Today I got prescribed Prozac.
Despite being fairly open regarding the issues I face, I haven’t spoken terribly often about my own mental health– while it’s less likely to kill me than everything else that’s happening, it’s still an incredibly important aspect of my health. I’m not entirely sure why I’ve stayed relatively silent. I guess I just wasn’t in a place to be able to properly articulate everything that’s going on without discussing aspects that I’m not prepared to talk about.
It’s not that I didn’t have opportunities. I considered writing posts for Bell’s Let’s Talk. I wrote and discarded numerous drafts when Twitch ran their mental health awareness campaign. I kept telling myself, hey, these words don’t feel right now, but maybe I’ll get something out by the end of the month. I even had support from other broadcasters and content creators, including a few I had reached out to on mental health Discords. But despite all of these chances I never really went through with it.
I think some part of me used to think that, hey, in the 21st century we have a new openness towards discussing our mental health. I told myself that there were more than enough “role models” out there (not sure if this the best way to describe this phenomena)– more than enough people who are open about the struggles they face, more than enough people to look to when you feel completely alone. Having people speak out about their own experiences is incredibly important when you want culture to shift. It breaks down stigma. It helps. It makes people feel less alone.
I thought about when my doctors were considering a bipolar diagnosis. Reading some of Carrie Fisher’s works made me feel that despite this would be completely new territory, I was going to be okay. Even if my life turned upside down, I would still surround myself with people who would support me. I felt that I would’ve been worthy of support and love. I felt that with treatment and lots of effort, I could lead a normal life.
But this last year, a couple things happened– I discovered there were young (<13) people in my extended family who also suffer from very similar issues to me. I mean, that makes sense, crippling anxiety runs in the family. We just don’t talk about it. They didn’t realize they weren’t alone. They didn’t know that I had also gone through this. This absolutely broke my heart. I realized my silence wasn’t enough. Growing up, I wasn’t really “supposed” to talk about my issues, thanks to fears regarding judgement from some people in my extended family. Actually, scratch that. I felt expected to lie through my teeth and pretend everything was normal. This is one of the many reasons why I want to be open about this. I’m not just doing this for myself– I’m doing this for them. Even if I’m going to face consequences for writing this.
Despite living in one of the most liberal places in the world, I still feel the stigma of having faced mental illness. I might face vitriol and be vilified by some people. Maybe my community will be okay with it, but it’s unlikely that some in my extended family would be. For this reason I won’t be pushing this post terribly much on social media. If they find this post, so be it. I’ll deal with the consequences.
I know by writing this post I’ll be breaking an illusion. But that’s okay. I want them to know that breaking that illusion is okay, too.
So I guess this is as good a time as any to start talking. Maybe I’ll be ready for next May.
And perhaps one day I’ll join the community that pushes to “blackbox” better warnings on prescriptions regarding adverse side effects. I was failed by my pediatrician– maybe we can push for more training in recognizing neurological side effects in young children, so this doesn’t happen again.
If you’ve… well, ever watched any of my streams, you can probably tell that I’m not neurotypical. I’m not going to talk too much about that here because writing everything else would qualify me for the NaNoWriMo.
My health situation can be summarized by two phrases; “and then, somehow, everything got worse” and “really drew the short end of the straw, and it turns out that instead of a straw it’s actually just a really big piece of fish dung and your fingers turned out to be globs of gelatin that fell and made a mess on the hardwood floors”.
(That last saying might be a regional one. Specific to my own room.)
My breathing difficulties started when I was a very young child. My dad believed he had asthma, so he took me to a doctor in the US (where we lived at the time) and pointed out my symptoms. The doctor confirmed, yeah, your kid is wheezing, that sure sounds like asthma! Have a script (and get the hell out of here).
He didn’t do anything else. I don’t blame him, I mean, childhood asthma is incredibly common. There was no other reason to think that it could be anything else.
(Spoiler alert: it’s not asthma! Hahahahahhaahfuckmylife. I’m seeing a lung specialist in about a week to try to narrow down a diagnosis. The good news is that my alpha1 antitrypsin test came back negative a couple of weeks ago. The bad news is that we’re still not sure about a diagnosis, and I’m not looking forward to a lung biopsy.)
