u/Itchy-Poet5412

This all started after going off Abilify and/or Hydroxyzine. I also have akathisia and dyskinesia. I’m waiting on apt with an MDS. Does this sound like dystonia??
Muscle tightening/cramps that hops from one place to the other. I have the following:
Leg/calve cramps
Neck cramps
Back cramps
Tongue stiffening (not visible to others just very uncomfortable for hours)
Throat tightening (this one is THE WORST out of them all I think I’m being called home every time)
Sometimes jaw tightening

Since I’ve been off the causative med, should it stay this way or will it get worse?? I’ve noticed if I take certain things it hurts badly. I can’t take anything. I am only taking half my dose of propranol everyday now. Off psych meds completely for the first time in ten years. Is there any hope of this and dyskinesia going away eventually??

I didn’t have any signs on the meds. This all started when I went off. I took Abilify for two months and Hydroxyzine (HIGH doses) for one month.

What can I say this has been a long exhausting road and I’m not sure there is any hope for me left.
My akathisia started severely last December after withdrawing Abilify. Since it was so unbearable my psych prescribed me high doses of hydroxyzine (150mg per day some days) this helped me at least sleep but I did not notice a reduction in the akathisa. She also started me on propronaol which greatly helped my anxiety through all of this. Anywho about 1 month of hydroxyzine I was ready to be done with meds except propranol. About 2 weeks after stopping hydroxyzine in early March, I started developing what I now know is tardive dyskinesia and dystonia. I have painful, long lasting muscle spasms in all body parts including my throat. It just migrates from one place to the other. I started getting involuntary jerking, eye blinking, and mouth movements. This all progressed pretty quick from March to Present.

So I started researching treatments for TD.
Ingrezza - lasted 5 days got intense akathisia again, then a Dystonia reaction of my hand stuck in a claw position.
Austedo- lasted one day it made my muscle spasms cramp BAD all at once.
Vitamin E- helped TD but ramped up akathisia and caused pin/needles

Here’s where everything really gets messed up. I tried clonidine at a low dose for 3 days and my akathisia and pins/needles was off the charts. Back in acute, severe, wanting to end it.

Since stopping the clonidine I have a paradoxical reaction to things that once worked. Benadryl, and the worst… my propranol seems to be turning against me now. I took it yesterday and got the worst akathisia. This was my only saving grace preventing me from panic attacks and my heart rate sky rocketing.

I am truly at a loss. I really do not see a way out of this. If I knew the TD wasn’t likely permanent I would just go off of everything and see how it goes. My akathisia is capable of going away because it has before. It seems to be a more temporary response to nervous system changes for me. I am not sure I am going to survive all of this truthfully. I see no options. I’m about to lose my job. I feel like I can’t go out in public when the TD ramps up. I have zero quality of life. I’m 33.

So after ten years of antidepressants and two months of a low dose antipsychotic, I developed withdrawal akathisia, dyskinesia, and severe muscle spasms that resemble Dystonia but hasn’t been diagnosed yet. I know for a fact I had akathisia from antidepressants because I have had it when I went off them before. But never had dyskinesia until withdrawing the antipsychotic.
The akathisia eventually died down as time went on, but the dyskinesia persists.
Everytime I try to take something to help the dyskinesia, boom the akathisia is back full force. Like not just mildly. But I need to die right now feeling.

So since I can’t treat any of these- am I just expected to live the rest of my life like this?? Choosing one or the other hell to endure??

Anyone else dealing with all of this??
I’m 33 and can’t imagine living the rest of my life unable to take any meds or be put in the hospital for something where they have to give me meds and it make any of these disorders much worse (tbh the dyskinesia effects my throat, face, and limbs so I have no idea how it could get worse)

I can’t believe this is happening.

If you got TD from coming off a med meaning no symptoms ON the med.. when did it peak.. like stabilize and stop progressing? What are your symptoms/movements?
I feel like mine gets worse every day. And every day is torture because I don’t know what to expect.

I feel so helpless. I’m 32 yr old female. Someone tell me this gets better. After withdrawing from Abilify and hydroxyzine I developed Tardive dyskinesia and dystonia. Basically the meds were masking the damage. I had zero symptoms on the meds. I was on Abilify for 2 months and hydroxyzine 50mg 3x daily for 1 month.

The dystonia manifests as painful muscle spasms/stiffening for minutes to hours at a time. I have it everywhere including my throat. My throat will tighten up feels like someone is choking me and I can’t breathe well.
The dyskinesia is limb jerking, mouth movements, and eye blinking. I also have small muscle twitches everywhere.
Yesterday I had two episodes where I couldn’t breath well and my resting HR was like 140. It was not my typical panic attack.

