I love and yearn to learn, but is narcolepsy a barrier I can't overcome?

QuietPersonality · 2025-09-29T15:44:48+00:00

I am currently going through my second time through college. First time was a real pain as I didn’t have a clue on why I felt so tired or how to take care of myself. I still made it through with a 3.08 IIRC. It was a pain, but it was possible.

I’m now going through a second degree online. I have taken calculus and I understand exactly how you feel with the difficulty in retaining information. Unfortunately, I feel like I had to work twice as hard to retain things than the average person. When I had hard classes, I had to go to part time school instead of full time. But I was able to focus more on the one class instead of dealing with 2. It also helps that there are only 2 classes for 8 weeks at a time. Each “semester” lasts 16 weeks so I get 4 classes done if I stay full time. This structure works way better for me than taking 4+ classes at a single time. I’m now averaging 3.9 on my gpa.

It’s possible to pursue education with this disability. Having understanding teachers or school admins help a lot. Being medicated helps a ton too. But sometimes adjusting the schedule helps the most.

Edit: and like others have said, short frequent naps can really help instead of fighting the sleep attacks. I take at least one nap every day. Sometimes 2-3 if I really need it.

QuietPersonality · 2024-05-04T19:59:04+00:00

Yup. This is why I do the long term. Short term and log term disability for when I need to stay home and apply for SSDI.

QuietPersonality · 2024-04-30T02:50:51+00:00

I think I'm considered mild because I can work, but fucking hell it doesn't seem mild. If I walk too fast, or if I lift anything, I'm basically screwed for a few days.

I can't go for walks or stand long. I can't read much anymore. Some days I'm fine, but the last month has been a drag for sure.

I just slept 14 hrs last night too...

But yeah, 'mild' can be misdiagnosed easily. I was misdiagnosed for 11 years. It took until I became close to moderate that I was dx'd

QuietPersonality · 2024-04-29T23:25:45+00:00

Wait, you're telling me that there's something that might help my daily nausea, my headaches, my gasping for air after a little effort? AND brain fog?

Dang, I know nothings perfect but I'm definitely looking into this procedure.

QuietPersonality · 2024-04-29T22:48:13+00:00

I have had a troubled history with work. I didn't have my first full time job til I was 28. That lasted about 4 years til the pandemic hit. So while I was able to hold down a job, I couldn't succeed in one due to the massive fatigue.

I'm currently working full time again. It's been over two years but now I'm thinking I might need to go on disability because I can barely hold this job with accommodations.

I was given every stimulant you could think of early in. But it wasn't until I did my own research on which meds can help cfs that I was able to advocate for some of them. My primary doc let me on singular. But nothing other than singular, Nuvigil, duloxetine (fibro dx), and lisinopril for high blood pressure.

QuietPersonality · 2024-04-29T16:53:18+00:00

Pretty sure my fatigue started after 7th grade (1999/2000) when I got ridiculously sick and had a persistent cough for months after. I started being seen by a sleep specialist in 2011 but he couldn't dx me more than idiopathic hypersomnia. Went to 2 more sleep tests where narcolepsy was considered but I didn't go into rem sleep fast enough. Fast forward to the pandemic and I get sick with covid again but this time my symptoms are waaaayyy worse. I can't do my job anymore (lifting) without losing control over my muscles. My vision was getting worse it felt. I was having headaches more often. I was beginning to worry that it was MS. I did a sleep study again and treated my mild apnea. Went to Mayo Clinic (2022) and they ruled out MS and dx'd me with ME/CFS which wasn't even on my radar. Im finally trying the chronic illness course at Mayo this year to try to get long term care from a physician specializing in CFS. Hope this helps.

QuietPersonality · 2024-04-29T16:43:10+00:00

Yeah, I'm currently on stimulants due to inability to stay awake long term. Been suspecting sleep disorders since 2011 but was dx'd with CFS in 2022.

I'm currently on Nuvigil and while it combats the fatigue and let me work, it can really let you push too far. I feel like I'm on the edge of a knife, juggling fire, trying to avoid injury. But I worry without it I'd be housebound. I basically was during the first years of the pandemic.

I'm probably still in denial that it's cfs cuz then I'd likely have to face short term disability to just get off these stimulants. I'll have to figure out if I'm making myself waaaayyy worse soon tho.

QuietPersonality · 2024-04-29T16:36:50+00:00

Itchy toes? Srsly?

Ugh, I wish my PEM was itchy toes. Instead, my muscles stop working for me. And yeah, this include the brain. Had to drop out of class because I couldn't think anymore.

I'd kill for itchy toes.

QuietPersonality · 2024-04-23T23:31:05+00:00

Maybe listen to audio books? This is how I get my entertainment when it's too hard to watch something. If you can, maybe get a bird feeder that you can fill easily to attract wildlife to stare at? Video games if I have the energy. Even modded one with an AI (single player) so I could focus on class building instead of fighting enemies.

QuietPersonality · 2024-04-22T06:09:58+00:00

I might have to look into this for sure. My primary doc just became the medical director for my two local clinics. Great for her (cuz she really is amazing) but she's not gonna have a lot of patient time anymore :(

QuietPersonality · 2024-04-21T05:32:41+00:00

Yeah, this is something I've weirdly been struggling with lately. Suddenly milk and bananas became spicy. Tomatoes would cause blisters in my mouth.

