Going to The ER For Tardive Dyskinesia – Off Meds Again

Last week on July 15 (wow it was only last week?! Feels like an eternity…) I went to the ER for what I THOUGHT was a panic attack, but it turns out was actually a really messed up side effect of the meds (Latuda 60mg) that I was on. Been off it since, and feeling pretty good! Today is my first mild depressive episode but it’s not so bad 🙂

Anyway, this is what happened. Around 9pm on July 15 I took the Latuda and almost immediately felt like something had shifted within me — it came with dizziness and blurred vision. About a week leading up to this, I’d felt pretty off when I took the meds, but brushed it off as drowsiness that was common with the Latuda and would just immediately go to sleep.

I tried doing the same that night, but when I lay down, I could tell something was very wrong. I can’t really explain it but my perception had totally shifted and I felt like I was in a void. The shadows in the room looked off in a strange way which freaked me out, I didn’t feel comfortable breathing to calm myself down, and the worst part about it was that MY EYELIDS HAD STARTED SHAKING and just wouldn’t stop, making sleep (and even meditation) impossible. I lay there trying to calm myself down for about an hour, hoping the eyelid shake would go away, hoping I would drift off to sleep somehow, but then my arms and legs started to shake too and I was WAY too uncomfortable. My thought patterns were off too… I wondered if it was anxiety but my mind was like void of thoughts…I was freaking out but felt it in my BODY…hard to describe, but I was scared. I wondered if I was having a psychotic episode. I wondered if I would be like this forever. I wondered if I would die.

Finally I decided to get up and tell Eddy about it, and he immediately thought it was an anxiety attack. When I tried to talk to him I realized I couldn’t speak correctly, and it was hard to walk because everything was shaking and I felt so restless. I told him it might be a side effect of the medication, and he helped me induce vomiting to try and get the medicine out of my system. When I didn’t feel better afterwards, I agreed with him that it must be anxiety, and he tried putting a movie on to calm me down. It was impossible to focus my eyes on anything though, and the “void” feeling within me was so disconcerting I couldn’t help feeling hopeless.

After about 3 hours of Eddy trying to calm me down, me going back and forth from trying to throw up, to my room to try and sleep, and back out to just be around Eddy because I was so upset, nothing got better. It was like a bad trip, but WORSE because I HONESTLY DIDN’T KNOW IF IT WOULD EVER END. Trips have arcs, but this was just the SAME for HOURS. Eventually I said we needed to go to the ER because I knew I needed to go to sleep and as long as my eyes and body were shaking I wouldn’t be able to.

The ER of course had no idea what was wrong with me, but wrote it off as anxiety and after X-Raying my chest and testing my heart with everything normal, they gave me an Atavan to sedate me THANK GOD. It was torture going to the ER with COVID going on right now, and having to wait while my whole body was shaking and I was in a strange pulsating blurry void. Thankfully it worked and I was able to go to sleep. I still felt a little weird the next day and for the next couple days, but I had mostly reset.

This whole experience was probably one of the most terrifying things I’ve ever gone through, because somewhere deep in my heart I felt like it was never going to end. Even though Eddy and the ER said it was anxiety, I also somehow knew that it was most likely the meds. I immediately got off of them because I was so afraid of it happening again, but also avoided looking up side effects because I was so shaken… A couple days later when I thought about going on my meds again and finally looked it up.

“High doses or long-term use of lurasidone (Latuda) can cause a serious movement disorder that may not be reversible. Symptoms of this disorder include uncontrollable muscle movements of your lips, tongue, eyes, face, arms, or legs. The longer you take lurasidone, the more likely you are to develop a serious movement disorder.”

I saw this and got SO UPSET. “A serious movement disorder that may not be reversible”?!?! So I COULD’VE TOTALLY BEEN STUCK THAT WAY!! Upon looking into it further, I found out that antipsychotics cause this condition called “tardive dyskinesia” which causes involuntary movements in your body…EXACTLY what I was experiencing. When I talked to my psychiatrist, she said it used to be more common with older antipsychotics and it’s rarer with Latuda because it’s newer. So that’s why she didn’t TELL ME?! There’s a huge problem when this has been a common occurrence with this medicine which I read, tends to happen typically after being on it for 3 months.

