Flying

[6413]

Hi. This is my first time on here. I suffer with RLS . It's driving me mad. I went to the Gp today who has just upped my ropinerole to the top dose but I'm due to fly in a few weeks long haul and I'm really worried how I'm going to cope. Any suggestions please. 

[Windwalker]

I also hate flying so here is what I did. While I was waiting for the flight, I went to their restroom and used their drinking fountain and took an extra requip XL, Two 300mg gabapentin and two 5/300 vicodin. i got in my seat and was asleep in a minute. my wife woke me up about 5 min before the flight ended. I caught a limo home and slept there and went to bed for 4 or 5 hours.

That took care of my Jet Lag as well as  my RLS . I agree what I did was extreme, but I didn walk the aisle for 5 hours waiting for the flight to end.

Windwalker

[Redhots7 in reply to Windwalker]

Hmmmm, dangerous ! 

[Hidden in reply to Redhots7]

I wouldn't have thought so! 2 Vicodin, (co-codamol in UK & Ireland) was a pretty standard dose, (I know I've had that before).

I had a trip to the USA which was 9 hours and going to happen during a bad time with my legs.

I took my regular drugs, (at that time it was Tramadol) and added a few grams of Kratom prior to departure, (PLEASE CHECK DESTINATION FOR LEGALITY if you are taking some for the return flight), when I got on the plane half a sleeping tablet topped it all off and I had a relaxed flight. 

Hope it goes smoothly for you. You could always ask to get a seat by the emergency exit as they have more room if you have to move.

[6413 in reply to Hidden]

Thank you.

[6413 in reply to Windwalker]

Is that all on prescription? ? I have visions of walking the aisle for 11 hours!!!

[Windwalker in reply to 6413]

That is a very long flight. You might have to take a new dose of all the drugs about half way in the flight.

[6413 in reply to Windwalker]

Thank you. I will do that. How often can you take roping role?

[Hidden in reply to 6413]

Hi 6413.  Before you start taking more prescription drugs you should take a look at any substances you are ingesting that might be making your RLS worse than it has to be.  Melatonin is a known trigger and personally gave me restless body, not just restless leg.  Antihistamines, antacids, anti-depressants, statins, metformin, sugar substitutes, calcium channel blockers are all known to make RLS worse than it has to be.  Anemia and oddly enough, obesity, can trigger RLS in people pre-disposed to it.  Scientists surmise that food is a drug, and it evokes the release of dopamine, and as you have found out drugs that increase the release of dopamine help in the short run but can make RLS worse in the long run.

Some people swear by magnesium and another member has just recently sworn by a type known as magnesium l threonate.  I too am experimenting with that exact type.  The jury is still out for me.  I swear by iron bis-glycinate.  I take one tablet on an empty stomach, away from drugs and supplements and with 45 minutes my RLS is gone for the night.  RLS should really be called the Anemic Brain Syndrome.  Our brains, not really our bodies, are anemic. So I take a form of iron that I believe is able to cross the blood brain barrier.  

Good luck.

[Windwalker in reply to 6413]

It depends on how much you take normally if it is only a small amount at night then one is plenty to keep the legs calm or if the flight is a very long one take another half way into the flight, but don't drive when you arrive. Get a taxi or bus.

[Tease-ah]

I always take a Valium when I fly (fear of flying), never had any RLS this way.

[OldHollow]

Try magnesium supplements. I've been able to reduce my ropinirole dose by 75% since starting on them. I saw a big improvement after a few days and am still slowly getting better a couple of months later.  I used to respond badly to train journeys, so possibly a similar case.

[6413 in reply to OldHollow]

Thank you I will

[Redhots7 in reply to OldHollow]

How

Much magnesium do you take ?

[OldHollow in reply to Redhots7]

I take two different supplements, so can't remember exactly without looking, but I think it's around 300mg. I would take as much as you can without going much over RDA (which is apparently a Bad Thing where magnesium is concerned.

[Kaarina Administrator]

Hi 6413,

If you type  "flying" in the Search Box at the top of the page you will find quite a few past postings on this subject. I hope you can find something to help you on your long haul flight.

Kaarina

[Redhots7 in reply to Kaarina]

Kaarina, this is Redhots7, I am looking for info on Magnesium Malate users and what dosage others have used ?  I typed Flying in search but could not get it to do anything or go anywhere . After you type in what you are searching for, what do you do to get it to "go".?

[Kaarina Administrator in reply to Redhots7]

Hi Redhots, after you have typed flying or magnesium malate in the search box at the top of the page, press return and the old postings on flying/ old postings that mention magnesium malate come up on the page. Hope that helps.

Kaarina

[Redhots7 in reply to Kaarina]

Kaarina, Thank you !

