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Restless Legs Syndrome

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lack of sleep

10 Replies

hi everyone just joined about 2days ago. can anyone tell me what modified repinarole is i have suffered with RLS now for about 2yrs or more (absolutly driving me mad) tried everthing goin went to see a neuro surgeon about 3weeks ago gave me a slow realease cinemet all this did was keep me awake all night (not had a good nights sleep for ages) anyway went back to my GP and she asked me if i wanted to go back on ripinarole at least i got a good nights sleep. i had to start right from the begining again to get to the corect dose (at the moment on requip 0.25mg take 2 at night but not working my RL start about 8.0 in the evening goes of if i get up and do something then about 10ish take my repinarole hoping it will work and make me sleep (but last night i had the worsrt night ever) never shut my eyes this morning im nackered so just want to no what this modified repinarole is

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10 Replies
margaretann profile image
margaretann

i suffer from restless leg syndrome just had my roprinole increased to 2mg my gp said i had to increase it to 4mg at the end of the month not working yet suffering at night up at five in the morning cause my legs will not let me sleep,the doctor has tryed every thing with me ,but he always starts me on a low dosage,getting very fed up ,i was put on diazapam at one time they worked a treat at one time got great sleep,if the roprinole doesn,t work after it s increased ,going to ask gp to put me back on diazapam on a higher doze,my advice to you try taking your roprinole between eight and nine

hi mararetann just found out from another bloger that you can mix your meds to suit yourself apparantly hes been told by his GP that its fine so im going to give it a try.isnt diazapam for depression and very addicted? I no it makes you sleep but i didnt want to go down that road think im goin to experiment with my meds to see what will work, at the moment im on 1mg repinarole at nigh + ive also got some sinemet 125 they are great for RLS but only last for a couple of hrs in the evening when you sit down and relaxed so im goin to experiment to see whats best the repinarole makes me very sleepy so might take this around bed time and the sinemet in the evening RLS dosent bother me in the daytime only at night when relaxed.

Papa1bear profile image
Papa1bear

Hi cally21, first go to Restless Legs Syndrome Foundation on the internet. They have a list of doctors that treat RLS. Typically they are neurologists. Mixing meds yourself is potentially very dangerous, as is second hand info. Sinemet has augmentation problems. My wife was on Requip 1mg eight or nine times a day and it controlled her RLS. Extended release Requip did not work for her. Now she is on Neupro patches, 6mg, that seem to do well. GPs are well meaning but may not be up on all of the latest info. By the way, is your serum ferritin level where it should be? A neurologist that says they are treating RLS will be up on all of this.

in reply toPapa1bear

6mgs, is a bit high a dose, 4mg is supposed to be the max dose, i know some doctors let you go a bit higher, but if and when you have to change meds, its all the harder to come of if the dose is that high, i wouldnt go high than the recomended dose myself

nightdancer profile image
nightdancer

No matter what anyone else says on this site, you have to clear any med changes with your OWN doctor. Most everyone has more physical issues than RLS, so what is good for one person is not always good for the next person. These meds are not anything to take lightly. And, if you do look on the list of doctors on rls.org make sure and read the disclaimer at the bottom of the page. NOT ALL doctors on that list have actually treated RLS, some are "interested" in treating RLS. That is right on the web site, and the disclaimer actually means something there. That is a US web site, not sure where Cally21 is from, though.

in reply tonightdancer

agree with this, your own doctor is the first person to ask really when yuo changing or mixing meds

nightdancer profile image
nightdancer

It is always best to start at the lowest dose especially with the dopamine meds, as augmentation can happen fast. For some people this class of meds does not work at all. So keep that in mind, also. ;)

nightdancer profile image
nightdancer

answered your modified ropinerole question on another post, but it is just the slow release form, which my be better for you. Ropinerole only comes in 2 forms, the regular shorter acting kind and the slow release formula.

thanks nightdancer will make a visit to my GP and ask about the slow release repinarole like i said i dont think my GP is up on this RLS so its still try & erer by the way you get so much conflicking coments you just dont no were you are with the meds. one says you can mix your meds then another says you must consult your GP you dont no were you stand (by the way i live in sheffield england)

nightdancer profile image
nightdancer

You get a lot of different comments about meds,. because everyone has a different experience to some point. But, whatever you do, l your doctor ahs to be aware of it, even if he does not know about RLS that well. We don't know your whole medical history, so in the end, you can read suggestions, do your homework, and talk to your doctor. We do not know what other meds you may be on, so we can't definitely tell you one thing to do, as RLS treatment can become very individual. Most people I know I with RLS need more than one med to control it, some only take one, etc.

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