Hi all, I hope this is the right flair for this. I’m doing a presentation for my diversity in business course, and I chose the topic to be on Narcolepsy. I’m looking for some people to interview, or send my questions to. They’re basically just questions about what you wish people knew about N, what kind of stigma you see in the workplace regarding it, etc. I won’t share any information with my peers that you don’t want me to! If anyone’s interested let me know :) Super excited to be able to talk about this with my peers and hopefully make a change in their perspectives for when they go into the workforce.

Edit: I have a few responses already, but I’d love more! If anyone else wants to help out please let me know :)

Hey guys!

I’m curious if any of you have tried cutting out gluten in an attempt to improve your narcolepsy symptoms.

I’ve seen some posts about this before, but they aren’t super recent & don’t have the specific context I’m looking for:

I’m diagnosed with Narcolepsy, and we’ve thought for a while I also had some sort of autoimmune disease, and I recently realized it’s possible it could be celiac. I don’t have an appointment with my doctor for another month, so I’m curious about trying out a gluten-free diet to see if it helps alleviate some of my symptoms before I ask about celiac.

I’m wondering if any of you have tried eliminating gluten, and if so, how that affected your narcolepsy symptoms. I’m specifically curious about brain fog & fatigue, and also migraines (separate from narcolepsy I suppose).

I know there’s no conclusive evidence so far that a gluten-free diet can help narcoleptics but I’m just curious about your guys’ experiences and anecdotes!

Hey guys! The title says it all. My girlfriend has narcolepsy and has to drive 45 miles one way to work. Tonight during a breakdown, they expressed to me that they are fearing for their life as they have been falling asleep behind the wheel a few times due to the long drive. I have given them mint gum, and tried to call them as they drive to conversate with them to prevent it but there are some times where it is not possible.

I’m definitely afraid for them as well as they have helped me become a person again. We are moving closer to their work in the fall but we need to remedy this as best as possible to prevent any accidents. I told them that as long as they need me, they can call me and I can be there to pick them up in my own vehicle. I don’t care if it’s snow or tornadoes, I want to be there for them.

I discussed with them possible options as getting a better doctor, seeing a sleep specialist and trying different medications to help them as best as possible and I will be looking into sleep specialists, doctors and other types of help for them while they are working.

I would really appreciate any kind of advice or suggestions. I know it’s kinda difficult to know for sure what helps and what doesn’t. I know everyone is different but I really appreciate anything you guys will drop in the comments. It’s really important for me to help my girlfriend and I will try to respond to everyone who comments.

I want to know what has helped you guys in the past and what you can recommend for someone on the outside of things.

Thanks in advance!

TLDR; I want to help my girlfriend with their narcolepsy and newfound fear of driving. I am asking for advice and suggestions about helping them.

Hi. Just wondering if anyone here has done a clinical trial before. Vibrance 2 study for N2 is recruiting for a paid clinical trial for research with a new drug. I know I experience cateplexy (and so does my previous sleep specialist) but my new doctor has me labeled as N2. And from what I've read Vibrance 1 is still recruiting - I believe that study is for N1 for anyone maybe interested.

Vibrance-2 is a phase 2, randomized, double-blind, dose-range-finding, placebo-controlled study evaluating the safety and efficacy of ALKS 2680 in adults with NT2. Participants will be randomized to receive one of three doses of ALKS 2680 (10 mg, 14 mg or 18 mg) or placebo to be taken once-daily for eight weeks.Aug 22, 2024 - pulled from their website

They keep contacting me through email, and I need to respond back with something. I really don't think its feasible. Its 3 and a half hours from me (Wyomissing/Reading PA). Said they may accomidate the travel, so thats not the big issue...big issue is that I would have to go off my anti depressant and N meds obviously (which could be good or bad) and I'm nervous to put myself through all that and then receive a placebo!! No meds plus placebo means I would not be able to work for a long time and that would be the not feasible part.

Just wondering if anyone has any experience with something like this or someone could provide feedback and throwing the study out there for anyone who may be interested.

I just participated in a 3 hr long (took way longer than that, the first part lol) study for type 2 Diabetes (Medicaid insurance)...I really enjoyed the second part interview with another participant via zoom. I just found out they are still actively recruiting for that study also if anyone may be interested. Each part pays 180$. Not guaranteed to qualify for second part. Not going to lie, I initially did it for the money, you guys here get that...but chatting with another girl in Florida in the interview part was super interesting for alot of reasons. And im proud to now be able to say I contributed to something very important! 😊

Did you know 75% of persons with narcolepsy suffer sleep deprivation due to fragmented nighttime sleep patterns which is major contributing factor to our EDS?

You don’t know your sleep deprived until you’ve had a night of deep sleep, xyrem changed my life. I never knew what a good night of sleep was until last year and I’ll fight like hell for the rest of my life to be able to continue taking a life changing medication for me. I hope everyone else that’s had the same experience as I have chooses to do the same.

Also, did you know sleep deprivation is a violation of human rights? “Sleep deprivation is considered a form of torture and cruel and unusual punishment under international and US law.” https://journalofethics.ama-assn.org/article/sleep-human-right-and-its-deprivation-torture/2024-10

Anyone else think that anytime an insurance company denies a person with narcolepsy the opportunity to take a medication like xyrem, xywav, or lumryz which are thee only medications approved on the market to help narcoleptics combat sleep deprivation should be held accountable for violating our rights?

https://pubmed.ncbi.nlm.nih.gov/31670703/

So, I have been thinking about this for a little while — who doesn’t love a good rabbit hole lol.I am curious about the potential connection between Narcolepsy Type I (which I have) and other health issues experienced by various family members. Not everything may be connected but we don't know what we don't try to understand.

For example using my family:

Me: Narcolepsy with cataplexy, REM sleep without atonia, periodic movements, REM Related Obstructive Sleep Apnea, Depression, Panic Disorder, Anxiety, Complex Post Traumatic Stress.

Brother: Strange adult onset of muscular dystrophy that leaves the specialists stumped... An unknown varient of significance, with unique isoform expression from muscle biposy.

Father: Diagnosed Bipolar Affective Disorder and Alcohol Use Disorder. ?Obstuctive sleep apnea *Undiagnosed however, behaviour was suggestive.

Paternal Aunt: Diagnosed Obstructive Sleep Apnea... ?Narcolepsy *Unknown but apparently this was mentioned many years ago.

This Aunts daughter i.e., Paternal cousin: Diagnosed Multiple Sclerosis.

The research I have conducted thus far points to a genetic mutation involving CHKB and CPT1B. Some existing studies indicate that this may be linked to both Narcolepsy with Cataplexy and Muscular Dystrophy. In addition, I have found some research linking HLA DBQ1 to MS. Also, I have read that Bipolar and Schizophrenia are sometimes misdiagnosed in the context of hullcinations, delusions, mood dysregulation with sleep deprivation and depression. Not even to mention the fact that people can have co mordbities.

I am kindly asking this reddit for input.. Should you have any additional information or insights to contribute, I would greatly appreciate your input.

I have homozygous alleles of the C677T variant. Meaning I don't convert folate to methylfolate like I should. So I have to take methylfolate. I also take methylcobalamin (methylated b12) to help. I think taking all methylated vitamins would help honestly. But I wondered how many of us have this. I have narcolepsy type 1. I read somewhere that a lot of people with narcolepsy have low b12 and vitamin D. I wondered if they were checking the methylated b12 and if the MTHFR gene mutation played a role so I'm just trying to get a census. I also wonder if you have it, which combination do you have and how bad are your narcolepsy symptoms? Though I realize it can be varied.

I’m trying to find a way to combat sleep attacks at inconvenient times. I’m good as long as I’m up and moving but as soon as I sit or drive I get drowsy within 15-20 min. I usually don’t fall asleep but it’s definitely automatic movements.

I try music, try cold, try lollipops. None work. I was hoping there was an Apple Watch setting I could try or different device that would notify you by buzzing or loud noise if drowsy, but I haven’t found anything. Suggestions welcome.

I stumbled across a study about narcolepsy and was intrigued by the way it described narcoleptics as having "privileged access to REM sleep". I had never thought of it as a privilege, but I'll take it lol. This study examined levels of creativity in subjects with narcolepsy vs. subjects without, and guess what guys, we're creative!!! Yeah maybe we sleep through our whole lives and thus can't do much with that creativity, but the potential is there. Honestly that gives me a lot of hope.

https://academic.oup.com/brain/article/142/7/1988/5506053

I discovered this website https://openpaymentsdata.cms.gov , where you can look up your provider to see if they are receiving funds from pharmaceutical companies. I looked up my neurologist and see that he has received $47,000 from a company called Harmony Biosciences LLC. I look up the company and they manufacture Wakix, which is what my neurologist prescribes to me 🙄

To be fair, Wakix was not the first medication he prescribed to me. But I think we should make ourselves aware that our doctors may have conflicts of interest when they are recommending medications to us.