I have tried ingrezza and Auestedo both which cause massive akathisia and make my dystonia worse somehow. If I take Benadryl it helps dystonia worsens dyskinesia. I tried vitamin E and somehow it made things worse too.I tried Klonopin for 3 weeks. I’m at a loss because I know the most helpful thing to do would be to abstain from all meds as long as possible but when it’s really bad I get majorly actively suicidal. I actually cannot overcome the feeling of extreme anxiety I get when I get movements especially in my face. I can handle the limbs somewhat. The anxiety is so bad I feel I have to escape my body that instant. I cry almost all day. I’m going to lose my job for sure but they are being gracious enough to let me work from home one more month.

I want to end it all every single day but I stay for my husband and child. I can’t live like this though. If it doesn’t get any better I really don’t think I can do it. I want to believe it gets better but the truth is I’m so sensitive to any medication I’m positive the meds did permanent damage.

It’s been 3 months off the hydroxyzine and 5 months off the Abilify. I started noticing the movements about 4 weeks off Abilify but then was put on hydroxyzine around the same time and it magically went away until I went off the hydroxyzine. The only med I take now is Propranol 20mg once a day.

Please help. How do you deal with this??? I can’t imagine my whole life being like this.

Just want to see if there is any solution for this.
Ever since I got Covid in 2020 I haven’t been able to tolerate caffeine at all. It’ll give me a high heart rate, dizziness just overall feelings of unwell. So I’ve avoided it. Well flash forward to now- I can’t take medications that used to I didn’t have a problem taking. Things accumulate in my system way too high.
I quit drinking alcohol about a year and. Half ago and now I build up drugs/supplements in my system even more high I guess because the alcohol isn’t in its way.
Side note- I started taking a 2nd generation antipsychotic at the lowest dose last Fall and only took it for two months. Now I have tardive dyskinesia. I truly feel like because it accumulated so high in my system I got it.
I tried taking a vitamin last week and I took it for 3 days and now I have nausea, fatigue, and what feels like nerve damage because my legs tingle. I’m truly scared because it seems like even when I need to take something, I can’t.

Is there any solution to this? It has to be Covid related because none of this was a problem before I got Covid. I used to drink 7-8 cans of caffeinated drinks a day unphased. I took meds and vitamins with no issue. This is devastating because now that I have tardive dyskinesia I can’t even tolerate the meds or vitamins that is suggested to take for it so I’m miserable.

Anyone here get TD from a second gen antipsychotic and have it go away?? I got it after being on it only 2 months. Now I regret going to get help every single day because I was so much better off before.

I had severe akathisia from antipsychotic withdrawal back in January-March. It got better at some point. Well in March I started developing Tardive dyskinesia after going off of high doses of hydroxyzine. This has been going on for almost 3 months. I tried both TD meds both caused akathisia for me unfortunately. So I read up and saw Vitamin E can help some people. I took 3 doses of Vitamin E and now I am back having akathisia - after being over it for awhile. I can’t function with the TD. I have to do something but everything causes issues.
Question- the vitamin E I took was the synthetic version and I have since ordered the all natural mixed brand. Would this make a difference possibly??? I feel so defeated. I had finally got the akathisia better then ended up with TD in my limbs and face. I took antipsychotic for two months. Before that was ten years of antidepressants. Now I’m afraid the akathisia is here to stay.

I am severely depressed because I developed tardive dyskinesia after being on a low dose antipsychotic for only two months. I’ve been off of it for several weeks now and instead of getting better it just gets worse everyday and goes to new places of my body. My teeth hurt from grinding them, my arms/legs jerk, my eyes have episodes of blinking involuntarily, my mouth making movements, I have tremors that make me weak. It’s all over my body.
Everything says it’s permanent. I’ve been to neurologist, my psych .. I’ve tried the only drugs on the market for TD and failed. My brain is broken and I’m no longer meant to be here. I panic and throw up/cry everyday because my body is moving out of my control and I don’t have the mental capacity to get through this everyday.
I beg to die every night. Last night I swear I couldn’t breathe at all and I was actually a bit relived because maybe that meant I could get out.. where that used to would frighten me.
I have a kid and husband, and a good job that I love but haven’t been able to work in weeks.. other than TD my life would be perfect. Ive been sober from alcohol almost two years and for what???
How did this happen to me??? I want to go.
Just needed to vent. There’s not many people in the Tardive dyskinesia group I guess because it’s fucking rare and only I would get it.