Travel Tips
Does anyone have tips for traveling long distances? How do you prepare before the trip? What do you bring with you to help manage symptoms and maximize comfort?
I don’t know that I have any great travel tips except to make sure people are aware of how much public transportation you may end up taking if you travel overseas. I am from the US and had the opportunity to visit my daughter in Belgium while she was studying abroad. We traveled on so many buses, trains, and metros. I am so thankful I was not alone because I would fall asleep on almost every single ride and had no idea how long it would take to get to our destination. My kids would wake me up shortly before we needed to get off. On the trains, they don’t collect your tickets ahead of time and walk around during your trip to check tickets. At first my daughter would wake me up so I could show them my ticket, but after a few rides, she just kept my ticket and showed them for me. There are a lot of warnings about pick-pockets, etc on their public transportation as well, so if you know you will fall asleep, make sure all your valuables are kept secure on your body!
That is some great advice,
. I am glad you were not alone and I hope you had a fantatsic trip. Thanks for chiming in. Best wishes. - Lori (Team Member)
When flying, I always check my bag. It’s worth the extra money for the peace of mind. I can nap in the airport & not have to worry about my luggage. I only use a backpack as a carry on. It’s a makeshift pillow or I can put my arms through it when I sleep to keep it safe. I generally travel alone. As others have mentioned, snacks are key. Anything crunchy to wake up my senses and hard candy for a sugar boost. Also, moving hard candy around in my mouth keeps me alert in any situation. I book the earliest flight possible-everyone is sleeping on those flights! I find my gate immediately, then get my snacks and locate an empty gate nearby to nap. I set alarms and reminders so I can make it to my gate with plenty of time and I won’t have far to go if I’m groggy. I don’t sit down when I get to my gate. I try to be one of the last to board and I wear headphones so my neighbor won’t expect me to engage in long conversations-that’s not happening. I set vibration alerts 30 minutes before landing to wake up and snack up. I don’t have a real meal until my final destination. I sleep harder and the sleep inertia is worse on a full stomach. When driving long distances, I rally my friends and family to continuously annoy me by calling throughout my drive. I keep crunchy salty snacks nearby & I drink A TON of water so I’m forced to stop frequently and have opportunities to take a quick nap if I need it. I never listen to music in the car, only audiobooks. I avoid caffeine because the crash is a sleep force I can’t recover from quickly. I also keep peppermint oil in my console for when I need a sensory boost.
I have social anxiety as well so I’m always thinking ahead. I just recently signed up for Clear. It’s worth every penny even if I only use it once a year. No standing in line ever. One less thing to worry about. I wear comfy clothes in layers so I have a sweater or hoodie to use as a pillow. I always get a window seat so I don’t zonk out on a stranger. I stick my phone in my bra so I don’t have to worry about dropping it and I can feel my alarm vibrate. I buy a bottle of water in case I sleep through beverage service. I usually get ginger ale on flights for the sugar hit and it helps calm my stomach if I have any nerves. I take Modafanil and don’t deviate from mu normal dosage. It doesn't last very long for me though. It takes a good hour to start working and after about 6 hours I have to take another half pill if I can’t nap. My neurologist prescribes an extra 10 pills so I can do the half dose if I need to keep my alertness at a plateau. After a 15 minute nap I am the most alert. The number one trick I use is having my friends check in with me all throughout my day. Their texts or calls keep me engaged and alert. I also don’t have to worry about napping too long because they will make sure I’m where I need to be. Traveling is so much fun. When I reach my final destination I always grab a sandwich and juice to give me some energy as I’m waiting for my luggage and my Uber. I have a pink suitcase so it’s easy to spot quickly. Hope this helps! Have a great trip! 
