Traveling / Flying with Sleep Disorders / Tips & Challenges

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    Sleepy RBD
    Participant @sleepy-rbd

    I think that air travel today has become more challenging in general, but I was wondering if any of you have tips or experiences that you are willing to share related to traveling with sleep disorders.

    Keymaster @jasonm

    If you’re on any controlled medications be sure to take the medication bottles with you just to avoid any legal trouble. It’s always tempting to put all my meds in one container for me but it’s not a brilliant idea. I’ve seen people with legitimate Rxs get arrested for possession of cds for having Xanax in their pocket.

    Keymaster @deathrabbit

    Check the law too if traveling internationally. PWN and ADD patients have been detained in Japan, for example, and basically had to cool their jets in the lock up until the embassy can spring them because there is a general ban on stimmies there, Rx or not.

    My current jam: Anathema - Springfield


    Participant @chrissie

    I have air travelled US, EU, Mexico and Japan with:
    Nuvigil (in the past) – Never had an issue. Just kept in my purse or carry on bag.
    Xyrem – I do all the time and no problems, just allow extra time. When you go through USA security just keep bottle in box and remove from Carryon. Put in its own bin or those small one for wallets keys. It goes through Xray and gets pulled aside. TSA will say “is this yours?”. You, ” Yes, its medication.” TSA, “OK, we have to test it.” They swab the bottle, run the test, say “OK”, and you are on your way.
    90% of the time in USA it gets tested, sometimes, they just let it go through and see its prescription.
    Leaving Japan once, they asked me out of curiosity what I was taking for, I said for sleep and got a couple “Ahhhs”.
    Leaving some EU countries no problems so far.

    Keymaster @deathrabbit

    I think we may be the only country that demonizes GHB. IIRC, it was because some rich party girl died, which was sad and obvs should prosecute the ones who gave it to her, but the most common date rape drug far and away is alcohol and it’s 100% legal, so go figure :shrug: . We need pharmacists in charge of drug scheduling, not politicians. *end rant*

    My current jam: Anathema - Springfield


    Participant @sleepingcrow

    I think that air travel today has become more challenging in general, but I was wondering if any of you have tips or experiences that you are willing to share related to traveling with sleep disorders.

    Other than the medication issues mentioned above, if there are any time zone changes, gradually change to them over a period of 4 days, 2 minimum.

    Give yourself ample amounts of time to go through security, validate tickets etc.. Time constraints can be a form of stress for some making it more difficult for us with narcolepsy.

    Where layers to adjust for the temperature fluctuations in airports, airplanes, trains and buses. Having a balanced core temperature will get you far (no pun intended).


    Sleepy RBD
    Participant @sleepy-rbd

    Thank you for all of the tips!

    One of the challenges that I have when I’m flying, especially on a long flight, is trying to stay awake. With RBD (REM behavior disorder) as one of my sleep disorders, I don’t want to take the chance of falling asleep with the possibility of having a dream that might involve hitting, running, kicking, shouting, laughing or numerous other things. I don’t want to end up in the back of the plane in handcuffs with the sky marshal as my new traveling buddy. 🙁

    I can just hear myself mumbling, “Sorry, sir, I was…uh…sleeping.”

    If I’m traveling alone, I’ll usually choose a window seat and scrunch my body as close to the window as possible. With the space for passengers decreasing, the art of scrunching is requiring more skill. I also used to try to get up, walk around, and stretch in the back of the plane. Now that my body has decided that cataplexy may show up and come “along for the ride”, I’m working through a whole other set of possibilities.

    Oh well…as @ferret posted in the inspiration topic, I’m grateful for my “life miles” and many travels. I plan to keep walking and flying. 🙂


    Sleepy RBD
    Participant @sleepy-rbd

    I hope to travel abroad with a group of friends again this summer. Before cataplexy showed up at the airport a couple of years ago, I don’t think I would have ever second guessed going on this trip. I’ve made the trip many times over the years and know the difficulties in terms of travel and logistics. I am trying to give full disclosure to my friends with whom I will be traveling and those who live abroad concerning the extra “baggage” (aka cataplexy) that accompanies me and how things have changed since my last visit. I’m also trying to build in some extra safe guards, but would appreciate thoughts or suggestions from you guys. One of the things I plan to do is to stay at a hotel about a block from our friends’ house. While I have always loved staying with our friends, I think this will give me a better option for a place to crash, if needed. It will also spare any of the others from my possible sleep issues (especially RBD related ones) at night.

    My heart is willing…I’m just hoping my body will be…

    Edit: I forgot to mention…Since the incident at the airport a couple of years ago, I now request wheelchair assistance when making reservations and also wear a medical alert bracelet while I’m traveling. I think I have mentioned this under another topic, but thought it might also be relevant to this discussion.


    Participant @athene

    When I’m travelling, my checklist (in relation to narcolepsy) is:

    – Wear a medical ID bracelet. I tend to wear one anyway because I have a habit of falling asleep on public transport, but I definitely make sure I have one when I’m travelling.

    – Have all my medication with me in hand or carry-on luggage.

    – Keep all my medical in original containers. I tend to decant my tablets into a daily pill dispenser at home to remind myself what I have or haven’t taken on a specific day, but when travelling, I keep everything in the original packaging from the pharmacist/chemist.

    – I have a letter from my GP and consultant pharmacist detailing what medications I’m taking and why. The letter specifically addresses the drugs that are controlled, and provides contact information in case any information needs to be verified.

    – I allow myself extra extra EXTRA time to go through customs. Most of the time, I don’t have any problems, but was delayed once while officials double checked my plethora of medication packets.

    – If I anticipate stress getting to the airport or if the flight is in the morning and I’m not sure I’ll have my mental act together that early, I’ll book a hotel the night before either in the airport or extremely close to it so getting there is as quick and stress-free as possible.

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