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Restless Legs Syndrome

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Anxiety attacks when unable to move about

honeyhive profile image
5 Replies

Life long sufferer here. Currently on low dose opioids after trying everything else under the sun.

I have things pretty much under control except for when I am in a situation where I cannot move about... specifically airplanes. I get massive RLS and panic attacks.. I do deep breathing, listen to solfeggio with headphones, etc., nothing works.

I have a long haul flight of about 6 +15 hours coming up and I'm stressing over it already. Last time, when I asked my PCP for something to treat she prescribed me an antihistamine which just made things worse. It was so bad I thought I was going to drive my foot through the floor of the plane.

What would you recommend I ask her for to treat the intense anxiety?

Thanks for any advice.

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honeyhive
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5 Replies
SueJohnson profile image
SueJohnson

Ask for a DA like ropinirole or pramipexole, Taking just for the flight should control your RLS so you don't panic, and you won't get hooked on it just taking it for the flight. But don't take it for more than the flight.

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.

Clamire profile image
Clamire

I recommend you take 56mg of ferrous bisglycinate. Works even better on an empty stomach. Should relieve flight related RLS in 1.5 hours so take before flight. Most doctors are willing to prescribe 5 or so 1mg Xanax for trips. I think that’s the way to go. See the below member’s story. If you want to know why flights make RLS worse just ask. I don’t want to write out unless you care to know.

healthunlocked.com/rlsuk/po...

I’m “that lady” who told her about the iron. Oral Iron is to RLS what aspirin is to a headache. It is THE single best treatment out there. Does aspirin work everyone? No. Still, it’s the first thing to try. If you’re on an SSRI, the iron is like whistling in the wind. The best you can hope for is some relief from the iron, not complete. If you’re first coming off the DAs, it is once again like whistling in the wind.

PLEASE let me know if it works. We have dozens on here that take it at night to relieve RLS, but we need more evidence for flight-related RLS.

Happy trails Honey.

honeyhive profile image
honeyhive in reply toClamire

Thank you for the replies... I will try the oral iron... She seems to think since my levels are "normal" it won't make any difference and says insurance won't cover an infusion. 🤨

I will also run the Xanax by her but think that is a long shot... She has been very reluctant to go the opioid route and have had to arm myself will all the latest research when I have an appointment. She doesn't want to be responsible for Grandma robbing stores, mugging people, and making back alley hookups to get her "fix". 🤣

SueJohnson profile image
SueJohnson in reply tohoneyhive

Try Clamire's suggestion before you take your flight. If it works it will stop your RLS completely for that one night only. Since your RLS is controlled except for when you are in a situation where you can't move about you will need to put yourself in such a situation to find out whether it works. If so great and try it on your flight and let us know. If not follow my suggestion.

What is your ferritin? That is the most important iron number for RLS. What is normal for others is not normal for those of us with RLS.

honeyhive profile image
honeyhive in reply toSueJohnson

Thanks for the flight suggestions...My husband's long legs get the aisle seat. As for the Special accommodations card, not meaning to be disrespectful, but when was the last time you flew?

I always take meds pre flights no matter what time of day. Long haul flights from the US are almost always red eye...unless you are willing to pay thousands (literally) more.

I think for the upcoming flight of 22+ hours I may just double up on the meds...and I do have some carbolevodopa, but that screws with my sleep in the best of conditions...

Thanks for the support!

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