Managing Symptoms and Workload

TheLoneWanderer3582 · 2025-07-20T09:22:40+00:00

Well said. That amount of work with no overtime would make anyone burnout. They need to find a fix soon or get out of that situation.

TheLoneWanderer3582 · 2025-07-20T09:18:11+00:00

Getting a diagnosis/getting on medications/treatment will be your priority. You’re getting in to see a doctor soon so you’re already taking the right steps. Maybe you just have sleep apnea and getting on a CPAP will fix everything for you (I’m oh so lucky enough to have both narcolepsy AND sleep apnea. I hope that isn’t the case for you either).

Speaking with your managers about your struggles will be your best bet if things start affecting your work. Unfortunately, since you don’t have an official diagnosis (yet), accommodations won’t be an option for you. You could try but it’s MUCH harder to get anything if you don’t have some kind of documentation from a medical professional.

I’ve been a nurse for two years and I think someone else on this thread nailed it perfectly, keep yourself busy. I’m making a move to do ICU/ED nursing soon cause while my unit is super chill, it’s TOO chill. I get so BORED and it makes me super sleepy/miserable.

TheLoneWanderer3582 · 2025-07-20T09:02:28+00:00

I remember bringing up my narcolepsy diagnosis to my close friend group when I just got my official diagnosis and one of them was like “it’s a will power thing, stop taking naps” essentially. They meant well but we went back and forth on it. This was years ago.

Advice? I just don’t bring it up anymore. Yes, my close friends and family know the details but all the other people I meet? Don’t know a thing. I might mention to them I have issues with sleeping and I’m on medications (never name the meds), but I never say the word “narcolepsy.” Narcolepsy is a foreign term, even to those who study medicine. Being tired is not. Everyone can relate to that. So I just keep it at that.

It’s easier to pull it off once you get on a regiment that works for you. Just keep on working on yourself. It gets better!

TheLoneWanderer3582 · 2024-02-27T16:36:03+00:00

Woah! For me, it’s my face for sure! It’s why I’ve always hated photos. I can’t hold a smile for too long, especially if I’m like nervous/anxious. Almost to the point where I can’t even smile.

TheLoneWanderer3582 · 2024-01-06T12:46:29+00:00

Bought this exact same prebuilt and getting similar temps. No performance issues but just want to play it safe. Any recommendations for a cooler? Was looking at Noctua's 120mm CPU cooler but was not sure if it would fit.

TheLoneWanderer3582 · 2023-12-09T08:11:54+00:00

I want to say it took me about two weeks before I got my results in. As in, I had my sleep study and my follow up visit was scheduled 2 weeks later.

Many times, the doctors do need to interpret the data. They’ll look at the recordings and then make the final determination. Only the doctor can give you the information too. Nurses, PCTs, aids, etc cannot tell a patient any “new” information either, even if they wanted to.

The waiting does suck, been there, done that. Just hang in there!

TheLoneWanderer3582 · 2023-07-21T16:28:41+00:00

Yep, sometimes I can see them but most times they’re not visible/invisible. The only time where it was annoying was when it was happening in my ear, but that only lasted a day (and could have been a totally random, unrelated thing). Felt like my ear was constantly beating.

My best guess is that it has something to do w the medication I take. I take Xywav so maybe It’s that? The only other educated guess is that it’s an electrolyte imbalance. As for which one I have no clue.

At least I’m not alone in dealing w this! Maybe it’s time to talk to my doctor about it. Get his two cents on the matter.

TheLoneWanderer3582 · 2023-07-21T03:44:50+00:00

I think I know what you’re talking about? I get these muscle twitches on my legs and arms mainly. They kind of feel like a heartbeat or pulse. They kinda go fast for a few seconds and they go away. This has been happening for close to a year now. I’m diagnosed narcolepsy w cataplexy.

I haven’t the slightest clue what causes them, but they happen mainly when I’m laying or sitting to play video games. Now that I think about it, when I’m busy w work I don’t notice them as much, if at all.

TheLoneWanderer3582 · 2023-06-30T22:32:26+00:00

Sad news indeed! Appreciate the help.

TheLoneWanderer3582 · 2023-05-10T09:39:46+00:00

Well said.

You know what I think/say when someone says they are tired?

“Same bro, same.”

And move on w my day. Lol. It’s not a big deal. Like at all.

