What were your first symptoms of tardive dyskinesia?

DX'd - Sz/SzA
1

involuntary movements seem to be getting worse

This time worse i think i have been doing the money sign and shuffling around a lot my feet

I guess there is no way of knowing how bad it will get.

so worried that my long term recovery might be the thing that turns me into a freak

2

I was sticking my tongue out of my mouth constantly. Like a frog eating a mosquito.
LOL. So bad. Then I quit risperidone, and after some weeks it went away, fortunately.

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3

thank god it stopped!

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4

What’s the money sign?

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5

rubbing fingers together
a close match to loadsacash hand sign

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6

My tongue and teeth scrape each other at night and i have oculogiric crisis once a week

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7

Rubbing the fingers is known as “pill rolling” and is a strong indicator for TD. Don’t waste time, make haste to see your pdoc.

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8

Have you been checked to see if a different antipsychotic might help stop this

I can’t take Olanzapine for this reason

oculogyric crisis is no fun

9

Thanks

a shame becuase never had a better med

is it worrying if i am doing “pill rolling” before i realise?

is that classed as involuntary, do you know?

10

I had a problem with it when I was on Saphris. It was terrifying and depressing. Especially since I read that it may never go away but thankfully it did. I would often turn my head which was beyond my control as well as other things. That and my hallucinations was just terrifying and made me more pyschotic. It was like something had control of my body. Thankfully it did go away after I got off that drug.

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11

that sounds terrifying … so glad it went away when yo changed drugs

what else was happening?
sorry if it’s too much

12

you still on Risperdal?

I got eye twitching, but yeah, it went away.

This was early on when I got it.

13

I can’t remember exactly I had problems with my mouth and jaw as well, as well as problems with my limbs. It was extreme that’s for sure and other people noticed it because while they may have thought I was moving on my own I had this terrified expression on my face when it would happen.

No I’m on Invega Sustenna now. None of those side effects. It’s been almost two years on it.

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14

I had this talk with a friend of mine who was on APs for majority of her life.

She told me TD develops after prolonged use of APs because the brain starts to create new dopamine cells within itself.

The more you know

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15

Another side effect I had from Saphris was blacking/passing out randomly. It was after I had been on it for awhile and it also made me feel like my brain was shutting down and like I was dying. I guess it’s rare but a lot of Aps have done this to me. That’s why I stay on Invega. Anyway when I told the Dr. that the Saprhis made me feel like I was dying, he took me off of it.

16

Saphris was my first AP and it took less than a year for it to develop.

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17

Were you taking 20mg @Cynnelise?

18

I can’t remember sorry, it’s been years lol.

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19

I tried 4 or 5 AP and they all did the same

20

I got TD symptoms for about six weeks after I stopped a 30 mg daily dose of Haldol. My tongue would move around in my mouth (it didn’t actually stick out) and I would get tics in my feet and hands. My pdoc recommended Benadryl at night to help with the tics and it helped a little. It stopped on its own once the Haldol was out of my system.

I had switched to Zyprexa at the same time, but my pdoc said she didn’t think it was causing the TD symptoms since I had successfully been on Zyprexa before. She was right that it was coming off the Haldol. I am so grateful it stopped!

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