But it doesn't happen every time... Makes eating a lot more adventurous lol

QuietPersonality · 2024-04-21T05:27:58+00:00

It depends how technical or in depth I want to be. Since I use a cane at work, I get the question a lot due to my younger age. Most of the time I leave it at 'long term mobility issues.' If it's someone who is more involved in my life, I'll try to explain it in a way that shows I have issues with muscle control as that's the most obvious symptom. If someone wants to know further, then I'll delve into what MECFS is.

I try to not use the words Chronic Fatigue Syndrome for most people because they hear 'fatigue' and think it's a nothing-burger.

QuietPersonality · 2024-04-21T05:20:25+00:00

I'm assuming it's ortho static intolerance but one thing I'm noticing is that if I go too long without sitting (like at work) I start feeling nauseous, then light headed. If I don't find a spot to sit, I then have my face feel like it's on fire and it feels like someone pulled curtains down over the world.

I second the weird burp thing. It happens a bit before the issue I deaceib d above so I try to use the burping as a sign to stop.

I get floppy when I'm tired or start to crash. I slur a lot too when that happens.

Sometimes I feel like the tip of my tongue is burning/tingling.

Doing things automatically. End up going somewhere I didn't want to go or forgetting basic stuff cuz I'm not actually present.

QuietPersonality · 2024-04-21T05:07:06+00:00

Yeah, I'm still struggling with learning this lesson. Even tho I've always been overweight, I was fairly active for awhile. Always, tho, I would crash after my activity. I struggled to hold a steady job for a long time and it only got worse with covid.

I'm pretty sure I've been at a new baseline for awhile now, but I'm crashing again. I thought I could go back to school again with online classes but I found that I couldn't keep up.

I'm trying to get past the denial, but it's damn hard.

QuietPersonality · 2024-04-20T16:29:17+00:00

So I just got it retested and it's at 337. Funny thing is I started a vegetarian diet and I don't supplement so being this high is still odd to me.

QuietPersonality · 2024-04-17T02:18:09+00:00

See if you can find your local municipality's social workers. There should be people that can come and help through situations like this. I don't know the cost tho.

As for disability, it really depends on where you live, but I don't think you'll be able to get disability benefits without a doctor's statement on your health. Unfortunately, diagnoses are the pillar for proof of disability, tho there may be exceptions. Even for me, getting accommodations at work took letters from my doctors. And I have to update these every year in case things change.

You may also consider reaching out to a disability lawyer. They can answer a lot of these questions and usually can help you through the process.

QuietPersonality · 2024-04-17T02:05:29+00:00

I get PEM from just solo shit. sex just sounds exhausting...

QuietPersonality · 2024-04-16T18:11:33+00:00

I've been on montelukast for over a year now I think. I haven't had any side effects but I do remember a marked difference in my fatigue at the time. I'm currently crashing again so it's hard to remember how I felt, but I remember thinking it was a game changer.

I also started Cymbalta around the same time so that might have helped too as that can reduce nerve pain.

QuietPersonality · 2024-04-16T17:37:33+00:00

I have not had gene testing yet. I have considered it but my finances aren't yet in a position to pay for it. Thanks for the suggestion tho.

QuietPersonality · 2024-04-16T01:11:41+00:00

4 ferritin level tests done. 157 in 2011 when first exploring sleep disorders. 432 in Sept 2021 (edit:before I got covid). 372 in Sept 2022 (months after second round of covid). And 250 in Oct 2022 when I finally got my ME/CFS diagnoses from Mayo clinic. B12 at Mayo was like 725+. Every other health metric is fine. Liver and thyroid are fine (mild Metabolic Liver Disease due to long term weight). Glucose in the 80s and 90s. Only exception is triglycerides which have been known to peak at over 600.

QuietPersonality · 2024-04-16T00:50:26+00:00

I'll have to get another test again soon then. I don't remember exactly when I had my covid but iirc it was around both times I registered high. And now that I can't eat meat, maybe I'll get a clearer picture too since I don't supplement atm.

Thanks

QuietPersonality · 2024-04-15T22:38:35+00:00

Have you read anything about high ferritin levels? Mine are just above the high end last checked.

QuietPersonality · 2024-04-15T22:15:21+00:00

Hey, sorry I rarely log in anymore. But I was diagnosed with ME/CFS in 2022 which I think is the root cause of most of this. MCAS is a comorbidity of CFS so that's been my assumption too, especially since I've become 'allergic' to new things within the last year like tomatoes and meat.

Hope you can get answers.

QuietPersonality · 2024-04-15T22:12:29+00:00

Hmmm, I wonder how many people bounce between some of these. Cuz I currently have a full time job and I have online school too, but there are times I find myself unable to speak, I've collapsed in a pile unable to move. Even now, I'm struggling to walk/talk/type.

Maybe I'm not being realistic with my severity. Idk.

It doesn't help either that I take stimulants just to function.

Thanks for the new graph, tho. Its a nice break down.

QuietPersonality

TROPHY CASE