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!

The Pain of Duality

“Grief is the space between what you expect and what you get.” – Dan Harmon’s Therapist

Yesterday was my first day as a character designer on Rick and Morty. I felt really lucky because it ended up being one of their monthly screening parties where they show a finished episode and have pizza and beer and do a raffle. In the beginning the creators Dan Harmon and Justin Roiland got up to say something before showing the episode, and Dan’s speech really got to me. It’s been a rough season and a lot has happened, and he wasn’t afraid to reflect that in his speech which was so admirable to me. He mentioned a “sociopathic god” and how we don’t know if he loves us or hates us so what we end up getting is “randomness”, and how his therapist said that “grief is the space between what you expect and what you get.” At the end when he was thanking the crew for their great work, he said that as creatives our minds are different, and basically how we should embrace that. He said something like “so have your anxiety, depression, autism—whatever! Your brains are brilliant how they are, and because of those brains coming together we’ve made the best cartoon in the universe!”

This REALLY got to me, more than I even realized. I was still contemplating it in sadhana this morning, and it turned into a meditation on the nature of duality and mental illness. I feel like this year I’m really only starting to feel the real effects of my bipolar diagnosis from last year, which I can only say because of a drastic perspective shift. Working in animation has always been a love/hate relationship for me, because even though it IS a dream come true and what I’ve always wanted to do, working the jobs themselves simultaneously makes me hate myself for my current skill level, and also makes me wanna quit and do my own thing because I feel like I’m wasting away helping someone else complete THEIR vision, even though I haven’t felt like I have adequate skills to make my own thing ANYWAY. But starting at Rick and Morty and hearing Dan’s speech…I couldn’t help but feel welcomed in the best way possible. I felt like because of what these creators experience, they’ve created something really special…something that has managed to become the most popular cartoon on TV and find a place in cartoon history for a reason. They are able to inject existential angst and the struggles of life in these high concept sci-fi adventures which lightens it up enough to be digestible by the general public, and make everyone who watches the show feel like they’re not alone cuz “Hey! Someone else is feeling this way too!” Hearing them talk, especially Dan, made me feel like it was DEFINITELY the place for me. A place that understands and welcomes the pain of existence…a place where you can just be. A place where I can truly work on a show with a message that I’m proud of because it’s the message that I too want to spread. 

Anyway. All of that stuff made me realize that as humans, we ARE duality manifest. ALL of us. And within the duality we experience, we begin to cling onto SPECIFIC aspects of duality and obsess about them. For me…something that hit me real hard today was noticing that I go back and forth between thinking mental illness is real and thinking it’s fake. Back and forth between believing I’m “bipolar” and wanting to just attribute what I feel to “being emotional” and I’m just how I am because of my past and environmental factors. Nature vs nurture right? But what Dan said about artists brains made me think…

Diagnosis or not, EVERY SINGLE ONE OF US HAS A DIFFERENT, SPECIAL BRAIN. That brain makes our minds function in complex ways that we spend our entire LIVES trying to cope with and figure out. But I think…as a human…this is always how it was meant to be.

The fact that I’ve been stuck in the duality of “bipolar or not” shows me that, even though I wanted to kinda “transcend the label,” I’ve still been focusing too much on the “label” without fully accepting how I actually am. I suppose this is the first step to acceptance…and it’s not that I’m necessarily trying to accept the diagnosis itself, I’m more just trying to accept MYSELF — myself and how my brain makes me think and function in this reality. It’s incredibly liberating to see that this is one of the prisons ive been trapping myself in. Now hopefully I can remind myself I’ve come to these conclusions next time this arises! That’s the challenge, right? Haha!

Something else that came through during sadhana this morning was this thought of “are we all just constantly somewhere on this duality spectrum until we cross a line from light to dark, negative to positive?”

Maybe “bipolar” can just be thought of as a term for people who cycle between those opposites quicker than others, who make their home at the actual POLES rather than the in between. And maybe this definition is an easier way for me to accept how my mind operates.

In a similar way, people who are depressed are more inclined to the negative pole. We’re all just vibrations and frequencies anyway right? And one of our goals in life is to raise our frequency go move more toward the light? Easier said than done but…that’s why I’m doing this Kundalini Yoga Training! 

In sadhana, the song choices that my teacher picked were a completely different vibe than yesterday. To me, they all sounded melancholy, somewhat urgent, yet angelic…seeming to express “it’s tough to live in a world with duality, but that’s what makes it beautiful.” 

This past weekend we were learning yoga nidra, and one offshoot of it is called iRest, a program developed by Robert Miller I think in the 70s to help with the PTSD of war veterans. In this set, we did an exercise to experience opposites — hot/cold, anger/joy, light/heavy — first separately, and then we were asked to try and experience them together. I could very easily feel the opposite sensations in my body separately, but when trying to feel them together I got frustrated and confused because my body just wasn’t able to grasp it. And after feeling that confusion for a while, I ended up just relaxing and achieving a sort of “calm.” When asked how we felt after the exercise, I raised my hand and described my experience and one of my teachers said that “calm” I felt is essentially the experience of infinity and the goal of yoga — to embody that stillness BETWEEN opposites. She went on to explain that in our human experience we can ONLY feel opposites SEPARATELY, which is why the darkness is necessary in order to know the light…the pain is necessary in order to know what it feels like to be happy. It’s that age old concept of yin and yang, and although I always “knew” about it since it’s so widely spread in our culture — that idea of the light and dark being NECESSARY to balance the world…to FEEL IT in my body was a COMPLETELY different experience. One approaching a more “true understanding.” 

