#actually the best sleep ive ever gotten is when ive gotten covid shots

[savetheghost]

would love to explain how caffeine works not by supplying energy but by depriving your cells of the capacity to FEEL tired. would also love to explain how caffeine evolutionarily came about as a heart exploding pesticide. as a whole I spend most of my passing glimpses into your life in genuine fascination. damn bitch you live like this but appraisingly.

erryone wants to study me like a bug

but yeah nah the only way to gain energy is to rest and im incapable of turning off

i dont usually actually drink that much caffeine unless im being forced to like

work in less than ideal circumstances (overtime, while sick, etc)

cause i AM trying to work on my sleep hygiene but im a severe insomniac with 0 circadian rhythm and all i want to do all the time is sleep

i just straight up cant, and when i do its for maybe two hours at a time

so being able to not feel tired is fine even if i secretly am so so so so so fucking tired

#you should see what color my eyelids are #actually the best sleep ive ever gotten is when ive gotten covid shots #my body has no clue what to even do with that so i just pass the fuck out #god id love to sleep #cant do sleep meds cause its way too risky with diabetes #plus sleep meds are only really a temporary solution to help with the sleep hygiene #currently me and my therapist are working on making me associate my bed with only sleep #so instead of lying awake in my bed i try for 20-ish minutes to sleep and if it doesnt work i get up again and do something low energy #like reading a boring book or something that doesnt have a backlight or need excess amounts of thinking #plus using like chamomile tea and stuff #i havent noticed a difference but like im not expecting immediate improvement or nothin

[danideservedbetter]

Day 7, 8, 9, and 10 / Elaboration

Hey y’all! I said yesterday I would elaborate a little more on what my doctor’s visit yesterday told me, and here I am to do just that! I meant to yesterday, honestly, but by the time I got home my medicine had worn off and that wasn’t looking very likely 😅😅 But regardless!!! Here is what my results look like and honestly? These things probably have been affecting my sleeping disorder to a degree I’d previously disregarded without detailed info I’ve gotten from these tests.

Full write up under the cut!

—I got two major tests done, blood work and a genetics test. Back in my hometown the nurses couldn’t even figure out how to open the damn swab, but technology here managed to map out my entire DNA sequence which is utterly NUTS to me.

—My body is deficient in almost every important vitamin known to mankind, which makes sense because my diet is not… the best 😅 So, I started on several (SEVERAL) supplements to start out.

—I say start out because it’s very likely that I’ll be taking vitamin C and some liver enzyme through an IV once a month. A younger me might’ve thought something like this was scary, but at this point I’m so desperate to be healthy that getting nutrients drip fed into my system for them to work quicker sounds just fine to me.

—Other than that it’s normal lifestyle stuff. Eat more fruits and vegetables (I’ve been eating olives by the can for like days and I intend to buy fresh fruit packets for breakfast whenever I can afford them) as well as staying more active— which I DEFINITELY have been since I moved closer to New Orleans, in Louisiana proper where my dad lives.

But enough of the boring medicinal stuff. I’m sure you guys are much more interested in the whys— is there a reason my hypersomnia is so bad? Is there a deeper explanation than “lack of vitamins bad and you should feel bad”?

Well, yeah. YES. The genetics test revealed a metric fuckton to say the least 😂😂😂 but the most important was what kinds of diseases I’m predisposed to or how my body can process certain types of hormones/enzymes/proteins. Things like why caffeine won’t work for me (my body processes it very fast but not very thoroughly) or my metabolism being the strongest recorded genotype (which is why it’s been so hard to gain weight). Below, I’ll go into detail about stuff my new general doctor’s in-office geneticist (I still can’t believe that’s a thing I’m typing) has revealed about my disorder.

Naturally, this is specific to me because of my parents and our family lines. Maybe if you see info pertinent to yourself, looking into genetic mapping may be a good idea for you?

