To feel distressed that I have to live with this medical condition for years

[NooNooHead1981]

NB: The lady in this video is not me, but her tongue movements are almost exactly like mine.

I have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed antipsychotic medication. This video isn't me but it shows how my tongue movements are like. My life was ruined by the drug that caused this 7 years ago and I am living with a variety of weird and wonderful involuntary movements of mainly my face and tongue, but it was originally on other body parts too.

This isn't a post for sympathy, just one to vent. I know I am BU to moan a lot about it but I don't think I'm being unreasonable to think I will have to live for most of my life with a shitty condition that was caused by a prescribed drug to help me.

Yes, of course life could always be much worse, and I do appreciate a lot of very good things about my life. It just makes me sad that my health is forever ruined by a constant condition that probably won't ever go away 😪

I have no idea what is going on on that youtube video. I just see a woman with a lozenge (or something similar,) on her tongue.

Sorry it sounds a horrible condition however I also don’t get the video.

The video shows her tongue moving in a weird kind of writhing way, almost twisting around by itself. It's pretty awful and quite uncomfortable 😕

I'm assuming its the involuntary movement of the tongue which is the uncontrollable part? It must be awful OP.

I'm confused by the video though- why does she have a boiled sweet on her tongue?

The video is demonstrating the involuntary tongue movements the OP is describing - the lozenge is just to make it more obvious when the tongue is moving.

OP, I'm so sorry. I can only imagine how difficult this must be to live with, and the knowledge that it was caused by medication rather than being something completely random must be very tough to accept. Has your condition improved at all over time?

@AppropriateAdult thank you 😊 Yes, a lot of the grimacing, lip smacking, dystonic movements, and tic type movement of my face and other body parts have become much better over the past few years. However, after my 3rd baby was born in 2020, the tongue movements were like this and started randomly one night. Other new movements were also very bad and they all came on quite suddenly 3 months post partum. I then discovered that I was very low in iron, and that low ferritin can also directly affect dopamine, hence the increased involuntary movements. It's mad to think that even a simple deficiency could have such a profound impact.