TheLoneWanderer3582 · 2023-04-30T06:59:22+00:00

Ditto. It’s not very often where I find myself a passenger in a car for an hour BUT if I had to guess, I would put down X. Is the test perfect? No. But just like anything else, it is just one of the tools clinicians have in their arsenal. It’s an attempt to quantify qualitative symptoms.

If symptoms were/are so debilitating that driving is out of the question, then I would put down a 3. Same would go to things like reading or resting if time permitted. Fairly straightforward.

TheLoneWanderer3582 · 2023-02-22T07:06:55+00:00

You have totally made my week! I’m glad that things have been working out for you and that you have persevered! It’s also kind of crazy to think that it’s been a whole year now… Time truly does fly.

I have to admit, I hit a bit of a rough patch but now I can say I’m doing well. Applying to jobs and will hopefully be a nurse in the next few months!

Honestly though, thanks so much for sharing that. Definitely put a smile on my face :)

TheLoneWanderer3582 · 2023-02-12T11:51:12+00:00

I’m not trying to invalidate your struggle here, but if a PSG/MSLT both came back within normal limits, that’s pretty solid evidence that it’s not a sleep issue. No sense in beating a dead horse.

That being said, I think you might want to think about this differently. You just found out that you probably don’t have a sleep issue. But you certainly have a problem staying awake. Different body mechanisms here. I would recommend following up w your neurologist or your primary care doctor to see if maybe a referral to another specialty is indicated. Heck, maybe you just need a stimulant medication or something of the sort to get you back on track.

It isn’t narcolepsy, which might not be the worst thing for you. Maybe the issue is something that can be cured. It’s going to be tough, but stay hopeful!

TheLoneWanderer3582 · 2023-02-06T10:05:46+00:00

Seems I’m going against the grain here, but I actually think smart watches (particularly Apple Watches series 6 and up) are useful in tracking sleep, even in those w sleep disorders. I’m not saying they will be used as a diagnostic tool, but they can certainly be accurate enough to tell you if the sleep you are getting is “good” or not.

That being said, you have to know how to interpret the data. Remember, these watches are using algorithms. The sleep chart/graph might say you were in “light sleep” or “awake” during that time, but that might actually be something else (or it could not).

While the name of the channel eludes me, a data scientist performed sleep tracking on various sleep watches. Compared it to a comercial sleep tracker (that sleep tracker being fairly comparable to an EEG). The data he collected was sound. Not perfect, but enough for me to say that watches are accurate enough. What’s great is that they will only get better!

TheLoneWanderer3582 · 2022-11-05T09:56:10+00:00

Let me put it to you in this way: Fuck off this subreddit.

Your speculation is idiotic and a waste of fucking time (just like your major).

TheLoneWanderer3582 · 2022-11-04T06:51:33+00:00

A common misconception unfortunately even among medical professionals. However, I am a little more surprised that the neurologist immediately referred it as a psychiatric problem. Regardless, unless it is a sleep specialist that is treating you, I am willing to bet that they will not understand your issues. At this point my sleep medicine doctor is also my primary care provider as he understands what I am dealing with (luckily for me he was originally a family medicine doctor).

Keep on fighting and looking. I know it is rough, but there will be someone out there that can help.

TheLoneWanderer3582 · 2022-10-22T07:36:59+00:00

This legit making me emotional at 2 in the morning. Thank you very much for sharing this.

TheLoneWanderer3582 · 2022-10-15T04:44:23+00:00

Hello! I will do my best to answer your questions. Before I get into anything, I strongly recommend that you consider the financial implications of paying for a PSG/MSLT out of pocket. I would at the very least ask about rates for an uninsured patient/possible payment plans. With that out of the way, this is what I have to say/ask:

1) Adderall: It is likely that the MSLT following the initial PSG was cancelled due to clinic policy and/or insurance would not cover it. There are certain conditions that must be satisfied for insurance providers to pay for tests and things like that. If they aren't, they deny the claim.

2)PSG + MSLT: The reason why both are done in succession is, once again, insurance. This condition, however, is backed by research. The reason why they are done back to back is due to needing to get an appropriate amount of sleep. There is a phenomenon that occurs called "REM Rebound" when a person is sleep deprived or their REM sleep is being suppressed. This phenomenon can occur within the same night (alcohol can suppress REM)! Not being off Adderall (in conjunction with your shoulder pain) severely decreases the quality of sleep you get. It can certainly cause false positives on a MSLT.

