Changed symptoms

[TJRN1959]

I’ve had PLMS for years, kicking out in my sleep every 20 seconds for the first hour or so. It has only ever happened whilst asleep, but last night for the first time ever it was happening as I lay in bed wide awake. I’ve seen various medics over the years and tried different drugs, but never found anything that really worked for me. Part of me wants to shrug off this new manifestation as just one of those odd things, but part of me is curious to know if the change is significant, meriting further investigation. Does anyone have experience of sleeping kicks becoming waking kicks? Thanks.

[Madlegs1]

More than a Hypnic jerk?

[TJRN1959 in reply to Madlegs1]

Oh yes, more than a Hypnic jerk. It was my usual kick (I’ve seen video of that) every 20 seconds over a sustained period of about 30 minutes, and I was wide awake. I even went downstairs and lay on the sofa so as not to disturb the Mrs, and it kept happening there too.

[Hidden in reply to TJRN1959]

I don't know if this helps.

In the late 1980's I had PLMS, the only reason I knew was because my wife (of that time) complained about me kicking her. I'd never heard of PLMS then so just thought it was just another aspect of my wife's personality disorder.

Subsequently, I think the PLMS must have disappeared because no one else since who's shared a bed with me have ever said anything.

Between 2000 and 2007 I did experience some vague symptoms during the evening and eventually realised this might be RLS. It didn't however bother me much and as far as I knew there was no effective treatment. I had heard that quinine might help, hut never tried it. Besides which drinking 20 liters of tonic water a day would have been an expense and as my wife (of the time) suffered attention deficit disorder and had a major hoarding problem, there would have been nowhere in the house to keep the bottles. Some days I couldn't get in the door myself.

By 2009 however the RLS got really bad, so much that it was preventing me from getting to sleep, every night, seven days a week for months. I can't recall how much sleep I actually got, but it was terrible.

My GP referred me to a neurologist who prescribed Pramipexole.

My symptoms weren't just creepy feelings and the urge to move, I did have involuntary movements which consisted mainly of my right leg "kicking" when I was trying to sleep.. My wife (of the time) luckily didn't pay any attention to it. She couldn't pay attention to anything really.

Time passed and I managed to declutter the house, out went all the hoarded junk, (and the wife of the time). I discovered the front bedroom had a window, (with a view) and the downstairs loo had a leak.

2012 and the RLS became severe again, couldn't get to sleep because of involuntary movements. i did experience these before 2012, but this was only when I forgot to take my Pramipexole. I saw a neurologist again, a Russian. We did discuss if these involuntary movements were PLMD or not. You can get PLM Disorder when awake. However the leg movements weren't quite like the PLMS movements I'd seen in a video.

I was impressed by the Russian.

If I recall rightly, it was also about then that the movements started in my abdomen and arms, and earlier in the day. I didn't realise that this was the start of augmentation. My partner ( of the time) thought it was nerves, but I think that was because she was a "psychological practitioner". I didn't trust her judgment anyway, particularly when I realised she was more in need of therapy than her clients!

To this day when I have an RLS episode, I describe it as "kicking" and " twitching". I have no control over this and it only stops when I move.

My wife ( of this time) rarely notices, she falls asleep before me and talks in her sleep, sometimes, ( in Russian).

I am impressed by the Russians.

So - - - You can have PLM when awake, but you can also have actual involuntary movements with RLS. They may be similar. The other thing I believe, is that 80% of RLS sufferers get PLMS, but to get PLMS without RLS is rare.

This probably leaves you more confused than enlightened. I have read that the treatment for RLS and PLMS is more or less the same, but some medications are slightly better for one and some for the other.

Does this help?

[Pollyzzzzz]

Morning. I have had restless leg for about 15 years and for the last 12 months I have had jerk/kicks I get them as I'm dropping off to sleep but they are now waking me up in the morning. It is severe now happening every morning and is relentless, driving me to get up, my legs are aching and heavy, is this part of my restless leg or a different problem?

[Hidden in reply to Pollyzzzzz]

I get jerks kicks twitches as part of RLS, they get considerably worse if I forget to take my Pramipexole so I know it's RLS and it's been like that for years.so it may be part of your restless legs getting worse.

I see it's also happening in the morning as well as evening. Has it spread to your arms or anywhere else?

If you're taking any medication, it might be time for a review. Are you still on Ropinirole?

You might check if anything else has changed recently which might have triggered this, other medicines you've started taking or anaemia for example.

[Pollyzzzzz in reply to Hidden]

I am on Gabapentin, 400mg taken at about 6pm. My arms are not affected.

[Hidden in reply to Pollyzzzzz]

That's reassuring in that it doesn't sound like augmentation.

It's only an opinion, but I get twitches in the morning sometimes, it is RLS, for sure, in my case so I think it's that for you too.

Again, only an opinion, but you might try taking the Gabapentin later, I take it at 9pm. That ways it's at its highest level in my blood when i go to bed and will still be present in the morning. i take 300mg at night. The "half life" of Gabapentin is about 6 hours. In very simple terms that means at about 11pm I have 300mg in my blood, at 5 am, 150mg, at 11 am 75 mg. (NOT exactly, just to illustrate the point).

If you took yours at 9pm instead of 6pm you'd still have 100mg left at 11 am instead of 100mg at 8 am.

I actually take 600mg Gabapentin a day, 300mg in the morning and 300 at night, This is because I also take it for nerve pain, which can be all day.

The maximum.daily dose is much higher, but doesn't come without side effects. 900mg a daty, I hear, is a reasonable amount for RLS