Why, after 3 months, does it become more common to develop tardive dyskinesia?! THIS SHIT IS SOOOO DANGEROUS!! I CAN’T BELIEVE I WAS EVEN TAKING IT!! If I had been on that medication longer (this was the first time I had stuck with it consistently for 5 months), it more likely WOULD’VE been permanent! The thought of being STUCK that way is completely TERRIFYING!! I’m so grateful it happened to me early on, almost as if to say “get off this shit, it’s BAD for you.”

NO ONE SHOULD TAKE LATUDA. IT IS DANGEROUS.

But I suppose any pharmaceutical drugs are dangerous…which is why these side effects even exist. It’s so sad that we live in a world we do many people have to take these dangerous things, in many cases having to actually LIVE with these horrible side effects in order to control their mind. It pisses me off really… this MODERN WORLD. So many people are suffering!!

I used to think I was invincible, that side effects would never happen to me. Which is partly why I didn’t really take them seriously. Yes I looked up the side effects when I started Latuda, but didn’t think much of them because I figured they wouldn’t affect me. I was wrong. And I’ve learned an important lesson. Even looking at the rest of the side effects…that night I experienced so many of them:

  • drowsiness
  • dizziness
  • nausea
  • diarrhea
  • stomach pain
  • shaking
  • muscle stiffness
  • mask-like facial expression
  • inability to keep still
  • restlessness
  • agitation
  • blurred vision
  • very stiff (rigid) muscles, sweating, confusion, tremors, feeling like you might pass out, or
  • twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs

NEVER AGAIN.

After I spoke to my psychiatrist about this she prescribed me Lamictal, but honestly I don’t want to be on meds anymore. Yes my depression and suicidal ideation can get pretty bad and I can have rapid cycling mood swings. Although it’s hard to deal with, I feel like it’s not NECESSARY for me to be on meds…especially because now I’m just so damn scared of them.

This trip to the ER dramatically shifted something in me. It felt like a sign of a death that needed to happen. Originally Eddy was telling me he thought it was anxiety because there was so much going on in my life.

I finished my Kundalini Yoga Teacher Training program online last month, and because I was having a hard time balancing working from home in quarantine, and because I had taken on 2 life coaching clients and wanted to focus on art and my comic, I had decided I no longer wanted to certify to become a Kundalini Yoga Teacher. However, I did so well in my practicum during our last session that Jen told me to reconsider certifying. I did for a moment, but backed out again when we were supposed to pick our time slots, and this time Mary tried convincing me to do it. At this point I could tell maybe this was just an old pattern of me trying to run away out of fear and avoidance, and since I had been doing this program for 10 months, sure I might as well do it.

But agreeing to design 6 classes to get up and teach sent me into manic “final exam” mode, and not only that I got way too excited about trying to launch my brand/healing program “Hasthira” with the onset of my classes. This meant me trying to get a flyer done along with a website, of which I had none of the art I wanted to do completed. I didn’t realize what I was doing to myself, the pressure I was putting on myself…that was all just coming from me. I succumbed to really unhealthy habits of trying to do way too much, so really this incident seemed like it was trying to also teach me to learn how to chill out, rest and take care of myself. Before I found out about tardive dyskinesia, I was even wondering if it was a cause of the meds suppressing my mania that was activated by all the work I had to do. But now I see that…yeah maybe this all happened as a sign from the universe to A) Stop pressuring myself so much and B) Get off the meds.

When I recounted all of this to yoga mama Jen at our sound lesson last Sunday, she gave me a wonderful exercise about dealing with pressure. She told me to get all of that pressure out on paper, and have that physical representation of it so that whenever I feel the pressure, to look at that paper and know it’s THERE, not inside me — to separate myself from it in that way. I haven’t done it yet because breaking down to Jen really felt like the release I needed to get rid of it, at least in that moment.

Jen also told me that she helps people get off their meds, and that if I really wanna get off, I need to become really aware of all my mood changes and behaviors, to know how to handle them when they come up. She also told me I need to really watch my diet, because bad food like junk and fast food will flare up the mood shifts, so she suggested doing her 40 Days To Optimal Program for the second time, which I AM doing. She also said if it gets bad again, she has supplements to give me that she thinks might help. It was so amazing to get this type of support…and I feel really good about doing this.

