flying

[nick-the-turk]

just returned from holiday and the flights were horrible due to my restless legs we only do short flights now which are 2 hours long give or take but my legs go crazy can anyone give me tips on flying please ! My wife and I both work hard and enjoy our annual break away we would like to fly further but can't again impacting my wife's life so any tips on contoling these legs I would appreciate greatly many thanks nick

[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. 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. Also taking an extra dose of your medicine can help

[funnyfennel in reply to SueJohnson]

I never travel abroad anymore, but when I did I only took morning flights, late late in the morning so there was no stress and arrived early in the afternoon always traveling in total under 4 hours. I had had the experience of getting my RLS on a plane and having to lift my legs in the air and do lots of embarrassing things in desperation, so I decided to avoid those issues. I even get RLS on the bus if I'm traveling near the end of the day ie 4:00. I rarely go out in the evening it's just too risky for my RLS. So my life is limited and adjusted so that I can live in the least painful way with my RLS. I agree that the medical services do not recognize it enough nor realize how much pain it gives us both physically and mentally. I would be prepared to give contribution, but not too much. I'm actually now after many years going to see a neurologist and it will be interesting to hear what they have to say. I went to a hospital in London years ago which was supposed to be specialist but all they wanted was to collect statistics for their research papers. I did not feel cared for. Years ago when I was on ropineral , and having a problem still my doctor just keep kept increasing it until it was 4 mg and I could hardly function in my life . Partly through this group I began to work out what I perhaps did need . I'm now managing most of the time with the pramipexil and oxycodone and if taken at the right time I manage some of the time. But I don't like talking to people about it because they don't seem to think it's anything important. So I'm very grateful for this site even though I left it for quite a few years and in the middle had open heart surgery. But hopefully I will keep in touch this time because I'm very grateful for the sharing that goes on here.

[SueJohnson in reply to funnyfennel]

If the pramipexole is not completely controlling your RLS you are probably augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

I strongly suggest you come off it because it will only get worse. How much are you on?

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .088 [.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your oxycodone temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[nick-the-turk in reply to SueJohnson]

tried all that Sue both flights out and return early to mid morning took pregabalin and codeine a few hours before flying still crazy i have a medical card explaining condition and if extra leg room available etc etc its beginning to spoil our holidays away I suppose like everyday life doctors/ neurologist won't have any answers but to say not to go then but its taken away so much of my and indeed my wife's life that I will have to carry on and fight through it . again many thanks Sue

[SueJohnson in reply to nick-the-turk]

Then you might ask your doctor for a prescription for pramipexole or ropinirole. You won't get hooked again if you just take it for the flight.

[Munroist in reply to nick-the-turk]

I'd agree with Sue here. A dopamine agonist will normally be very effective in controlling RLS and as long as you just take it for travel I don't believe there will be any negative effects. I occasionally and very reluctantly use ropinirole when I'm away from home and it would be difficult to be up all night pacing around. I have however found it's not great with alcohol - I was very sleepy and almost falling over.

[Wordsworth99 in reply to nick-the-turk]

Hi Nick-the-turk, how much codeine do you take? The mayo clinic algorithm recommends 60-180 mg codeine as being the usual effective daily dose. Perhaps you need more? Otherwise could you try tramadol. Mayo states 50-200 mg. Just for the flight it could be an alternative to taking a dopamine agonist, which may unfortunately work so well that it tempts you into continuing it after the flight! With codeine, and to a lesser extent tramadol, remember to take a laxative to prevent constipation, though you probably know that already. All the best with your next flight. I feel for you!

[Allyp69]

I sympathise as our son lives in Sydney and the flights are so long..I got a prescription for Zopiclone but it knocked me out for the whole flight on the way back...but it stopped RLS....

[SleepDepriv3d]

I live in Australia but my family is in Canada, and I’ve done the 20+ hours of flying, about 8 or 9 times. I’ve spent so many of these flights crying and not getting any sleep. I do all the other mentioned things, aisle seat, walking around, stretching (even embarrassingly stretching on the floor in the food area). I wear compression socks.

I’ve taken diazepam for a few of them, enough of it will knock me out for hours but I’ve woken up and vomited on multiple flights when I’ve done this…

A flight I took last year, I was on pramipexole, and I had codeine for an injury so I took that too, and for the first time I didn’t have to worry about my RLS. I’ve augmented since so I’m terrified of the next flight I have, but I like the idea of taking pramipexole for flights only that has been mentioned above.

I’d say asking a doctor for a couple of sleeping pills (as long as they are safe to take with your other medications), then this might be an option? I know some friends whose doctors give them 10 tablets of diazepam for flight anxiety, so you might be able to get some for sleep.

[Mongolia2020 in reply to SleepDepriv3d]

Be careful with sleeping pills because I believe most of them make your RLS worse - I took one once when I was desperate and, although I hadn’t thought it could get any worse, it did.

[SueJohnson in reply to Mongolia2020]

You are the exception though which just goes to show everyone reacts differently. Sleeping pills shouldn't make RLS worse.

[Mongolia2020 in reply to SueJohnson]

Oh I am very sorry everyone I was sure I had read that, and I certainly experienced that but only only took one once. My apologies.

[SueJohnson in reply to Mongolia2020]

No apologies necessary 😀

[Huntingleroy]

Like you I thought I was going to lose my mind on a 4hr flight . Stood at back for a while but staff werent impressed ! Now Im off the horrendous Ropinirole and FINALLY got Buprenorphine, my life has been changed 100%. Had to go privately initially but I didnt care in the end. Just flown to Crete day , a night flight home and not even a twitch ! I think Im still in shock ! Good luck !