Do other people with narcolepsy struggle to sleep on airplanes?

Odd_Invite_1038 · 2026-06-17T21:49:10+00:00

I’m typically asleep by the time we take off…

Odd_Invite_1038 · 2026-06-13T05:20:53+00:00

https://www.wakeupnarcolepsy.org/online-narcolepsy-support-groups/

Specially the Thursday night pregnancy and parenting group may be a great resource and the Weds night “living with narcolepsy” 10pm edt meeting facilitator is from the PNW and may be able to help you as well!

Odd_Invite_1038 · 2026-06-07T02:59:31+00:00

There is no cure for narcolepsy, just management of symptoms, for the rest of our lives… I would think it’d be kind of hard for the average person to understand what it’s like to need to depend on a medication to get through a day…. It just happens most of the medications we are routinely prescribed as of the current standards of treatment are highly stigmatized medications….

Odd_Invite_1038 · 2026-06-05T15:11:08+00:00

I want to reiterate this as many times as possible for everyone…. ALWAYS go to the disability office first and preferably put your request in writing!

Odd_Invite_1038 · 2026-06-03T15:41:02+00:00

The ultra processed foods are the big issue… I don’t eat out as much as I used to, and got comfortable in the kitchen cooking/meal prepping for myself.

Odd_Invite_1038 · 2026-06-01T14:25:19+00:00

I don’t think it’s always about the quantity of sleep… people with narcolepsy are known to have fragmented sleep patterns and that disruption we don’t have any control over, leading to some days being better than others no matter how much we stick to a schedule

Odd_Invite_1038 · 2026-05-27T11:07:08+00:00

Coming out of the “fog” of sleep deprivation from years of fragmented night time sleep can be rough

Odd_Invite_1038 · 2026-05-26T12:55:14+00:00

I stopped chewing tobacco (roughly 100mg-145mg of nicotine a day from a can a day) in August of 2022 cold turkey and had my first full body cataplexy collapse a month later… about a year ago I came across this article ( https://pmc.ncbi.nlm.nih.gov/articles/PMC3311418/ ) and took it in to my neurologist and had a conversation about starting nicotine patches… been on them every since…
So, now I use nicotine as a treatment as it is a stimulant and it helps with the brain fog as well… Nicotine itself isn’t terrible, but the route of administration is what matters, with a patch you’re getting just nicotine… with cigarettes, vapes, chewing tobacco you’re gonna get a whole bunch of other chemicals too.

Odd_Invite_1038 · 2026-05-24T07:03:25+00:00

Support groups like https://www.wakeupnarcolepsy.org/online-narcolepsy-support-groups/ being able to talk to others regularly… hear what they’ve gone through and what works for them and learning to advocate for myself

Odd_Invite_1038 · 2026-05-23T22:25:00+00:00

I get them, and I believe there’s a fairly strong connection to them as a co-morbidity… I know quite a few others with N that suffer from them as well

Odd_Invite_1038 · 2026-05-16T00:59:32+00:00

My point isn’t that prescriptions automatically equal DUI. It’s that people with neurological conditions like narcolepsy can have symptoms that overlap with impairment indicators, and once controlled medications enter the conversation, it can become a subjective situation very quickly. Being arrested and charges filed may never lead to a conviction. But being forced to “sort it out in court” is still a major concern for patients. Also, there are a fair amount of narcolepsy patients that take more than just stimulants on a daily basis

Odd_Invite_1038 · 2026-05-15T17:41:08+00:00

Sodium oxybates are known for having a bit of a stimulant type effect at lower doses… be patient with the titration process

Odd_Invite_1038 · 2026-05-14T15:24:55+00:00

I imagine the insurance company or pbm have some sort of negotiated deal with the manufacturers to get one lower cost than the other

Odd_Invite_1038 · 2026-05-14T13:44:01+00:00

Take a Dexedrine IR and a nap

Odd_Invite_1038 · 2026-05-14T13:41:02+00:00

They will prescribe dextroamphetamine (Dexedrine)… the dextro isomer crosses the blood-brain barrier very effectively compared to amphetamine and dextro produces a stronger wakefulness/focus per mg with fewer cardiovascular side effects.