But anyway, back on subject. My childhood was a flurry of trying different drugs to control my symptoms. Early on, we did actually find a drug that worked.
I’m going to say this outright– I was a Montelukast child. I was one of the few thousand children that experienced incredibly rare adverse neuropsychiatric side effects from this drug, that flat out destroyed our childhoods and still affects our lives today.
At the time, this wasn’t very well known. There were no warnings issues to physicians. There was no black box readings, nothing in the information pamphlet that warned this was possible. Most doctors had never even heard of these side effects. Montelukast was, and still is, a fairly safe drug. Millions of people take it every year. Statistically speaking, you’re very unlikely to experience any issues. Just a very small group of us were fucked over by this drug– a small enough number to fly under the radar until a correlation was noticed.
It affected every patient differently. Some children became aggressively suicidal. Some kids as young as 4 years old attempted to take their own lives. Some of the older kids succeeded. I’m lucky I’m still here today.
Most experienced crippling depression. Some simply stopped functioning. Some children became aggressive, hostile and fearful for their lives, not understanding what was wrong with them. Some were completely disorientated, some stopped sleeping completely. I was part of the “extra lucky special 2 for 1 combo!” bunch that experienced all of these alongside a complete disconnect from reality, including extra fun symptoms like hallucinations.
From what I’ve heard, the one thing we all had in common were the nightmares. Jesus Christ, the fucking nightmares. It’s been almost a decade since and I still can’t bring myself to talk or speak to my therapists about the content of the nightmares. It’s a special kind of hell. We experienced night terrors, sleep paralysis (being partially conscious, but paralyzed and hallucinating) and the most vivid, intense nightmares. The worst part is that you usually don’t even realize that you were sleeping– and when you wake up, you’re incredibly disorientated for a few minutes trying to figure out what happened, where you are and how you got out of there.
Hell is when your own mind knows exactly what scares the shit out of you the most and chooses to take these images to torment you. You’re paralyzed, watching the worst kind of monsters imaginable your mind can possibly conjure up torturing you over and over again. You see in vivid detail, everyone you know and ever loved being tortured in front of you. You can’t look away. You don’t look away. You listen to them scream. You wake up in the middle of the night to see something 9 feet tall standing over you. It doesn’t matter if you’ve slept for 12 hours, you’ll wake up completely exhausted and numb inside, trying not to think about what you just saw.
I don’t even know if nightmare is the appropriate word. I think night terror is better suited to it. It effects me today in the strangest ways. I still can’t watch most horror movies, or read SCP entries. Photos of aliens and cryptids freak me out. I can play some horror games, depending on the content, because I feel that I have more control over the situation, but that’s about where my ability ends.
Eventually you get to the point where you dread sleeping and you do everything you possibly can not to fall asleep. Your sleep isn’t safe.
I certainly got pretty loopy from this drug. I remember when I was 9 years old, I woke up on Christmas morning, and it dawned on me that I couldn’t feel any positive emotion. I was just completely numb. I remember thinking something to the effect of “wow, I should be really concerned about this right now. Even though I’m not. Huh. I’m broken.”
Over time my paranoia increased. I was already an anxious child– when I say anxiety, I mean in first grade and kindergarten, without fail I would wind up at the school nurse every single day trying to hold back vomit. Social interactions made me incredibly nauseous. This, uh, didn’t help.
I began having very strange fears and paranoia. I didn’t feel safe walking under open spaces, across fields, or outside, because I feared being watched by aliens. I didn’t just think something was coming after me, I knew it was. I started hiding weapons around the house– glass shards by my bed, knives in different locations. Around 10 years old, I started barricading myself in my room at night and blocking my window. The thought of looking out of windows at night would make me start to panic, because I was always afraid of what would be staring at me through them. Sometimes the logic and illogical parts of your brain come to together and you start doing things that make sense to you, but seem batshit fucking crazy to everyone else. My limited understanding of the PH scale meant that I thought I could keep items from along the line, in case one of those chemicals would be “more damaging” to whatever “flesh” belonged to what was hunting me. My parents, on the other hand, were really confused as to why I kept bleach and salt in various containers around my room, and why they found buried steak knives in the plants and under my pillows. I was convinced that my dog could read my thoughts (to be fair, she had a REALLY convincing judgement face), and that if I thought or wrote about aliens that they would come for me.
