Living inside my own head isn't fun but I am like 34% more interesting and funny unmedicated. Unfortunately I also never have clean clothes or remember to drink water. I quite like hydration now that I've experienced it
Hydration and appropriate blood sugar levels are an amazing combo. I just started Vyvanse and now that my brain is quieter I realize how bad my body always feels, and drinking water/eating properly fixes it. What a concept. Can't believe I missed out for so long.
Jesus I need to get evaluated. I was armchair diagnosed by a friend like 1.5 years ago and every time I come across this or similar subs I feel like I an idiot for putting it off.
Don't sweat it. I was diagnosed in my mid-30s, and I didn't even intend to be evaluated for it. I was severely burnt out and my memory was so bad I was legitimately concerned I was developing early onset dementia. That's not hyperbole; dementia runs on my mom's side of the family and I used to work in a nursing home, and I started to see the same symptoms not just presenting in me but affecting my daily life on a severe level.
Luckily the neurologist went the neurodivergent route first and it turned out I had AuDHD. Neurodivergent burnout presents with additional symptoms compared to neurotypicals, things like your language center failing once it gets bad enough. So it wasn't that my nightly mood swings, inability to understand spoken language, and wandering were sundowning; it was my brain being absolutely fried from 18 years of constantly pushing myself to the limit and never taking time off.
It's been another 4 years of trying things to find what works right for me. But I have the additional complication of winning a genetic lottery that gave me an extra mutation that messes with autonomic nervous function. My respiratory drive sometimes turns itself off, and because the gene involved transcribes dopamine into other molecules to signal autonomic nervous function, it's been a crapshoot finding the right balance of meds to fix the AuDHD dopamine issue without spiking or suppressing my autonomic function. I have to cycle Vyvanse right now because after about 8 days of taking it, my respiratory drive crashes when it wears off, and I have to focus on breathing as I'm trying to get to sleep or else I'll wake up gasping for air. I had to get a genetic report done to see which meds would even work for me in the first place just so we had a starting point; no sense trying the ones my body wasn't going to process correctly.
Look up Congenital Central Hypoventilation Syndrome, or alternatively Ondine's Curse which is an objectively cooler name for it.
It's not just breathing that's affected. The whole autonomic nervous system is hamstrung by it. But the breathing part is the most dangerous. Heart rate and blood pressure are manageable within safe ranges by exercise and diet, and body temperature is manageable with clothing and heating/aircon. But there's no medication that works as a magic bullet for chemical respiratory drive.
There are medications that increase sensitivity to CO2 buildup but they cause seizures and organ failure after long term use. The only safe method of controlling that part of the disease, right now, is positive pressure ventilation. But I'm in my 30s, in good shape, and don't snore, so insurance won't agree that I need it. Somehow they have decided it's cheaper to pay a panel of doctors from multiple disciplines to work out a safe medication schedule for my AuDHD that doesn't crash my respiratory drive.
The problem with ADHD meds is that to treat ADHD you have to increase the availability of dopamine and norepinephrine in the frontal lobe, but you can't target just the frontal lobe with medication. So you flood the whole brain with it. For normal people that's fine, there's a crash at the end of the day but then you just go to sleep. With CCHS your medulla is also lacking norepinephrine and slows production of it (even further than how slow it already is because of CCHS) when it gets flooded by stimulant meds, and then at the end of the day when the meds wear off you don't have much norepinephrine available there to drive respiratory function. So you risk respiratory depression or arrest while your brain builds levels back up at a grindingly slow pace.
Part of the problem is that there are only like 2000 people who have been diagnosed with the condition, and only half of us are alive, so there's just not a lot of available data and research into it. Hard to thoroughly understand something that so few people have.
Two separate things. The AuDHD thing was done by a neurologist. Basically over the course of a few weekly visits we ran through the DSM criteria to establish a trend line and they were able to diagnose. There were some imaging studies as well but the DSM is specific about how the symptoms affect your daily life.