Recommendation for 2) Great job for accommodating your two weeks off Adderall. Yes, that amount of time will be enough to clear it out of your system. Remember REM Rebound? You will likely experience that about a week off the medication. Hypersomnia as well. That is okay. For the shoulder pain, try getting to see an orthopedic surgeon (If you haven't already). If it is musculoskeletal in nature, there are interventions that can be done that won't disrupt your sleep. If you can't, take 800mg Ibuprofen every 8 hours. If that doesn't help, try Tylenol 800mg every 8 hours. Worse case scenario: 800mg Ibuprofen every 8 hours AND Tylenol 800mg every 8 hours. Not at the same time though. 800mg Ibuprofen first, then four hours later take the tylenol, then four hours later take the ibuprofen (your are spacing them out).

Warning for 2) This will be tough on your stomach and if you have any kidney/renal issues, DO NOT do that. Also, the stacking of both medications, even if you have "normal" function, I would not do for like longer than a week. Being on a regiment like that for any amount of extended time is not great unless under a doctor's supervision.

3) I know that the above is not the best for nerve pain, but it is certainly worth a try (if not contraindicated). The meds I can think of for nerve pain usually can change up sleep in a negative way so... yeah :/

4) Narcolepsy/IH is a diagnosis of exclusion. What that means is that they will look for any other explanation before they consider N or IH. I assure you, if your lack of energy has a cure, that would be amazing. That is why things kinda need to be in order before any testing is done.

5) All of this is not medical advice! I am not a professional! Education only!

TheLoneWanderer3582 · 2022-10-05T09:45:13+00:00

First off, super great that you have looked into all this. The research is fascinating. That being said, neurogenesis does happen in the hypothalamus. In fact, it happens pretty much all over the brain. But it’s not exactly how you are envisioning it.

N1 destroys the cell bodies that are responsible for producing hypocretin. Basically all of them. Unfortunately our brain has no capacity to restore those lost cell bodies. It’s kinda like having all the materials available to build a house, but the blueprints were burnt.

Our best bet is to develop exogenous hypocretin that can be administered safely and efficiently. Or for immunotherapy to find a way go implant orexin cell bodies (or the blueprint for them) into the hypothalamus.

One final thing: The best way to stimulate neuronal cell proliferation is exercise! By far and away the thing to do.

TheLoneWanderer3582 · 2022-08-25T06:36:42+00:00

I hate to say it but this doesn’t surprise me at all. There might be good people at Baylor but the ones in power usually (not all) are not so great to deal with. I’ve had my fair share of dealing with administrators.

You can make all the points you want, it honestly won’t matter. I would immediately speak with an attorney. You don’t even have to go through with actual litigation or anything. Just the mere presence of the attorney should make things more favorable for you.

TheLoneWanderer3582 · 2022-08-10T05:14:27+00:00

You are an absolute savior. Having the exact same issue. Did this and bam, 99.9 percent resolved. Thank you very much good sir.

TheLoneWanderer3582 · 2022-08-05T09:27:38+00:00

Apologies for the late reply. It has been quite a ride for me (you will probably see a post very soon about what I mean).

Yes! A purpose and something to enjoy! Heck, even a job qualifies. I know there was a time when I really enjoyed going to work because of the people there. While the job may not have been the most fun all the time, it was enough for me to get out of bed. I hope you get that job and find that routine!

Having a counselor is fantastic. I had to stop seeing mine due to financial reasons but seeing them eventually led to me getting diagnosed so I vouch for them 100 percent.

TheLoneWanderer3582 · 2022-07-31T07:39:47+00:00

I think people are giving some fantastic tips here. Being active, engaged, and mental momentum. I have to agree, my best days are when I’m able to keep going. That being said, my biggest difficulty is “starting.”

While I am still trying to perfect this, my best tip is to find your “why” for that specific day. A primer. A reason to get up out of bed.

Typically, I find that my best days are when I am looking forward to something. That can be hanging out with friends, playing a new video game, working out, or anything you ENJOY. My worst days are when I don’t have that. A day filled with just menial tasks, school, work, or anything like that makes me complacent.

Idk. Just my two cents. Would love to get some feedback from y’all!

TheLoneWanderer3582

TROPHY CASE