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So, my TD Remains

I had talked about my tardive dyskinesia before. It started when we added Abilify to Invega.

Well, when I switched to Aristada it went away.

So I thought.

Today, my mental health nurse asked me if my thumb jerking bothered me. I said… "What? " It turns out my hand and thumb is still jerking. I just got used to it. Tongue still moves around.

I still have TD. We aren’t going to treat it because it doesn’t interfere with my life, but I have to keep an eye out for more tics.

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I’m glad it’s not so serious

Good luck. I hope it doesn’t progress. If it does, it might be a good idea to think about backup medications now, so you have a plan for how to proceed.

Yeah, I’m going to look some up. I hope it doesn’t progress. I thought it was gone. Guess you can just get used to anything.

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My new psychiatrist is a grizzled old vet who dates back to when the newest drug was Clozaril in the 70s. He’s keeping an eye on me because I’ve been on them for over 20 years and he said that the risk of TD, be it from typicals or atypicals, is cumulative over time. He was telling me about 2 new drugs (Ingrezza and one other) that have been released lately and has had a lot of success in the elderly in long-term care where it was most studied (and the cases of TD were much more severe). So don’t worry too terribly much. At least now we’ve finally got some meds to treat TD, which is huge.

Thanks @alien99 .

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When I had extrapyrimidal symptoms my fingers would move in a strange way and I wasn’t aware of it at all. I’m on 3 mg of benztropine and it stopped according to my husband. I’m sorry you’re going through this

Thanks. It’s just disconcerting that it is visible to others and I can’t feel it anymore.

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That’s exactly how it was for me.

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My medications are giving me some of the same symptoms.

They diagnosed me with Parkinsonism by Gamma scanning me while on DAT, a drug to screen for Parkinsons.

I can relate.

I’m sorry your having tough symptoms.

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Me too :raising_hand_man:

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Thanks @Ares . I don’t think it is nearly that bad.

EPS is a motherducker. For a solid YEAR, I had cervical dystonia from 2009-2010. My head pulled to the left. I tried to bring my head back to center, and it would just stop going that way and vibrate in place. It wasn’t painful, but nothing helped. I had to lay with my left ear on the pillow for me to fall asleep. 10+ years later, even after it went away on its own, it’s the only position I can fall asleep in. It’s also known as torticollis. I hid it well when I worked, and if anybody asked, I told them I had a root canal. One woman asked me, “So, how long have you had torticollis?” I must have looked like a deer in the headlights. I asked how she knew, and said she used to be a nurse. Embarrassing.

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I don’t have TD but I’ve lived in fear of it for over 15 years. The meds I am on have a low risk of TD but I am on 2 AP’s so I would assume that makes for a higher risk, although they are relatively low doses.

I hope things get better for you.

If I drink too much caffeine my eyelids twitch, that never use to happen, it freaks me out, so I limit myself to 1 cup of coffee a day. Then it’s decaf tea for the rest of the day which has very little caffeine.

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That sucks I’m sorry your dealing with this maybe they can give you medicine to help I thought Benadryl helped with these things but I could be wrong

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It might be worthwhile trying some vitamin b6 (after clearing it with your doctor)

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Have you checked out this site talkabouttd,com

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This is my biggest fear about TD. Working in a neuroscience lab, odds are pretty high all my collegues would recognize it.

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Thanks guys. I know it isn’t huge, not in light of all we go through. But yeah, having tics people can see is uncomfortable. Right now it is hand and tongue. I worry about blinking and mouth movements. Anything that stands out that people can judge as weird.

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I have an anecdote for you, @ZombieMombie . I’ve obviously been in the psych realm for many years. I’ve seen lots of varying cases of TD, from mild to incapacitated and can barely breathe. My wife and I went to a nursing home to visit her sister. While I was standing in the lobby, I asked my wife if she could spot the people with TD (almost all off them had pill-rolling or orofacial grimacing and lip smacking). She couldn’t until I pointed them out to her. The point I’m trying to make is unless you have a trained eye, the average person won’t notice minor TD or will have just zero concept of what it is. It’s the folks in the field who can sniff it out.

Next time you see your psychiatrist, ask them to do an AIMS test on you (Abnormal Involuntary Movement Scale). Any pdoc worth his salt should be able to do it, and if not, I’d find a new doc, frankly. You’ll get scored but you won’t be told the score. Based off the findings, the doc may adjust your meds or give you others to help combat any issues that arise. The test is totally painless and easy. You just sit in a chair in an upright position and follow the doc’s directions. Takes about 2 minutes.

Forewarned is forearmed. Hope this helps.