I think BECAUSE I feel so much being bipolar, it’s so easy to be at and experience the POLES, because they’re EASIER to feel. Even though the negative pole of depression is difficult to be IN, it’s more apparent to feel THAT than some vague in between, and it’s also easier to feel the “positivity” of mania. But thinking about what Dan Harmon’s therapist said with GRIEF basically being the in between…it makes so much sense to me. I would RATHER experience the POLES than the IN BETWEEN because the grief of knowing that sooner or later I have to go back to one or the other is maddening. And that’s the melancholy I heard in the songs this morning — it’s almost like a constant state of underlying sadness, knowing that each day inches us closer to our deaths, and if we hold ourselves back and continue to have unrealistic expectations, then being in the in between will always somehow feel like failure. And that’s constant grief…grief about our potential not living up to how we see ourselves in our heads…grief that sooner or later we’re gonna die not having done what we want…grief that sooner or later, no matter WHAT we do, everyone and everything we love will turn to dust. 

I definitely feel like I’m beginning to grasp something deeper…and although it’s instilling more of a sense of “peace” I can’t help but be a little sad about it. Yet…I think I’m going in the right direction? I just keep trying to remember something else I learned in yoga…that we chose to incarnate in this exact lifetime at this time in history for a reason, and everything we go through is the exact thing our soul is yearning to learn. Regardless of how sad I feel, I still get the sense of being on the “right path,” and maybe that’s all that can bring us solace in this difficult human existence. 

The Human Disease

“Our minds can do ANYTHING when we’re told we CAN, but the world tells us we CAN’T.” – Jennifer Lakhmi Chand

For a long time I’d been trying to figure out why I felt so broken, looking into things like psychology, spirituality, and reading a lot of self help books to try and find the answer. Being diagnosed last year began my true journey with mental illness, and Ayahuasca made me reconsider it all. This past weekend in Kundalini Yoga Teacher training, what I learned has made me wonder if mental illness is even a real thing at all.

Our entire modern society is sick. In some parts of the world, people still have to fight for their survival, but in places the United States, it’s almost like we create our own problems since we no longer have to fight for our lives. Don’t get me wrong, some people still do, but it’s not like we need the same stress responses that we had years ago as hunter gatherers. Now we have completely new stresses in order to invoke those responses, like jobs, relationship and family drama, racism, sexism, road rage, etc. In order to even get by in this world, the majority of humans ingest altering substances such as caffeine, alcohol, weed, pharmaceuticals, and all manner of hard drugs. We’ve forgotten what our TRUE NATURE is even like… and the fact of the matter is… we’re ALL living this human condition, and we’re ALL being affected by the environment around us in subconscious ways that frankly, fuck us up. And most people would rather cover it up and put a bandaid on it, just for that bandaid to repeatedly be ripped off… because they’re AFRAID to actually see their own scars. We are all SO AFRAID to take a good hard look at ourselves… because we can’t handle what it is that we’ll find. If we get off the substances, we actually have to FEEL. And that’s SUPER uncomfortable for people nowadays when all that other stuff is so easily accessible and constantly thrown into our face with marketing.

But all that shit is MESSING US UP. The food we eat, the substances we ingest… SUGAR. All those terrifying food and drug documentaries exist for a REASON, yet people remain ASLEEP.

What became really clear to me this weekend in yoga learning about the 5 Kleshas (The Root of All Pain and Suffering), the 10 bodies (The Bodies that comprise us beyond just our physical body), and the Ayurvedic Diet (Sattvic, Rajasic and Tamasic foods) is that there is SO MUCH that affects us that we are COMPLETELY UNAWARE OF, and SO MANY ASPECTS to our personality and SO MANY WAYS for us to fall off the path… that “mental illness” is inevitable. In fact, this morning in the Daily Sadhana I’m doing (daily spiritual practice beginning every day at 5am), at the end my teacher mentioned something about how meditation and this daily practice would “free us of the disease” and it became clear to me that it’s true! As humans, we are ALL diseased. Unless we truly commit to beginning to see our true selves, to recognize that deep within we’re all shining with the light of the universe and make attempts to have a relationship with that light… we’re going to keep feeling shitty.

