A Shade of Sleep

Hello everyone!

This post is a little different. It’s not explicitly related to narcolepsy, rather more so in combination with bipolar disorder.

I am diagnosed with bipolar disorder type 2, and I took an antipsychotic along with a mood stabilizer to treat it. However, once I was diagnosed with narcolepsy and started taking Lumryz, a sodium oxybate, I became much better mentally overall given that I was sleeping. Then, my parents and I began to wonder whether or not I needed to be on a high dose of Latuda (the antipsychotic I was taking) because my mood was improved through sleeping better. We decided to start tapering off of the Latuda and this is when the problems started.

Tardive Dyskinesia is a neurological disorder characterized by involuntary muscle movements, particularly in the face and limbs. It is a common side effect of taking antipsychotics for long periods of time because these act as dopamine receptor blockers. Over time, chronic blockage of these receptors can cause them to become overly sensitive, resulting in erratic, uncontrollable movements recognized as Tardive Dyskinesia.

So, what does the sodium oxybate Lumryz have to do with this? It can actually unmask symptoms or make them worse. As previously stated, the constant blockage of dopamine receptors causes them to become overly sensitive to dopamine. In turn, because sodium oxybate acts as a nervous system depressant and interacts with GABA pathways, this state of heightened receptor sensitivity makes the motor pathways vulnerable to involuntary movements.

Additionally, Tardive Dyskinesia is characterized by levels of dopamine that are too high, and chemicals like GABA that are too low. Sodium oxybate alters GABA activity. If GABA function is suddenly changed, this disrupts the balance keeping the dopamine hypersensitivity in check, leading to the appearance of Tardive Dyskinesia.

My sleep neurologist was actually the one to diagnose me with Tardive Dyskinesia (TD). Over time (Over several weeks), it got increasingly unbearable.

In my face, I had teeth chattering, and sometimes my jaw would involuntarily slam shut and I would bite on my tongue or my cheek really hard as a result. I would also puff up my cheeks and blow air through my mouth quite often. Towards the end of when I started taking medication for my TD, I started experiencing worsening symptoms in my face like involuntary tongue movements, but that was quickly put to an end by the medication.

My arms were by far the worst. I would clench my fists so tight I would dig my nails into my skin and large knots would form in my muscles in my arms. I would also raise my arms up and down and slam them on whatever surface they came down on, quickly and uncontrollably. This caused me intense physical pain in my joints, and I eventually lost sensation in some of my fingers in my left hand.

I also had something called Akathisia, which is an intense, uncontrollable inner restlessness and overwhelming urge to move the body. I was so incredibly restless that it was torture to sit still in class for longer than 15 minutes. Standing up didn’t do me much good either. I physically needed to be able to move around.

Additionally, I would involuntarily bounce my legs. Sometimes I do this on purpose to release anxiety, but this was different. I physically couldn’t stop my legs from bouncing and it seemed to happen whenever.

This seems like a weird side effect, but it makes sense for how much I was moving. I would sweat massive amounts of sweat uncontrollably to the point where my clothes would be soaked. I couldn’t bring a change of clothes to school because eventually I would soak through those too.

All of this was solved through a medication called Ingrezza. It is a central nervous system depressant like Lumryz, and acts by becoming sort of a regulator for how dopamine is transported in the brain. This decreases dopamine sensitivity, leading to the involuntary movements subsiding.

At the same time as being on this medication, I am tapering off of my Latuda, which was the main culprit in causing the TD. The goal is to eventually taper off of the Ingrezza as well, that is if the TD isn’t permanent.

So, what do you think? Are there any fellow narcoleptics with bipolar disorder? Let me know, and thanks for reading!