Proper treatment for RLS! 🕺🕺🕺

[Wanman4]

Almost everything you and your Dr need to know about treatments for RLS! Including Augmentation information!

hopkinsmedicine.org/neurolo...

[Joolsg]

Many of the Johns Hopkins videos are on the main RLSUK website, and in the pinned posts.

[Wanman4 in reply to Joolsg]

Thanks ☺️👍

[Madlegs1]

Thank you.

[Wanman4 in reply to Madlegs1]

Thanks 😊

[Goldy700]

Good summary of orthodox treatments. I am hoping that the world will catch up and realise how effective medical cannabis is. I am obtaining very good relief now and no side effects.

[Joolsg in reply to Goldy700]

I too am on medical cannabis in the UK but it doesn't stop severe RLS. It certainly helps though.

[Wanman4 in reply to Joolsg]

Good to know! 😎

[Wanman4 in reply to Goldy700]

Thanks, agreed! 😎

[involuntarydancer in reply to Goldy700]

The efficacy of cannabis seems to be somewhat random. It makes very little impact on my rls symptoms. I wonder if it is strain specific. Do you know what strain you take, Goldy? And also, do you take the same strain all the time?

[Goldy700 in reply to involuntarydancer]

You need to avoid any of the Sativa strains as they are stimulating. When you get it medically prescribed the doctor or nurse usually has a good understanding of which strains are calming through feedback and experience. These would be the Indica varieties - often of the purple variety containing high levels of Myrcene which is relaxing. Some people need to avoid high THC if they get anxiety as CBD has a balancing effect. leafly.com/news/strains-pro...

[Mongodenoon in reply to Goldy700]

Hello there, just wondering how you take it- do you smoke it or take it as a tincture or an oil ?

[Goldy700 in reply to Mongodenoon]

Most nights I take the oil approximately 30 - 40mg CBD oil and I also have oil that has a combination of CBD and THC which is stronger. My doctor prescribed cannabis bud and that included a vape pen which I can take if I get a severe case overnight as it gives instant relief by calming the legs and helping me to sleep.

[Mongodenoon in reply to Goldy700]

Thank you for such a swift reply- and really useful too. I’ve never heard of a doctor prescribing medical cannabis over here in the uk, was your doctor quite open to it? Or did I get wrong and you not from the uk.

[Goldy700 in reply to Goldy700]

I am in Australia and it is legal to be medically prescribed. I hope you can get the same in UK as it is the best medication I have tried and I have tried a lot. The good thing is I feel great the next day. Good luck

[Spurdog1]

Thanks for drawing our attention to this.

[briesmith]

Thanks for this. I am on 300mg of Pregabalin, prescribed by the Royal Brompton Sleep Clinic and, as is the pattern with British prescribing, the notes say, "to be taken at night".

It is hard to think of anything more meaningless, more open to interpretation, but this expression is unthinkingly written by 1,000s of British doctors every day; because the formulary says so.

I would like to use this forum to find a more helpful indication of when the pregabalin should be taken, expressed probably in hours before bedtime.

If anyone on pregabalin would like to share what time they take it I would be very grateful.

[Joolsg in reply to briesmith]

I used to be on pregabalin and took 150mg 'at night'. I think it's a case of trial and error. I would take it all in one go about 2 hours before expected sleep time. Other times I would try 100mg 2 hrs before sleep time and 50mg when woke at around 3am.Others split their dose by taking a third around 8pm and 2/3 just before bed.

[involuntarydancer in reply to briesmith]

You are absolutely right to think carefully about when to take pregabalin. There have been a good number of posts about the timing of the dose over the years and it does appear that timing is very important to efficacy. I have noticed - as Joolsg says - that many recommend splitting their dose.

[DicCarlson]

Johns Hopkins saved me from uninformed doctors!

[involuntarydancer]

Thanks for this. Johns Hopkins was the first port of call for me when I started to inform myself about the condition.

[Wanman4 in reply to involuntarydancer]

I continue to share that info on here from time to time! We need to get that info out to as many as possible! The hard part is finding a Dr that will work with you!

[ruthgnatt]

thanks for posting. i have an appt with dr. early in April 2022. i've been waiting a year to get into see him!

[Wanman4 in reply to ruthgnatt]

Good luck with that! 😎🕺

[Pennydreadful66]

I have to say I'm very nervous about moving on to the pregabelin

I expected to experience difficulty getting to a stage when things run smoothly

but all the years I took pramipaxol with little or no problems then everything went pear shaped and they ceased to deliver the relief. When my GP prescribed

the Nuepro patches I thought of yes superdoopah only to be told of the side effects of long term use, and so decided to go down the pregabalin route starting today. I have my last Nuero patch on, lowest dose, which comes off in the morning and Ive taken on 50mg pregabelin with the intention of taking another 50mg this evening. Not sure what to expect especially after tomorrow when no more patches are available? Not a happy chappy at the mo thinking of whats to come.

[Wanman4 in reply to Pennydreadful66]

Hang in there! 👍🕺

[Pennydreadful66]

Cheers but we don't have much choice do we?

At least we're alive to experience

🤫👍