RLSon flights

[Jauny]

I've just returned from a 16hr flight from Thailand to the UK. My RLS kicked in almost immediately- the flight set off at 23.50. It was complete hell, I had it for about 10hrs of the flight and was up and down, walking about, stretching and basically at the end of my tether the whole time. Eventually one of the hostesses told me I had to sit in my seat which was impossible, I was clambering all over it. I dont want to have to stop my travel but I can't go through that again. I was actually frightened I was going to be forcibly restrained! Any advice? I'm only at the start of taking iron supplements to see if that helps but do not have my RLS under any sort of control and its just getting worse and worse.

[Madlegs1]

Can you get hold of any codeine medication? Although I think Thailand is fairly strict on opioids etc, so be very careful that whatever you take is ok with the authorities.

I presume you are not taking triggers of any kind such as medications and food / drink??

[Jauny in reply to Madlegs1]

Ive never been able to identify any food or drink triggers. I wish I could as at least I could exercise some sort of control over it.

[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.

If you are not taking any medicine yet, ask your doctor for a prescription for ropinirole for just enough tablets for your flight. However don;t continue taking them other than then although you will be tempted since they may make your RLS much better but they are dopamine agonists which will make it much worse in the long run.

[Jauny in reply to SueJohnson]

Hi Sue. Thanks for this advice. I have a new GP and he seemed open to listening to what I was saying regarding my RLS (based on what you and others have said on this forum)and has prescribed Ropinirole which I will use just for flights or other such occasions despite the fact that he has given me 36 0.25mg tablets!

I have not taken these before or any other medication for RLS. Can I ask what you would advise in terms of how to take these tablets. Is 1 tablet enough for a 13 hr flight ? Also I understand that it is not advisable to take these tablets too frequently in order to avoid augmentation but how often is too often??

I am not currently taking anything else for RLS so have followed your suggestion and asked for a full panel iron test which he has authorised...but there is a bit of a wait for that. If indicated by the test I will try and tackle any iron issues first but if that is not successful I will ask for some other medication.

Thanks again for your help.

[SueJohnson in reply to Jauny]

Take it every 8 hours on the flight or sooner if you feel your symptoms coming on. 1 tablet should be enough - take it 1 to 2 hours before your flight. If after 2 hours you are still having symptoms take another one.

Do not take them for anything other than your flight though you will be sorely tempted. Not just because of augmentation but because of withdrawal effects. Then ask for gabapentin or pregabalin if your iron issues don't resolve your RLS.

However it will take several months for your iron to raise your ferritin. I would not wait to start the medicine as once you retake your test after 3 months and find your ferritin is OK then you can slowly reduce your medicine to find out if the iron controls your RLS.

Do report back once your find your ferritin and I can give you some advice on which iron to take, how much and how to take it,

[etchea33]

Whenever I go on a flight I take Pramipexole ( a dopamine agonist, like Ropinirole) 2 to 3 hours before departure. If you have never taken a DA, the smallest dose should be effective and last several hours / help you sleep. But as Sue says, do not take it except when flying or possibly long car journeys as it will aggravate your RL long term.

[Allyp69]

I have the same problem flying to see my son in Sydney....used to fly Business Class as lying down makes all the difference..but too expensive now .tried Premium Economy....not great. Eventually tried prescription zopiclone...knocked me out for 9 hours plus...luckily with my husband ..like a zombie when I got home...but I can't travel Economy any more long haul...talk to your GP??

[barbarylane]

I went to Thailand in December. I always take my massage gun. It really does help. You may get some funny looks, but when you need to be seated it helped me calm my legs down

[Jauny in reply to barbarylane]

I have a therapulse. Is that the sort of thing you mean? I find it can help with milder attacks but it didn't do anything in this instance. Probably didn't get it on quick enough!

[barbarylane]

Yes, the same sort of thing. I use my close to the tops of my knees and down the sides of my thighs for about 7-8 minutes at a time. It does work most of the time.

[Munroist]

I have a pack of extended release ropinirole for use when I’m travelling or staying somewhere where roaming around half the night is not convenient. I’ve used it for one night and it worked fine but having in seen the many descriptions of augmentation and damaged dopamine receptors I don’t even like using it occasionally and there’s zero chance of taking it regularly. It’s just so I can have a bit of a life and go away occasionally without creeping up and down hotel corridors.

[Jauny in reply to Munroist]

Thanks. I probably need to look into medication but I've been terrified at the thought of augmentation and so far haven't taken anything... but getting desperate.

[Weezie99]

Opioids. For just such occasions.

[Coeso]

I sympathize completely. Even in the cinema or theatre I have to take an aisle seat and usually have to make a quick exit before the end. I've just started gabapentin and feel so relieved as Im flying long haul to west coast US this month and gaba is working. I had been dreading it but feel better now. Try and get a prescription for codeine or tramadol and keep it with you. Please check beforehand as you don't want to be put in a Thai prison.