Mental Health Tardive Dyskenesia

[Jabberwocky]

Anybody had it and recovered?

I thought my lip smacking, teeth gnashing, and tongue curling was just a temporary side effect of too much stimulants - whether prescribed dex or illicit meth.

However, my doctor diagnosed me as having tardive dyskenesia as a side effect of all the anti-psychotics I’ve taken over the last 10 years.

Turns out 25 % of people on long term antipsychotics develop a movement disorder and only 30 % of those ever recover after discontinuing their meds. If they do recover it takes more than 3 years (he tells me). It’s basically untreatable.

I’m very upset about this because my psychiatrists never once mentioned that this was a potential risk of the drugs they were giving me.

Anyone else had similar experience?

 

[Fairy of the Flowers]

No but I've heard all about it, it's what put me off trying anything that had it listed as a side effect, I got put on quetiapine for my over thinking due to anxiety, I'm not even phycotic and started doing some weird stuff with my jaw or tongue on the first day taking them, it freaked me out as it sounded like the start tarkive dyskenesia so I stopped strait away as it can be perminant in some cases, I'm surprised you wasn't told as its a well known bad side effect, on all antipsychotics I think, how long has it been going on for?

Didn't you read the leaflet or Google the side effects, I'm so sorry to hear this it is really fucking scary to be told its untreatable in some cases, only time will tell

But what are they going to put you on instead of antipsychotics if you need them?

 

[Gormur]

Several years ago when I voluntarily spent some time in a mental ward, they fed me Haldol. Luckily the staff didn't pay attention because I always went to the toilet right away and spat it out. I knew what it did just by the foul taste it left behind and I started having this thing where it felt like I was somewhere I wasn't like my muscles were contorted and at one point my neck would turn one way but I wasn't in control of it

Anyway, that only lasted a few weeks and I never took any of those types of drugs again

 

[Juniper Bruhmomentius]

Thats why Im scared of taking my zyprexa. While it helps a shit ton the consequences are more likely to kill me than drug use.

 

[Flynnal]

It's sad that they don't offer barbiturates at in-patient facilities any more. I guess that's something they don't do any more. These older drugs were often better. That's what they used to use before these anti-psychotics became popular. Doctors would just give patients stuff like amylobarbitone tablets that they would take.

Trouble is, anti-psychotics are used when they are NOT needed - true classic schizophrenia is the only indication for these drugs, not fucking insomnia, not fucking depression, not fucking anxiety. Eg. someone is severely distressed (as I was recently) and they just throw anti-psychotics at them as though they are supposed to fucking work. They won't in these cases, they will make the patient worse. The other drugs I mentioned won't. They will help the patient.

Opiates are a good choice as well in this regard. If someone is under sudden severe distress, what is wrong with a morphine injection and talking to the patient about what is causing their distress?

Anti-psychotics I believe to be torture chemicals and I won't ever touch them. If it comes to it that I desperately "require" them for whatever reason, then I'll resort to an endone tablet, and if that isn't available, and crying doesn't relieve the pain, I'll just walk under a bus.

 

[Dick&Warty]

Was prescribed quetiapine but thankfully never had tardive dyskenesia, I've only ever seen it from that youtube channel 'dopesickjoel' when he shot a bad batch which turned out to be PCP and was given antipsychotics at the hospital, it looked horrific.

 

[Snafu in the Void]

I’m very upset about this because my psychiatrists never once mentioned that this was a potential risk of the drugs they were giving me.

That's horrible and sounds illegal to me. Fairly sure you could sue somebody for that if you were in the US. My doc was very informative and hesitant to give me antipsychotics even though I needed them at the time. He would constantly remind me every visit and ask if I had any symptoms of tardive dyskinesia.

Part of the reason I'm so biased against anti-psychotics are things like this. I can't even think of another drug that can cause permanent conditions like this.

Sorry you have to deal with this man.

 

[Jabberwocky]

Thanks everyone. I don’t really notice it too much and chew gum all the time to cover it up. i only became self-conscious about it when I decided to start dating again - but there is no way I can date when sticking my tongue out every five seconds.

I went to my GP for help and he prescribed me benztropine - however I googled it on way to pharmacy to find it is CONTRAINDICATED for tardive dyskinesia And may worsen it. I’m starting to feel like @Flynnal towards doctors now!

 

[Flynnal]

Part of the reason I'm so biased against anti-psychotics are things like this. I can't even think of another drug that can cause permanent conditions like this.

Honestly, I think antipsychotics should be contraindicated in anything except acute or chronic moderate psychosis due to schizophrenia or other schizoid-type disorders. They should be contraindicated for depression, for sudden episodes of emotional distress, and for anxiety. They are not appropriate for depression, emotional distress or anxiety.

SSRIs can help with anxiety if you are willing to accept sexual dysfunction (and the rare possibility of it becoming permanent, it does happen, look it up).

In my opinion, benzodiazepines like clonazepam 0.25 and 0.5 mg are acceptable to treat extreme anxiety or panic episodes. Alprazolam is too short acting to treat anxiety that lasts a day or so.

