I'm due to travel to the USA from the UK soon. Going there shouldn't be a problem as it's a day flight but I'm so worried about the night flight home.
I'll take my meds (Ropinerol and Gabapentin) with me and take them on the flight at the correct time, but I'm worried that as I won't be able to move around much they will not be effective. ( I have good nights and bad nights on my meds).
my RLS is in my arms which end up jerking and twitching when they get very bad, once this starts it travels to my legs aswell.
I recently went on a two hour flight and couldn't take my meds as I was driving once I got back,all I can say is the poor man next to me was very patient as I sat there with my arm jerking about and I was trying to hold it down.
Does anyone have any useful tips and advise how best to get through the flight please?
I'm also worried that I won't be able to sleep off the effects of the meds on the flight, this then makes me feel shaky and sick.
Thank you.
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Elsie85
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Elsie I frequently fly from the UK to both the US to my daughter, & Canada to my son. I am treated with the patch for my RLS. 1.Stick to UK times for your meds both on your flights & your holiday. This is crucial!!
2.pay extra in economy to obtain seats with leg room..over the bulkhead…a lifesaver
3.Start increasing your water intake a few days before & only drink water on the flights & plenty of it… perhaps the best thing you can do & the most simple!!
4.Get up & walk around the minute any symptoms start..don’t let them get worse!
5.if you can tolerate codeine take co codamol before your flight & before your first sleep at destination.
6. Massage arms & legs frequently with anything every time you get up & walk or go to the loo & do some stretches.
7. Brain distraction that works for you..
Music & crochet help me..movies don’t .. you will know what helps/hinders you.
8. Expect not to sleep but to catnap.. if you do fall asleep bonus! Moving at the start of symptoms is far better than stressing that you are not able to sleep!!
9. Move, stretch, massage, water & catnap will all help you not to feel shaky & sick.
Hi Annie, Thank you so much for this! Really helpful. I was going to take co codamol with me but I'll do what you suggest and take it before the flight and then after.
I'm the same I can't watch movies at night (cinema or theatre can be a nightmare) I also can't read books as that triggers the rls in my arms. I will take a puzzle book as this is something I can do and enjoy!
It's a shame that we had to book our seats months ago so no extra leg room, but the benefit of long haul is that you can get up and move around. I think I have an Isle seat so shouldn't disturb anyone this time.
If you don't have an isle seat after all, talk to the person on that seat in your row and ask to swap and explain that you meed to move around a lot. We can easily see the benefits to that person.
Hi Lotte, I will be brave and ask, after all if I'm sitting there with my arms jerking everywhere it will be a long flight for them to especially if I keep having to get up and down.
If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the steward/ess. A membership in the Restless Legs Syndrome Foundation costs $45 and is worth it for other reasons, If not explain to the steward/ess about your RLS and the need to walk up and down the aisle.
Dear Elsie, my heart broke when I read your e-mail. I know exactly how you feel. Any flights are a challenge with RLS. I am convinced that the cabin air pressure does not help, nor does the dehydration that seems to go with it.
For me, even day flights of two hours can be awful ... I have to have a book or music that "keeps my brain distracted".
Long haul day flights are not quite so bad as I watch 3 or 4 movies back to back - again, keeping the brain busy, and as soon as I start to get "shuffles" (as I call them), I take Ropinirole (I only take Pregabalin at night).
But the long haul night flights are a complete nightmare and are to be dreaded each time. I think it is predominantly down to tiredness ... we are already exhausted by the time we get on the plane, and then we get "over tired" - which is no friend of RLS.
I can only give a couple of bits of advice.
1. Take your meds when you get on the flight, and don't be afraid to taking more Ropinirole throughout the night AS SOON as you start to feel twitchy. Don't leave it thinking it will ease - it never does on a flight.
2. Is there any way that you do not have to drive on your return? Because Gabapentin, Pregabalin and Ropinirole all make me feel groggy every morning - but if I take more on a flight, I am like a walking druggie. But far better that then a 8 or 10 hour flight of hell.
3. Do not be tempted by alcohol on the flight (I always am .... stupid). And drink lots and lots of water.
4. Get up and walk around the minute any symptoms start .. don’t let them get worse.
Good luck. If you do find it hard, just think that there are a whole host of us out there in kindred spirit land. xx
We visit our son in New York each year. The flights are a nightmare. I make sure I have an aisle seat. I have to stand throughout most of the flight. My worst nightmare is when there is turbulence and we are not allowed to stand.
Elsie, I used to travel transpacific (12 or more hours) a lot before the pandemic and I used to go crazy as you can imagine. Since then I have been taking shorter flights (max. 5 hours). Let me firstly give you a rundown on my situation - I had RLS off and on since a long time ago, but only a mild case, until about 5 years ago, then it went full on. I tested to have severe chronic RLS. At first I was given Levodopa (100 mg.), it worked for a while, then it got worse. So I was given the patches (Rotigotin), which lasted a year or so, then got augmentation and also various side effects (which got me into a couple of driving accidents as it made me groggy while driving). Since then I have retired, I made the decision to stop all med and the only time I take them is just before a trip. My sleep was all fragmented at night, plus the standing and walking around all night like a zombie, but I just take cat naps throughout the day. Naturally this is not possible if I am still working. Now back to the flights - just about 3 days before a flight, I would start doing the patch (start with 1 mg., then 2 mg. just before the trip). And then I would take 1 to 2 Levodopa about 1 hour before flight time, and 1 or 2 if necessary during the trip. This worked well for shorter flights. And I would immediate pull off the patch as soon as the flight is over, and also no more Levodopa. The process repeats itself again for the next trip. With some minor exceptions, this has worked for me. During those exceptions, I would just tell the air attendants of my RLS (with some explanation of what it is, of course) and my necessity to stand in the galley when the fasten seat belt sign is not on. Normally they are quite understanding and let me stay there.
As an aside, Cannabis is now legal in NA. So I used it when I was there. While it did not help to stop the RLS, I was normally so euphoric during the day that the RLS just did not bother me, and so relaxing in the the evening I had no problems falling asleep. And just before boarding a flight, I would pop a few THC-laced gummies, which relaxes me for several hours, while walking up and down the isle with a big smile on my face.
Thanks for your advice. I have not considered taking gabapentin, as no one specifically has told me about that. A couple questions:
- I believe most medications, if taken over a long time, would cause adverse side effects. Has Gabapentin been in use long enough to discount augmentation?
- My biggest problem with the patch, even when it was initially OK for my RLS, was that it made me feel groggy, and more than once have I fallen asleep while driving. Have there been reports on whether Gabapentin may cause this?
Gabapentin has been around since 1993 and has been used for RLS since at least 2002. There have been no reports of augmentation. Until recently dopamine agonists were considered the first line treatments for RLS but no longer are due to risk of augmentation. Gabapentin now is the first line treatment. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a... Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. And if you find that they bother you, it is easy to come off it. If you withdraw slowly, there are no withdrawal symptoms. More than half of the gabapentin is out of your system by the time you wake up and you may be a little tired in the morning, but it is very unlikely you would fall asleep while driving. It is completely out of your system in 14 hours. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin.
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So worried about the future
Ropinirole for long airplane flights?
RLSon flights
shock - fight or flight response. 
worry about the future with stage 4 cancer and RLS and ILMD
