Long Haul Travel

[Coladh]

I will travel to Australia from Ireland in November, stopping in Dubai for two nights to ‘stretch’ my poor poor legs.

I would be grateful for any advice you all could give me.

[Hidden]

Hi Coladh. How is the iron at night working out for you?

[Hidden in reply to Hidden]

The reason I ask is because here is how one member’s long flight went for her: healthunlocked.com/rlsuk/po...

[Coladh in reply to Hidden]

Thanks guys. Have had iron injections recently but don’t feel any improvement yet, I have 3 more injections to go. Here’s hoping!

[Hidden in reply to Coladh]

I don’t think the injections are as effective as taking 25 to 50mg of ferrous bisglycinate an hour before bed. It relieves RLS in one hour for me and as you can see for GillRLS as well.

[Graham3196 in reply to Hidden]

With RLS we all finish up with similar symptoms but a big range of causes. Low iron is just one cause but it apparently affects a large proportion of patients. It makes sense to raise your iron level to the highest level that has been found to help and is considered to be safe. According to Doctor Buchfuhrer this is about 300. If this greatly benefits your RLS then you can start backing down to a level that is just sufficient to stop the symptoms. You can experiment with iron biglycinate to maintain the optimum iron level while you continue to enjoy a reasonable life. Starting with iron biglycinate will probably never get you to 300 and might take a literally awful time to get to a level that relieves your pain. You have to experiment on yourself because no doctor has time to fine tune the dosage to suit your body. Too many bodies and not enough doctors. Too many of the bodies can't afford to buy the doctors they need.

Of course you might be one of the many who are not helped by iron adjustments so experiment with other things like diet and food intolerances. So far as I can find very little scientific work has been done on such other causes. In my case my very severe RLS is under reasonable control by diet and quite a few others in this forum have reported relief in varying degrees by such diets as vegetarian, vegan or a few others.

Following the science is a good idea if the science has been done and done properly but until science looks at everything you can feel free to follow paths that are experimental. Just make sure you stick to the medical maxim "First, do no harm"

[Hidden in reply to Graham3196]

Hi Graham, I believe there is only one cause for RLS almost like Type 1 diabetes and unlike say headaches. We all have a lousy dopamine transport system and specifically small and few D2/D3 dopamine receptors… as well as brain iron deficiency.

For most of the day even those lousy receptors pump out enough dopamine such that we don’t get the restlessness. But at night when free-floating serum iron levels drop (not ferritin) those receptors no longer pump out enough dopamine to quiet our legs and other body parts. Iron is the grease and glue that keeps everyone’s dopamine transport system chugging along. Unlike the non-RLS world we don’t have much in the way of brain iron stores so we with RLS rely very heavily on that serum iron.

You’re confusing things that trigger or make RLS symptoms worse, such as Benedryl, spinal injury, chronic kidney disease with the one and only true underlying physiological cause of RLS. You’re not alone. A lot of people make this same mistake. Type 1 diabetes is caused by a malfunctioning pancreas. There are numerous diets or activities that can improve or worsen diabetes but there is only one cause.

Fortunately RLS researchers don’t have this same misconception. And if we want to be our own researchers we need to divest ourselves of this misconception. The cavalry isn’t coming. I believe we need to figure out ways to up-regulate our dopamine receptors. Right now it seems that everyone from porn addicts to investment bankers want to figure out ways to do this and there’s suggestions all over the internet. Whether it’s severe calorie restriction, anaerobic exercise or substances like berberine there will be some amount of discomfort involved in up-regulating our receptors. But that’s probably what we need to be talking about and looking at. And oddly enough, a lot of those triggers (or causes as you call them) such as melatonin, SSRIs, even statins which antagonize dopamine and make the SYMPTOMS of RLS worse in the short-run may actually up-regulate our receptors in the long run. No one on here is going to do this type of research or analysis if they believe as you say that RLS has different physiological causes.

[Graham3196 in reply to Hidden]

Be that as it may the only thing that matters to me is stopping the symptoms. I am not a researcher trying to solve the mystery.

However if I were a researcher then I would be looking for anomalies because they are clues to the truth. If iron is my problem why didn't an iron infusion fix it? Why does drinking a glass of milk trigger my RLS? The true mechanism of RLS will explain these things. Why do you think my glass of milk triggers my dopamine receptors to fail?

I have only a few years left so my interest is enjoying them as much as possible and that means getting enough sleep and being able to sit through a movie or an opera without having to walk around in circles at the back of the audience.

I have three children and all of them have some degree of RLS so my long term interest is in being able to tell them that when it becomes unbearable they might relieve it by following a diet or having an iron infusion that their GP will never think of.