I tried to learn how to throw knives (which is incredibly impractical and not a good self defense solution, by the way). I freaked out my friends at sleepovers because I would try to teach them how to hide and slow your breathing so you wouldn’t “get noticed”. I was pretty much a living horror film character. While my friends were too young to understand, they were a little disturbed by these behaviours — me waking up screaming in the middle of the night probably didn’t help with that.
You know, this is actually pretty funny to me now– in 7th grade I went through a stint where I was convinced I was somehow the reincarnation of Marie Curie. I was a total dick about it, too. I remember being a snooty little shit about my science test results.
Right around 7th grade was when I started cracking from the constant stress– you see, my waking hours were spent feeling like I needed to hide and keep an eye out for some vague, unknown entity conspiring to kill me, and my sleep was spent watching disturbing scenes. Not exactly conducive to a calming environment, eh? I was so stressed out constantly that on the first day of school, a kid asked to borrow a pencil and I broke down crying.
(If you’re reading this, sorry dude, you were fine, you did nothing wrong. I was just a special kind of fucked up at the time. I hope you have extra pencils now!)
Eventually this culminated to the point of a complete mental breakdown. I couldn’t do it anymore, it was just too stressful. I was late to class because I was freaking out in the bathroom. I walked to class, and my teacher opened the door to let me in. I guess I looked nearly as bad as I felt, because the second he looked at me he immediately told the class he’d be away and closed the door behind him. He brought me to speak to another person in the school administration.
I got a lift to the local CLSC where I was willing to talk a bit more to a doctor there. He had a very straight face, asked me about my symptoms, my parent’s medical history, and a bunch of seemingly unrelated questions. I noticed he was drawing a square and a circle on a piece of paper. After finishing his questioning, he dipped out of the room for a few minutes. When he came back, he recommended that I go be evaluated at a nearby hospital. Naturally, this was pretty shocking to me. I began to protest, stating that I wasn’t comfortable doing this immediately. That’s when I realized that he wasn’t suggesting it. There was a security guard standing in the door. This wasn’t an actual option he was giving me.
When we walked out, I noticed the receptionist was wary of me. That really hurt.
I was already known for my lung (and newly beginning gastrointestinal) problems, so it was a pretty simple matter to me to start additional treatment where I already had a file, at the Montreal Children’s Hospital.
At first, we weren’t sure exactly what was wrong with me. These aren’t normal symptoms for children– from my limited understanding, generally speaking (but not always), these symptoms sometimes arise later in life if they’re caused by illness.
I began treatment with antipsychotics. They explained that in this program, if you receive early intervention and stay on the drugs for long enough, you have a 75% chance of not needing them for the rest of your life. Keep in mind that at this time we had no idea that it was Montelukast doing this to me, so these seemed like pretty good odds and a good plan to go forth with. Between this treatment, my lung problems and GI issues causing constant nausea and requiring monitoring, I was going to therapy and doctors appointments nearly every single day of the week. I could no longer attend school full time. This is period of social isolation is when I started streaming.
A couple months into treatment, my dad found a study that just came out in Sweden. The study was covering these exact symptoms in children between the ages of 2 and 18 taking Montelukast.
I stopped taking Montelukast immediately and my symptoms ceased– well, with exception to the depression and anxiety. Those are still present today. I don’t think anxiety will ever go away– it’s certainly genetic. The most I can do is manage it. Considering I was on Abilify and Risperidone at the time, we couldn’t exactly 100% guarantee that it was the Montelukast, so I chose to stay in the treatment for the recommend time period, on the off chance we were wrong and I really did have an underlying disorder.
*Spoiler alert: I am currently being treated by a doctor who is well aware of the Montelukast studies, and is certain that I do not have any concerning symptoms that would indicate I have a longterm illness related to psychosis. It is very unlikely that I will experience this again.
But this wasn’t the end of my problems. I was put on Seroquel after experiencing side effects from the Abilify and Risperidone. At the highest, my dose was 875mg (800 XR +3x25s) . For reference, the only other kid I met who was on Seroquel was on 200mg, and that was considered a lot. This is far beyond the standard pediatric dose, at least in some regions. (My current physician is absolutely horrified by this and feels this treatment was way too harsh for my particular situation.)
