PLMS sufferer

[Gannet]

RLS symptoms only when asleep. Recent Polysomnography study were very disappointing. "off the wall" were consultants exact words ! Started Neupro (1mg) last week but no sign of improvement yet. If anything, I seem to be more tired during the day. Any comments or advice most welcome.

[nightdancer]

what do you mean by "off the wall"? That part is a little confusing. neupro can take up to 6 wks to "kick in", sometimes longer in some people. It is one of those meds that has to build up, so good luck. One of it's side effects or any dopamine agonist is "daytime sleepiness and tiredness." If you are kicking in your sleep, then technically it is not RLS, but PLMD (periodicleg movement disorder) which happens in your sleep. do you not have any symptoms at all while you are awake? PLMD and RLS do go hand in hand in most cases, but some can just have PLMD. When you tell me what "off the wall" means exactly I might be bale to help better. :o) Did he mean not normal from other people's, and what is normal anyway? :o) And, what, if any, other meds have you tried, and could any of them be triggering your PLMD/RLS. Even some over the counter meds can cause all kinds of sleep disruptions.

[Gannet in reply to nightdancer]

Many thanks. Thankfully I only suffer from PMLS . (Periodic Limb Movement dring Sleep). No systems during the day. Consultant went thru' all the very extensive Study findings and explained that a final numeric number is given to the patient by way of simplifying the numerous results. Anything over 5 confirms a sleep disorder. Majority of sufferers are in a range of 10 to 15. Chronic would be anything above 20. Unfortunately my reading was close to 30. Hence the "off the wall" comment.

A second query that perhaps other users might be able to advise on. I am a member of a leisure centre and would normally use all the facilities including sauna, jacuzzi and steam room. I see that users of Neupro are advised to avoid exposure to such heat. I presume I better do as they say !

Best of luck to all for their advice

[Hidden]

hi, i have used the neupro patch and it does take a while to kick in, as Nightdancer said, it did make me feel tired in the day, but once my system got used to it , that settled down, and wasnt so bad, and it did its job for me, hope that helps you , but remember we are all different with the meds

jean

[Hidden]

Well as usual must be just little me, cause the patch worked almost straight away on me....

[Hidden]

your allways the exception petal.....lol

[Hidden]

I think exposure to heat is supposed to leave a permanent patch mark on your skin for some reason....

[Angierob]

Hi, so sorry to hear you suffer from this horrible condition. I have RLS and PLMS and it got to the point where the PLMS would keep me twitching until the wee hours of the morning. So I went to the doctor who prescribed Requip (Ropinirole). It works a treat for me, although I find that as time goes by, I need to take more of it. I started with .25mg and am now, about two years down the line, up to 3.5mg. The max you can take is 4mg. It can have some pretty severe side effects. Personally, I find it can make me sick if I take it too soon before going to bed, and it tends me make me nauseous quite often. It gives me the occasional nightmare which borders on hallucination. But it's so worth it to be able to sleep at night! I find that eating anything with salt or sugar, or drinking alcohol, after around 7.30 at night will override the Requip though and keep me twitching. (I go to bed around 10.30 or so). They do say that some drugs including Requip can make the symptoms worse. I find though that, once I've taken Requip, I can sleep without any twitching and so far haven't had the problem any earlier in the day.

I've also heard that you need to check your Ferritin levels - they need to be 100 or above - something to do with the dopamine levels in your brain.

Hope this helps, and good luck.

[nightdancer]

A Ferritin level is a simple blood test to see how your body stores iron. For people with RLS, the guideline is at least 50. It is more than just an iron serum test; ferritin level shows how your body stores the iron. So, some people are helped if their Ferritin is low, and they get iron infusions or take iron tabs. BUT, never start taking iron unril you get your levels tested. Iron overload can be very dangerous, so tak to a doctor first before taking anything, even something that "seems" as safe as Iron. Good luck!