This past weekend I had such insane revelations about my negative patterning from childhood, and so much came up regarding my ridiculous self hatred that left me a crying mess on the floor… But really… sometimes being a crying mess is absolutely necessary to begin to cleanse yourself of the emotions that you need to. CRYING DOESN’T MAKE YOU WEAK. IT’S A NATURAL PROCESS FOR OUR BODY THAT WE NEED TO DO FOR RELEASE. A symptom of “bipolar” are these emotional extremes, and the deeper I go, the more I’m able to find the source of these extremes, and am really wondering if the combination of the parenting that I had and the world that we live in (including marketing programming and diet) is what gave me these symptoms/caused these hormonal imbalances in my body that have led to this diagnoses. We can’t just blindly accept what people tell us — we have to learn to seek the answers out ourselves, and those answers only lie within. We are SO TRAINED to look to OTHERS for those answers and that’s HONESTLY part of WHAT FUCKS US UP. I am just beginning to SCRATCH THE SURFACE on that one. Really start to ask yourself who you’re looking to for guidance… I now see that a lot of my self hatred comes from the fact that I’ve never learned to look within for the answers, which has led to me acting out in ways that I have never bothered to understand but would only ask OTHERS to tell me why I was acting certain ways.

There is SO MUCH I want to go into right now about all of the above, and I probably will during the week… it’s just a LOT to go over in one post, plus I’m starting a new job today and gotta start getting ready! I’m going to be a character designer on Rick and Morty and although I’ve been freelancing, it’s my first day in house! 😀 All of these revelations are coming at a good time… and although I know that stress and worry are inevitable, I’m finally learning the proper tools on how to deal with life. And I’m also FINALLY starting to see that it can never be a MAGICAL SOMETHING that helps you deal… true healing is a lot of work.

Nurturing Issues

I find that Kundalini Yoga more than anything else is helping me learn to stabilize myself. The owner of the studio says that our minds are so busy that the yoga is designed to tire out the mind in order for us to be able to meditate. Especially for those of us with bipolar minds, they’re constantly going going going and it feels like there’s no hope of silencing it at ALL. But no matter how shitty I feel, how fast those thoughts are going, Kundalini Yoga ALWAYS makes me feel better, and I walk out having some sort of revelation about what my thoughts are trying to tell me. Tonight it was about NURTURING.

I realized that since I’m always bouncing back and forth between the extremes of depression and mania, it’s been difficult to form any type of self care routine. I used to think this was primarily a discipline issue, but I feel like discipline can only come if you can sustain the motivation to follow a routine. What am I saying?! Isn’t the point of discipline supposed to be that it happens even when you’re NOT motivated? In any case, struggling with extremes makes it seem IMPOSSIBLE. When I’m manic, I feel like I can do ANYTHING. Like run a ton of miles, lift a buncha weights, go to yoga, draw, go out to lunch or dinner with EVERYONE… all in the same day on like, an hour of sleep. I always get excited and tell myself that I’m building all these great habits and that it’ll be easy, but the routine ultimately ends up being completely unsustainable because it’s set up during my manic high where I feel like I can actually accomplish things. Then when I fail to do all those things and crash, I have even LESS motivation to take care of myself due to all the self hatred of being unable to follow the routine. It’s been like this for YEARS, and I KNOW that I do it, yet I haven’t found a solution… the mania is always so strong that I haven’t figured out how to create realistic goals, and the depression hits so hard that it makes it nearly impossible to recover before my next manic phase comes along.

Today in yoga we did a set called the “Foundation for Infinity,” and were told that it’s when we’re in that flow state where everything seems to be going right, that we’re flowing with infinity. It’s within infinity that anything is possible, and you can only feel it when your mind is at peace. This is why it’s so important to tire out the mind in order to be able to meditate and experience that this is actually possible! After our set we did this meditation to the chant of “Hur Hur Mukanday” which is a mantra for releasing blocks so we’ll be able to nurture the seeds that we sow in order to manifest what we want. During this meditation I saw a child version of myself with a watering can, watering seeds that had just been planted then sitting patiently waiting for them to grow. Then that child turned into me, now as an adult, getting FRUSTRATED that they weren’t growing quick enough, and throwing a fit over it. Then I felt like a seed of light was beginning to sprout at my chest, and immediately it got stomped down by this dark energy within me, before it even had a chance to grow.

This is what I’ve been doing to myself my ENTIRE LIFE, and to visualize it in such a way… I felt like I was punched in the gut. Patience and nurturing are clearly something I need to work on. I instantly thought “If I can’t take care of myself, how will I be able to take care of a kid someday?” And also, I’m 30 years old… I should be able to know how to take care of myself by now. I also thought about my husband… So often I’m stuck in my own thoughts or self hatred that I don’t pay attention to his needs. He’s even TOLD me this multiple times, yet I haven’t gotten much better at it because I’m still so wrapped up in MYSELF. Thankfully he’s really understanding and knows this is difficult for me, but it makes me feel terrible and selfish, always like “HOW AM I STILL NOT ABLE TO DO THIS?!”

Normally all this would’ve bummed me out, but after the meditation I felt a really strong resolve to start taking this more seriously one small step at a time, because really… that’s all we can do. The dwelling HAS to stop. The unrealistic goals have to STOP. The self hatred has to STOP. But none of it is going to happen overnight… which is where the nurturing comes in. All of these things are just seeds that need to be watered… and I have to actually ALLOW them to grow rather than stomping on them before they can even turn into something. And maybe that’s something that this inner beastie is trying to tell me.