Is there anyone who is pleased with there meds for rls,does anyone get good nights sleep 90percent of the time, x
Is any one happy: Is there anyone who... - Restless Legs Syn...
Is any one happy
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beady3
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59 Replies
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Hi. I am on 2 Tramadol 2 x daily and one Requip XL2mg (cut down from 4mg last year) and not doing too bad at the moment. Some breakthrough periods but manageable. About September last year I was having a lot of problems with my meds and got my GP to change me to this routine. Long may it last!!!! Hope you find some relief.
Nope!
I rather manage without and what I do take doesn't work all the time or effective enough when it does 
Since changing to Ropinirole 0.25mg 3 times a day not much relief doctor up the dose to 2x0.25mg 3 times a day no pain, great. Seeing sleep specialist next week, with or without meds don,t sleep very well
No not at all impressed with the way my RLS has been managed either by my GP or the Consultants l have been referred to.
I had classic RLS in the legs only, that was until my GP prescribed Co - Careldopa. It augmented even on a very low dose. My RLS is a million times worse now and pretty much whole body. I was not warned of the possibility of augmentation. My GP did not recognise it when l saw him with the classic signs of it. Why did he prescribe this drug when he clearly did not fully understand it?
In an attempt to undo the damage caused, I have been given Clonazepam, Ropinarole, Gabapentin and the NeuroPatch. I cannot seem to tolerate any of them. When l ask why l am being given more dopamine agonist Meds, when the Co-Careldopa caused so much trouble, l get fobbed off.
In the end l said l would not take this stuff again, neither the GP or Consultant would even discuss an opioid based alternative. They insist that l must explore all the so called tried and tested Meds first!
I manage as best l can with Magnesium supplements, oil and Vitamins.
Do l sleep well, no not at all. Although l would never begrudge any fellow RLS sufferer a solution, it does confuse me when others say they are helped with things such as Tramadol, Targinact and other forms of Oxycodone.
I do wonder why some GP's are happy to offer this, whilst others including my own will not entertain it?
Well legsandmore I liked your story of what has happened to you,they put me on Requip Xl started with 2mg and in the end was on 8mg my legs used to just buckle under me and the pain was awful ,next doc said why am I on such a high does when you don't know you think the doc does joke
@cfall. RELAXIS PAD is the answer. The most Requip I took was 3.0 mg. I swear it was making me crazy. I was having hallucinations, people were following or so I thought. It wasn't a man in a white coat but a white VW bug parked by my house. The carpet was 3-D and the threads moving. This was all from the drugs. I had balance problems. That is all gone. I sleep normally now.
Check it out. The thalamus is responsible for send false messages to the legs. The good news is the pad helps to re-train the thalamus and get you back to normal. Look into. The pad is available in the US now and will be in the UK this year. Claudine Relaxis.com
It seems to be trial a error. Some gp's and cosultants have no idea about the syndrome because before a more recent date they were not taught about it during their training. Other gp's will have learnt about it and be comfortable. With some consultatants theyare not worth going to either.
Just keep on asking, insisting even, or ask to see someone else. They simply shouldn't be able to say no.... good luck.
My doctor gave me the Requip XL (slow release) because I had tried it in Cyprus (without prescription) by default. I was on the standard version and could only get the XL. Not many GP's give it in the UK as I don't think it's actually on the list for treatment only the standard version. (I may be wrong of course). When she prescribed it she said she would "get her hands slapped" but as I had such excellent results she agreed to prescribe it for me. That was about 3 years ago now. I did reduce from 4mg to 2mg along with Tramadol. I believe that augmentation is much less on the slow release but someone on here will confirm that.
HA HA beady now that is a question ,I don't think many of us are very happy with meds what with augmentation or side effects there's always something, hope you get sorted ,,,big hug
beady you are having a laugh !!!! don't think any of us are happy with our (meds) as to sleeping (whats that)??? not had a good nights kip for yonks!!! on a lighter note I wonder how things are with pippins?? don't know if I should ask this but do you know her address would like to send get well card. T,T.F.N STANx
Sorry Stan don't know address hope she had opp because of docs strike, I was going to go back to docs with rls and thought is I worth it,I will stick with what I have xx
beady I forgot about the docs going on strike !! yes it makes sense to stick if your getting some relief many thanks for getting back stanx
Am I allowed to say I am happy and do sleep well these days? I do get little warning reminders when I go to bed, so don't feel I can come off the meds any more than I have, and I also get a bit of PLMD, but I've not missed any sleep since starting the Magnesium. It's like the parable of the lucky git (to quote Del Boy), I know...
