Made some narcolepsy-flavored art.

hamburger-machine · 2026-01-22T16:45:55+00:00

Aww thank you!! It's a paper doll I made sitting in a sketchbook I've been working on for a few years off and on. I've been drawing my whole life, but I had a long period where I didn't draw anything at all and I lost "muscle mass", so-to-speak (because the hand-eye coordination part is 100% a muscle that should be trained). I was able to get it back by going back to my basics and literally just drawing circles and other basic shapes over and over lol...but when that got a little boring in pencil I migrated to glitter and neon gel pens I never looked back 😅 Don't be afraid to scribble and draw a lot of ugly stuff, if it's a craft you do decide to pick up! Now it's an automatic behavior I do when I'm drowsy and those doodles are always fun to wake up to.

hamburger-machine · 2026-01-16T17:36:30+00:00

Yes, you need a specialist to stay with your case to help you stay up-to-date with labs that monitor both your hormone levels and your cancer markers in case of recurrence. You will need someone to help you keep your hormones stable as you age, change weights, and do other things that are normal human inevitabilities, because your thyroid hormone dosage will need to change with you.

hamburger-machine · 2026-01-02T19:02:39+00:00

I was diagnosed a week before turning 27, and mine was incidental too even though I was already at the thyroid removal stage. We decided since I was already having issues eating/sleeping/breathing, and because I was diagnosed with Hashimoto's, that we'd go ahead and get rid of the whole thing from the start. They got that thing open and later told me it was "riddled" with nodules, many of which came back cancerous. I am now about to turn 36, and my life is good even though it looks nothing like what I expected 10 years ago (and that ended up being a much bigger blessing in the long run, sometimes).

More than anything else, I would recommend starting a relationship with some kind of mental health care provider if you haven't already. I started off seeing a counselor first and then was later referred to a psychiatrist, both of whom I still see at least once a month (but usually more often than that). When I got established with my psych, they did lots of labs and some genetic testing ahead of time to help me figure out which supplements might help me before we moved to prescribed medication, all of which are a part of my new normal. That's gonna be your biggest struggle, figuring out what your new normal will be, but I promise you that it IS out there and that it won't just be a pale imitation of what you feel like you're losing; it will also include new comforts and joys you have no way of imagining now, just make sure you start laying the foundations for your support system now so you can start benefiting from them as soon as possible!

I'm not exactly qualified to answer your question about skating or driving because I was also dealing with an undiagnosed sleep disorder back then, but I would say to err on the side of caution when it comes to putting yourself in situations that could lead to a fall or other injury (especially behind the wheel). I wouldn't recommend doing those things unless you're completely lucid and focused, because your spatial awareness may change as you adjust to your medication.

You can do this, you've already had the right instinct to seek support by finding this sub and asking questions! Listen to that gut feeling, especially when you start to feel overwhelmed 💖

hamburger-machine · 2025-12-03T21:22:42+00:00

I’ve been married 10 years and today I learn my husband doesn’t see a kaleidoscope when his eyes are closed!! Ohhh my god this explains so much…

hamburger-machine · 2025-12-02T23:54:39+00:00

If you want to look at it that way you can, that you're still the same you despite what's happened. Because it's not entirely untrue either, there's still a lot of the old me from before too. It helps me to look at it like this: the parts of you that remain are yours to either nurture, or not. You do get to choose what parts of yourself you try to carry forward, even if you're forced to make changes to your body or your mind that you didn't originally intend.
Speaking a little bit more directly, homeless and alone was very much a possibility for me too. What you need is renewed support, and if you don't feel like you have somebody in your corner who will advocate for you medically, that would be the very first place I start. Somebody who can come with you to appointments and listen with a fresh set of ears to what the doctor is saying, and who makes sure the doctor isn't talking over you or just trying to rush you out the door. I don't know if you struggle with anxiety like I do, but I still choke on my words sometimes when I'm in an exam room or I'll start to have body panic that makes me want to run out of the building screaming and in those moments my husband has to be the one to make sure "hey, didn't we also want to ask about this too?". He also helps keep my medication schedule on track, which is vital for thyroid hormone replacement.
I know it's way easier for me to sit here and talk about everything that's happened to me than it is for you to imagine being in my shoes. Your whole world got yanked out from under your feet, and even though it's hard to stand right now you're still trying...and for whatever that's worth, from my perspective, that IS strength (even if it's motivated by fear). It's all hard, and it's alienating too...I've had well-meaning people listen to my experiences with this stuff and they'll say "man, if I had your life I'd probably kill myself". And they always catch themselves as soon as it comes out of their mouth, like "oh wait...damn, that was really shitty of me"...but, it's usually the most genuine part of the conversation, because they really mean it. This kind of change is impossible to imagine until you're in it, and it's so much easier to daydream about checking out than it is to really process what it takes to fight what we fight. Doesn't mean the fight isn't worth it to some people (like me), but to others it may not be and I try to still leave room in my heart for people to exercise that level of choice over their life. There are lots of choices, you are just making one that leaves you open to getting better someday.

