Tardive Dyskinesia from anti-psychotics.

Ozzy26

I have been treated for severe depression for many years. Over the last year or so, I have been cutting down on my meds. One of those was a low dose anti-psychotic. Since stopping it, I have developed tardive dyskinesia, involuntary rolling of the tongue and lip smacking.

I was wondering if anyone else has had this problem, and how was it treated.

StarryEyed

Hi @Ozzy26

Yes, I typically get those symptoms too by being on antipsychotics. Fast withdrawal can also cause these symptoms. There are a lot of disordered movement symptoms like this called "extrapyramidal side effects/symptoms" (EPS).

Luckily the treatment is a simple pill called Cogentin (benztropine). Also you need to slow down the reduction of your antipsychotic. You need to do this under medical supervision.

Best of luck with this.

Ozzy26

Thanks for your reply. My psychiatrist had me reducing the anti-psychotic, then came the symptoms. I saw a neurologist who put me on Artane, but it had no effect. I am about to try Sifrol when I am fully weaned off Artane. TD is so annoying, it also effects my speech. I sound like I have just come from the dentist. O, well, shall see what eventuates. Thanks again.

66Mustang

I developed symptoms of involuntary jaw movements and loss of neck control when I started taking a very low dose of risperidone (an anti-psychotic), and it was effectively treated by taking procyclidine

It's interesting you've developed the symptoms after coming off, but they sound similar & I wonder if it's at all transferrable to your situation??

To add this was able to be addressed by a GP, I didn't need to return to the psychiatrist that prescribed the anti-psychotic

StarryEyed

You're welcome, @Ozzy26. Its a relief to hear you've got medical supervision. When did the EPS symptoms start?

@66Mustang, the involuntary jaw movements is one of the EPS symptoms I get too. It's a writhing of my lower jaw from side to side and mouth opening widely. And my jaw often gets stuck. It's so frightening.

I'm sorry both of you have this experience.

I also get shuffling gait EPS, meaning my legs lock and I can't pick up my feet, so to move I have to slide my feet on the floor.

Then there's the ants in my pants - a physical and emotional panic where my muscles won't allow me to be still and I can't stop moving.

I've been on psych meds for over 40 years now and they've taken their toll, especially on my gastrointestinal system and neurological system. But if I hadn't taken them either I'd be six feet under from offing myself or in permanent lockdown in a padded room. So I'm still grateful for the meds.

Sending you both a big ❤️

StarryEyed

Just to add that I don't have EPS symptoms normally. I've only had them in the past when inpatient and administered high-dose antipsychotics. It would likely happen again if I go inpatient. It's a terrifying prospect.

StarryEyed

@Ozzy26 until you are better by drugs, have you tried anything else to help? One of my best friends has advanced Parkinson's, which has many similar symptoms to EPS, and besides drugs he does exercises. So I got to wondering if there may be exercises for EPS. Here are some things that AI says may help...

Ozzy26

Started on the drug Sifrol last night. Awoke this morning and my involuntary tongue movement is all but gone! Amazing.

StarryEyed

Oh wow @Ozzy26 Yay! That's how quickly I respond for my EPS symptoms too. You know, until you said you weren't responding to your EPS medication, it never occurred to me that it could be I didn't respond. So thanks for making me feel grateful now.

If you don't mind my asking, how are you managing your illness being off your antipsychotics and antidepressants?

Ozzy26

Hi StarryEyed.

Still not completely free from my Tardive Dyskinesia.

I am still on my antidepressants. Coming off my anti-psychotic had no effect on my mood, just gave me TD. My neurologist wants me to go back on the anti-psychotic in the hope of reversing the TD. My psychiatrist is not so keen. Will be seeing him week after next and we will revisit the issue, then I can take the results of our discussion back to the neurologist.

Just a tad complicated! I am positive that we will be able to get rid of the TD one way or the other.

Cheers.

StarryEyed

Hi Ozzy

I'm sorry you're still struggling with the tardive dyskinesia. Is it embarrassing in public? I've only ever had the symptoms as an inpatient, but as an outpatient I would likely be embarrassed.

They have found mounting evidence that long-term use of even low-dose antipsychotics can be very harmful. Is that why your psychiatrist wants you to discontinue your antipsychotic? I have peripheral neuropathy affecting my feet and gastrointestinal system, and some of my docs believe over forty years of daily antipsychotics is likely the biggest culprit. Plus I have a lot of other GI problems that are likely from antipsychotics and other psych meds. So three years ago I came off all psych meds, and only use them now for emergency rescue medication.

StarryEyed

Here is a video short explaining EPS symptoms. I find it upsetting as it practically makes light of EPS symptoms, although it does describe very well what they are....

https://youtu.be/G1u7t5JeNs4?is=rhe8F4lOnLk1wF4V

Then there's this other extreme - a video short that is really scary...

https://youtu.be/W5HCIKn2YeA?is=iB5YiNsYhwKGJWCh