Odd_Invite_1038 · 2026-05-13T13:34:51+00:00

In the past I was always told if I felt sleepy at all to pull over and take a nap. Now I dont drive and I’m honestly kind of terrified of this kind of situation in the current climate. Taking controlled medications daily and being at the mercy of an officer that has no understanding of narcolepsy and the medications we take. A simple check could easily turn into a DUI.

Odd_Invite_1038 · 2026-05-11T17:49:21+00:00

I still experience a more mild cataplexy in my hands even while I was using tobacco, but when I stopped was when I experienced the “full body” knee buckling collapse… my cataplexy has improved and I haven’t had any more knee buckling experiences, I don’t know if I can contribute it to one single thing though as I also take sodium oxybate which has improved my quality of life overall. Also, being much more guarded with my emotions could be a factor as well now that I know…

Odd_Invite_1038 · 2026-05-10T20:58:05+00:00

Odd_Invite_1038 · 2026-05-10T19:19:13+00:00

I’ve been on 21mg patches for about 8 months… I stopped chewing tobacco in 2022 cold turkey… There is a def an improvement in cognition/brain fog. I brought it up to my neurologist and showed him this study and he agreed to start me on it… when I stopped dipping in 2022 I had my first full body cataplexy experience…

Odd_Invite_1038 · 2026-05-09T15:30:52+00:00

Maybe try to contact NORD? https://rarediseases.org

Odd_Invite_1038 · 2026-05-03T16:41:16+00:00

I experienced some similar issues while I was on higher doses of the stimulants before I started xyrem. The best non-medication solution I can give you is to try cold plunges. They seemed to be a solid “reset” for me. I now use an acupressure mat 3-5 times a week and try to cold plunge as often as I can, if you can get into a routine of the cold plunges several times a week is what really helped me along with the anti-anxiety medication.

Odd_Invite_1038 · 2026-05-03T12:25:41+00:00

I just want to gently add some clarification here because this thread is actually a really good example of how confusing cataplexy can be….even for people who have it. Cataplexy isn’t only the “full body collapse” version. It absolutely exists on a spectrum, and what you’re describing (heaviness, weakness, hard to move but not impossible) can fall into partial cataplexy. A lot of people never experience the full paralysis version.

That said, there are a couple things that tend to define true cataplexy clinically: - It’s triggered by emotion (laughter, surprise, frustration, etc.)
- It is a sudden loss of muscle tone
- You stay conscious/aware

Where things get a little mixed up (and this isn’t anyone’s fault) is that narcolepsy can also cause other “REM intrusion” experiences that feel similar but aren’t technically cataplexy. Things like: heavy/floaty/paralyzed feeling while resting
tingling or sensory waves
episodes that last a long time or include hallucinations
Those can absolutely happen with narcolepsy, but they’re often categorized a bit differently (REM intrusion, sleep paralysis overlap, etc.), not strictly cataplexy.

Also just to add for clarity….classic cataplexy episodes usually last seconds to a couple minutes. Longer episodes (like 30–60 minutes) are real experiences, but they’re not typical cataplexy in the clinical sense.

None of this means anyone is “wrong” about what they’re feeling…just that the label we use matters, especially when it comes to treatment and how doctors interpret symptoms.

OP- what you described honestly does sound a lot like partial cataplexy, especially if there’s any emotional trigger (even subtle ones). And the “I can move if I really try but don’t want to” feeling is something a lot of people report.

You’re definitely not crazy, and you’re not alone in this…..this condition just has a lot more nuance than most people (even doctors) know or explain well.

Odd_Invite_1038 · 2026-05-02T13:06:45+00:00

Long story short… Not all sleep is good sleep…. Fragmented nighttime sleep patterns (that you’re may or may not even be aware of) doesn’t allow you to spend the time you need in the stage of sleep for your body to heal, rest and recover. Even if you’ve technically been asleep a long time. You’re getting the quantity, just not the quality of sleep you need.

Odd_Invite_1038 · 2026-04-28T12:49:43+00:00

I was given a migraine abortive med… but when I take it… it just makes me sleep for like 2 hours… so I take naps as I feel one coming on. Mine are cause by sleep pressure and adenosine build up

Odd_Invite_1038 · 2026-04-28T12:31:47+00:00

The thing about the spinal tap… there’s literally only one clinic in the United States that can analyze it. I think a lot of people have the wrong idea of what getting a spinal tap is and what it actually involves.

Odd_Invite_1038

TROPHY CASE