r/Tardive_Dyskinesia

I have that movement very bad it’s almost constantly where it’s just my index finger and thumb rubbing together like u would do if u were rolling a pill around I guess heh 😅 but I read that’s kinda specific to Parkinson’s and I asked my neurologist about it and he said oh no u don’t have that u have t.d but drs have been wrong with me before so I don’t fully trust his judgement. Just wondering if any one else also has that same movement?

Would you stop taking antipsychotics? The psychiatrist I went told me not to stop my meds. That if it got worse I would need to see a neurologist. Im not sure if I should believe them or go cold turkey. Im schizophrenic. I got it from olanzapin or reagila or both.

So ive been on abilify for about a year and a half. Started at 2mg, then 5mg and recently (roughly 2-6 months) 10mg dose.

I want to preface that I only noticed more severe oddities when I would oversleep (roughly more than 8 hours and guaranteed after 10 hours of sleep)

At first, I would wake up daily (if I overslept) and roughly 10 minutes later, my left foot would curl up like a dehydrated muscle spasm.

At first, I chalked it up to dehydration because I didn't know TD existed nor that I was at risk.

Then as the weeks progressed, the cramp got worse and then I noticed one day while I was playing a video game that my neck was really tense and I could physically feel and see it with tremors.

I found that extremely odd.

However, I have a severe anxiety disorder and so I chalked it up to stress.

Then as the weeks progressed... if I overslept... like clockwork, 10 minutes after waking up the foot cramp would start. Then the neck tremors. But one day I experienced a symptom that I absolutely could not mistake for anxiety.

My neck started to corkscrew uncontrollably. I would have to put intense mental effort into even moving it in the opposite direction intentionally. And even then, I could not do it without REALLY putting effort in.

This is when I got really scared. I could no longer explain this as simply being anxiety.

Im 28, I've had GAD and PTSD clinically diagnosed at age 11. So I am very aware of the immense range of symptoms anxiety can mimic.

I knew, without a doubt, this was not anxiety. This was neurological and it wasn't a good sign at all.

So I read about it and I forget how, but I stumbled upon TD and it caught my eye because it was specifically caused (typically) from first generation antipsychotics such as my abilify.

Instead of going to the doctor (Out of fear of being diagnosed with a serious neurological disorder such as ALS or MS), I half-heartedly attributed it to that and continued my 10mg abilify as I had been taking it.

The problem I was facing was that my abilify has done wonders for my clinically diagnosed disorders, such as GAD, PTSD and specifically OCD. I didn't want to quit nor did I know that the proper procedure is to immediately discontinue (under doctors advice) said medication.

In fact, I was mistaken and thought that it would make it worse if I quit.

But these episodes that I would experience after oversleeping kept happening and got exponentially worse.

What was always odd to me was that it only was noticeable when I overslept and like magic, the symptoms would suddenly vanish around an hour after they began. As quick as they came, they were gone in the blink of an eye and I could continue my day as normal and not have to worry about the severe symptoms coming back until the next day, IF I overslept, which I do a lot due to my depression.

Now I know you're probably wondering why I didn't immediately let my doctor know...

Plain and simple. I had past trauma with a misdiagnosis of lymphoma when I was a child. Since then, I avoid check ups like the plague because I'm so afraid im going to be told I have a terminal disease. And frankly, I'd rather pass away from said terminal disease than know I have it and likely die anyway. Ignorance is bliss, I suppose.

But 2 days ago, this could no longer be ignored.

My neck was corkscrewed so bad and for the first time, despite how hard I tried, I couldn't even consciously fight it in the slightest. I could no longer intentionally even fight it. It had gripped me.

Then I noticed a new and VERY concerning symptom... my whole body was contorting. My spine and back would twist like a pretzel and I could not fight it.

This time.... an hour passed... no relief in the slightest. This was the first time it lasted that long.

Then another hour, still not a single improvement.

Roughly 2 and a half hours later, I woke my mom up and told her that I might be dying and I need to go to the ER immediately.

3 hours later... no relief AT ALL. 4 hours later, still contorting like a pretzel.

This was very concerning because I was struggling to breathe from how tense my abdomen, chest and back were contorting.

I was certain I was about to die.

Thankfully when I got to the hospital, I told the nurse I had read about TD and to my surprise, she actually knew very well what TD was and told me that this is likely nothing more serious than TD and thankfully started cracking jokes about it to me.

Then another great surprise, the doctor also knew what TD was.

I was not expecting anyone to know about it because it is a rarer and very specific disease caused under VERY specific circumstances.

So I had some relief mentally.

However, even after a shot of 1mg of Ativan, my symptoms weren't noticeably improving and frankly, that scared me that it was more serious.

But the doctor came back in and told me that he is very confident it was TD given that I had told him about the time range of my abilify dose increase in correlation to the severity and noticeability of the symptoms.

So he prescribed me 2 Ativan pills and a vmat2 drug (ven... something) and advised me to see my doctor before I got the vmat2 drug filled, as it can cause abnormal heart rhythms.