I started this blog because I didn’t want to be on meds, and I wanted to become more aware of my moods, to do just what Jen was talking about. So much has happened since then, and this Kundalini Yoga Teacher Training program has really changed my life in ways I could’ve never expected. It’s shown me how important Kundalini Yoga is in my life — how it has helped me reconnect to myself and find a middle ground and stillness within me that I never thought was possible. If I’m vigilant about my practice, no matter what mood I’m in…I know I’ll be ok. The program has also shown me the importance of community, and what a great community even looks like. Through The Yogi Tree I’ve found my tribe — Jen has really cultivated a beautiful safe space where it’s okay to be vulnerable, where you can experience the waves of life and express them and be loved and accepted for it…having a space like that has truly changed my life, and I wish everyone could experience something similar, especially those struggling with mental health.

This post is already a novel,but again this was long overdue. I’m so grateful for this quarantine space to do the work I’m doing, and so grateful that I am still alive and well after such a terrifying incident. Upon reading reviews of Latuda, I’ve found tons of similar accounts, and my heart goes out to everyone suffering from these horrific side effects just to try and get by in this world. Really hoping these alternatives I’ve found work for me in the long run…gonna make a deeper effort than I ever have.

Side note: I taught my first Kundalini Yoga class yesterday for certification! 5 more to go!! 😀 I was so manic trying to prepare and write the series, and it was such a high to finish teaching my first one that today I’m experiencing a crash from it…but it’s not so bad. Just gonna try and take it easy, which is hard for me to do. But I’m determined to learn how to relax! Survival depends on it!

Anyway, here’s the flyer with details for my online Kundalini classes, just in case you’re interested! I live in Southern California so the time zone is PST!

Confessions From Quarantine 04

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We all put up a facade to the external world to hide the parts of us we don’t want anyone to see. If someone asks us how we’re doing, even if we’re having the shittiest day we’re not expected to actually talk about it. For people who feel so intensely and deeply like myself, it’s tough to show up for work everyday and even in a great environment, still be so affected by those around me. Having to work from home for an extended period of time has taught me just how much energy I naturally expend around other people to project this “bubbly” persona. Some days yes it would be genuine if I was feeling it, but most days I’d be depressed and anxious, worrying what other people will think of me if I CAN’T be in a good mood. And this feeling would take over my entire day, making work absolutely MISERABLE. Those FEELINGS were all I could focus on. For me, there’s a certain shame in not being “on” for people, even though my logical mind tells me that it really doesn’t matter, no one cares, and everyone has their own shit to deal with. It’s a huge part of why I quit social media. It’s unhealthy to feel like you need to “portray yourself” a certain way to the world. I knew that pattern I had developed needed to be changed, to be healed, but there was never any time to really do it.

Having to stay at home has finally made me sink into who I really am, accepting that there are different sides of me that need to be honored and expressed. It’s taken a lot out of me to hide these parts of myself for so many years, expecting that someday I WOULD just be able to just be happy and bubbly for people ALL THE TIME and come back into the world. Absolutely ridiculous. It just got worse! Having the opportunity to slow down has allowed me to shift that perception of feeling that I need to “be something” for other people. After living so much of my life moving WAY TOO FAST to really take in and enjoy ANYTHING, I see now that slowing down IS actually an option, and it’s so necessary for someone like me. In order for me to stop feeling so much shame, I’ve decided I HAVE to talk about who I really am in order to move past this wall that’s gotten so high over the years. Hiding our true selves takes a HUGE toll on us that just piles up over time until we’re crushed under the pressure. It’s so important to just…learn how to be you.

Phew! Been meaning to say this for quite some time! It’s funny how liberating even drawing that image of me was….

I set out to do this comic for “art therapy” reasons, but I guess I really didn’t expect to feel what I’m feeling working on it. For me this whole thing is a legit life reflection session…it’s like sifting through broken glass to find pieces of gold.

When I did this page I was the vibrating, pulsing kind of manic and I feel like as much as I tried to control it, to me it shows through even in how I wrote it. I love that I’m learning how to channel my emotions into this… it’ll be so valuable to look back on when I’m in those dark times 🙂

And such a great release to finally let go of all this!!!