Hi Beady,
I can say that I am very happy with my medication which is a slow release Ropinrole product in so much as it suppresses my RLS providing that I religiously take it at the same time each day. I do believe that it has caused me to gain weight (about 15 pounds over the last year) through generally making me less energetic but this is a small price to pay to no longer be up walking the house each night, doing single leg squats etc. However, I would rather not be taking any medication and I am going to explore the Relaxis pad that I have seen referred to elsewhere on this site.
I get a good night's sleep about 75% of the time. I take 300mg of gabapentin a few hours before bedtime and a whole lot of supplements during the day, including 1,000mg magnesium. I want to note, however, that I go to bed around 1:00am to 2:00am and sleep till 10:30am to 11:00am. Going to bed earlier doesn't seem to work. I'm up briefly a couple of times during the night (to pee or snack), but can usually get back to sleep. I'm extremely careful with my diet - if I'm not, I don't sleep well (too many sweets, fatty foods, chocolate - you probably know the drill). Exercise also helps - I walk the dog about a mile a day.
This is obviously not an ideal schedule but I do feel rested and energetic around 75% of the time and I give thanks for that.
Yep, 90% of the time I sleep well and am happy with my med. Supplements didn't work and no deficiencies detected. Gabapentin stopped working. Dopamine agonists augmented and no longer work. I am on 100mg Tramadol and initially I had insomnia (which was better than RLS!) but now sleep well. Just hope it continues to work!!! GP had little knowledge and sent me to specialist who advised on drugs but told me to take responsibility and read, use forums and learn. My GP then allowed me to take control - I tell him what I want and why and he has agreed (so far).
Good luck.
hi john I have asked my doc for tramadol he refused!!! said as it was a classified drug??? how are you getting yours??? last time I saw him I told him I was unhappy with what I am taking asked for diff med as I believed I was going into augmentation got nowhere !!! regards stan
Before i had spinal reconstruction, I would have had to avoid food triggers. After the operation (opioid withdrawal ) I was given - quinine sulphate - ok for a few months. Then Pramixepole .188- ok for a year. Then Pain Dr offered Tramadol which I took for 3 days - didn't sleep a wink. Changed to Oxycontin 10 - similar story but have persisted - virtually no restless legs ,but some sleep issues- used tiny dose of Halcion (not available in UK) which got me over the sleep threshold. Also started taking magnesium 250-H+B at night- have slept well the last two nights (still have pee visits- but get back to sleep ) Practicing Mindfulness at this point is very helpful.
There seems to be a huge cultural block regarding opiates use - tied up with a massive ignorance about addiction, dependency and tolerence. Genuine responsible use of these medications is severely constrained by this ignorance. I am probably only allowed opioids due to my pain issues (osteoarthritis ) and age (69)
Regarding medical knowledge and management of RLS-well - we have all been through that circus. As individuals it is up to us to thoroughly research our own individual situations -:there are very good resources on the internet. The biggest challenge is to find compliant and understanding doctors who will help. EARLS could perhaps have an input here in setting up an informal register of Doctors or Neurologists who are sympathetic to RLS.
Well done Beady for bringing this up.
Cheers.
Madlegs, I totally agree with you. There is a difference between tolerance and addiction, and it is a subject we discuss every day in many groups.
Hi Beady
That's an interesting question. My answer is no but I have found that if I can get 6 hours then I am satisfied, Having come off Neupro, the last of the dopamine agonists for me to try, I an now on 1800mg of Gabapentin plus 200mg of tramulief, I take 300mg of Gabapentin as I go to bed plus 1.25mg of clonazepam. My head hits the pillow and I am asleep until nature calls. If it is early enough in the morning I can get a couple of hours more. Today I woke at 5 and then each time I drifted off either RLS or PLMD woke me. I felt so tired and groggy but after a shower I revived. I want to try to keep the meds as they are until I see my neurologist in July but we shall see!
May I at thanks to you all for your answers, which tells me I will not be going to the docs so he can up my meds and make it worse, I will have 5 mins kip if had rough night I expect that will be tonight x
I had been happy for 7 years and slept well taking Pramipexole until I augmented on it 2 months ago!
What 90% sleep, can't remember the last time I had that....!!! I am blessed if I get 4/5 hours quality, deep sleep a night, and that would be great every night, but sadly I don't.
