Restless Leg Syndrome Relief

[amdrew_m]

Hello I am new to the HealthUnlocked... I have had RLS for as long as I can remember (I am 38) and have tried all the suggested lifestyle changes and countless self help treatments (none of which appeared to provide any respite apart from getting to bed very early). We now have a new born baby and attempting an early night is out of my control. For the last 6 months I have taken Ropinirole 0.5mg and have had complete relief from the RLS; from the first night of taking the medication the symptoms were cured completely. I take the tablet at about 8.00pm, if I forget to take the medication the RLS returns that same night although if I then take medication it takes an hour or so to provide relief. Also if I wake early in the morning (4 ish) and don’t drop off again I can start to feel twinges of the RLS.

[LotteM]

Hi Amdrew, I am happy for you. You will need good sleep and quiet legs with a you g baby. Congrats, by the way.

Please inform yourself about ropinirole and dopamine agonists (DA) in general. Not to scare you, but to inform yourself and be prepared. Ropinirole or DA are iften effective for a long time. Key is to keep the dose low. If at some point, sooner or later, you need to increase, be very VERY wary. It may be the upbeat to “augmentation”. This is when the medicines ‘feeds’ the disease and makes it worse. Augmentation criteria are when symptoms start earlier in the day, return already at the end of the night, spread to other body parts or ... (forgot the 4th one). Use the search button to inform yourself about augmentation. But don’t be scared; your current effective dose is fairly low and it may last very long, some people report 15+ years of effectiveness. Just be pre-warned. Also for side effects, mainly sudden sleepiness and compulsive behaviour.

Enjoy your quiet legs and above all your new child. Don’t worry about the warnings, but also don’t forget them.

[amdrew_m in reply to LotteM]

Thank you LotteM

[Parminter]

Hello Andrew, and welcome.

You could ask for a Neupro Patch, which will cover you for a longer period and be slower to cause augmentation.

Strive not to increase your dose of any dopamine agonist, rather add an opioid or pregabalin in low doses. Google 'RLS and augmentation'.

Google 'Drugs for RLS'.

It is very important to check your ferritin levels, which should be 100 or more.

Google 'RLS and ferritin levels'.

It seems you have familial RLS, which means you have the the genetics for it, and it will be with you forever.

Google 'the genetics of RLS'.

Therefore you need to read, read, read, until you have a very firm handle on the thing, as you will probably have to educate your doctors most of the time - the vast majority of them are clueless, so we have to be. They pop out dopamine agonists like candy, because the drug reps have told them it is safe - it is not. Google 'dopamine agonists side-effects'.

Keep a record of all the scientific papers that are germane, so that if necessary you can print them out and take them to your doctor. Doctors will ignore anecdotes and chit-chat, but they cannot ignore science.

See you soon.

[amdrew_m in reply to Parminter]

Many thanks Parminter

[Allyp69]

Are you living in UK? TV programme tonight at 21.00 about RLS. What are the side effects of the medication?? Glad it works for you but am reluctant to use prescription drugs as don't have RLS every night.

[Pam34 in reply to Allyp69]

Don’t hold your breath about the TV program! Let’s hope it proves me wrong....

[Allyp69 in reply to Pam34]

Agree .. not expecting a lot but other people need to be aware of the condition....just wary of taking medication with long term side effects. Would like to know the actual cause of RLS...

[kika82 in reply to Allyp69]

Which channel pls??

I found out about my RLS at a tv program years ago and was the key for me to understand it and name it to doctors. It’s when I finally found a great neurologist who checked my ferritin by the time and I could start to have more control of it.

Cheers

[Allyp69 in reply to kika82]

Channel 5

[kika82 in reply to Allyp69]

Thank you

[davidofqwerty]

I was diagnosed with RLS when I was 20. And I've had the extreme version of it which was also in my arms and neck. I'm now 40 and do not suffer from it any more because of a tablet called subutex which is used for heroin withdrawal in addicts. I started taking them 3 years ago and am currently taking 16mg per day. Within 35 minutes of taking it for the first time the RLS completely disappeared. I stopped taking them after 18 months and within 48hrs of stopping them the RLS returned with vengence, so 2 days later i started taking them again and again within 35 mins it completely stopped again and I'm still taking them today. I honestly believe the subutex saved my life.

[Ciduoc]

When I first started taking Ropinerole, I, too, found relief. But eventually Ropinerole will cause "augmentation " and your rls will get worse. Because of augmentation, Ropinerole is not used anymore as a first line treatment. Augmentation is recognized as a very coomon effect of Ropinerole. My augmentation took years to develop. I am now on Gabapentin, which does not cause augmentation. May I suggest that you talk with a neurologist/ sleep doctor?