Apparently I am really sensitive to medications, especially Psych meds. Over the last 2 years, I have tried 6 meds (not all Psych) that I eventually had to quit because of (what I would consider) intolerable Tardive Dyskinesia. I know that many others have it worse, have to take the meds that cause TD and that, for many, it never goes away. I have been lucky that mine generally went away.
Except the last time.
My Recalcitrant Tongue
The first time I experienced the TD, it took a couple three weeks to figure it out. My tongue kept burning… then I would wake up with blood in my mouth. I couldn’t figure it out. My teeth? They all felt fine.
So I meditated on it, talked to myself about paying better attention, slowing down the movements so I could figure it out.
I began paying attention as I fell asleep, honing in on my mouth.
A couple of nights after this new mindfulness thing, I relaxed and let my mouth do its thing. And boy did it ever.
Scraping is the best way to describe it. My tongue, clearly having a life of its own, pushed through my teeth, first pressed upward, then pulled back, my top teeth sliding against my raw tongue. Over and over and over again. Apparently, all. night. long.
Oddly, it didn’t do it as much when I was awake. I realized it did some, but not a lot. It was at night that my teeth assaulted my tongue. And holy fuck did it hurt.
Medication Connection
I Googled “tongue scraping” and TD came up. Medications were the culprit. Sometimes ones a person had taken for many years.
I’d recently started some medication or another (cannot remember and for whatever crazy reason, I didn’t note it or write it anywhere), so went off and within a week, the TD had disappeared. The doctor tried another one to replace the first. Same thing, but this time I figured it out a lot sooner. Went off, it went away, and tried a third medication. This time it was fine.
Fast forward to this recent Manic Episode when I had to go on Risperdal for the hallucinations, then when I fell a tad too low, increasing the Wellbutrin… a med I have been on for several years. I hadn’t an issue with the Risperdal, but began noticing some light TD symptoms after upping the Wellbutrin. No blood this time, but the scraping had begun.
I lowered the dose of Wellbutrin for a couple of days with no changes, so upped it back to the 300 mg my doc agreed to (after I’d upped it myself). It didn’t get worse, but was still annoying.
Resignation
I seem to be in the place where the TD isn’t going to go away, but it isn’t going to get any worse, either.
It is definitely worse when I am tired or sleeping. I wake up with a very sore tongue and can feel I have been rubbing it against the roof of my mouth. I am happy that I am not waking up with a bloody tongue or enormous sores from the vicious play of teeth and tongue while I am unconscious. I am also quite lucky I do not have the serious symptoms of TD that include protruding tongue or uncontrollable facial tics that are obvious to anyone looking.
Still, my TD is annoying. It gets in the way of my work at times, having to make adjustments to my speech because of my involuntary mouth and tongue actions. But so far, nothing has been irreparable.
So, I shall just keep being Mindful and do my best to stay on top off the Tardive Dyskinesia, maybe lessening it over time.
One can only hope.
Navelgazing Writer 
Hey there… have you considered getting a plastic mouth guard? You would still have the movements, but no teeth to scrape your tongue. I have Invisaligns I wear at night, I wonder if something like that would help you.
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I did try different mouth guards that you can buy in the store, but they were too big for my mouth, which, despite all evidence to the contrary, is pretty small. My insurance won’t pay for a custom-made one. But thank you for mentioning it… I might have overlooked it for sure.
Thanks for reading!
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