Struggling with Narcolepsy and Mental Health

I have found mental health to be highly overlooked when treating narcolepsy. For me, stress triggers narcolepsy and strong emotions used to cause cataplexy. If I had any advice, it would be seeing a psychiatrist along with your narcolepsy doctor and getting them to collaborate on your care. This was a game changer for me. I did not realize I had untreated bipolar disorder (which was a killer for my narcolepsy) and I was able to get treatment which has allowed me narcolepsy medications to do their job. I still have a great deal of anxiety, but it made me realize my narcolepsy is respondent to my mental state. I’d also recommend regular support group meetings and therapy. The diagnosis is not something to handle alone and I’ve found having people around who understand what it’s like makes the process 20x easier. There are online support groups at narcolepsy network for free and people are incredibly welcoming and friendly (at least for me). ☺️ I wish you the best of luck and while you’ll never feel normal, life does get better as you find medications that work for you so you can start to learn how to work with your “new normal”

Absolutely. I was in my second year of college when I started getting symptoms and would only be able to do the bare minimum in life. I was taking 5 hour naps OFTEN, studying as soon as I woke up- then I get COVID as soon as I’m feeling great with modafinil and my mental health suffered for quite a bit. Barely made it through the year. It gets better when you find the right meds- right now I’m on a low dosage of modafinil and I’m seeing it work again as my long COVID symptoms die down. Ask if your dosage can be upped because I know there is a pretty big gap before tolerance is built up.

I find that I go through cycles of “this sucks, but it’s manageable” for a while and then I reach a breaking point where I feel so frustrated. Frustrated about having it, frustrated about everything else I deal with, frustrated that other people don’t understand how exhausted I feel, etc. I also feel like I still haven’t learned how to maintain a baseline.

I'm on both Adderall and modafanil and it's changed my life. Of course everyone responds differently. But I went from literally falling asleep at my desk while on just Adderall for my adhd, to making it through an entire work day and having the energy to pick up my son from daycare and even get a few things done after he falls asleep at night. I can actually get things done without having to stop halfway through because I'm falling asleep.

Yes, yes, and yes!! I also have paranoid schizophrenia. When I first started to notice symptoms of narcolepsy well before I got my diagnosis after my sleep study I was told by all of my doctors that sleepiness is a side effect of my antipsychotics. Funny thing is that’s why I take them at night. Nobody would believe me that it wasn’t the darn antipsychotic. Still to this day, even after my sleep study results my psychiatrist does not want to admit she was wrong. On the mental health standpoint it is so hard for me to talk about my narcolepsy with family and friends because I feel like nobody believes me or wants to listen. I’m just “lazy” or “not getting enough sleep” or “oversleeping.” Certainly makes my brain feel like crap

Absolutely. I've had to switch meds again and again (seems like every month or two months) because my liver is too sensitive to let anything be processed through it, and what it is okay with isn't ever strong enough. One med im taking I would probably be better if they upped the dosage, but it's past the set maximum dosage even if theyve tried + seen good results with the dosage I'd be taking during clinical trials & my doctor was one of the ones doing the clinical trial. It just really sucks, and it can be pretty frustrating not to be at your best or where everyone else is when you know you could be. I know exactly what you're going through.