what i use

[maribarosay]

I have been using a newpro patch 6 mg and tramadol 50 mg every night. The patch and transform I put on early evening then at bedtime when I’m ready to sleep I take a temazepam 30 mg I have several as needed medications to use if needed; magnesium, ibuprofen 800 mg, Tylenol 1 g. I still have my nights when I can’t sleep, but this therapy is fairly successful.

[SueJohnson]

You mentioned 8 months ago you were augmenting. You were given good advice then but obviously you ignored it because you then posted the same 4 months ago and today.

Is there a point for you in effect making the same post 3 times? You are not asking for help and what you are taking is terrible advice for others.

[maribarosay in reply to SueJohnson]

I’m under doctor’s care. This is what works for me.

[SueJohnson in reply to maribarosay]

Your choice obviously even though your doctor is wrong and you will eventually suffer for his lack of knowledge!

Unfortunately most doctors are not up to date on the latest researched advice on treating RLS.

Have you read the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

or the American Association Sleep Medicines guidelines at jcsm.aasm.org/doi/pdf/10.56...

[maribarosay in reply to SueJohnson]

I’ve read where Neupro helps treat RLS and Parkinson’s.

[SueJohnson in reply to maribarosay]

It used to be first line treatment for RLS but no longer is because of the danger of augmentation and the maximum amount is a 3 mg patch, so by definition you are already augmenting since the signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[Joolsg]

Mariba,6mg of the Neupro Patch is way above the FDA maximum.

Also, experts are now clear that the Patch is actually worse than the pills. Augmentation will be happening now.

Here is Dr Berkowski again. Explaining why the patch is BAD. PLEASE WATCH IT.

youtu.be/Tz7g9sxS0_I?si=Zkd...(Not working as expected?)

This forum is run by RLS-UK which follows the Mayo Clinic Algorithm and the AASM advice.

Dopamine agonists are now relegated to END of LIFE scenarios. That's how serious augmentation and ICD now are.

If the patch was working for you- you would not need to be taking tramadol, temazapam, ibuprofen and tylenol.

You are 70. You should start getting off Neupro now. If you stay on it- the withdrawal will become more and more difficult.

Please listen to the advice you have been given.

See a new doctor and get off Neupro.

[Doped in reply to Joolsg]

I'm intrigued by the good doctor and his priceless last comment on the key to getting a good night's sleep, just relax! Anyone who's experienced severe rls will know this is impossible and only achievable once the rls and is eliminated. He is however correct in his condemnation of Neuro as a treatment for rls, I'm in my 9th month of withdrawal from this evil drug, I'm going very slowly but bit by bit I'm getting there, all my dat time symptoms have vanished although the night timevis still very persistent and problematic.

[Joolsg in reply to Doped]

I absolutely agree. Unless your RLS is properly controlled it is IMPOSSIBLE to relax.I loathe the Sleep Hygiene recommendations as well. If you have severe RLS- it usually follows the dopamine cycle and is worse between 7pm and 5/6am the next morning.

Many people therefore get their best sleep between 6am and noon. I tell everyone with Severe RLS to sleep whenever and wherever they can.

[Doped in reply to Joolsg]

I can only laugh at the Sleep Hygiene recommendations, don't they suggest getting a good night's sleep and going to bed and getting up at the same time every day, WHAT!!!

[Joolsg in reply to Doped]

Yup. Even now I have zero RLS, my internal body clock has remained stuck to my previous regime.I can never fall asleep before 1am. I get up after 10am.

But as I'm retired- it's fine. I've always been a night owl, from teenage years onwards.

[Birdland in reply to Doped]

I also have to laugh when I see recommendations of meditation to calm RLS. How in the heck are you supposed to sit still long enough to meditate! I don’t think one can meditate successfully while pacing the floor.

[Jumpey in reply to Birdland]

It is indeed possible to meditate whilst walking.It's really helpful and calming .

[Birdland in reply to Jumpey]

But can it calm jumpy legs enough to lay down?

[Jumpey in reply to Birdland]

It doesn't eliminate RLS symptoms. But it calms the mind so it's easier to cope.

[maribarosay in reply to Birdland]

Yes, that’s the whole aim. I can lay there with still legs. Then I take a temazepam when I’m ready to sleep.

[Doped in reply to Birdland]

Yes, being still while simultaneously jumping around sounds like quite the trick.

[Optidad in reply to Birdland]

A screenshot of various walking meditations and mindfulness exercises on youtube . I gind them very beneficial .

List of youtube videos

[Birdland in reply to Optidad]

Do you find them beneficial in calming RLS enough to lay down? That would be a great thing.

[maribarosay in reply to Birdland]

Yes. 80% of the time. I have to stick with a strict bedtime schedule. But things can go south. Then I’m taking Magnesium, gapapentin, Tylenol, IBU800 and/ or a hot shower. Every night is an adventure.

[maribarosay in reply to Birdland]

yes. Most nights. Stay with a sleep schedule that works for you.

[maribarosay in reply to Joolsg]

I have finally found something that works. I’m seeing a neurologist snd a regular doctor.

[Joolsg in reply to maribarosay]

You have been badly advised.6mg Rotigitone is above FDA max.

Soon your RLS will become extremely severe and you won't be able to sit still day OR night.

So please be prepared.

Have a GOOD, knowledgeable doctor ready and at hand.

[maribarosay in reply to Joolsg]

I need them all. We’ve tried multiple different medications. This works for me.

[Joolsg in reply to maribarosay]

For now maybe. But as we have advised you before the dose is way too high and it will worsen your RLS in weeks/months. Maximum time 1 year to 18 months. As soon as it worsens DO NOT increase dose. That's when you switch to a knowledgeable doctor and get off it.

[Typicallygaslit]

I’m the last person to condemn benzodiazepines but 30 mg of Temazepam is a huge dose, in the UK they won’t give me more than 10 (in lieu of Zopiclone) and 20 has been the maximum in the past in another country (when I needed a break from Zopiclone). Yes it does help a bit along with Tramadol which should also put you to sleep but it’s all just fighting the neuropatch! There is literally no sense in this. You don’t even know what precise level of RLS you have with this regime.