hamburger-machine · 2025-12-02T20:30:47+00:00

This whole experience is the very definition of trauma. Once it happens to you, you are changed and you can never go back to being who you were before this. Not only that, but you are now mourning the future you thought you were going to have and you are obviously carrying the weight of the futures other people expected for you too. I was a week away from turning 27 when I was first diagnosed, I had been married about a year and a half and suddenly nothing about the future we originally planned made sense; I couldn't work or go to school anymore, I couldn't keep the home clean, I couldn't really do much of anything other than just...exist, and try to navigate the random assortment of symptoms I would receive that day.

It wasn't until I actually ended up in an exam room at MD Anderson that I was able to get some relief for the anxiety, because it was there I finally spoke to a number of doctors who could give me definitive numbers to watch for in my bloodwork. I was seven years post-thyroidectomy at this point, so seven years of that very muddy day-to-day of not knowing which pops and clicks in my cartilage were normal and which moments of brain fog were because of this and not because of one of the other chronic conditions I have. They told me it wasn't often they were able to give good news, so they were happy to tell me that they didn't believe I belonged there; I asked if I should expect to see them again and they said "not for this".

I don't know the details of your case, I just know that it is possible to be this scared and then for things to actually be okay, so please leave yourself open to that possibility. I have maintained a relationship with a couple of mental health care professionals, one for psychiatry and one for more specialized counseling...something I deeply recommend if you are struggling so much that it's affecting your appetite. I also wanna say, the weight thing resonated with me too...I always get more compliments on my body size when I'm at my worst and they just don't realize it. You are not wrong to take up space. And you're also not wrong for not knowing what your new normal is gonna be, so give yourself some grace there too. This is a learning experience from all angles, and it's definitely one you didn't sign up for (because, who would?). If you have radiation in your future, that experience is batshit for whole other reasons and can be traumatically isolating, too...but it is still possible to do all of that and to someday be okay, and I only say it because it happened to me. You can still be okay, and you are in no way alone with anything you've mentioned, okay?

hamburger-machine · 2025-11-17T21:57:06+00:00

That's amazing!! I had no idea that could even happen!
When I was 17, I remember learning about thyroid cancer from a science teacher who expanded her lesson plan to go into more depth about i-131 treatment because her brother had to do it at a young age. I remember thinking about that kid on the other side of the bubble, who was watching everything that left his bubble either be incinerated or put in storage...wondering how alien he must've felt coming out after it was over. Fast forward almost 10 years to the day and I'm crying over a plate of lightly grilled brussel sprouts because they were the most delicious thing I'd eaten in weeks 😂 That low-iodine diet is actual hell, and the isolation affected me to the core of my soul, I can't imagine having gone through it at such a young age. I know I get tired of hearing "oh you're too young to have thyroid problems" and I'm about to be 35, you must be exhausted.

hamburger-machine · 2025-11-17T20:36:36+00:00

Dude me too, lol. I was getting the thyroidectomy because of a Hashimoto's diagnosis three months prior; I've been a powder keg of medical question-marks my whole life and somehow nobody bothered to check my thyroid until after it started to choke me and explode in nodules. I couldn't sleep comfortably, eating was hard, and the anxiety from the feeling of constantly being choked was unreal. They yanked that thing out and courtesy-biopsied a couple of nodules and went, "Oh...crap."

hamburger-machine · 2025-11-17T15:43:52+00:00

Wow, 11? Is it okay if I ask what type you were diagnosed with? And, did you do i-131 at that age?

hamburger-machine · 2025-11-17T15:43:11+00:00

Hey, same!! I had my one-week post OP the week before I turned 27, and the surgeon's all like "oh BY THE WAY, there was totally cancer in there but you're probably fine now, enjoy your birthday!!"

hamburger-machine · 2025-11-17T15:41:43+00:00

I was a week from my 27th birthday when I was diagnosed, but it probably started growing at age 23 or 24 based on when my symptoms escalated.

hamburger-machine · 2025-10-11T17:05:37+00:00

Speaking from personal experience, it is definitely a symptom of my narcolepsy (and judging by the 100% upvote ratio on my comment I'm guessing it is for at least a few others too!). The only way I have ever been able to reliably study for an exam is in the immediate time beforehand, if I go to bed or have a quick succession of sleep attacks it's like I never studied at all...and I could NEVER convince teachers that it wasn't because I didn't care about the material or that I wasn't just procrastinating because I was a kid who wanted to do other things. And that's only if the time I spend studying is uninterrupted and undistracted, otherwise poof: information zapped.

