Long haul flight

[SimonMorriss]

Hi everyone I have a long haul fight next year and wanted to know I'd anyone has been able to get an upgrade to more leg room. As a RLS sufferer.

Thanks

[Madlegs1]

Depends on the airline and busy ness of flight.

Generally can get an aisle seat ok. And explain to cabin staff that you have RLS and will need to walk around a lot.

There is generally a group of such bods at the back ,doing their exercises!

Otherwise you pay for up grade, but I don't like those seats.

Good luck.

[SueJohnson]

Book your flight for early in the day and book an aisle seat so you can get up and walk around and preferably an emergency exit or bulkhead which might give you more leg room. Pack activities that serve as distractions. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. You can join for $40 even if you don't live in the US and it is well worth it. RLS-UK also has a medical alert card available to members for things like flights. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot as Madlegs said. Also taking an extra dose of your medicine can help.

[Huntingleroy]

I got moved once free of charge but the next time I had to pay for an exit seat . Be warned , if they think you have a " leg problem " they wont let you sit in exit seats . I explained about Rls but they were abs clueless . One flight I thought I was going to lose the plot so went and stood at the back . Despite explaining why they had zero sympathy and really didnt want me at the back ....tough ! Surely Rls should be covered in airline training but then as Gps are clueless theres no hope ! What do you take now for Rls ? GOOD LUCK !

[Theonlypetied]

Hi. I haven’t done long haul but get bad RLS on flights regardless of the time of day or duration (I guess because of the stress of anticipating the worst?). I used to take 6 Pramipexole every evening but now take Pregabalin. The Pregabalin doesn’t help with ‘flight induced’ RLS though. Every flight has been torture. I was given some Pramipexole by someone whose relative didn’t need it anymore and the last two flights of 4 hrs, I took one tablet each way an hour before the flights and had zero RLS. It was bliss! I have enough for a few more flights but don’t know what I’ll do when I run out. I don’t advocate taking someone else’s meds or taking Pramipexole generally, as it was a bitch to come off but it worked on those flights for me and I’m prepared to risk it.

[Madlegs1 in reply to Theonlypetied]

Did you have a problem with the one off use of Pramipexol? It would be good to know if it was successful for you , to be used in that way--- that is ,just once in while ,without experiencing any withdrawal.?

[Theonlypetied in reply to Madlegs1]

Absolutely no problem at all. In fact, it was half tempting to go back on the Pram as it was a miracle drug for me until I reached max dose and augmentation. Worth a punt in my case.

[Madlegs1 in reply to Theonlypetied]

Thanks, I often advise it for long journeys, but I misread your first post about bad withdrawal experience.

Good to know .

[C82021 in reply to Madlegs1]

"Well here's my story". ( With help from here and my DR.) I Just got back from a very long air travel experience. My going to travel from start to Finnish was 25 hr's and my return was 27 hr's. I was exhausted. Curently on 350mg pregabalin. My Dr. recommended adding Rotigotine 1mg daily patch, 24 hrs before the travel, and another patch the day of the travel. Idid this for both departure and return of travel. Let me tell you, I was very fearful of this trip, as I can't sit very long before RLS rears its ugly head. THE RESULTS: Absolutely Heaven, zero RLS effects, even for the day after the second patch. Then I was back to Pregabalin only for the next two weeks along with RLS again, every day. I then prepared for the return travel using the patch. Again for 3 days zero symptoms. I even had a head cold and "Dared" to take an Antihistamine during the return flight because of a severe ear ache. Trust me it was a scary moment taking that pill. Absolutely no problems. The Rotigotine Patch is a "miracle drug" for me. If only it could be perfected to not cause the problems so many RLS sufferers are experiencing. If that drug didn't have its problems I'd be on it in a heart beat, it was the best freedom from RLS I've had in years. Obviously I stopped the patch, and now back to normal with 350mg Pregabalin, and on average 5 days a week with RLS. Next trip "Rotigotine! So there's my story.

[Madlegs1]

Thanks for that information.

Why is the Pregabalin not covering you?

[C82021 in reply to Madlegs1]

It just doesn't, neither did Gabapentin at 1800mg. Want to request Buprenorphine lingual pills, or daily patch if avalable at my next visit.

[Madlegs1 in reply to C82021]

I haven't looked at your history, so please excuse me if I'm repeating things.

But are you taking any trigger meds, or foods or drinks.

Has your iron level/ serum ferritin been checked-- what is the number?

All the best.

[C82021 in reply to Madlegs1]

Yes on the panel, and yes I keep tract of my daily food and symptoms with charts for at least the last year and a half. I know of some triggers that will bring it on earlier in the day and try to avoid them. Frustrating and complexed disease.

[Madlegs1 in reply to C82021]

What was the ferritin number.Do not accept " normal" 😍

[teakabeagle in reply to C82021]

I had the same ecperience with Gabapentin and Pregabalin. Big doses of both, horrendous side effects, and minimal improvement in symptoms. Took 1800 mg of Gabapentin and 350 mg of pregabalin.

[teakabeagle]

you’d have to pay for the upgrade, but you would still need to get up and walk. Daytime flight, aisle seat.

I had one long flight, took .5 mg of Buprenorphine one hour before flight, and .2mg 6 hours later and did ok, but even without symptoms I got up every 1 1/2 hours

[Matrix]

do you have to do it I suffer with RLS and would not contemplate going on long flight . I get full body restlessness that’s the worst thing had it Christmas night I just walk up and down the hallway hours of it. Xx

[SueJohnson in reply to Matrix]

What are you taking for your RLS?

[Matrix]

nothing and I’m having an attack at the moment . It’s so painful up and down walking . I have to take so many tablets for many pain nerve things . I have 21 separate prescriptions a month I just can’t take anymore but it’s no life . Xx

[SueJohnson in reply to Matrix]

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex, sifrol). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)

Most of the side effects 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 (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin).

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 up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. Since you said you a taking a lot of them I can tell you if they are safe for RLS and if not I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender