Tardive dyskinesia – a sign of iatrogenic injury from neuroleptics

[GiaK]

a new post: https://bipolarblast.wordpress.com/2020/04/04/tardive-dyskinesia/

I have tardive dyskinesia. I’ve not written about it. I can’t find a single reference online about it that doesn’t pathologize it..and DRUG it further.

This is a very brief definition taken from WebMD (and to be clear they do not know what it is)…but the description is fair enough.

Tardive dyskinesia is a side effect of antipsychotic medications. These drugs are used to treat schizophrenia and other mental health disorders. TD causes stiff, jerky movements of your face and body that you can’t control. You might blink your eyes, stick out your tongue, or wave your arms without meaning to do so.

I’m not going to say much now except that in my experience it is, in fact, a heinous and difficult condition to live with. It’s also NOT a disease process. It’s the body attempting to DETOX from the poisoning it’s been subjected to. It works to help clear the body of infection and pharmaceuticals which sometimes go hand in hand. I have surrendered to it and it’s been an incredible ride of astonishing transformative healing as well as a source of insight in and of itself.
 

I am posting this only because there isn’t any understanding of what it is anywhere from what I’ve seen. And absolutely no one outside of conventional circles speaks of it at all. I’m hoping that we might change that or you might tell me what I’ve missed.  We need one another to heal from it as well. It takes on a life of it’s own and is insanely challenging. I don’t know a single soul with it. Most people who develop it are lost to psychiatry in the worst way and generally silenced because of it.
 

If you have a unique understanding of tardive dyskinesia and have lived with it, I’d like to hear from you. We can keep the conversation private if you wish.  When you leave a comment it’s not automatically posted so just request that it stay private if you want that.

Please share this post in mental health forums too if you are members of such places. 
 

I may not get back to comments immediately. I may choose to take it to email instead of the comment section as well. I am honoring my personal life now and so working with this site differently.
 

thank you.

if you choose to share  in forums or on social media use this link: https://bipolarblast.wordpress.com/2020/04/04/tardive-dyskinesia/

[GiaK]

I knew people with it when I was a social worker in the system with folks who'd been completely marginalized and we're no longer part of normal society. I have met no one with it since then.

[GiaK]

so...I took this off my site. I'll leave it here but please keep the content on this site only. I was getting advice from people who didn't know what the F they were talking about and that really triggers me. This is why my site comes down with frequency...I can't deal with that sort of thing anymore. I will no longer post this kind of personal stuff on the site. It's just now that I'm stuck at home I can't really continue what I was starting out in the world and so a post of this nature emerged. 

 

I don't imagine it's going to be resonant with most folks on this site so if moderators just want to remove it that's fine too.

[manymoretodays]

Hi GiaK, 

And hey, so great to see you posting here!  You got me here and I am quite grateful for that.

 

I tried to PM you, but it won't go through, earlier, and wondered if you would like me to merge this topic with our pre-existing topic:

I didn't want to offend you, my friend, and just move it.

And oh bother.....ugh......I'm so sorry that you had to take it down from your site, due to triggering.

 

The other option too, to consider.....would be if you want me to move it to "In the Media" for further discussion with people who can relate, and help with understanding the issue.

5 hours ago, GiaK said:

I am posting this only because there isn’t any understanding of what it is anywhere from what I’ve seen. And absolutely no one outside of conventional circles speaks of it at all. I’m hoping that we might change that or you might tell me what I’ve missed.  We need one another to heal from it as well. It takes on a life of it’s own and is insanely challenging. I don’t know a single soul with it. Most people who develop it are lost to psychiatry in the worst way and generally silenced because of it.

 

And yes, we do.  Very much so.  Need each other to heal.

 

And okay.....so, the options:

Leave as a free standing post in symptoms and self care for furthering discussion and support.

Merge with pre-existing topic

Move to "In the Media" forum?  Books, news, blogs, video, radio -- items related to the psychiatry industry and adverse effects of antidepressants.

 

Let me know what you'd like to do now?

I'm totally okay with this post, being here, and all.

 

It might resonate with folks here.  And again, so sorry you had to remove it from your own Blog due to triggering, and less than thoughtful comments.

 

I am still comforted when you post here, GiaK, truly.  And thankyou again.  Not just for getting me here, but all of the work that you do, and that I was able to gain from, and learn, and grow from, and well........heal.  Here is another.......Thank you.   And again.....and again........❤️

 

L, P, H, and G,

moderator manymoretodays(mmt)

* p.s. I did bring this to the attention of the other mods as well, as I wasn't certain whether to merge it or not

 

Edited April 4, 2020 by manymoretodays

[UnfoldingSky]

Hi Gia,

 

I had a "mild' case of tardive dyskinesia and have recovered from it. Like you I tended to view it as something other than a disease. I found a few things that I think may have helped me, non-drug healing modalities, I can PM you if you want, no pressure to try anything.

[GiaK]

I respond to it in every moment and so everything I do is helping it at this point...it's just a really intense issue...it's doing a job however and it's happening. I'd be happy to hear your experience. I don't have PM's on here. Are you not comfortable talking about it here? I like that people can contribute their experience or learn from yours during a "conversation." I understand if you don't want to do it publicly as well. I don't want to open up PMs however. thank you.