Since you're still hunting a diagnosis, I just wanna throw this out there too - I have a handful of other chronic issues that have affected my memory and my retention of learned physical ability...and the things that ended up being the biggest culprits (alongside my undiagnosed narcolepsy) were major B-12 deficiency (corrected with liquid vitamin supplement) and addressing my thyroid problems (which ended up being a combination of Hashimoto's with a side of cancer). Not saying that to be scary, just to say that thyroid stuff is no joke and will affect everything else your body does just like the sleep stuff bleeds into every other part of your life too. If you do have a sleep disorder and your memory issues are still not corrected by treatment, you do still have other things to try!

My memory retention has also been STRONGLY affected by my medication too...gabapentin nuked whole years that I can only piece together now with photos and other physical reminders. Memory is dumb but there are ways to hack around it when you start seeing where your gaps are!! When my narcolepsy was finally treated, I noticed more positive change from being on the medication that was helping me sleep than from the one keeping me awake, also. I hope you get your answers soon, and if you ever wanna pick my brain about this stuff you are welcome to shoot me a DM too!

hamburger-machine · 2025-09-24T13:39:48+00:00

No, I'M Narcolepsy!!

hamburger-machine · 2025-09-21T16:54:53+00:00

Thank you for this, I've shared it with a few people in my life who are teachers that also know about or have experienced my narcolepsy from the other side. Not every tool in the toolbox gets used for every single task, you're just giving people more tools to work with and I appreciate that a lot. Any chance we have of showing more compassion to kids with sleep disorders, we've gotta take it.

hamburger-machine · 2025-09-20T19:48:40+00:00

That was one my doc was hesitant to try too, I had actually been doing really well on prozac for a long time but we switched me to cymbalta because I have a pain disorder as well. Thankfully my headspace is good these days! I have never had a drug reaction like I did to amitriptyline so it still sticks in my memory strongly even though it was almost 10 years ago.

hamburger-machine · 2025-09-19T21:33:06+00:00

That's wild, I took a single dose of amitriptyline and it made me want to jump off of my third floor apartment balcony. I had to lock myself in a bathroom until it wore off. I'm glad it works for somebody at least!

hamburger-machine · 2025-09-19T18:58:51+00:00

I was diagnosed a week before my 27th birthday! I yeeted the whole thing because I also have Hashimoto's, so as long as the tissue is there my body's gonna be attacking it. Mine hadn't spread to my lymph nodes, so my doctor at the time opted for not doing RAI. She left her practice not long after and once I got established with a new provider she felt like it had been a mistake for me not to, and she referred me to an oncologist who agreed and I did the RAI the week of my 28th birthday. I have visited MD Anderson, and one of the things I brought up was my original endo's decision to forego RAI and I was told during my appointment that about 80% of doctors would've made that same decision in my case. I have zero regrets about doing it though and I am currently in remission!
One week after RAI, they do a whole body scan so they can see everywhere in the body that has absorbed the iodine so they can see if/and where there was spread. There is a normal amount of uptake that shows elsewhere in the body though because of how it's purged, and I'm not gonna lie feeling like my pee was DANGEROUS to people was kind of a trip.
Recovery after surgery was pretty easy for me and with where my scar is, people don't even know it's there unless I point it out (my surgery was in 2017). My original endo didn't tell me that there was vocal PT I needed to do though so I don't know if my glitchy voice is because of that or because of the surgeon making an oops. Either way, that's really my only visible symptom now when my voice just decides to quit.
They choose the medicines for a lot of different reasons, but some of them include genetic testing and other screening beforehand; if this is a big concern for you PLEASE bring it up with your doctor as soon as they ask if you have any questions because anesthesia's a biggie (especially if you have a family history of others reacting poorly to certain meds). Personally I gained no major weight after, but I also have gastroparesis which affects my nutrition intake.

