Lived Experience Forum

[Former-Member]

hello. I've been in the forums for years, but don't post much.  I'm diagnosed with schizoaffective disorder.  I've been on and off antipsychotics for 27 years (eek). I have noticed that my tongue doesn't stay completely still sometimes.  I'm worried about tardive dyspepsia, a major side effect of long term antipsychotic use. I'm presently tapering down my antidepressant and I haven't lowered the antipysychotic for a few years.  Not sure what's more urgent to lower the dose. I spoke with my psychiatrist.  They said that tapering the antidepressant first was a good plan and antipysychotic next. Just scared that I'll get TD and not be able to reverse it , is it even reversible,? Does anyone have experience with long term antipysychotic use?

[Judi9877]

Hi @Former-Member  Thanks for posting this. I have had an experience with TD a few years ago that was due to a reaction to an antipsychotic med. I was really concerned and noticed things like shaking to the point I couldn't knit or thread a sewing needle- I craft so I didn't enjoy this experience. I also had the tongue thing as well. I called my psychiatrist and luckily he and my mental health nurse were able to come up with a new antipsychotic that has worked for me. I'd suggest that maybe you call your psychiatrist and let them know your concerns. If not, maybe even call an emergency department or mental health helpline if that's suitable for more advice. I can tell you that I haven't had it since which is a positive sign. 
Take care.

Judi9877

[NAL]

I was on several different drugs for depression from the age of 26-33 after which I was put on Lithium which I am still taking 30years later. I too notice movement of my tongue.

[Former-Member]

Thanks @Judi9877 . I really appreciate your comments and I'm happy that something can be done.  I'll follow up with my psychiatrist then. 

[Former-Member]

@NAL Thanks for sharing.  It might be related to medication though I thought it was the antipysychotics that caused Tzd rather than other medications.  Regardless,  it is worth mentioning it to your doctor as well I suppose.