#type 1 narcolepsy

[nightinghoul]

My power chair is supposed to show up tomorrow. The candy told me I made the right decision.

[sleepymenheragirl]

Narcolepsy ruined my life. I'm not supposed to be this young and feel so tired.

[gleefully-macabre]

Sandman - Human AU: Dream has narcolepsy

Dream is Like That because he is, literally, always tired; thus crabby. He’s a workaholic because keeping busy is the most effective way to stay awake. He barely eats because his meds suppress his appetite. He’s emotionally shutdown to prevent cataplexy.

The end.

[nightinghoul]

Cataplexy PSA!

Something I've discovered by being in a narcolepsy support group is that LOTS of things trigger cataplexy.

Many doctors will say that the only thing that triggers cataplexy is laughter, or that anything else is super rare. I gather that laughter is probably the most common trigger. However, it is far from the only one!

People in this community are triggered by all sorts of things! Anxiety can be a huge trigger! Basically, anything that causes a strong emotion can be a trigger. Sex is actually a fairly common trigger (common enough there's a name for it, anyway - It's called orgasmalepsy). Socializing, too.

I have a hard time when I go out to eat. Sitting at a table in a public place, eating food with people I like creates a strong mix of delight and anxiety that turns out to be a major cataplexy trigger for me!

For decades, I described my symptoms to doctors and they told me I was having panic attacks. Cataplexy is not remotely like a panic attack. If you are panicking and in a flop sweat, hyperventilating, you might be having a panic attack. If you suddenly lose muscle tone all over and feel yourself enter a fugue state, you are probably experiencing cataplexy. Both are pretty scary, and both can catch you by surprise!

So if you think you might be having cataplexy attacks, and your doctor says it's anxiety attacks, get a new doctor!

(And don't rely only on sleep testing. Epilepsy can cause seizures that look like cataplexy. Migraines can cause attacks that look like seizures or cataplexy - It's called migralepsy. The people who name these things don't get super creative. 😄)

Disclaimer: I'm not a medical professional. But I do have type 1 narcolepsy and complex migraines.

[nagichi-boop]

Just discovered I might have very mild cataplexy. I sometimes let go of things I’m holding without meaning to, as if my hand just randomly decided to stop gripping it. It’s not out of any pain or tension cuz I can easily just bend down and grab it again. But if I don’t see it happen, I might not be aware of it. I’ve had multiple situations where I’ve dropped something in public and either ran back a few mins later after realising I dropped it, or someone comes and tells me I did it.

Idk, maybe it’s not cataplexy - maybe I’m just that freaking forgetful - but at the same time, it’s a little curious given that I am currently suspecting having narcolepsy. Just…just something to think about. Edit: Another thought but sometimes I’ll be standing completely still and then I randomly lose balance.

(Source) I’m just…this is something to think about fr.

[tiwesdaeg]

So with coming to terms with my self diagnosed narcolepsy I’ve noticed that when I get a stand alone episode, like I doze off once but then I’m totally and fully awake after that, everything’s fine and I’m able to move on. But if I get like a prolonged episode or multiple small ones within a certain spance of time, like: wake up, fall asleep, wake up, fall asleep, try to wake up but can’t fully, fall asleep, etc. then I feel really bad and kind of depressed about it. Like I just had about 3-4 episodes (I say episodes because idk what else to call them, like “narcoleptic attack” just doesn’t feels like it fits) within the space of an hour to an hour and a half, and now I just want to phone up my therapist (because I haven’t told anyone in my family that this is going on and aside from filling in my friends that I’m on waitlists to talk to a specialist I don’t want to worry them anymore then I probably already have by telling them that story of when I almost fell asleep while standing at work or the couple times I almost fell asleep while driving) and talk to him because like idk I’m just really sad now to the point where I’m literally sitting in silence, I can’t bring myself to go downstairs to make myself actually food for the first time today….idk I’m just trying to keep my thoughts mildly optimistic like “this is fine, like it’s not ideal but like anything else modern medicine is going to help me live with this in a way the this neurological thing impacts it as little as possible” and not be miserable/pessimistic and thinking that this is just ANOTHER thing against me that’ll mean not being able to live my life the way I want to and being alone. Also noticed when I have sleep paralysis episodes and narcoleptic ones (where I’m actually lying down) my jaw kind of spasms, like it kind of trembles to the point that my teeth kind of….click isn’t the right word but it’s the only one I can think of…tap? Biting sounds? But yah that’s definitely something I’m gonna bring up to the specialist guy when I see him.