[Insomniak]

I got separated from my medication on a flight 2 years ago (left it in my hold luggage stupidly) and was in a panic about how I would get through the flight. I used a trick that works for me for some reason. If my brain is actively working my RLS symptoms really reduce so I asked my friend sitting beside me to try and keep a conversation going for the entire flight which he did and it worked.

[nightdancer in reply to Insomniak]

That was going to be MY comment, Insomniak. To warn people to NEVER put their meds into the checked bag and always have it in your carryon. Now that we are not allowed to lock our suitcases since 9/11 happened, I have lost so many things out of my suitcases, it's not even funny. They even stole my curling iron for my hair!!!  So, I would never ever ever put my meds into a checked bag. The wrong baggage handler can and will steal them, have heard of it many times. We can afford to lose anything else, but if we lose our meds we are basically screwed. I take 17 prescriptions, so no one is getting their hands on those!

[Cfall]

@cfall reporting. I feel so badly for all of you that have to take drugs for a condition that is controlled by a Relaxis Pad. Go on line and get their UK toll free number and call them. Here is my story. I ran out of Ropinerole and   on the second night I was  stumbling around, blacked out 3 times and fell. Bruises were many and painful  .  So I contacted my doctor and got a new script for even more. I was in a terrible state and was foolish enough to drive ...my car into the side of the garage. 

    I was told about Relaxis, called and began the second part of my journey. So long as I kept taking the Repinerole I could not get good results. I was scared to stop the Rx.Now a little smarter, I weaned myself off that horrible drug. Then it happened , the RLS stopped. Just 30 to 60 minutes on the pad.  Just a few nights ago I did not use the pad and the RL stayed away . I keep the pad handy for daytime problems and will use it when I fly.

     I wish I could say I was out of the woods but I am having trouble sleeping. They say it takes 35 days for Reprinoele to totally exit the body. Sleeping is getting better and I'm 18 days post pill. I will get there and never touch that pill again.  The pad is FDA approved. They have their CE Mark. The problem is with the thalamus sending messages to the legs. Drugs will not work. Call Relaxis Pad now.

     Please don' t increase the drug. It goes into an augmentation stage and makes things worse. Hang in there. Be brave. This is not easy but very rewarding to have a clear head again and legs that don't jump, twist and make my life hell.   C alifornia   Claudine or @cfall

[6413 in reply to Cfall]

What is a relaxis pad?? How does it work please. Willing to try anything

[ukmsmi4 in reply to Cfall]

Might be wrong but I don't think it's available in the UK.

[nightdancer in reply to ukmsmi4]

I have heard of people getting the Relaxis pad sent to them in the UK, even though it has not yet been approved for insurance in the USA ever since 2014. Something is holding it up. Also, the pad is ONLY for Primary RLS, nor secondary RLS. So keep that in mind. The pad has it's own web site and also a Facebook page for more information. I know the doctors who invented this and tested it VERY well, and it was a small study, so as usual it may help some people, but no one thing helps everyone with RLS .........YET. We can hope for now. I do know the pad can be rented, etc, the cost out of pocket right now with no insurance is about 1,000 bucks.

[funnyfennel]

I think that the anxiety builds up before the flight and I would take some valium the day/night before as well as on the day...if you have not taken it before you do need to try it so as you are familiar with the effects....good luck..

[Legsandmore]

I take Magnesium Citrate 300/400 mg per day. Plus 100 mg of Vitamin B6 and 25ug of Vitamin D3.

I also use New Era Mag Phos number 8 which l buy on line.

What l found is that it's best to take the Mag Citrate 3 or 4 times a day, rather than one big hit. ( it can upset your tum otherwise ).

The New Era is great for travel as it dissolves on the tongue. If my legs kick off whilst flying l find the New Era will take the edge off after about 15 minutes.

The Magnesium etc has NOT taken my RLS symptoms away, but definitely helps.

[glosman]

Hi I do sympathise as RLS has caused me problems when flying but I have now found a way around that which does seem to work for me. Basically before the flight whilst waiting I try to walk around as much as I can to keep my legs stretched + say 20 mins before I board take 1 or 2 x 25mg Ropinerole tablets giving them a bit of time to work before the doors are shut & I am cramped into my seat.

Also if possible get an extra legroom seat which gives a bit more room to stretch, tell the aircrew most are sympathetic to peoples problems + finally get a relaxation track on your ipod to listen to on the plane - RLS seems better if you are relaxed in mind.

Hope this helps.

[jk3842]

Sounds like you have augmentation going on with the Ropinrole . Same thing happened to me. I had to change med's. 

First you need to go to a specialist like sleepclinic at a teaching University. Not all doctors are equal. You want a doctor that is dealing with RLS daily. I had to switch my RLS doctor 3 times until I found a doctor group that knew what they were doing. 