I’ll soon write a post regarding the details of how Seroquel affects my day to day life. It’s not good.
Seroquel is a very strong sedative, or chemical restraint. There’s reports of prisons giving small doses (25 mg) to prisoners to subdue them. Giving the drug to elderly people in nursing homes was a fairly common practice up until warnings were published proving that Seroquel tends to kill patients with dementia. Some nursing homes are still being caught using it anyway, because it’s far more convenient to just sedate patients rather than deal with them. (Seriously guys, check up on any relatives or friends living in assisted care facilities. If you’re not visiting, they might be at higher risk for abuse.)
(For the record, this is not to say that Seroquel will always ruin your life. Seroquel helps some patients finally live their lives peacefully and manage their illness incredibly well. Some people credit Seroquel for giving them the means to live the way they want to. It depends entirely on the person. One person’s miracle drug is another’s hell.)
When they first prescribe the drug, they tell you to start it on a weekend, or otherwise when you don’t have any prior obligations to fulfill (ie, going to work). Seriously, they aren’t kidding. The first day I took the drug, I slept for 20 hours straight. I woke up, went to the bathroom, and fell asleep on the floor for another 16 hours.
It does become more tolerable over time, but I still need to sleep at the very minimum 12 hours to wear off the sedative. If I force myself awake before sleeping it off, I become incredibly disorientated and nauseous. I have migraines. I’m constantly trying not to throw up. I have the strong urge to sleep regardless of where I am– class, at a restaurant, on the floor, doesn’t matter. Sleep is all your brain works towards. 14 hours is more ideal, but doesn’t leave me fully rested. If I’m not feeling well, I’ll be more inclined towards sleeping for 16 hours.
This is a simple math issue. 24 hours/day, need to be awake for at least 14h to sleep… and then you sleep for minimum 12h? That puts you on a 26 hour schedule. If you ever wondered why my sleep schedule is always sliding forward, this is why.
I try to hide this as much as possible, but my short term memory is absolutely shot, especially on higher doses. Currently, I’m on half of my highest dose (400mg). According my mom, when I was on 450mg I used to ask her what was for dinner on average 8 times a day, sometimes returning to the kitchen 15 minutes later to ask again, having absolutely 0 recollection that I was even there earlier in the first place. I’m not even aware of it, but this is really upsetting to the people who live with me.
My attention span was reduced to the point where I couldn’t read anymore. I would finish a page in a book and immediately forget everything I just read. As someone who loves to read, this is probably the worst side effect. On 400 mg, I’m starting to be able to read in short bursts, but I need to take notes and do it all in one shot, because even a few days later I won’t remember what I had read.
(On the bright side, I can just reread a reddit post every 2 weeks and it’s brand new content every time. No reposts, ever!)
As you can imagine, I couldn’t program anymore. Oh, and math is an ordeal, because by the time I start multiplying in my head I don’t even recall the original integers. A simple math problem takes an entire paper to complete, because I have to write and re reference exactly what the problem is and the variables involved. I learned two things early. One– don’t tell people what you’re going through, because that puts you at risk for manipulation (more on this later). Two, don’t do mental math in front of other people, because they’ll be incredibly confused/concerned/condescending when you fuck it up REALLY badly.
Dota games are fucking disorientating. So picture this. You’re playing Dota, right, you’re laning, and then suddenly you blink and it’s 20 minutes later and the T2s are gone and you have absolutely no recollection of why, who did this, and what’s going on. It’s kind of disturbing. If it weren’t for the hero icons on the top bar, I would completely lose which heroes are in the game. Actually, it doesn’t matter if there are hero icons or not, because on stream (some people thought I was joking) I would be genuinely startled, like, 30 minutes in to the game, “Holy shit, there’s a Huskar?!” despite having laned against him. As you can imagine, this fucks up my ability to make long term strategic decisions ingame. I rely far too much on mechanical ability because that’s all I have left.
At least some of my closer friends have a good sense of humor about it. A guide to surviving early onset dementia has made a good birthday gift.