Thank you so much for sharing what works for you while traveling with narcolepsy! SO SMART to have colorful luggage! I know that when I am excessively sleepy, it is difficult for me to recognize where I am and what is around me. Also a great idea for your doctor to prescribe a few extra stimulant pills for you. Interesting that sugar and food keeps you awake! For me, both put me to sleep! (Unless I eat something high in protein... but even then I still need a nap afterwards!) So interesting that some things work for some people with narcolepsy, and not for others. I think that's what makes narcolepsy so difficult - that it is difficult to predict! Happy and safe travels! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
When traveling long distances I always take a co-pilot to help keep me awake. I also take a LOT of snacks. I have learned that using music, conversations, and snacks help a huge amount. When there are trips that can take over a hour, I have just let someone else do the driving, the safest way to travel. Another thing is I tend not to travel without my service dog. My current service dog, Elvira, loves to travel and help me along the way. I have had a service dog since I was 17 years old, will be 50 in October. I believe that the key is always have a safety plan in place and NEVER travel alone
What great strategies,
! I am glad you know yourself well enough to put limits on distances. How awesome that you have always had a service dog you can lean on. This pup is adorable! Thanks for sharing a photo. You have brightened my day. Best of all wishes. - Lori (Team Member) Thanks so much for sharing what works for you! I also find snacking to be helpful, since it keeps my blood sugar stable and helps me not end up with a total energy crash. I also have a narcolepsy service dog, she has been so helpful in my life! It can be scary to have sleep attacks in public... my service dog helps me feel safer, because I recognize her while falling asleep and do not feel as confused and scared. She is also good at "alerting" to my automatic behaviors, so I know when I start to get deeply sleepy. How does your service dog help you while traveling? Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Great question! Depending on whether you are on a controlled med, it can be really helpful to do research, speak to your doc about your trip get enough supply and necessary documents or letters from doctors etc. Set out some time the day before to get packing and everything, shower etc done and lay out clothes if you are travelling in the morning so that you can just roll out of bed and don't need to worry about getting too much stuff done last min and possibly miss your transport if you are not driving/ being driven. On that note, if you are travelling with someone, ask them to gently help you wake up if possible, either in person or by phoning (and keeping on the line!) Snacks and something to rest your head on is a good one. Also, I think having a coffee already made up (maybe make to ice coffee) if you drink it or any other beverage that might help you on a journey at the ready so again, not going to be missed out on for being last min! (this is always an issue for me, waking up late!) If you need to explain something like cataplexy, you could have a wristband with narcolepsy on it, speak to flight staff etc if you are flying. Maybe have a little booklet or infographic handy (eg. from project sleep) about narcolepsy to just hand to people if you are too brain foggy to explain. There's probably more but I will stop there haha!
Best Wishes, Lauren (Team Member)Thanks for sharing Lauren, these were some great tips! I am traveling alone for the first time in October to the Narcolepsy Network Conference. I have been nervous about the trip for many reasons, including my Narcolepsy symptoms. They are difficult to deal with in public. I think my social anxiety makes it worse somehow. The idea to lay everything out the night before so you can roll out of bed and go is genius. I plan on utilizing that one. Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member) Oh I'm really happy that this was helpful for you! Did you read Kerly's article as well? Has some other good tips about travelling including pre requesting support from airline if you are flying. (as in the cabin crew will meet you early and escort you to the flight etc) I can really relate to the social anxiety! It can be so hard and as you've said it interacts with N a lot. Very bizarrely I have done a lot of travelling on my own although I struggle to leave the house to go to the local shop on my own most of the time! It might also be helpful to have a relaxing playlist ready to listen to on your journey. I am afraid of flying (particularly setting off) and I am level one reiki trained so I always draw reiki symbols in the air to protect the journey when setting off. But you could do something like mentally put a force field around the plane or bus etc, whatever you are travelling on and say in your head something like, 'this journey will be safe and turbulence free' etc. It helps to just keep your mind occupied. Or the classic five senses countdown when you feel overwhelmed (mentally note things in your surroundings, smell, taste etc etc) just to ground you. Wishing you the best with your journey, it's exciting to go to the conference! I have never been to one before although before the pandemic hit I was due to go to the world N conference in Berlin. Best Wishes, Lauren (Team Member)