Beady I reply to your enquiry about medications.The answer is a resounding no.I have just had several days in which absolutely nothing worked and am dreading a repeat. I have been pondering as to what precipitated it. Not that it is ever alleviated completely. The lack of sleep I attribute to the Tramadol but one would at least expect some alleviation.
Dear Birdie It is definitely the Tramadol I have gone as many as 3hights without sleep and had no desire to do so.It is hard to believe ,however it is a synthetic opiate so goodness knows what else it has in it.Asyou know all these things have different reactions on different people.When I ventilated to my neurologist he just blinked at me so I knew he was aware of this. Manifestation he has told me I am a challenging case-probably says this to us all to encourage us.By the way in desperation last night I tried the bis glyc(it would be helpful to know how to pronounce it but lo I had the first nights sleep in many weeks.I was a bit dubious at trying it as I knew my blood was all normal and am not sure how often one should imbibe it.It could have been a swing back but what ever it was it was a bonus.I did not even hear my sons Maine Coon who is prone to caterwauling every morning at 5am.
• in reply toRetren
Hi Retren. You can't see me but I'm doing a happy dance. You are lucky number 8 on this forum who has gotten complete relief for one night with one capsule of iron bis-glycinate. Yah!!!! Eight people in one month's time that has gotten miraculous relief. Now it's time to call your cardiologist and say "Listen doc, you know my medical history, you know I had a heart attack because of pain killers and you won't prescribe them for me anymore, will you let me take one 25mg tablet of iron-bisglycinate a day (night) since it seems to be helping my RLS." [TEXT DELETED] Iron is a gift from above. Just today I read a study which showed that iron gave autistic children (no RLS) a better night's sleep. It didn't cure their autism but what a blessing...a peaceful night's sleep. The researchers think it was because the kids were on the low side of normal in terms of ferritin. I think it's because iron is nature's finest sleeping pill, for anyone, not just people with RLS, but we especially need it. I assume the researchers gave the kids that nasty ferrous sulfate type iron but they're kids and their stomachs can pulverize that iron and break it down and since their iron stores weren't way high it entered their bloodstream and they got a good night's sleep. We who are beyond our teen years need to take a very broken down form of iron. Remember, talk to your doctor, do not let anyone demonize iron. It worked once...it will work, again, and again and forever, for everyone.
nightdancer• in reply to
Well, that is just rude and not supportive, "HIDDEN". There are MANY reasons for some people not to take iron, and you are not the be all and end all on information. VERY rude. That was not nice at all, and certainly not supportive at all.
I have typed your code name several times and the iPad is not behaving.Bisglick could you tell me how much bisglycinate to take?I took 100 mgms and a last night but seems to be totally ineffective to -nighti am afraid of over dosing.as my blood levels are normal.and I once got too much iron and it was very unpleasant.I have the greatest admiration for my fellow sufferers plowing along under the greatest odds and still managing to keep on trying for an answer.to this singularly nasty disease.
Retren. Be carefull with the iron as you have found out you can have to much, our chemist would not serve me will iron as my blood is ok and because someone says it works that's not for us all ,keep away X
• in reply tobeady3
Beady, even though I recommend iron, I consistently tell people that are using it for relief that they must always look for a BETTER way than the iron. And I know in my heart that there is a better way than iron. And even if it takes the rest of my life I will find alternatives to the iron. Jumpey tried the iron but it only gave her four hours of relief and she suspects her calcium channel blocker might be making her RLS worse than it has to be. And I told her yes, it very well might be. Maybe if you switch out the blocker you might not need the iron. I would love to see the day that no one needs to take iron. Since your chemist refused you iron am I wrong in assuming it is because you are taking some kind of medication for heart such as statins or calcium channel blockers? Could any of these meds be making your RLS worse than it has to be?
beady3• in reply to
Well Hiden I am not going to have a slanging match with you but you seem to be a person that knows so much bet you don't go to the doctors as you seem to know it all. Now you are on about Autisum which is something you read I expect We write on this forum to help one another not cause a lot of unpleasantness ,pleasant dreams
Thank you Birdie and also bisglyc .it is not working to-night .I think I have a constitution which rejects all foreign substances.
How RUDE of the member to tell people "Do NOT listen to Beady "!!!!!!! We are all equal, information, suggestions are made and it is up to individual members to decide what they take on board not for you to dictate. How narcissistic.