Manipulation is something else entirely. This is actually why I wouldn’t have written this post on a higher dose– at 400mg, I’m able to retain enough memory to be more aware when other people are gaslighting me. Predators have an uncanny ability to be able to sniff out perceived weakness in other people. I had a lot of toxic people in my life who took advantage of my cognitive decline– borrowing money from me and denying it, saying/doing terrible shit and then pretending I imagined it, or making promises and then pretending we never even had that conversation. Over time I had my suspicions, but the only way I confirmed this later was by recording dates, conversations and keeping screenshots. I found out some of my own family members did this, too. It’s a pretty shitty feeling to realize that the people you trust the most don’t deserve it. I’m now very careful about the people I choose to reveal weakness to.
But wait! There’s more!™
Seroquel gives me uncontrollable muscle tremors and twitches, alongside dulling my reflexes. As you may know, I used to play Tribes: Ascend ladders when I was younger. I’m not conceited enough to pretend I’m the greatest FPS player on the planet (far from it lmfao), but certainly better than I was at Dota. It was a strong passion of mine. Well, I couldn’t do play competitive FPS titles anymore on Seroquel, because my reaction time was dulled by entire seconds. This doesn’t sound like much, but it’s a huge deal. Imagine this– you tell your brain to do something. I mean, it doesn’t feel like you’re doing it, just move your thumb. That’s the signal you’re sending, right? Now imagine you try to move your thumb and it doesn’t work. You’re aware you’re supposed to move your thumb. You see the person you’re supposed to spray. But it doesn’t respond properly. Aaaaand, you’re dead.
Generally speaking, this makes a lot of games way too frustrating to continue. On 400mg, I’ve been slowly returning to FPS titles. I’m still lacking in ability compared to how I used to be, but my reflexes are better. It’s nearly bearable now. I’m actually thinking of recording games at each dose, as I keep reducing them. It would neat to be able to watch my improvement over time. I feel like this would help my general morale.
Now here comes the muscle tremors! My brain randomly sends signals to various muscles to contract, shake or twitch.
First off, this really affects how I talk. When I first started on Abilify, I produced SO MUCH DROOL. I’d wake up with a soaked pillow, wondering if I knocked over a glass of water in the middle of the night. Nope. Just an ungodly amount of drool. Think the most disgusting Niagra Falls replica ever. Now combine this when your tongue randomly twitching when you talk, completely screwing up your words at random. I had to learn how to talk properly, enunciate everything better, and have the patience to wait for my tongue twitches to stop mid conversation. This makes my speech really difficult to understand (to some people, anyway). I’d say the only people who understand most/nearly all of what I say are Sean and my dad.
The most frustrating side effect from these signals is that you’re a magnet for injuries, and you’ll randomly drop and/or fling items across the room multiple times per day. I had to switch out my phone for a less fragile model that was waterproof/has a super clunky case since I used to drop it every day. I’ve destroyed more ceramic plates/glasses/mugs than I can possibly count– maybe one a week? I’m thankful for a soldering kit, because I’ve spilled so many liquids into my mechanical keyboard collection. (By the way, there’s nothing more embarrassing than smashing someone else’s plate. I’m really thankful I haven’t damaged anything irreplaceable yet belonging to someone else.)
I once dropped Paisley’s urn and smashed part of it. That really hurt me emotionally.
The clumsiness is terrible. My body is covered with so many scrapes, cuts and bruises that I don’t even bother anymore with trying to figure out where they came from. I drop things on my feet all the time. I constantly walk into furniture and walls. Sometimes I simply fall over while standing for no apparent reason. I spill boiling water on myself. I feel like an oversized, blackout drunk toddler. Oh, and I once set my ex’s oven on fire. (I SCRAPED IT OUT. THEY STILL DON’T KNOW. …Maybe I shouldn’t broadcast this fact on the internet.)
The brain fog is just awful. Leaving the house is an ordeal because I have multiple medications I need to carry on me at all times. So I’ll go to the bathroom and put one of my meds on the counter. And then put my coat on, and completely forget I went to the bathroom, and wander around the house trying to find that medication. So I’ll be wandering my room for 10 min and get distracted and forget what I’m doing. Browse reddit for 5 min. Sean comes in and goes “hey, we’re going to the grocery store, right?” “OH SHIT, MY BAD.” Realize again medication is missing. Search more. Find it in the bathroom. Put coat back on. Realize phone is missing. Search kitchen. Find it in my coat pocket, I have no recollection of putting it in there. Rinse and repeat. If I’m lucky I’ll get out the door in 10 min.
