Hate being sleepy

[u/No_Cauliflower_1112]

As the title says, I fucking hate being sleepy. Got recently diagnosed with hypersomnia (on SSRIs and that can affect your eye movement). Doctor called me for my results and said “dude you’re sleepy af”. I fell asleep less than a minute every time during my daytime test.

I’m so angry because I’ve been living with this for at least 15 years. I always fought off the sleepiness (usually unsuccessful) but I tried really hard and I could function at least to become a doctor.

Now I’m finally on modifinil and the sleep attacks are less dramatic. I can stay awake more easily. Thought I could just use this at work but I can’t. I struggle even more now when I don’t take the meds daily. Even with the meds I’m still fucking sleepy just awake and sleepy? Do others find the same issue? Do I just need to accept that this is now a daily med for me?

[u/Lovelybones2416]

It’s really easy to shame ourselves with narcolepsy incredibly easy actually but needing meds does not make you less than or not enough. You’re doing the best you can with the tools you have and if the meds help to get you at least tired but very functional. At least it’s worth it.

I’m writing this while fighting asleep attack so please excuse if it’s not perfectly said but I think you got it lol

[u/CaitlinisTired]

I hear you, I'm getting better at self compassion but it's a lot of work to try and be even a little less bitter that the pills they give me to make me "functional" just about stop the sleep attacks bur don't remove that bone deep, HEAVY fatigue. Like my body is made out of rocks... that are magnetised to the ground. Waking up after what felt like a decent amount of sleep feeling like I'm fresh out of a car wreck. Always a persistent, low grade headache (that, if I'm lucky, won't turn into a migraine that day, maybe). 

And then I go to work and am still expected to function at the exact same level as my non narcoleptic colleagues and you absolutely can't make people understand how much deeper your tiredness is especially if you don't wanna sound like you're making it into a pissing contest, so to speak. Not really anything I can say to help, just wanted to offer commiseration because it truly is so rough. Wishing you the best, you're not alone ❤️

[u/MarionberryWitty532]

I just wanted to say, I think I relate to the feeling you’re describing with modafinil. Personally, I have to take both Adderall and modafinil. Modafinil alone keeps me Awake 🫨 but I’m still like….. Sleepy 🫩. It’s kind of hard to describe, but it feels like I really would like to take a nap, except the modafinil is physically preventing me from falling asleep. It’s not a terribly comfortable feeling.

I already took Adderall for my ADHD, which was diagnosed a long time ago, while the narcolepsy is a relatively recent diagnosis. But pairing the Adderall with the modafinil works decently well: I feel like the Adderall keeps me awake and alert, and energized in a way that I don’t necessarily feel like I need a nap. And the modafinil augment that by….. I’m not quite sure how to describe it? Just keeping me literally physically awake. Could be worth broaching the idea with your prescriber?

I have a lot of shame about my tiredness and fatigue. I have some chronic illness stuff and I feel like at any given time, I’m this horrible combination of sleepy, fatigued, mentally tired, physically exhausted….. just tired deep in my bones, merely being propped up by stimulants that keep me functioning enough to work.

I find people aren’t very understanding either. I don’t go around broadcasting that I have narcolepsy, but when I have attempted to disclose the diagnosis to people (ie, my family) I don’t really get any sympathy? Which is odd because if someone told me they had narcolepsy, I would think that sounded pretty severe? But yeah, I’m expected to keep up with family functions and their stamina levels, when I just can’t. And God forbid I bring up any of my afflictions because they think I’m just a hypochondriac.

Anyway, I think all of us need to work on our self compassion. I sure hope you cut yourself some slack. This isn’t your fault. You must be pretty impressive if you managed to become a doctor while suffering from undiagnosed narcolepsy, so that’s pretty rad 😃

[u/404AwakeNotFound → u/MarionberryWitty532]

I agree that modafinil keeps me awake but doesn’t reduce the sleepiness and feeling like wanting to take a nap but being physically unable to. It’s definitely not a “well-rounded” awake that I get on it.