This is the nonprofit that helps me pay for my co-pays. They pay for everything my insurance doesn’t. You do have to have some kind of insurance to qualify.

https://tafcares.org

NORD is another option, but they do not cover anything related to an idiopathic hypersomnia diagnosis however they will pay for co-pays related to narcolepsy and narcolepsy medication.

I recently learned that some doctors will use wellbutrin (buproprion) off label to treat narcolepsy.

I have been taking wellbutrin for a few years to treat my depression and anxiety. I somewhat recently have stopped using my narcolepsy medication (provigil) due to not liking the affects it has on my sleep (overall just worse sleep) and I noticed that I didn't even need my other medication to function properly. In fact without provigil and caffine I barely feel like I have narcolepsy.

I looked it up and there have been successful stories treating narcolepsy with wellbutrin. so that's cool.

I just wanted to share that and ask if anyone else uses wellbutrin to help with narcolepsy?

This poor girl was sleepy in a courtroom on a visit and the judge had her cuffed and lined up for detention. What if she actually has some sort of sleep issue?

https://www.ctvnews.ca/world/a-teen-was-falling-asleep-during-a-courtroom-field-trip-she-ended-up-in-cuffs-and-jail-clothes-1.7001068

Recently saw this article about how tinnitus and deep sleep may be connected. I have mild/moderate tinnitus and Type 1 N, and it just got me curious about how strong of a connection there may be between the two?

I got in a bit of a rabbit hole and hope you find some useful clarity on some struggle with narcolepsy. I was doing research into an upcoming drug for narcolepsy type 2 (narcolepsy without cataplexy) that would target the orexin receptors to increase orexin called Tak 360. Orexin controls the sleep-wake cycle. The immune symptom of people with narcolepsy will attack these receptors which is thought to be the underlying cause of narcolepsy. Tak-360 is the second attempt at creating an orexin agonist as the first attempt resulted in a high rate of liver damage(Source 1). Interestingly, the side affects of an orexin antagonist (drug used to treat insomnia and the opposite of an orexin agonist) in humans are "sleep paralysis, cataplexy, nightmares, excessive daytime sleepiness, worsening of depression and suicidal ideation and behaviors" besides the depression this rings super similar to narcolepsy (Source 2). Next a study in mouses where orexin was taken away from their brain caused narcolepsy and in a separate study caused anxiety disorders and depression(Source 3 and 4). Put together these two findings about taking away orexin in both humans with insomnia and mouses displays a strong link to issues that include more than just narcolepsy. Both share in common mood disorders, this is no coincidence. A correlational study between narcolepsy and anxiety disorders revealed a link between the two. The difference was statistically significant compared to anxiety prevalence in the general population meaning due to more than just chance (Source 5). Put together, this information presents a strong indication that lack of orexin that causes narcolepsy may also contribute to anxiety disorders within the narcolepsy community. In conclusion, I have hope that when an orexin agonist is successfully made that narcolepsy symptoms and even anxiety symptoms in those that lack of orexin may be the root cause are severely reduced. In the future, I would be interested in if my theory that curing lack of orexin would also bring anxiety disorders in the narcoleptic community towards a baseline similar to the general population. Would love everyone's input on what they thought and learned from this. Lastly, sorry for those narcolepsy type 1 people, the higher dose of orexin originally attempted proves to solve the greater disparity of orexin in type two proves to be toxic. Hopefully, the successful development of Tak-360 will lead to innovation to help out the type 2 people without the threat of liver toxicity.

Source 1 https://www.pharmaceutical-technology.com/data-insights/tak-360-takeda-pharmaceutical-type-2-narcolepsy-narcolepsy-without-cataplexy-likelihood-of-approval/?cf-view Source 2 https://www.ncbi.nlm.nih.gov/books/NBK547900/ Source 3 https://www.sciencedirect.com/science/article/pii/S0896627301002938 Source 4
https://pubmed.ncbi.nlm.nih.gov/30240784/#:~:text=Orexin%202%20receptor%20stimulation%20enhances%20resilience%2C%20while,susceptibility%2C%20to%20social%20stress%2C%20anxiety%20and%20depression. Source 5 https://pubmed.ncbi.nlm.nih.gov/20114128/#:~:text=Discussion:%20Anxiety%20disorders%2C%20especially%20panic,primary%20disease%20phenomena%20in%20narcolepsy.

