And fun other things I asked lately.
Because I’m still sort of out of it on pain meds, I thought I’d share my recent experience with you. Consider it a public service announcement: trust your gut and continue to pursue help until you feel better. The medical field is not an exact science.
And forgive me now, because it’s long. You were warned.
Last summer, I started experiencing short bouts of extreme pain in my right cheek. It was horrible, as though someone was jack-hammering in my upper jaw with a hot tool. When it happened, I was down for the count. Eating was impossible and over-the-counter pain medicines barely put a dent in the pain. Thankfully, it wouldn’t last for more than a few hours and I was able to move on. And I could stand to lose a meal here and there.
It’s important to say that at the time, I didn’t have dental coverage. This was post-layoff and at the beginning of my new job, and benefits didn’t start for 90-days. You hope and pray for no medical issues to arise during those 90 days, but you forget to add in that you hope an eye doesn’t fall out or a tooth doesn’t go rogue.
When I finally got coverage, I visited the dentist….for a cleaning and check-up. I didn’t think to mention the facial pain, as it didn’t seem relevant to my teeth. It was my cheek, for Pete’s sake, not my jaw or teeth. All x-rays were clear and the cleaning was without incident. We found we enjoyed our new dentist and felt good to be on top of our dental care. It gets passed up in the day-to-day so often, but you really should remember it. Eyes, teeth — they’re vital and once they’re damaged or gone, it’s permanent.
The pain got worse in February. I visited my general practitioner of our new medical program and was diagnosed with a sinus infection. I didn’t question it, as my face got worse when I laid back and I was burning through tissues. I was prescribed prednisone, in addition to antibiotics, and wow, what a difference that made. About 12 hours later, my pain was decreased significantly. I finished the course of antibiotics, got sad when the prednisone was over (as the pain would return when I wasn’t on it) and was okay for a couple of months. Same thing, different day, but this time they referred me to an ENT. I had two MRIs, both which showed sinus issues but neither accounted for the pain. Surgery was an option (and still is) but it wasn’t going to fix the facial pain so I blew it off — who needs a one-week recovery period when it’s not serious, right? I will probably still get this done at some point, but it was like Pandora’s Box. Go in for one thing, learn more and still have the issue you went in for. I am just thankful for good medical coverage and kind doctors! I was referred to the allergist, who confirmed no issues. Darn. At this point, I just wanted answers. Eye doctor was up next — no problems there either. I was making my rounds through the departments of the HMO and still taking a lot of Ibuprofren and more prescription pain meds than I ever wanted to take. I’m also very wimpy when it comes to those narcotics, as they make me nauseaous and each time, I had to take an anti-nausea pill…aka the sleepy pill. I have a job, kids, a business…see where I’m going with this? It’s impossible to live just getting the edge taken off the pain, which was coming more and more often. On bad days, I wanted to pry out a couple of teeth with my own pliers and hit my head on the table over and over as a distraction. My eye would hurt, my ear would hurt, I couldn’t eat anything on that side of my mouth, and sometimes, not at all. On a good day, I’d have just a mild jaw ache but the fun foods were off the table. Taco shells? Nachos? Chicken? Nope. Everything would send me off my chair and the pain would just increase to where it was a hot burning feeling that made me want to go back to sleep…except you can’t really sleep when it hurts that bad.
When everyone else ran out of options, they referred me to a neurologist. By this point, I’ve gained 12 pounds as I can’t work out anymore. The pounding of running — outdoors, treadmill, rubber mat — hurt. Leaning in yoga hurt. Jumping in Zumba hurt. Lifting weights hurt, as the tension would go up into my shoulder, then jaw, and poof, pain was worse. I’d try now and then and pay later. If I got stressed, it got worse. Eating the healthier, low-fat/low-cal foods got to be more difficult, as I’d have to prepare them properly aka soft enough for me to eat, adding time to an already busy day and I would sometimes hurt so much that I’d grab the easiest thing I could. So here I am, 12 pounds heavier. I also was just starting to feel like this was too permanent, and worried about when it would ever go away. When the neurologist gave me a tentative diagnosis of Trigeminal Neuralgia, I was happy to have a possible cause and new medicine to try, but still unsure if it was the real thing, and if it was going to go away. It’s also a pretty heavy-duty diagnosis that no one wants. I was prescribed Tegretol, which can have side-effects of its own. The typical dose starts at 200 mg per day and goes up to 1200 mgs per day. You wean on and you wean off, as a hard stop is not safe. I am currently at 400 mgs per day and really wasn’t seeing a decrease; I did have a few days that were bare minimum pain, but it was hard to know if it had anything to do with the medicine or if I was just having less pain those days. Trigeminal Neuralgia, especially the atypical kind that was mentioned in my case, doesn’t have to be 24/7. In fact, there is no real pattern as everyone’s different. A lot of people are on a mix of meds and some eventually can’t work, due to either med side effects or the pain level being so high that they are incapacitated. Pretty scary stuff.