We are pretty confident that I have Idiopathic Hypersomnia. The reason for this is that a tiny link has been found between individuals who contracted mononucleosis in their childhood and adolescence and individuals who fell within the sleep cycles indicating IH. Now, IH will be genetic sometimes, but considering I’ve tracked my disorder to starting around 14, the same year I contracted Mono, the coincidence definitely doesn’t seem like… well, a coincidence. My blood test shows that I do in fact have the antibodies in my system, and they’re doing something… odd.

The geneticist found some “active” antibodies. Well, not some, really 😅 Basically, she’s surmised that these antibodies have a hair-trigger response and can react to any given environmental factor (stress, hunger, etc.) to the point where they activate as if they think they’re **fighting off a virus that’s been out of my system for ten years.** Of course this takes up an inordinate amount of energy, which is her hypothesis as to why my hypersomnia is so random and varies in intensity. The goal for this summer is flushing these antibodies out of my system.

My previous neurologist tried out a couple stimulants and then shit insurance prevented me from trying any others. So I’m stuck on something traditionally prescribed for adhd. A narcotic. *However* since my body is severely dysfunctional in general, the way I describe it is I basically have to induce a high to stay awake and function normally. We want to eventually get me off of these kinds of drugs, of course, since prolonged exposure weakens their effects and they’re highly addictive.

Another in credibly interesting thing we found is that I'm lacking in three major hormones. However, it's not because I don't produce them. I've never identified with symptoms of depression (anxiety, certainly, but not depression) yet for most of my life my childhood general practitioner insisted I had it. Well, the geneticist found that while I'm lacking in serotonin, dopamine, and melatonin, which yes are the two major mood enhancers and then the hormone that induces sleep, it's not because I can't produce them. It's because my neural transmitters are so damaged from a less-than-good diet and years of exhaustion that they simply can't process them. Just as the antibodies can have a hair-trigger response to environmental factors, so too can these processors. Simple things like a good meal, my high from my stimulants, or even micro dopamine shots from getting things done can activate the transmitters. Another thing on the docket for the summer is fixing these permanently with treatments of vitamins and supplements.

My stimulants have caused appetite issues, unfortunately, and that plus Covid at the beginning of this year caused me to get down to my lowest recorded weight ever, 94 pounds, which I haven't weighed since before I hit my final growth spurt way back in middle school. My dad does physical labor (he's a contractor who frames houses in the humid heat of the Deep South lol) so he's used to feeling tired. When he caught Covid, he said that he'd never felt as tired, drained, or out of it in his entire life. He never gets sick and hardly goes to the doctor and NEVER takes off work because of health, but in his last few weeks before full recovery he had to take off early multiple times. He was floored when he described the brain fog and exhaustion and I told him that I had no idea I even had Covid, because I just thought it was my disorder acting up. It was only when my grandmother started feeling tired that we got tested and we tested positive.

All that said, we think that there's hope for a future for me. She said that while there's no cure for IH, the cause that I have may can be mitigated by changes in exercise, diet, routine, and medication,to the point where I may mitigate symptoms of my disorder entirely. I'm still setting up appointments with a new neurologist here in the city, though, because technology is of course more advanced here.

And again, taking all of this into consideration, while it was looking likelier by the day, we've both agreed that I'll be here in the city 'til New Years. Which means no school this semester, but if I can go back in spring at more than 20% functionality and maybe succeed, I'm perfectly fine having to remain on break.

However, another good update: I weigh 103 pounds! I'm steadily gaining weight-- which means the other medication, the one for my appetite, is working as it should and as long as I stay on-track I should reach my goal of 120 by the end of the year as well.

So, yeah! That's what it's looking like. I have another appointment to go more in depth with the results tomorrow, but for now I'm planning out my week since I decided to let myself rest all last week. I'd love to finish helping out for our current podfic, ACTUALLY start the damn 100 Theme Challenge (LOL), finish betaing something that's been on hold for months, properly reconnect with our discord, catch up on all the media I fell behind on, clean my damn room, and establish a budget for this week on what I can buy. A more specific plan for today will follow, but til then, I hope this gives everyone some insight on what I'm looking at and how I'm gonna try to fix it.

Xoxo

Dani

#idiopathic hypersomnia #TW: weight #TW: anxiety/depression mention #health post #genetics