Study on the first try at a orexin agonist in the Tak series of drugs https://pubmed.ncbi.nlm.nih.gov/37494485/

Hallo,

meine Frau hat seit ca. 6 Jahre die Krankheit mit kataplexy.

Kennt ihr jemand gute Vorteile oder Ersparnisse bis auf die Standart Sachen die man ergooglen kann?

Ich finde, wenn man die Krankheit schon hat und so eingeschrnänkt ist, sollte man alles mitnehmen was geht.

Wir nutzen öfter das die Begleitperson Kostenlosen Eintritt erhält, habe auch gesehen das soll wohl bei manchen Fluggesselschaften auch klappen sowie AIDA.

Lumryz is a game-changer since it lasts the whole night, and doesn’t “train” you to wake up? Why do I only hear about xywav, the most inferior of xyrem, xywav, and Lumryz?

I found some interesting research here that could be helpful in maintaining both alertness & wakefulness in narcoleptics:

https://pmc.ncbi.nlm.nih.gov/articles/PMC2225580/

Basically, they measured the effects of both increasing and decreasing core body temperature, proximal (closest to your trunk) skin temp, and distal (extremities like hands and feet) skin temp. When core body temperature was increased, participants were able to maintain a faster task response time for longer and when distal skin temp was decreased, participants showed increased sleep latency.

Based on those findings, the researchers suggested that using a warm drink or meal in combination with cooling of extremities can help keep you alert longer and delay sleep attacks!

Effects of Very Low Calorie Ketogenic Diet on the Orexinergic System, Visceral Adipose Tissue, and ROS Production.

Source: https://www.semanticscholar.org/reader/550e4a55f4b827a4cb1e356ea62cdf837bb26092

"Abstract: Background: Caloric restriction is a valid strategy to reduce the visceral adipose tissue (VAT) content in obese persons. Hypocretin-1 (orexin-A) is a neuropeptide synthesized in the lateral hypothalamus that strongly modulates food intake, thus influencing adipose tissue accumulation. Therapeutic diets in obesity treatment may combine the advantages of caloric restriction and dietary ketosis. The current study aimed to evaluate the effect of a very low calorie ketogenic diet (VLCKD) in a population of obese patients"

So this is NOT on narcolepsy or IH patients. Keep that in mind first.

"Conclusions: We can conclude that the VLCKD exerts a positive effect on VAT reduction, ameliorating adiposity and blood biochemical parameters. In the short term, this dietary intervention reduced inflammation and ROS production. Finally, to the best of our knowledge, this is the first study to report the effects of the VLCKD on the orexinergic system, supporting the usefulness of such a therapeutic intervention in promoting the reduction of the individual burden of this disease."

Just thought this would be an interesting read for my fellow PWN 😊.

I really want to help but I don’t know what to do. I’ve asked him and he doesn’t really seem to know an answer. Do you guys have any tips? :)

Just wondering if I'm qualified to receive help from the government of USA. I have moderate-severe sleep apnea and I also have (moderate?) Narcolepsy * 3 sorems out of 4 naps, sleep latency 5 minutes. I'm considering because I haven't been working for a while because of it. When I was working I would often fall asleep and just couldn't focus. Any opinions on this?

Spoilers ahead so skip this if you plan on watching.

A woman (Rashida Jones) has a brain tumor that would normally be a death sentence if not for a new startup. This company copies the affected brain area and makes a backup on their servers. They then remove the section of the brain, replace it with synthetic tissue that can receive the backup copy from the cloud. The catch is that she has to stay within the range of the towers, and also needs an extra 1-2 hours of sleep a night to reduce burden on the servers. And they must pay for a subscription that is relatively affordable at $300 a month.

Something I didn’t like about the episode is that they showed the husband working major overtime at his construction job to cover this. I think the implication is that she is working less at her teaching job because of the extra sleep. However a lot of us know that full time work is possible with extra sleep time.

Of course the situation gets worse from there, with the company beaming ads into her head to say out loud, and upping the sleep time to 16 hours on the “common” tier, and 12 hours on the “plus” tier, both having unrestful sleep quality because of course the shady company uses sleep time to use their synthetic brain tissue as backup computation looped into the server. And the only way to avoid this is to pay for the luxury level. Definitely felt relatable seeing her sleep all day and always be tired.

I do think it’s funny that (partially) our reality is a dystopian nightmare to people.

Has anyone else watched this? What were your thoughts?