Then about 10 days ago, my tooth, the same one from the beginning, started to throb more. I had developed a lump in my cheek and already had a dentist appointment for August 14, but was having doubts about waiting that long. (I had underplayed it when I scheduled the appointment, as at this point, the pain was such a 10 that other things seemed less important by comparison.) Last week, it was a daily mess and by Thursday, waiting another two weeks was looking impossible. The tooth, by this time, was grey and without getting all gross on you, I will just say there were signs around the tooth that it was not just a cavity. I called and the wonderful receptionist at our dentist’s office agreed that waiting was not in my best interest. They squeezed me in yesterday and the xrays finally showed a major crack all throughout the tooth. All the signs pointed to an infected, dying/dead tooth that needed to be removed. Hallelujah! I have never, ever been so happy to go to the dentist or see signs of a problem, but sometimes, teeth are sneaky and you can’t see anything so you don’t just go randomly removing teeth in the hopes it fixes things. A lot of Trigeminal Neuralgia patients have done this, only to find it was just the TN and now the nerve may be more inflamed and they’re missing teeth. I didn’t want to be that way, but the signs were unmistakable.
So end of story, right? Tooth removed, all is good…ha, no. As is typical, it couldn’t be that easy. One of the roots was curved and required an oral surgeon to remove. Trying to find an oral surgeon in our insurance network and one that could see me soon was not easy, but the staff at our dentist’s office found me someone that was not only in our network, but could see me right away. As in now. And the receptionist had been there personally so she could speak highly of them. Score! The downer was that I had no ride there, so I had to drive myself — not a problem, I could drive, but they were talking sedation and you aren’t allowed to drive afterwards. The office was only about 22 miles away, so I made it quickly and within 20-30 minutes of arrival, was feeling the blessed peace of nitrous and a few shots. No pain…I was so relieved. The sounds, well, I won’t go there. I didn’t like that part but it can’t all be good, I guess. The husband was there waiting for me when I was done; poor thing was already sick and supposed to be laying down but instead had to get me home and get my prescription filled. (Thank you, Costco, for being affordable!) After an afternoon/evening of napping on/off, a whole lot of bloody gauze (four hours plus) and a Juice It Up, courtesy of my 19-yod…via spoon, of course. No straws. Also, no alcohol, crunchy food or spitting for at least three days…but I’m pretty sure I can live without all that in the name of the greater good, especially the spitting part. Other than brushing my teeth, I manage to live without that pretty much all the time.
Today, my jaw aches a little and there’s some pain in that big empty whole in my mouth — which feels like it is the size of my head, when my tongue touches it, though that’s probably an exaggeration somewhat — but the burning pain in my cheek and eye is gone. With any luck, there’s no Trigeminal Neuralgia and the pain doesn’t return. Teeth can surprise you. They are sneaky boogars we take for granted but they can hide a lot of things. If in doubt, don’t let it go. Trust your gut. If you’re ever in a situation where pain is there and you just don’t know what to do, persist. Seek out more help. It may not be immediate — and you may feel like a guinea pig of sorts, as everyone tries to help you — but don’t give up. Even if it turns out to be TN, you won’t be alone. I had joined two Facebook groups initially, trying to learn more about it and seeing what other people found that worked. I learned quickly, it’s hard to relate to unless you’ve been there, and TN pain is not “just facial pain.” They call it the Suicide Disease because it’s considered to be one of the most painful conditions out there. And if my pain was anything at all like it, I don’t doubt it. It stinks when your back hurts, or your toe hurts, and I certainly don’t want to diminish those whatsoever, but facial pain — it’s always there, literally, right in your face. Eating, talking, breathing, a cool breeze…it is ever-present and miserable. My heart goes out to those with real TN and I’m thankful that while the neurologist did her best to help me, it’s likely I’m going to be able to wean off the Tegretol in another week or so and call this done.
If you’re ever wondering, why is my tooth grey, why is there a blister, why do I want to not even eat my favorite foods, get your teeth looked at. Even if it’s not seen right away, the value of xray comparison is huge. I got to do it yesterday — the new vs. old xrays showed clearly the difference. Oral surgery’s no joke — it was painful afterwards and anytime you’re sedated or even just receive nitrous, you’ll need help, but it’s also a much better alternative than continuing to have an infection in your body. I was feverish the last couple of weeks, with no apparent reason, and I was also frequently nauseaous. I’m hoping to start being able to eat real foods in another day or so, being cautious on that side still for a bit, but I’m feeling so much better! It’s been a long six months of pain and treatment but I think it’s behind me!