[GiaK]

I wrote the original post for my vsite...I treat different social media platforms differently...so some of what I said about discussing the issue was particular to the site. 

[UnfoldingSky]

Apologies Gia that it's taken me so long to respond!  Once the pandemic hit I was hit with a slew of problems.

 

How are you doing?

 

I will probably have to write this in stages as it's going to be lengthy..

 

I should say first that I'm not any kind of medical professional and that each person is different and what works for one person may not help another.  This is simply what seemed to help me.

 

Okay one of the  things that seemed to help me was the herb stinging nettle taken as an infusion (strong tea made of the leaves only.)  Stinging nettle apparently contains magnesium and that may be why it seemed to help a bit with TD.  There are of course contraindications for taking stinging nettle, I can't recall all of them though I do remember that it shouldn't be taken by pregnant women if the plant is flowering or was about to when harvested (I would just err on the side of caution if it were me and not use it at all as if you buy dried leaves you can't know when they were harvested.)  I believe the plant also can have a blood thinning effect so that if someone is already on blood thinners or about to have surgery  or had some medical condition whereby blood thinners are a bad idea to take they would probably be best to avoid using it.  It's said to be a diuretic too, so people who need to avoid those take note.  Also for anyone reading who currently is taking pills of some sort it is always advisable to deeply research drug/herb interactions before taking a herb as it seems one of the most likely ways to get a problem from herbs is to mix it with certain drugs. I have no idea what stinging nettle can safely be combined with and what it can't, please make sure to do your own research if you intend to try this. 

 

 

[Guest]

On 4/18/2020 at 10:32 AM, GiaK said:

I wrote the original post for my vsite...I treat different social media platforms differently...so some of what I said about discussing the issue was particular to the site. 

i developed TD coming off antidepressants and have had it for 10 years now, never did i have it before i took the meds, and its accompanied by worse symptoms, its debilitating, like the most furious tourettes you can imagine. i have moments, brief moments where its gone. im looking int supplements or even antihistamines to cure it...

[GiaK]

Tardive dyskinesia took over my life so I did with it what I do in general. I surrendered to it and stayed with it in total mindfulness. It turns out that it's all about helping us detox the body...the movements are so that mixed up neuropathways and subtle body detox pathways that have gotten messed up by micro-organisms can right themselves. It did take over completely but for me, in allowing the takeover, a profound healing process took over. Not recommended if one is not able to completely surrender to the process. It ain't no easy thing...it brought me down deeper into hell realms I visited at the beginning of this process all over again...for deep healing. this path is pretty dark...it also brings great joy...but not without a very very high cost. 

[DaBro]

I developed TD 20 months after a cold turkey. It was mainly leg kicking and clawing of my hands plus a facial palsy and stiff and twisting tongue. It typically happened for 10 minutes after waking up but could last an hour. 6 months on it’s pretty much stopped. I was on a FB ‘Zoloft should be illegal ‘ group and TD was well understood by the admin who has unfortunately since stood down. In some cases it seemed to be permanent. Fortunately mine seems to be nearly gone. 

[UnfoldingSky]

I forgot to update the rest of what helped me so here it is...In posting this I want to emphasize I'm not a medical professional of any stripe, so please understand I cannot predict if this will help anyone else. I don't wish this post to be intended as trying to push anyone towards trying anything too. I am simply sharing my experiences.

 

I also seem to have been helped by acupuncture.  I had to be very careful about picking an acupuncturist and made sure they didn't treat me for "mental illness" as some of those kinds of treatments may be too activating for people badly hurt by pills. I emphasized a need to calm  my nervous system.

 

After a session I would have a slight increase in twitches, almost like my body was releasing stored energy, before going back to baseline (might take a day or two.)    Over time the twitching decreased, and I have not had it in years.

 

If you are someone who has a really severe case that impacts breathing, or you feel that you could develop a TD breathing issue, I would not try acupuncture.  Obviously you don't want to risk making it worse.

 

And I found the key here was to find an acupuncturist who seemed empathetic, compassionate and to be a good listener.  I saw one who did deal in neurological issues, that practitioner turned out to have an attitude, and sadly was even doing things that are not acceptable (like talking to me about other patients).  The next one I visited did not specialize in neurological issues but honestly was far nicer, empathetic, seemed to be fairly non-judgemental, and did seem to help.    

 

P.S.  I had acupuncture once when I had akathisia (before I had TD) and I have not personally found acupuncture to help for aka, so anyone reading who has both TD and akathisia, please be aware acupuncture may make akathisia worse.  When I had akathisia I was on pills aimed to control it, and what I found was the acupuncture would cause the akathisia to come out a bit more, it would negate the dampening effect the pills had on the need to pace.  I have heard of one person using acupuncture successfully for akathisia.  However it took a long time, involved many treatments and I'm not sure how things went in the interim. (I am not suggesting in putting this out here that it will work for anyone reading too.)  Of course it could be their case of akathisia also cleared up on its own and the acupuncture really was not the reason they healed. 

 

And I had acupuncture for TD after I had healed from the dissociative states the pills had caused me, so de-personalization and de-realization were gone then. I am not sure what the effect would be if you have TD and still have either or both of those.