coffeecup

[Coffeecup]

I have tried everything ! After years on Pramipexol I augmented but was persuaded by a neurologist (against my better judgement) to try Ropinerol - guess what - augmentation. After weaning off it I was so looking forward to relief from Pregabalin - no relief just horrendous brain fog. Gabapentin - no relief from symptoms. I actually wake up with restless legs. I suppose opioids are left - if I can get them!!

I am taking a flight end of the week and dreading it. The last flight I was on (only 2 and a half hours) had me at the back of the plane by the loos crying I was in so much agony. I see some people get relief on the flight from taking DAs. I have some Repinex XL left - when should I take it? How long before flight? I used to love flying - not any more!!

[SueJohnson]

Yes take it but just for the flight. It can take 6 hours to work so I would take it 6 and a half or 7 hours before your 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.

[SueJohnson]

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

[RLSofManyYears in reply to SueJohnson]

How available is dipyridamole in the UK, and how can doctors prescribe it if NICE don't recommend it?

[SueJohnson in reply to RLSofManyYears]

It is available in the UK and some on this forum have taken or been prescribed it. Show your doctor the articles.

[RLSofManyYears in reply to SueJohnson]

Thanks, I've printed it out and will give it to the surgery.