[6413 in reply to jk3842]

Ah ok  thanks for that

[Hidden]

Not a good idea increasing the Ropinerole.  You shouldnt be taking more than 1mg that is the new recommend highest dose for that med and that is the RLS experts saying it. 

[Pippins2]

Hello 6413, what dose of Ropinerole area you now taking? Have you had to keep increasing the Ropinerole?  Do you find that your symptoms start earlier in the day to before? Have you noticed symptoms start after shorter periods of rest and relaxation?  Have the sensations spread into your arms? Did the Ropinerole not work so well at night so you upped the dose and it helps for a while but then symptoms come back so you up the dose again and so on .? These are very important question as they are signs of augmentation  ,,Pipp

[6413 in reply to Pippins2]

Yes yes and yes!!! What does augmentation mean?

[6413 in reply to 6413]

I'm now taking 1mg in the morning and 2mg at night

[Pippins2 in reply to 6413]

Augmentation is a condition that sometimes occurrs to those taking dopamine agonists medications eg Requip ( Ropinerole ) and Mirapex ( Pramipexole, Neupro patch. Basically it is a worsening of RLS that is actually CAUSED by the medication itself. If you scroll down the posts you will see one by SLMCP entitled Augmentation /What is augmentation? It is currently 38 posts below this one.In the comments on that post Kaarina has put a link to a video which explains it in more detail. Augmentation occurrs most often when people are taking high doses of the Dopamine Agonists  which is why the experts have now lowered the daily recommended doses, the maximum for Requip  (Ropinerole ) is now only 1mg a day,2mg absolute tops and under close medical supervision so you are taking too much . Unfortunately many doctors area unaware of augmentation and continue to prescribe high doses Once augmentation happens the only solution is to get off the medication. However this can be very difficult to do as symptoms usually worsen considerably during withdrawal. Therefore  weaning down very slowly is normally recommended and a strong painkiller is needed to help with the withdrawals. Many find Tramadol helpful. ...Pipps x

[Windwalker]

My neurologist has some Parkinson's patients who take 20 mg of ropinirole a day and they tolerate it well, so don't worry about overdoses. It is the vicodin you need to tak no more than on pill every 3 hours.

[Hidden in reply to Windwalker]

Windwalker yes of course some Parkinson's patients take a lot higher doses of any dopamine med..  They are supposed to for their condition.  They dont experience augmentation.   We RLSers DO experience augmentation.   Parkinson's and RLS are both different conditions even tho we use the same meds.  There is a reason for RLSers to be taking lower doses than people with Parkinson's.   If your neuro is saying its ok for people with RLS to take such a high dose then he is very very wrong. 

[Windwalker in reply to Hidden]

He is a retired professor of neurology at Northwestern University Chicago IL. Patients come from hundreds of miles to see him and he gets all the referrals from Neurologists at Northwestern medical practice who have RLS. He has just two days ago assured me I won't have augmentation unless we go to a much higher dose. i have the utmost trust in his expierence and expertise, until he is proven wrong and then I will get my advice from the on line doctors.   

[nightdancer in reply to Windwalker]

In parkinson's disease, the cause is a LACK of dopamine. In RLS the dopamine cannot cross the brain/blood barrier and is blocked from the brain, bit technically RLSer's have enough dopamine, it just cannot get to where it is supposed to go, to give the SIMPLE explanation. Even 'specialists and experts" can get the dosing wrong and we see it every day in every group I have. Parkinson's patients have to taker higher dose because they LACK dopamine. not so with RLSer's, we have enough, but it gets blocked. if a person with RL

S was on 20 mgs of a dopamine meds, that would be 18 or 19 mgs way too much! Sorry but it is true, keeping in mind we are all different. But we all do have the dopamine blockage in common. This fact is not disputed. 

[Hidden]

You are already on a too higher dose so if you have had to increase it to a higher dose then you must have already experienced augmentation.   My advice is what comes from the RLS experts.   I am just responding to the high dose you take.  Its what i say do to anyone on here that i see who is taking a dose that is way too high of a dopamine med.    Getting off such a high dosage is a nightmare and i dont like to see people suffer trying to detox from it. 

[nightdancer]

My doctor very kindly gives me xanax for flying. She gives me about 10, so I have enough for the flight out west and for the trip back. I can doze off, read , do whatever I want, so I actually LOVE flying! Also, one good thing to do is to get one of the RLS cards that explains the condition to hand to flight attendants. It can be gotten for free from rlshelp.org   also, another good thing to do, is to try and get a seat in the emergency isles. Much more leg room to be had, which can be really helpful.

[Cfall]

What did doc say was the max for RLS. A T 3 to 4 mg I went into augmentation. Now I'm off😃@cfall  

[Retren]

Regarding the relaxes pad (May1)I believe a prescription is required to obtain it.