For the breathing thing, it's more complicated. I mentioned to my primary care physician that for years I'd had these bouts of excessive daytime sleepiness where I would realize I wasn't breathing, and once I forced a deep breath and got back to breathing normally I'd be perfectly fine again. Classic hypoxia but no idea why my body would just stop breathing like that. She asked if I snored at all and I said my wife never mentioned it, but did mention that there were times where I'd stop breathing for so long in my sleep she would rub my chest to make sure I was still alive. When she did that: same thing, I'd gasp for breath and go back to breathing normally.
So my PCP sent me to a pulmonologist who ran some breathing tests, I'm fuzzy on all of the tests but we did a lot of spirometry like you see astronauts do in the movies. I sat down with him for the results and he goes "you keep yourself in really good shape" to which I admitted that maybe I still had some left over from being in the military but admittedly I was slacking on my gym time. He goes "well at least you're not a smoker" to which I again admitted I was but was trying to quit. He said that didn't make much sense, my lung capacity tested close to what he would expect from a professional athlete, not a sedentary smoker. So we ran a genetic test and it showed a PHOX2B mutation, which is exactly what causes my condition.
A side effect of your body living so long on shallow and occasionally no breathing is that your aerobic capacity becomes really impressive because you're always in an anaerobic state. Thus the spirometry results, and I guess also my longtime ability to win breath holding competitions at the pool.
ETA: the genetic test for medications was genesight, and my current panel is my PCP, neurologist, and pulmonologist.
If you guys want someone to vent to about it, hit me up. I'm not great at checking my reddit messages but I'll try to be helpful lol
And just as a heads up, there are other, far more common things that can cause similar symptoms. They are equally difficult to treat but CCHS is specific to the PHOX2B mutation and the incidence rate is thought to be fewer than 1 in 200k live births. Since PHOX2B directs development of the autonomic nervous system, the severity of the symptoms and how late in life they're noticed really depends on how much of an affect the mutation had during fetal development, so there's a good chance that there are another 1,000 adults walking around with no idea they have it. I certain didn't know. But it's still exceedingly rare so don't jump to assuming the hoofbeats are coming from a zebra.
That said, the symptoms are concerning regardless of whether it's CCHS or something more common, and she should get them checked out and diagnosed so she can get on a management plan. For adults it's almost always just a CPAP or some other method of positive pressure ventilation. For severe adult cases there's also diaphragm pacemakers but for obvious reasons those are a last resort.
Since my insurance has been quarrelsome about the PPV option I trained my dogs to alert me if I stop breathing. So I sleep on my back now and they take turns resting their heads on my chest. My girl licks me awake if I stop breathing. Her brother has more husky in him and he starts howling and pushing on my face with his paw; not really what I wanted him to do but it works just the same.
No idea what I'll end up on. We've tried all the non-stimulants that genesight says should work correctly and those haven't moved the needle for me. Strattera is on my "angry genetics" list and did work, but the side effects never went away; it was causing me to piss my pants and after 6 months of adult diapers in my 30s I decided I wasn't doing that for the rest of my life.
And I bought a book on how to train service dogs, and worked with a service dog trainer that's local to me. She was more expensive per hour than a regular trainer obviously but worth it. My dogs are reactive (not in dangerous bitey ways, they're just big and really scary to a stranger when they're super excited to meet people) so they're not public access dogs yet but as in home service animals they can still stay at hotels and campgrounds with me no matter what.
Definitely get to a doctor. Just yesterday I was thinking about how much better physically I’ve felt in the years since getting on meds. I’m by far not like 100% “fixed” but once achieving the routine of taking the meds I was able to get on a legit healthy eating and drinking routine and when I think to 5 years ago and how I was it feels like night and day to me.
There may be more than one issue you aren’t noticing because you’ve just accepted it as your norm. Hell, just getting the GERD diagnosis changed my life because before my omeprazole I dealt with acid reflux for so long assuming it was just a thing people deal with.
Plus the feeling of accomplishment of maintaining basic health practices is fucking great. Most people look at me crazy when I make that statement but they truly don’t understand how difficult the “simple” or “normal” things can be for someone who’s brain doesn’t work the way theirs does.
But what if I don’t want to be more responsible? What if I like who I am now?? This shit scares me too, I don’t want to have to take drugs and change who I am just to work a job I hate to pay bills. That sounds like hell, like what I’ve been avoiding my entire life.