What we really need (but will never get) is a program spending millions on the research to confirm that the only cause of RLS is a dopamine problem and then develop a repair technique. Probably 100 million would be a start and that might help my grandchildren!!

[Hidden in reply to Graham3196]

I think if you drink the milk during the day you’ll be ok. I myself find that a large dinner, especially at a restaurant, will provoke RLS symptoms for about an hour or two. Some chemical is released when you stuff yourself that competes with dopamine then dissipates over a few hours. I need to look that up again. Then eating anything (even just crackers) much past 11pm will trigger a short spurt of RLS even after I’ve taken the iron. Our lousy dopamine receptors don’t exist in a vacuum. They’re part of Mother Nature’s symphony. When we eat at night we’re bucking up against millions of years of evolution wherein we hunted and ate by day and slept when the sun went down. Australopithecus didn’t have a cup of warm milk before his midnight bed time. Feed your kids an early dinner, no snacks afterwards and then give them an iron capsule if their RLS is still acting up. Following our natural circadian rhythm in terms of not only sleep but feeding time will probably go a long way towards minimizing RLS symptoms

[Graham3196 in reply to Hidden]

This shows the diversity of triggers and sources. A glass of milk would upset my RLS for two nights. The glass of milk is just offered as an example of challenging my body with some food that it might find to be a trigger. This challenge indicated that lactose is a trigger so I now avoid any lactose. Its not just a transition from overeating to standard operating procedure. My point is that without spending a few years studying medicine and science I cannot determine what causes the RLS and its relationship to food. What I can do is to determine what does not trigger my RLS and restrict my diet to that so my life can go on. An iron capsule is no use to me but I am glad that your suggested eating routine works for you.

Now there is the question "What is the relationship between lactose and dopamine?"

[Hidden in reply to Graham3196]

There isn’t always a straight line that can be drawn but rather a cascade. Let me start off by saying that we with RLS are dancing on the head of a pin. Or standing on the edge of a cliff. One false move and we fall off into the RLS abyss. A lot of times we have no idea what the false move was until we see a pattern emerging like you have with milk.

That’s why we all need some fail safe emergency med. I’m not sure what you mean by “upset” your RLS - do you mean normally you wouldn’t have had RLS but for the milk? Or it’s more intense for two days after drinking milk? Are you truly lactose intolerant or are you allergic to the proteins in milk? True lactose intolerance or true milk allergy for that matter results in some violent symptoms including diarrhea or vomiting or hives. Milk is like a foreign invader to people with these conditions. Their body goes into full assault mode. When our bodies feel they are under attack most times hepcidin will be released. Hepcidin means less serum iron. Less serum iron means more RLS. Is this you?

[Graham3196 in reply to Hidden]

Thanks SanAndreas Do you have a medical background? I have been tested for all sorts of allergies but I dont know if milk protien was included so perhaps there is something in lactose that gives me RLS if I havent got it and makes RLS worse if I have. Why is that distinction important? The easiest solution for me is to avoid all cow's milk. I have to be practical and continue with my life. Where I like milk in a coffee for example I use almond "milk" or oat "milk" It works.

[Hidden in reply to Graham3196]

I do not have a background in medicine I just think I do. I have an odd assortment of illnesses and have had them since I was young so I started reading up at about age 16 and continued for the next 35 years. I think you and I have discussed this topic before. I think we both believe that a rowdy gut microbiome is our biggest trigger. I think Madlegs would agree with us as well. I read everything I could about the gut microbiome for years and even took a class, but came up empty handed in terms of how to go about taming the beast. It’s as vast and confusing as the stars and planets in our universe…at least to me. So I did what any good scientist would do and gave up - I gave up trying to figure out what micro-organisms a “healthy” microbiome contains. Maybe I’ll revisit one day.

[Graham3196 in reply to Hidden]

I dont recall microbiomes. My aim is just to treat the symptoms and I have found that in my case diet is the one way that works acceptably. It works for some others as well.

[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. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot.

[BeachGolfer]

I’d suggest bringing compression socks which I have found beneficial when legs restless. If you belong to the RLS Foundation they have a card that explains the needs of persons with RLS. that you can give to flight attendant if needed. I wish you well!

[Shumbah]

if you were not travelling through Dubai , I would recommend asking doctor for 5 mg endone tablets to take PRN .

Endone is quick acting I don’t not recommend oxycodone long acting.

I am flying to the UK from Australia in Feb , due to my Buprenorphine I will have to fly Brisbane to Perth and take a direct flight to Heathrow.

It is actual a pain however better than being banged up in Dubai.

We fly business prior to my medication if the flight was really rough I would actually sleep the whole trip.

