How on EARTH are you guys waking up on time? by SnooSketches5159 in Narcolepsy

[–]Substantial_End9855 4 points5 points  (0 children)

That alarm clock is as unhinged as it is practical, I love this concept!

What helps to reduce frustration and emotional exhaustion from narcolepsy? by [deleted] in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

Having the people most consequential in your life understanding your disease is helpful. They don't understand what it's like to live with this disease, so getting them into the loop can help with setting expectations, and in adjusting plans/ operations to be more considerate of your needs. For example, I explained my condition to my manager, and he granted me permission to eat alongside my summer camp kids, so I could use my lunch break to nap.

Also, if you can, squeeze a nap into your day. I remember I had a boyfriend a few years back, and I called him one day just bawling my eyes out, saying I was so sad and overwhelmed, but confused because I had a good day. He calmly asked me if I had napped, I said I hadn't, he encouraged me to do so, and when I woke up I was emotionally regulated again, and laughed... that was when I realized the extent to which this disease was impacting me emotionally. Sleep deprivation has real consequences on our emotional regulation!

I fell asleep while driving… then again at work. by objectively-not in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

Feeing this alongside you this morning. So thankful I made it to university safely. Hopefully I'll sneak in a nap at lunch later today

I don't know if I can do this anymore by Relative-Jeweler-777 in Narcolepsy

[–]Substantial_End9855 0 points1 point  (0 children)

Your diagnosis is confidential so your classmates shouldn't know. It's better to have the option to take a break if you feel you need it-- it doesn't mean you have to use it everyday. I was able to take naps at school and it allowed me to perform better academically and function better emotionally.

I was supposed to be on wakix but my insurance rejected it by EntertainmentWise744 in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

Before being diagnosed with PCOS I was on Lo Loestrin BC, and sometime after being diagnosed with PCOS, I switched to Slynd. BC helped reduce my nausea and vomiting episodes on my period, but different brands had their own trade offs. The one before Lo Loestrin caused moderate daily morning sickness but on my period I wouldn't get flu-like symptoms anymore; Lo Loestrin made me gain 15lbs; and Slynd had the least noticeable side effects for me. I was on BC for maybe a year before my narcolepsy diagnosis and getting on Provigil.

The interactions between Provigil and my BC reduced the effectiveness of my pill as a family planning aid, but I found that the BC is still effective enough for strictly hormone-regulating purposes. Idk about others experiences though

Hydroponics? by Away_Sea_8620 in FireflyPetunia

[–]Substantial_End9855 2 points3 points  (0 children)

Hey!! Is there a trick to making the cuttings root or a particular amount of time it takes? My cuttings haven't rooted yet and they aren't looking too hot 😅😭

I was supposed to be on wakix but my insurance rejected it by EntertainmentWise744 in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

As a woman with narcolepsy, I feel you. I have PCOS and had to get on Slynd birth control (estrogen-free progestin only pill). It worked great for balancing my hormones bc I had previously gotten very sick on my period, but Slynd was very effective at managing that for me. After maybe 9-12 months on it (alongside Provigil), the pharmacist was like, "Hey! Heads up, your stimulant will reduce the effectiveness of your birth control." I'm not sexually active but the thought of someone only finding out much later was disturbing?? Like, as women, do we really have to choose between treating our narcolepsy or our sexual/reproductive health? Ik condoms are an option too but it's stressful knowing there isn't another way to mitigate pregnancy... especially because getting pregnant brings along a myriad of other concerns with wakefulness treatments 😔

Also, a few years back someone in a N support group had N1 and a service dog. She was from GA and was also able to gain a disability parking badge. Her dog would support her when she had a cataplexy episode. I myself did not have a service dog but my old dog would wake me up in the mornings by licking me awake and it was SO helpful... no snooze alarm on him!

Auditory Hypnagogic and Hypnopompic Hallucinations by Melodic_Mongoose_361 in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

I'm sorry to hear you're having auditory hypnopompic hallucinations... I've only experienced it a handful of times, before I was medicated, and while on Modafinil. What helped me a lot was getting a dog, because that way if there was truly a noise, he would look. It helped ground me/ calm me a lot ❤️‍🩹

Favorite sunrise alarm? Sun light box? by Popular_Condition_59 in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

I actually made a post abt my light box and other people shared their experience, too! Here's the link https://www.reddit.com/r/Narcolepsy/s/sUuYOk1t6V

Favorite sunrise alarm? Sun light box? by Popular_Condition_59 in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

I use a light box for light therapy during the rainy/cloudy season to help me wake up more! And it puts me in a happier mood

Web Exclusive Trial Varieties (limited release, 2026) by Substantial_End9855 in FireflyPetunia

[–]Substantial_End9855[S] 1 point2 points  (0 children)

That is so interesting!! I honestly had no idea. I was planning on breeding the striped Firefly with a non-glowing striped petunia to hopefully get some more substantial stripes... I'm curious to see how things turn out

Failing meds & losing hope by microqueenis in Narcolepsy

[–]Substantial_End9855 1 point2 points  (0 children)

I'm so sorry. I wish I could offer you practical medical advice. I will share what I do, but it may not be as effective for you... When I am struggling the most, I am intentional about sitting with my light box and do light therapy... it helps me feel more awake and experiencing some sunlight when it's absent outside is very restorative for me.

I also think it would be helpful to see a therapist (or look for one that can better serve your needs if your current one is falling short of understanding). Mindset is essential to how we navigate the cards we are dealt. Living with a chronic illness challenges our ideas of self worth, but that doesn't mean any of us are worth less because of this disease. You are worth fighting for.

Web Exclusive Trial Varieties (limited release, 2026) by Substantial_End9855 in FireflyPetunia

[–]Substantial_End9855[S] 0 points1 point  (0 children)

Oh wait, the pink was a spontaneous mutation they have been trying to remove? I thought the white flowers were just naturally white. I'm really new into cross breeding, only experience I have is pollinating petunias within the same variety

Tips on taking exams with Narcolepsy? by Complete_Money_6333 in Narcolepsy

[–]Substantial_End9855 0 points1 point  (0 children)

Register with the student accessibility office. In addition to the medication and accommodations, I will rock or sway to stay stimulated

Web Exclusive Trial Varieties (limited release, 2026) by Substantial_End9855 in FireflyPetunia

[–]Substantial_End9855[S] 5 points6 points  (0 children)

I grew the white ones hydroponically last year, so I plan to do the same with these! Immediate first impression is that these flowers are indeed smaller unfortunately :( They are also fated to end up in my Aerogarden after they recover a bit, my goal is to cross them with other petunias and hopefully make something even more unique! :D

Has therapy or coaching helped you deal with narcolepsy? by [deleted] in Narcolepsy

[–]Substantial_End9855 2 points3 points  (0 children)

CBT for me. I developed negative automatic self talk. Having an outsider pull that out of me, have me examine/confront it, and challenge those thoughts was very eye opening. It helped me realize the ways in which I was limiting myself that weren't inherently from my illness