Morphine or barbiturates (amylobarbitone is good for this) for sudden severe emotional distress (such as what I went through when I nearly lost hearing in my right ear, for example). Antipsychotics would have made me jump off a skyscraper had I been given them. Valium does not touch the anxiety I experience, but Klonopin does a great job.

I went to my GP for help and he prescribed me benztropine - however I googled it on way to pharmacy to find it is CONTRAINDICATED for tardive dyskinesia And may worsen it. I’m starting to feel like @Flynnal towards doctors now!

I don't blame you. My ENT stabbed me in the back. He is now putting my future treatment for sudden hearing loss at risk because if an ED doctor reads the shit that he put about how steroids are not indicated and that I first need to prove I have sudden hearing loss (yeah fucking right, too late to start steroids by the time you do that, eh?), they might not listen to me and refuse steroids.

I am going to tell my GP that if this ever, ever, ever happens again I'll walk under a bus without hesitation and the doctor will lose their patient.

I am tired of doctors. I don't even want to bother with them. I can do a better job of treating my health problems than most of these fuckheads.

 

[Snafu in the Void]

@Atelier3

how long and what antipsychotic were you on? I'm curious.

I was on fairly high doses of olanzapine (zyprexa) and risperidol (risperdal) for about 9 months, and escaped relatively unharmed other than some gained weight. I still take them for psychedelic/stim comedowns but won't touch them otherwise. Man that shit is like a chemical lobotomy and gives you weight gain, man tits and shit like tardive dyskinesia scary drugs.

Every GP I went to prescribes stupid ass drugs, IMO. They focus more on general health not specific things like this, IMO. Have you ever seen a neurologist?

 

[TripSitterNZ]

the few times i take anti psychotics it felt like i was fucking dying on them my body spazzing uncontrollable extreme restless leg syndrome and the worst body pain i have ever felt in my entire life was on quetiapine and lsd that shit was like been trapped inside my own body for hours with the most twisted sensations in my body i ever experienced.

If could sue the doctor i would shit is horrible.

 

[necropolis]

Honestly, I think antipsychotics should be contraindicated in anything except acute or chronic moderate psychosis due to schizophrenia or other schizoid-type disorders.

I could not agree more. Too many doctors are far too cavalier about prescribing these drugs. In many cases they worsen depression and anxiety, and should never be used to treat insomnia.

I have unfortunately taken many of these drugs through the years, mostly as a result of psychiatric hospitalizations when my drug use would get out of control and I was deemed a danger to myself. Can't say that I've ever actually had full-blown tardive dyskinesia, but I have experienced what might be the beginnings of it - after taking 40 mg/day of haloperidol for almost a year, I began to notice uncontrollable muscle twitches in my neck, arms and legs. This happened again 2 years later after taking fluphenazine at 20 mg/day for slightly over four months. Luckily, it subsided after a few weeks in both cases.

I will be seriously reluctant to EVER take one of these drugs again - they are horrible in terms of side effects and the permanent damage they can cause.

To the OP, I am sorry to hear that you're dealing with this, and I hope that you can find a way to get better.

 

[Jabberwocky]

Hi @SnafuInTheVoid

I was on zyprexa, respiridone, seroquel and abilify for total 10 years. I was on seroquel the longest (about 5 years) and abilify quite long also (4 years). It was when I was on abilify that the tardive dyskinesia first became noticeable. I was only on a small dose (10 mg). Historically, I used to take massive doses of seroquel (like 400 mg) to deal with stim and acid comedowns And never noticed any movement disorder type-effects. I also got severe weight gain from all these drugs. However, my biggest compliant about them was intellectual /cognitive impairment.

I have not seen a neurologist yet. I have apppointment with new psychiatrist to get my case and medication reviewed and I’ll talk to them about seeing a neurologist about the dyskinesia.

 

[thegreenhand]

no personal experience to speak of but just wanna throw in my support

sorry to everyone that has to go through this. a lot of psychiatrists don't fully disclose what certain meds can do, especially with antipsychotics.

 

[Flynnal]

a lot of psychiatrists don't fully disclose what certain meds can do, especially with antipsychotics.

And they can expect lawsuits to unfold if they don't. I remember Abilify put me in such a brutal rage I could have so easily killed someone. I will never touch that shit again, not ever in my lifetime and I would suggest that it is dangerous for people with ADHD as it can make them violent - which I most certainly was.

 

[thegreenhand]

Yeah man I hear ya

and the shitty thing is that it’s such a common sentiment for people to say “oh why don’t they get on their meds” to others who are suffering from psychotic related disorders. Meds dont always work and like you said they can even make things worse. But people will shame you for not wanting to swallow whatever big brother psychiatrist hands you. It’s so fucked man

 

[awesome31311]

I’m very upset about this because my psychiatrists never once mentioned that this was a potential risk of the drugs they were giving me.

American psychiatrists tend to never tell you the side effects, but force you to sign a form claiming they did tell you