Can't cope with tardive dyskinesia and involuntary movements
Posted , 9 users are following.
I'm struggling to cope with having tardive dyskinesia and can't stop lip smacking/tongue movements every day.
I have posted elsewere about this and will try to post more details in the future if anyone replies to this.
It's so embarassing, not to mention socially weird. I feel a real freak and don't know if I can cope with having this for the next how ever many years..
1 like, 7 replies
frank70321 NooNooHead1981
Posted
You are the first person niki I have heard of with the problem,
I have involuntary tongue movement ! When I am stressed my tongue goes mad, I find it very embarrassing I also lip smack,
My worst problem is when I have a short deep sleep I awake with my throat dry and it feels like it's in
Spasum, I panic and I have a quick drink of water to clear it,
It is very frightening,I have been to the GP today and she does not know what it is, could be Parkinsons ,heart problems or sleep
Apnea, next week I am seeing a speech and language therapist, hoping
They can help,
NooNooHead1981 frank70321
Posted
I believe we are quite alone in our odd involuntary movements... yours sound like it coule be related to Parkinson's. Do you take certain medication for your Parkinson's? I think some can cause tardive dyskinisia after a time. :-(
I find the lip smacking and tongue movements very irritating and embarrassing, and I have seen several neurologists who have said it is more functional than related to mediation-induced, although I did take a week's worth of anti-psychotic last year but most of the medical professionals say it was too low a dose for not long enough.
It's very isolating being the only person who has such an odd condition although I try not to let it rule my life and just get on as best I can.
The tongue movements get worse with stress I agree, and I find it makes my mouth very uncomfortable with my tongue constantly scraping against my bottom teeth.
I think there are medications that can mask the symptoms, and I find taking a low dose of anti-depressant helps a bit but most doctos say nothing really helps. It's very frustrating to have a condition that they can't seem to treat... :-(
mary16582 NooNooHead1981
Posted
hi Nikki I have very much the same symptoms as you do I was taking an antipsychotic to supplement my depression meds now I have this and don't know what to do with it I think it's also getting worse and I have stopped that particular meds you have any suggestions or find anything let me know
NooNooHead1981 mary16582
Posted
Hi there
Which country do you live in? How long did you take the antipsychotic? I have found about 3 or 4 other sufferers on here with the same condition who live in the UK (I do) and no- one seems to have any answers.
I've seen the leading UK expert on it and even he just suggests symptom management which includes Botox injections and therapy for tic management - more suitable for Tourette's sufferers..! It's pretty rubbish really.
So sorry to hear you suffer from it too. I've done lots of research about it over the past year and if I can be of any help at all please say or feel free to PM me. 😊
Stay strong x
PBDennis NooNooHead1981
Posted
Hello guys,
My girlfriend had this, and got to a point where she was embarrassed to go out, (and frankly concerned me too.) It wasn't all the time, but enough that it became an issue. Come to find out, it was her depression/anxiety meds. She switched and got better. Then she started to gain some weight, so went to different meds, and it returned! Finally decided to try another combo, and within 2 days this was TOTALLY gone....Thus, whether she have a predisposition for this I don;t know, but it was definately the drug interaction........Don't know if you take any more meds, or what, but that is the first thing I would look at.........also street drugs can interfere with MANY meds. Don't know if that is something done by you, but watch symptoms if it is....This probablly doesn';t help you, but had to post just in case, as it was a big problem with her for a number (3 !) years.
Hope you figure things out,
Paul in the USA.....
oshuway NooNooHead1981
Posted
in the last year after already having a slew of mysterious but anxiety related symptoms, i've picked up this symptom of muscle jerking. my limbs and shoulders(mostly) move out of discomfort, and also as if they need to or are being pulled by their pertaining muscles. it started in my stomach, being only a twitch. now it occurs everywhere, and is much worse at night laying in my bed and when i am seated in a car. i say this because at night i lick the sides, top, and bottom of my lips incessantly, as if out of control, and also move my tongue all around my mouth. which reminds me of what you're talking about.
carma20293 NooNooHead1981
Posted
I am curious if you have found any relief for the involuntary tongue movements. I started noticing weird tongue and lip movements about a year ago. At first I just noticed the inside of my lips felt like they had bumps and sore spots. It got worse and I realized I was sucking my lips against my teeth. The suction was being created by constant movement of my tongue. I was taking a medication called Nuvigil. I stopped taking it and symptoms lessened but still annoying. And it gets worse with stress. It is embarrassing and uncomfortable. I move my lips all the time to try to stop the sucking inside my mouth. I keep hoping it will just go away if I can relax but it never does. My doctors all seem to have no idea what I am talking about. Only my neurologist acknowledged it, but just called it a nervous tic that I is a habit that I could break. My tongue is constantly moving inside my mouth and I know it is not just a bad habit. I am sad that all of you are experiencing the same thing, but good to know we are not alone.