Everyone would hold on tight and I would love it . It was the only time I had true relief was turbulent flights.

I’m not sure it would have the same effect in economy.

Perhaps there is something in it and we need special beds that create this random movements.

Prior to Buprenorphine air stewardess would keep at least 3 cans of open

Tonic water next to me so it would go flat and easy to drink.

Air stewardess suffer from RLS this is their hack.

[Hidden]

Breaking your journey into two parts is a good idea and will definitely make it more manageable.

Avoid alcohol, sugar and any known dietary triggers for a couple of days before the flight.

Get good sleeps before the flight so you're not overtired. (This is the most important one for me).

Bring activities that engage the brain eg. Crossword puzzles, Sudoko etc

Walk as much as you can. At the airport and on the plane.

[Wairahi]

Pramipexole. My solution to long-haul flight is to take some extra pramipexole before the time that RLS is likely to set in. I know it's supposed to be dangerous, but to me it's preferable to having the pilot make an emergency landing because there's someone on the plane having uncontrollable seizures, conscious or not. I've never found any negative side effects from so doing, unless you consider that being nutty enough to suggest this is a negative side effect. Or you could take some extra gabapentin, it's always a nice floaty feeling although some people don't enjoy it.

The other thing I ALWAYS do is make sure I choose a seat at the very, very, back of the plane, absolutely the last row, and on the aisle. That way I can get up and stretch, and go into the toilets and stretch, and hang out in the galley with the flight attendants, without bugging anyone at all. People say the back row is too close to the toilets but the toilets are negatively pressurised, meaning that you can't smell anything, they suck air in all the time rather than let it out.

I appreciate that I am the bad boy of this group, but hey, I'm 70-and-a-half, a person doesn't have to be good their WHOLE life, do they?

😀😀

[Allyp69]

I am using Therapulse on my legs which I bought especially for my flight to Sydney in January. I have no idea if it will help on a 15 hour flight from LA but time will tell.

[Simkin]

Longhaul flights are a nightmare. I really recommend getting as much leg room as possible so you can stretch legs right out in front of you.

You cannot do longhaul with legs all squashed up. Also I stand as much as possible in the aisle so I can do stretching.

[Simkin]

Oh yes and if plenty of space I use therapulse.

[Graham3196]

I dont find that breaking the flight into small hops helps my RLS. I walk a lot and stay awake the whole flight (53 hours Mel to LHR vie Shanghai and Beijing but I saved more than $1000 for the family) Only once has anyone asked me to sit down and I just explained for as long as they wanted to listen to details and then they gave up and let me walk.

This is a huge advantage for us. We can stay awake and walk and avoid Deep Vein Thrombosis. I have known several people who have suffered DVT without knowing it until some doctor accidentally discovered clots in their blood. They were the lucky ones. Walk, walk walk its more fun than watching crummy movies.

When my RLS is active I can't focus on a book or other distraction so I dont know how well that would work.

The last trip I did I made in short hops because my wife prefers it. Melbourne, Singapore, Hongkong, Seol and return. That was good but my RLS behaved well and it took a week to get there.

Can anyone explain why I get almost no RLS when traveling in Asia? I eat the local food without following any diet but RLS is rare.

[67Waterman]

I totally agree with Waihiri's message below. Whack down extra Ropinirole and keep drugged up during the entire journey. If you feel you can cope without drugs for a short time, keep your brain engaged with lots of films. But if it is an evening or night flight, do NOT get over tired as this will make the RLS worse. I am now on Pregabalin, but always always take the naughty Ropinirole to really knock the RLS on the head under difficult circumstances. Good luck.

[Coladh in reply to 67Waterman]

Thanks guys, loads of information there. I’ll let ye know how I get on !

[wigglecat]

I take Gabapentin (biggest help) but also on trips: rub Epsum gel (or magnesium oil) on calves, wrap with Ace Bandages (tight around higher muscle, less so lower down, don't cut circulation to feet). If possible soak legs in hot water first but that would be hard on trip.

[booras]

If you don't crochet, try learning even the most basic stitch and try doing that on the flight if you think the RLS is going to start. It helps. No one has mentioned it yet and I found it helps completely by accident after I recently took it up. If I am in a full-on RLS attack, it is too hard to hold still long enough to have it make it go away fast enough, but if I am crocheting, the RLS just doesnt come on in the first place. Its inexpensive and you might make some nice blankets

[Coladh in reply to booras]

Thanks Booras, , that’s a great idea, it’s been on my list of things to learn as I have a crochet blanket my mother made that needs repair! Thanks to everyone, I’m taking all of your other great great tips on board and will be way better equipped for the trip, thanks again.

Coladh