New Med, New Me

Hi! It’s been far too long since my last post! Lots has been going on lately- lots of good things! I still have schizoaffective disorder bipolar type, and I (think) my care team and I have finally figured out a medication regime that actually works for me.

To backtrack a bit, back when my psychiatric nurse practitioner changed my diagnosis to include bipolar disorder type 1, I was on A LOT of medication. The first mood stabilizer I was put on was lithium. While this initially brought me out of my nearly two month long manic episode, it resulted in extreme akathisia, shaking, twitching, etc- likely in combination with everything else I was taking. I was experiencing symptoms similar to those seen in people with Parkinson’s Disease. There was concern about lithium toxicity, so we discontinued it quickly. My gait was very slow/shuffling, I had some mild face twitching, shaking hands and arms- to the point where I had to death grip things to keep from dropping them (this didn’t work). I was also unable to go up stairs without having both hands on the hand rail. It was extremely difficult to drive- I couldn’t hold on to the steering wheel, and when I did, my arms would twitch at random and I would accidentally swerve the car. I briefly considered getting a cane of some sort to keep from tripping constantly, but I would not have been able to physically hold on to it anyway. Bad. Very bad. 

The psychotic symptoms were getting worse too. Because I’m an extreme horror book fan, I was often seeing characters from the books I was reading, along with those I saw die while working in healthcare. The voices were constant, mean, and scary. My psychiatrist was considering putting me on clozapine- the gold standard treatment for schizophrenia. Most insurances/doctors require at least two antipsychotic “failures” before considering putting someone on this medication. I have failed five- abilify, olanzapine, thorazine, haldol, and seroquel. This is because clozapine has some of the most serious side effects of all of the other antipsychotics- requiring weekly blood tests for the first six months to ensure stable levels and the scariest side effect- a severe drop in white blood cells.

However, she wanted to try one last medication before resorting to clozapine: a brand new antipsychotic called Cobenfy. This antipsychotic acts on different brain (receptors? IDK) things than all other antipsychotics ever made.

And I’m happy to report that it is working for me. 

To give you an idea of how much medication I was taking, here is my med list from fall of 2025:

Lithium 150 mg once per day (I think?)

Seroquel 800 mg ER once per day

Gabapentin 2400 mg daily (for akathesia)

PRN Propranolol 20 mg twice daily (for akathesia)

PRN Olanzapine ODT 5 mg up to 20 mg daily

PRN Ativan 1 mg daily

PRN Mirtazapine 10 mg for sleep

I was maxing out my PRN medications on a near daily basis.

That’s a lot. Now, here is my current med list:

Lamotrigine 150 mg once daily

Cobenfy 100/20 twice daily

PRN Klonopin up to 1 mg daily (sleep/anxiety- mostly taking .5 mg a few times per week for sleep)

PRN Zofran up to 8 mg twice daily (nausea from Cobenfy)

I am hoping that I will be able to phase out the zofran and klonopin soon- or at least switch to a non-benzodiazepine anxiety/sleep aid.

And that’s it! This is the least amount of medication I have been on since being diagnosed! And I’m thrilled- and my liver, heart, and kidneys are thrilled too, probably. 

I have been on the Cobenfy/Lamotrigine combo for a little over a month now, and I’d estimate I have at least an 80-90% reduction in symptoms- sometimes not hallucinating at all. I never previously thought of myself as being overly sedated or “zombie-like” as many people on antipsychotics are. But I was very wrong. I have greater mental clarity now than I ever had before. I now feel emotions at an intensity and range that I have not felt long since before my diagnosis.

I cry now! Up until about two weeks ago, I have cried exactly one time since my diagnosis in January of 2020, and that was about three years ago. I have cried four times since being on Cobenfy. This may sound troubling, or like I am in a depressive episode, but this is far from the truth. I feel feelings now. Many people in my life have told me that I smile and laugh more (confirmed by my psychiatrist not to be manic)- I no longer have the typical “flat affect” that many people with psychotic disorders have. 

The scary hallucinations, the characters from the books I had to stop reading for a while are still there, but they aren’t scary anymore. My most common hallucination, Pennywise from Stephen King’s It, used to terrify me, but now he’s more of a companion- even a friend! We have a great time- he’s actually quite funny! 

I have also had quite a few memories that have long been buried come back. I recently showed my girlfriend very old videos of me playing in school bands, orchestras, and even my college audition. This brought up a lot of feelings from that time, both good and bad, that I have been working in therapy to re-process. 

I did have a semi-troubling, but interesting realization: I have been hallucinating for much longer than I even thought. Up until starting this medication, I thought that I had started hallucinating about 6-8 months before my diagnosis. This idea was wrong. 

I now have a very clear memory of my first experience hearing voices. I was around 10-11 years old (sixth grade) in history class taking a test. I thought a few different people were talking to me, but upon looking around the classroom, I realized that no one was looking at or talking to me. The room was silent, but I could very clearly hear voices talking to me. Weirdly enough, this wasn’t scary to me at all! I actually thought it was very cool that I was talking to five different “me’s” at once in my head. And I also thought that everyone did this, and that it was completely normal. So yes, if you knew me or interacted with me at any point around the sixth grade, up until now, I was hallucinating the entire time.

However, after observing my peers, I soon realized that they didn’t look like they were listening constantly, or as deep in thought as I was. I attributed this to me being a little bit more “in my head” than others. From then on, I was conversing with these voices on a daily, fairly constant basis. The voices started out sounding like my own voice, just many of them, all at the same time. They soon differentiated themselves, developing their own unique sounds and personalities. For a while, they would narrate whatever I was doing, or make funny (and sometimes snarky) comments about interactions I was having with others at the time. We had in depth conversations all the time as well.

For many years, they didn’t generally bother me. I believed for a while that I had a very rich and vivid inner voice and fantasy life. It was when I had originally thought I began hallucinating that the voices became disturbing and scary. I also do not recall any visual hallucinations/disturbances until about six months before my initial diagnosis. 

The only two issues so far with this new medication are nausea, and lack of appetite, resulting in over 30 lbs of weight loss in the past 5 weeks. One of my former students said I looked “snatched for summer!” While I have been trying to lose at least some of the 60+ pounds of weight I put on while on other antipsychotics, I am not super thrilled that it is happening so quickly (also all of my clothes now look like basketball uniforms). The nausea can be a lot to bear as well. However, I’ve found that if I take my morning dose a couple of hours before I wake up, I will generally not be nauseous. If I take my nighttime dose and immediately go to bed, I will also usually skip the nausea. When I do get nauseous, it is usually at night. It is mildly inconvienent that I cannot have any food an hour before taking it, or two hours after (this is a twice daily medication). However, I am fully willing and prepared to deal with nausea for the rest of my life if it means I won’t go back to how I was before- numb, sedated, and foggy.

The rest of my life is going super amazing as well. I am leaving my position at Oregon State University and going back to landscaping for the foreseeable future. I am looking forward to being more physically active and being outside all day, every day. I no longer shake, and have begun playing guitar, piano, and trombone again. I can read my favorite books without fear. I can safely drive again. Since the weather here in Eugene has been so nice, I go swimming in the river 10 minutes away from my apartment on a near daily basis. I recently had a social worker consultation for phalloplasty, and a consultation with a surgeon this October. I have been with my girlfriend, Juna, since November, and we plan to move in together by the end of July. I also no longer smoke weed and rarely drink alcohol (still working on the nicotine thing- gross, I know). I go to therapy weekly. After six years from my diagnosis, and at least 17 years of constant hallucinations, things are finally looking up.