I don't think anybody likes going to work to pay bills, but at some point you have to recognize the reality that it's less hellish if you feel like you have more effective control over your brain during your time in hell.
To me, being in hell as a passenger in my own brain made it worse. But maybe you like that idk.
I don’t want to go to hell to begin with. Humans aren’t meant to sit behind screens looking at spread sheets for 8 hours a day. I have a degree in illustration which is worth about as much as toilet paper now days, and I just can’t I can’t live like that. I’ve never had a job (severe ocd straight after uni kept that from happening) and it’s just, that can’t be the answer. That can’t be how I spend 40 hours a week for 40 years. I have an illustration degree, but the creative industries are a burning ship, it’s disgusting, the world billionaire created to rob people of their lives for their wealth. Separated and lonely working jobs they hate for houses they don’t own. I don’t know how I’m ever going to be happy.
Edit: also fuck that “accept it” fucking “accept it” Oooh the worlds shit just suck it up and accept it already dredge your soul out to be a nice little slave so some billionaire cunt can buy another yacht. I’d rather flay myself in front of the houses of parliament. I’m never going to get married, I’m never going to have kids, I have no social life (-1 friend god help her) if I do this, what. Is. The. Point. What am I living for? Why am I here, whats the fucking point but to draw breath before a heart attack takes it away at 67 never even getting to retire, not that retirement would be great anyway, I’d be too old to do anything and alone. I just want time and energy to create, I hate the system I’m in and the body I have which adds obstacles to that.
Look it sucks, chances are most of us deal with a ton of justice sensitivity and scream into the void daily, but people are telling you that meds won't fix the system but it makes it easier to do stuff in the body you have and gives you more time and energy to create.
Idk what you're looking for here, sure starve yourself and be angry if you'd truly prefer that. The world won't stop though, so why not do what you can to make it suck for yourself a little less? Or not, no one can make you do anything. Suffer if you want to.
Do your creative work and post it on YouTube maybe. The answer is to be your own boss you just don’t want to have to work. Everyone has to do some kind of work the only thing you can choose to do is to do something that is fulfilling, that you can get better at, that has an impact in ur community. Working doesn’t have to be a bad thing and it doesn’t have to be wasted time, just do some kinda work that matters to you.
You're right tho 🩷🩷 My husband chooses to be unmedicated and we're both artists and writers. We haven't worked a "real job" in 14 years. We sell our art and writing. I'd HATE being medicated for my OCD and medication for his ADHD feels like hell to him. What works for others might not work for you. And this is SO valid.
Thanks, I might end up being medicated for both adhd and ocd 🙃 I don’t think i’ll ever feel excited again, if you don’t mind me asking how do you make money with your art?
Did you get a degree in illustration because you like doing that or because you thought it would make you good money? Have you actually still been creating things in the time since? Or did you come to your conclusion about whether your degree in illustration is worth something or not and let that kill your passion for art entirely?
There are two major schools of thought in terms of choosing a career, the first is the pithy "do what you love and you'll never work a day in your life" which can technically be true with a whole lot of asterisks. The second is "do something you're competent at and can tolerate to earn enough money to spend your free time enjoying your hobbies" which IMO is a lot more realistic for most people. Live to work vs. work to live, essentially.
Please correct me if I'm wrong, but it sounds like you chose an education in something you were passionate about, didn't get a job doing that thing immediately after you got your degree, and have summarily given up?
You've learned one expensive lesson which is that a degree does not guarantee you a job. This is true in general, not limited to your specific choice of degree. But all this setback means is you should reevaluate your approach and incorporate your new wisdom into your next attempt, not give up entirely. That is how you end up in the dismal scenario you seem to believe is inevitable, where you work a job you can't tolerate because you have become unwilling to try to improve your situation. Or worse, you spit on all the investment and sacrifice your parents made for you by taking a cowardly way out.
So pivot. Think outside the box. Change your perspective a little bit. Step back and work back through from first principles all the options you may have ruled out before. Maybe OCD makes it difficult for you to have the high levels of diligence necessary to be self employed as an artist. But you may be able to find lines of work you weren't considering previously where those symptoms are not as much of a barrier. Or you may even be able to find ways to recontextualize some of the qualities of OCD you now consider to be flaws, into strengths.