Sometimes I’ll just wander around, and then suddenly 2 hours have passed and I have no fucking clue what I did during those 2 hours.
Flowers for Algernon hits me very hard. One of the staff members at the hospital had me read it. I think he realized the ending Charlie Gordon received was something I felt strongly. The despair he experiences as he watches his cognitive ability fade away before his eyes felt like a parallel to my life at the time. I know that feeling of watching your consciousness and what makes you a person recede. It’s terrifying. It destroys you in a whole new way.
What I once could do and comprehend is nothing but a memory that may or may not fade with age.
It numbs my emotions out to the point where I struggle to analyze and recognize what I’m feeling. Turns out, it’s mostly rage. People used to comment on how chill I was. I mean, I am generally speaking, an incredibly laid back person! But I’ve been effectively stoned out of my mind from Seroquel for so many years. I wonder what part of that is my lack of processing negative emotions properly, and what parts Seroquel is responsible for. I’m still a person. I’m still incredibly flawed. I still feel negative and “ugly” emotions.
Honestly, I have a really hard time recognizing myself as a person. It doesn’t help that I’m going through that stage of life where you’re trying to figure out who you really are, and who you want to become. All I have for frame of reference are people who knew me before all of this happened; but I was still really young back then. I’m not expecting to the be same person I was before the drugs. Sometimes I ask Sean what I used to be like, because if you asked me how to describe myself as a person, I wouldn’t even know what to say. Some days it freaks me out, because I don’t know who I really am. Other days I feel hope, because being a blank slate means I can become the person who I want to be.
I’m incredibly lucky to have a good support network. That being said, dealing with this is frustrating. It really is. I used to be an incredibly independent person, and now I’ve been reduced to this. Some days I have better cognitive function, and when someone says something that seems really obvious to me, I get super frustrated because that makes me think, wow, that’s a really stupid thing to say. Am I really so screwed up that saying these things is usually warranted most of the time? I get frustrated when reminded how bad it really is. Sometimes I lash out a little, which is screwed up (I’m working on this), because it’s not the person’s fault at all for reminding me how severely my function has been declined. I shouldn’t be taking out my frustration towards myself on other people, it’s not fair to them. For the record, I’ve gotten better with this. But some days I just rage because I’m aware of how terrible my ability to complete basic tasks has become.
(Sean is a saint. He’s like a seeing eye dog for my cognitive function. Not sure if that makes much sense, but it’s the best way I can describe it.)
Today, I’m on 400mg of Seroquel. I withdraw -50mg at a time. I’m incredibly sensitive to the withdrawl, and it’s absolutely horrible. I experience lots of nausea, migraines, pain, shaking, hot flashes, cold sweats, I can’t sleep, I need to sleep, and I feel a lot of distress. It takes me a while to recalibrate to feeling emotion again and I experience a lot of problems until I get used to the dose. Last time I went down (from 450 to 400), it’s taken me a year to recover. I’m not going to lie, as much as I want my life back and to be able to go back to school, reducing my dose is really scary to me. I try to put it off. The only reason why I haven’t thrown in the towel yet is the number of terrible side effects from taking Seroquel over a very long period of time. I’d rather not kill off my brain cells, thanks.
So today I was prescribed Prozac. Actually, at the time I finish this post, that was two days ago– I took my first dose of Prozac yesterday. I’ll be taking another one in a few minutes. My doctor didn’t want to add Prozac to my list because it can cause side effects with Seroquel, and it’ll be difficult to see which symptoms are affected by lowering my dose and which symptoms are affected by the Prozac. Unfortunately, my depression has gotten to the point where I cannot function without an antidepressant– it straight up puts my life at risk. So this is huge for me. I’m hoping this will help me make my life more bearable until I can reduce my Seroquel dose. It’ll take about 2-4 weeks to fully kick in. I’ll update then.
This has been a lot longer than expected. I don’t really know how to finish this post. It’s been strangely cathartic to write all of this out and be able to vent. Thanks for listening. And thank you for being there for me. It means the world.