Introduction

[Alfsdad86]

Hi all.

I was diagnosed with Periodic Limb Movement Disorder (the hospital diagnosed PLMD but the doctor keeps saying and writing restless legs, even though I don’t have any symptoms when awake, only while asleep) in September after undergoing tests for sleep apnoea. I was initially given pramipexole 88mcg, but this made no difference. I’m now taking ropinerole (requip), currently on 1mg but going up to 2mg.

I’ve noticed a considerable improvement in my daytime symptoms, and my wife is appreciative of my flying arms not hitting her in the face anymore, however I’m finding it really difficult waking up in the morning and have developed really bad sweating during the night. I had a few beers the other night, oh my goodness that was a mistake. Within an hour of taking the medication I had turned into a zombie, couldn’t keep my eyes open nor string together coherent sentences, but went on to have the best nights sleep I probably have ever had.

Anyway, just thought I’d say hi and give a bit of background.

[Stoutfellow]

Yep, what a bind eh? If you have sleep apnoea AND Restless Legs Syndrome! You've had the sleepy days 'cos of the sleep apnoea (relievable by CPAP devices etc) and now the additional saviour of the treatment for the RLS makes you sleepy during the day! Can't flippin' win!

I had similar problems but have been using a CPAP and taking Pramipexole for years with much less sleepiness during the day. There are other treatments available for RLS that can be less sleep-inducing; ask your GP or sleep centre for more advice. Unfortunately I don't think we're ever gonna be as wakeful as the majority of the population.

The beer? Oh dear! I always find red wine to be the worst for RLS but other sufferers each have their own poison (as it were).

My most recent problem was taking some medicines that I don't normally take. I woke up at 3am with an appalling kicking left leg and started behaving as if I was possessed! All random body movements; being a zombie ain't 'alf of it mate!

Hope you make more progress.

[Alfsdad86 in reply to Stoutfellow]

Unfortunately I didn’t get the diagnosis of sleep apnoea, so if I do have it then it’s still untreated. Fortunately I don’t have restless legs while awake, so I don’t have the misery of that. It’s a shame about the alcohol though, i mean I’ve never enjoyed getting drunk, as it were, but I do enjoy a couple now and then. With how it made me feel though I feel I won’t be drinking anymore.

[nightdancer]

Alcohol is a no no for RLSer's or people with PLMD, or both, it blocks the uptake of dopamine to the brain. Yes, mixing it with meds is also not a great idea. SOME doctors just use "restless legs" as a general description, but he really should be writing PLMD, since they ARE different. One question, you said you don't have RLS, and only have the movements in sleep, but you said towards the end of your post that your "daytime symptoms are better". Do you mean side effects of the meds? PLMD interrupts our natural sleep cycles. So, one reason why you are having a hard time in the a.m. is that you are probably not reaching REM sleep, therefore not getting to the restful stage of sleep. Every time our legs move in our sleep, it causes brain arousals.

[Alfsdad86 in reply to nightdancer]

Hi, by daytime symptoms I mean tiredness in the day, it was to the point where I was drifting off while driving. This is why I was being tested for Sleep Apnoea when they said I have PLMD. It did explain a lot. They did say I don’t have sleep apnoea though, which I’m not totally sure about.

I did a 5 night private sleep study that I paid for which had the result of moderate sleep apnoea, I then went on to have an NHS sleep test, which involved one (restless) night with a thing attached to my finger for them to say I didn’t have apnoea and that I did have PLMD. I’ve had no consultation with anyone, just a letter from the hospital stating a diagnosis and medications to trial. I called the doctor who the prescribed the meds over the phone, literally I’ve not seen a single person.

[nightdancer in reply to Alfsdad86]

Very strange that you have not seen a consultant? Oh ok, daytime sleepiness is a common thing with all of us, and dopamine meds will do that more than others. A lot of people have mild apnea, but not enough to have to use a CPAP. I do. Your wife should be able to tell you if you stop breathing, or snore in your sleep. Usually, snoring means apnea in many cases. Am glad you do not have RLS, though!

[bill54321 in reply to Alfsdad86]

You must be your own advocate. Specialist are not in agreement and plain don't know 80% of the time. I am still looking for that 20% that REALLY know? Sorry to lay this on you. But I am a democrat.

[Hidden]

Hi, glad that the Requip is working for your PLMD.

PLMD is closely associated with RLS and I read that 80% of RLS sufferers have PLMD. To have PLMD without RLS is quite rare. The treatment is more or less the same.

I guess part of your sleep study involved a pulse oximeter, on your finger.

This would have tested your oxygen levels and if they didn't fall significantly then you won't need CPAP.

It might have really benefited you to talk to someone about the Requip. They should have made you aware of the potential long term consequences of taking a dopamine agonist, (which is what Ropinirole is).

These include, loss of efficacy, augmentation and Impulse Control Disorder, (ICD). ICD is fairly unusual but the other two are quite common. I hope you have read the information leaflet that comes with your tablets carefully.

To avoid augmentation it's best to keep the dose as low as possible. 4mg is the absolute maximum .