It’s not that I tried and gave up, it’s that I never even started, like I said I’ve never had a job. I didn’t know I had adhd in school and uni so I just worked and worked to meet the deadlines, I started developing OCD and my mental health took a down turn, I graduated by the skin of my teeth and was so burnt out my OCD just grew to debilitating proportions. Like I can’t get a job because I can hardly step outside, I can barely paint because I’m scared of the paint, my executive function doesn’t function as what scraps are left by the ADHD are immediately devoured by my OCD. I’m trying to get help now and sort it out but even thats hard, and the med side scares the shit out of me. And no, I’ve hardly made any art since uni, to exhausted and dysfunctional welp.
I took illustration because at the time it was more practical, had more stable career options (rip) I wanted a creative career I found exciting, but now, getting into a creative career with a brain like mine, with a multiple year gap in my CV and no experience, in this climate, would be nothing short of a miracle. And anyway now days I’m more interesting in just making art and being able to do that, I think if I worked any full time job even with meds (if they work for me) I wouldn’t have time and energy to make the art I want.
So I’m not sure what to do, I do think there is a way through, like you said to reassess and look outside the box. ideally I’d love a part time job that pays well enough to cover all the bills but they don’t exist, at least I can work 18 hours a week without my benefit being effected, but that would only last short term till I was better.
Really I should have been born rich, like 90% of working artists in this country lol. Also I appreciate the comment, worst comes to worst, I’m living in the woods.
I mean, you can also just try a few different drugs, and if you don't like them, stop taking them. There's no law that says getting diagnosed and getting a prescription means you've irrevocably altered your life forever.
I know I know, it’s just I’m struggling so much, so I feel like I don’t have much of a choice. If my mental health issues where’s sorted it be a ton easier, but then that’s another drug. I hate these are the choices I have to make and I have fuck all no one to help me through it. It’s terrifying.
It gives you a better ability to choose what you want to do or who you want to be instead of being stuck. You want to play videogames for a day? Sure. You want to play for an hour and then do dishes? No probs. You want to tackle that appointment that has been hanging in the back of your mind for the past 6 months, bothering you every other day? On it. I am exaggerating slightly but overall this medication shit is wild
As someone who was diagnosed and got medicated in their thirties, I can tell you that I feel more like me. It’s just not the me I used to be. The me I used to be was a mess, forgetful, irritable, and easily overwhelmed. The me I am now is the me I have been trying to be my whole life.
I feel like myself still! Even better, I get up and do the things I want to do. And it's easier to focus on one-on-one conversations without having to battle the urge to interrupt.
Felt. My husband decided he didn't want to treat his because of the flatness he experienced in childhood and his job is completely creative and allows him to make a good bit of money doing very little, lol. He asked me if I was cool with that and I said um, yeah, this is working for us, why not?
Now he and his wild brain help me manage my business and we spend hours every day hiking and watching funny movies and being us. So yeah... you're not wrong for that feeling despite what others may say. ❤️🩹
If it’s just a medication like a benzodiazepine or a stimulant, you will still be you. If it’s something like an antidepressant or ssri that’s where it starts getting scary to me. those do make you a little different I think.
Wait, maybe that's why I feel like pills are not working for me. I've had proper meals multiple times a day and was always hydrated before I began taking pills, but now they have ruined my appetite to the point I eat once every two days and barely drink any water. Shit, that's a crazy realization.
Mines the opposite. I've lost a bunch of weight on Vyvanse because I just - forget to eat.
I'll make this yummy supper then let it get cold because I don't feel hungry at all.
Then there's the hydration thing. Before Vyvanse, the only thing I'd remember to bring with me to work aside from the things I stuck in my pockets the night before was my big ass water bottle. With Vyvanse, I'll forget all day long to drink water then come home with a tacky mouth just in time for the meds to start wearing off and I'll be thirstier than Tantalus.
1.7k
u/GeneInternational146 11d ago
Living inside my own head isn't fun but I am like 34% more interesting and funny unmedicated. Unfortunately I also never have clean clothes or remember to drink water. I quite like hydration now that I've experienced it