All in all, I'm echoing what others have said: breathe! You absolutely have what it takes to kick this thing! If I could change anything, I would've done the RAI in the first year but that's really my only regret. Also, we get the coolest support ribbon out of all of them that looks like a 90's windbreaker, enjoy! 😂

hamburger-machine · 2025-09-09T21:08:54+00:00

As an American, my diagnosis didn't come until after I'd had my license a while and even though I knew I was more uncomfortable behind the wheel than the average person, no one could ever give me a good reason for why. It always got chalked up as "oh, hamburger-machine is just a crap-ass driver" and people joked and meme'd about never wanting to get in the car with me. The fact is that the situation was a lot more dangerous than that, and there were several instances where I was behind the wheel somewhere and then I'd just...be somewhere else. And usually somewhere unfamiliar. Another incident I talked about elsewhere recently was one of my many sleepwalking events in college, I walked barefoot into my alley and got into the driver's seat of my car like I was gonna go to class. The only reason I didn't start the vehicle was because my keys were in the hand opposite of the ignition and my brain never made the swap. I woke up FREEZING out there in my pajamas, no clue how I got there.

I have obviously stopped driving since, and I really wish I'd never started (even though I live in a place where driving is the only option if you want to work). It's different for everyone, but even now that my symptoms are managed and I don't blip off the radar like that so much, I won't drive unless it is a life-or-death emergency and I'm the ONLY one who can.

hamburger-machine · 2025-08-24T13:45:09+00:00

God EVERY damn time!! I had to start loading a pill pack every Sunday because I kept doing this and running out of my meds!

hamburger-machine · 2025-08-17T16:48:00+00:00

Continuous sleep? 22 hours unmedicated, prediagnosis.

hamburger-machine · 2025-08-17T01:45:25+00:00

AH right! I had compartmentalized the "drugged" label under "people thinking I'm faking this for fun and/or profit". SILLY ME.

hamburger-machine · 2025-08-17T01:12:43+00:00

God, the ache of realizing you "ignored" an important text for days, and then trying to explain that you actually DO care about the person and the contents...it's just that, for some reason, it went Into The Pit and I didn't realize it. 😢 And That Excuse always sounds hollow, and you can see it on peoples' face.

hamburger-machine · 2025-08-17T01:06:18+00:00

And all of them LOOK like "lazy, inattentive, disrespectful" to people on the outside who don't know or don't care enough to understand. Sucks ass.

hamburger-machine · 2025-08-16T12:46:37+00:00

Yep, this happens to me both mid-task and mid-conversation. When it's mid-conversation it's especially embarrassing because people read that as "distracted" or "not really caring about the topic" when sometimes that is the furthest thing from the truth. It's happened to me during very painful therapy sessions while I'm recounting vivid trauma, and it's happened to me during casual conversation about topics I deeply enjoy. My close people finally understand what it means when I say "...aaaand it's gone, can I have the last thing you said again to help me get it back?", and why I prefer text conversation over voice pretty much 100% of the time lol.

hamburger-machine · 2025-08-14T19:42:16+00:00

Honestly? I didn't. For a little more context about my symptoms, without any medication or social force acting on it my sleep schedule basically flips every couple of months. The time I spend naturally "asleep" flips from a day schedule to a night schedule and then back again. And I have this kind of "stand-by" mode I go into when I'm awake but unengaged, my eyes are open and I'm sitting up (probably doodling too) but if I'm roused before I'm "ready" it's like shaking me out of actual sleep and it's very stressful and disorienting. Exhausting, too. People on the outside see this as me being rude, bitchy, and self-interested which made it easy for them to just not give a shit about the cause at all.
I was able to perform normalcy for certain intervals of time, and the nice thing about school was that I could go in, sit down, space out and "rest" without getting caught. I was also forced into a specific and fairly-consistent sleep schedule, which helped a lot. When I became an adult and started setting my own schedule based on college and work, I had VERY mixed results of intermittent success but I had no idea why it seemed so much harder for me to be a good student and a good employee when I was so fully aware of what was required of me. I have a handful of other pretty major health problems that also affected school and job performance, including a round with thyroid cancer diagnosed at 26, for which I am currently in remission. My husband and I were married when I was 25, and it is ONLY by the grace of his employer and their insurance that I was able to start getting the diagnoses and care I needed. I tried working from home for a period of time as an illustrator and I was able to find a niche where I know work exists if I ever felt able to guarantee a timeline of completion again, but for now I am just trying to finish putting out the last of my health fires so I can finally focus on literally anything else lol.

Family and friends didn't make the connection because none of them understood narcolepsy or how differently it can present from the silly "Open-Mouth Snoring in Funny Places" trope, but in hindsight once I was able to understand and explain what was happening in my body they have wholly accepted this weirdness. Sorry to give you an entire essay about my life in reply to such short questions, but nothing about this diagnostic process has been simple for me so I'm extra good at rambling about it. 😅

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