botox injections in to the ptergoids themselves. Botox will paralyze the muscle, ergo causing it to un-spasm. This is a last resort to my doctor as Botox is a toxin. Click here to read more about this process.
12-24 months
After 12 months, with some improvement, I hit a wall with the TMJ Specialist. She tried all of the conservative treatments, and is very reluctant to move forward with more aggressive treatments like Botox, surgery, or orthodontics. She recommended getting a second opinion, or just continue the maintenance injections. I don’t blame her for giving me an ultimatum. On the contrary, it was nice getting some truth: she’s stumped by my situation, and its not bad enough to try something more severe/permanent (easy for her to say).
So I went to a second TMJ Specialist and an Orthodontist. The TMJ Specialist just wanted to do it all over again, offering no real, new solutions but listen to relaxing, meditation music. The orthodontist was very knowledgeable, and confirmed what I already knew… there is nothing wrong with my teeth (bite), and my issue is muscular.
So for the next several months I continued on with the 3 splints (1 daytime, and 2 night time), and took the occasional muscle relaxer before bed. For pain relief ibuprofen continues to be the best option, and Miller Lite. At this point, I feel 35% better, which is a big difference. It still hurts, my bite is still off, but at least i can forget about the pain/discomfort once in awhile.
24 months +
In the midst of this I decided to switch jobs and of course medical/dental insurance. I had to find a new dentist, which was a godsend! I was fortunate to visit someone who actually wanted to help. The dentist didn’t know how to fix my problem, but he remembered a patient who had something similar, and found a sports medicine doctor locally who cured her problems. He also said he would call around and see if his colleagues have any insights.
I was given 2 things on my follow of visit which dramatically improved my condition:
I was given the name of a Chiropractor/Sports Medicine doctor in West Phoenix.
I was taught the pencil trick.
The Pencil Trick
Now the idea shared in the next few sentences will sound like one of the dumbest things that you have ever heard. In fact, I told my dentist that it was the dumbest thing that i have ever heard, but I was desperate and would try anything. My worst pain is when my jaws are idle. They will not find a resting position for whatever reason, and because of this they are always spasming and working against each other to find their equilibrium. So my dentist said we are going to give them something to rest on: a #2 Pencil. Quite simply, open your mouth a 1/3 of the way, and push the pencil back as far as you can so it notches between your teeth and let your bite rest on the pencil. If you have to bite down to keep the pencil in place, it probably needs to be further back. So once in correctly, your top and bottom teeth will be touching the pencil, but you aren’t using any energy to bite down on it.. rather your jaws are resting on it and keeping it in place.
Like this, but without the smile and further back.
After 5 min you should feel your jaw relax. I would do this for 10-15 min, 7 or 8 times a day. After a week, everything felt dramatically better! The only downside is if your lips are dry then you will get cracks in the corner where the pencil touches.. It’s still worth it! For the first time in 2 years, I could sit and watch a whole movie without being distracted by jaw pain.
Chiropractor
I was referred to a Chiropractor/Sports Medicine Specialist who had extensive knowledge about the issue. Honestly, more so than most of the TMJ Specialists that I have visited. He does the standard chiro stuff, but also focuses on massaging the muscles of the jaw and face. The first time I went it was extremely painful - almost like a muscle that had been tight for year, which in my case was exactly what he said it was. The knots were pretty severe, but after a few rotations I felt immediately relief. My bite increased and the dull ache was 85% better. I continue to visit once a month, for the same treatment. Although, I haven’t gotten back to the 100% point, I am happy with 90% compared to where I was 2 years ago. If you can find someone who understands those muscles and will work to rehab them.. I highly recommend that you visit!