In fact, my symptoms were so severe that when they did the ekg just to make sure I didn't have an abnormal rhythm naturally... the ekg readings were apparently concerning, but the doctor told the nurse that the readings are off because my muscle spasms were so intense and severe that it was throwing off the ekg and thus he ignored the false reading and sent me on my way. But I just wanted to mention the ekg reading being off because that gives you an idea how severe my symptoms were.

So I was advised to cut my abilify in half, (5mg now) and follow up with my doctor and sent me on my way.

So I went home 5 hours later still contorted as badly as it was in the first minutes of the symptoms starting.

Thankfully the strain that the TD put on my body was so severe, I was exhausted from it so bad that I was able to sleep even curled up like a pretzel.

Then I woke up about 6 to 8 hours later and poof, the symptoms were gone.

Of course I feared the worst and waited for the hammer to drop as it always had before.

But 10 minutes passed and not a single symptom other than the tremors from my anxiety. Like I said, I can distinguish anxious physical symptoms because I am unfortunately a professional anxious person.

Then 20 minutes passed, no symptoms.

30... 40... and hour... 2 hours etc... and not a single symptom.

So I made the personal decision to go against the doctors advice to taper off abilify. I decided to cold turkey.

I havent had a single noticeable symptom. Im sure I still have mild ones, but they're so mild that I don't notice nor does it make me scared because it is nothing compared to how it was the day before.

I read that symptoms typically don't go away after quitting said medication, but they may improve.

See, I'm completely fine with having mild symptoms. I've dealt with anxious tics all my life. No biggie at all. My only hope is that the symptoms stay mild and I have hope they will.

I apologize for my entire life story, I am in a "high" right now from cold turkeying my abilify. I feel strangely euphoric and talkative tonight. Which I've experienced before when I lost my abilify.

I go up and down like a Rollercoaster. But frankly, I'd rather have these feelings of euphoria, dysphoria, skin crawling, bizarre thinking etc... from the withdrawal than I would even risking taking a morsel of my abilify.

Again, I apologize for my autobiography. I wanted to paint the picture the best I could.

I do have questions that I could not get answers to.

Most importantly, why were my symptoms episodic and only severe when I overslept?

I don't know if anyone has that answer, but if you do, please tell me.

The best I could come up with is that my dopamine levels were suddenly fluctuating going from resting to waking life. As I'm sure there's a certain "surge" of chemicals released upon waking.

But any answers, advice or insight about my Tardive dyskinesia would be immensely appreciated because I need constant reassurance because I am a silly hypochondriac.

If you've made it this far, thank you for listening to my story and I hope you all have a blessed life.

First experienced a tardive dyskinesia episode in 2018 from reglan and immediately quit taking it, however this week while hospitalized I had a much more severe episode from compazine, despite years of taking it with no problems. I was only aware of the risk with reglan but now I know it can be caused by other medications, I’m wondering specifically what meds I need to be avoiding, and is this something that I will always have?
My last episode resembled a seizure and then a stroke w facial drooping. It lasted several hours and I’m glad it happened while I was hospitalized because my doctors got to see it. I’m hoping that since I stopped the meds it won’t happen again

It has been a very scary journey for me, I posted my entire story in great detail.

I have a very, very serious case.

But always remember that, while it may be annoying, painful and to some, embarrassing (although its a disease, its not embarrassing at all, you are a victim of a terrible fate)... it is not a fatal disease.

Could it theoretically be a fatal disease? Yes.

But the chances of it being fatal are about the same as our earth getting sniper by a quassar from 2 billion light years away.

While it may, in some cases, feel like you are dying. You are not and you will not!

Please feel free to read my story. It's a long read, but i wanted to share the entire journey and especially my earliest signs that now, in hindsight, are very clearly symptoms of TD that I didn't recognize until it progressed into my neck, then head, then ultimately into my spine/back and face.

Stay strong, everyone. You are not alone ❤️

Taking my first dose of ingrezza I’m
Nervous but I cannot deal with any more of these facial movements my teeth hurt from grinding my teeth I’m always rocking and rocking and swaying and I do this pill rolling movement with my fingers normally when I’m sitting or walking it’s annoying and very tiresome and..it’s also fn kinda embarrassing. I tried austedo but it made me super angry. I don’t trust meds anymore because of this even happening I’m sorry I sound negative I’m just angry no body ever warned me this could happen. My psychiatrist first told me not to worry about my symptoms when I brought them up. I told my primary anyway and she said yes I should absolutely worry and went to a neurologist and found I do have tardive diskinesia. I pray this ingrezza works I am finally mentally stable and ready to move forward and now I have this. Anyway sorry thanks for letting me vent guys.

Im on reagila and olanzapin since few years. First I was twitching all over my body. Eyes, lips, fingers, toes. After taking magnesium most of them are gone. But now after taking olanzapin. While I try to sleep I make weird faces with my lips and when I sleep I wake up from weird lip movement. I also have increased anxiety Im really scared. I dont know what to do. During the day my tics are gone.

I very suddenly started getting muscle spams in my throat. Not painful but super annoying and exhausting. I’ve had 2 doctors mention Tardive Dyskinesia but they are not doctors that can officially diagnose it. I’m meeting with a neurologist next week.

I was wondering if anyone has experience TD in their throat area?