To answer Beady's original question about meds, I am quite happy with MINE. I have to take opiates for several conditions. But, the pain meds take care of my RLS 90% of the time, I only have 1 or 2 bad nights a month. I have been taking morphine and hydrocodone (not available in UK) for 12 yrs, and we rotate meds so as not to build up a tolerance. I have tried every med, every kind of IRON, and so on, and in the end the pain meds are the only thing that help me. We are reducing the dose by a few mgs every month now to see what I can tolerate. My 88 yr old mother just had a complete knee replacement, so my back and brain are going to get a workout, and so is she for that matter. They are sending her right home, and it is going to be a lot of work, she has been in the hospital all week. But, if I did not have my pain meds, I could not help myself, never mind her and this has not been a smooth operation at all. So, I am grateful for my GP who listens to me, and has listened for the last 15 yrs. 
I WAS on tramadol years back, did not help my regular pain enough, but was brilliant for my RLS. That was when we went to morphine after 4 back surgeries and 3 neck surgeries. I know pain meds are not for everyone, but they do help a LOT of people who are at the ned of their rope. So, yes, I am very happy with my pain meds, and other meds I have to take for other things. In the end it all trial and error. This is what helps ME, plus my heating pads. Some people like cold better, heat works better for me. OF course, everyone is different, as we say every day. What works for one, does not necessarily work for the next person. IT is all very individual.
• in reply tonightdancer
I cannot believe you are endorsing morphine and hydrocodone over iron, magnesium and lifestyle changes. Misery wants company, but that's sick. I think of everyone on here like my own kid, I want better for everyone than I got it. I never want my kid taking the things you are. I never want anyone on this forum going down your road and that's what you should be telling people. Don't follow in my footsteps, pave a better road for yourselves. My brother loves to tell a joke about a man who had terrible headaches every single day that didn't respond to medication and the doctors told him that they have found that in situations such as his the headaches are usually tied in with the testicles and removal of them provides complete relief. Finally the man couldn't stand it any longer and had his testicles removed. The very next day his headaches were gone. He was so pleased he decided to treat himself to a new, tailor made suit. He went to his local tailor. The tailor looks at him and says "you have an 18 inch neck." The man says yes but how did you know. The tailor says "listen, I've been doing this for forty years, I know my stuff." Then the tailor tells him his chest is a 48 and his waist is a 36. The man says that is just unbelievable, you are right on the mark. Finally the tailor tells the man his inseam is 36. And the man says no I'm sorry, it's a 35. The tailor says listen, I know my stuff, if you wear pants with a 35" inseam it will squeeze your testicles and you will get terrible headaches.
The moral of the story is do not cut off your testicles when all you need to do is wear one size larger pants.
I am happy with the Neupro patch, it works really well 95 %of the time, when i start to have RLS just mildly I take a short break from the patch and then it works well again for months. I use painkillers during the break and I have remained on the lowest dose for years .,Pipps x
Oh dear, why is there this bad feeling amongst some of you? Surely with all our suffering, all we want is to try and HELP each other? Please, stop this bad feeling....
Nope an nope...four hours a night and atleast four pain eps a week...last week i had six pain eps in two n a half days...
Do you take any meds
Yes i take olanzapine... mirtazapine... deralin...carbaser...lyrica...neupro patch atm...also iron...magnesium..vitamin d
Gosh you can't say you are not trying ,after taking all those tabs don't you still get any relief I am on Tramodol but it's hit and miss if I get a good night,I think about going back to docs but what the hell is he going to give me ,because you start again with the sick feeling dizzy spells x
Unfortunately because im a recovering addict i can not take opiates or benzos...i am pain free atm!!! But i live with anxiety over wen the next pain ep will be...i feel like such a weakling complaining over rls because wen i think of rls i think of slightly irratated legs...nothing to the extreme that i, and by the looks of it many ppl deal with on a day to day sometimes hour to hour basis...i hv honestly never experienced pain like i get
Yes that's what my Legs are like v v painful ,you could stab them but of course you don't ,you just keep rubbing moving anything and that goes on for hours ,so you see you are one of many x
@cfall reply. I want to tell you I am happy because my RLS chas stopped. It's been about three weeks now. Please hold onto the news that the Relaxis Pad is going to come to the UK. The details are still being worked out. Don't give up hope.
The hardest thing was getting off Ropenerole and Nightime Tylenol. It was not easy and you should do it slowly with Doctor's. I was awake for three nights and it was awful. Then with the use of the Relaxis Pad I was soon sleeping through the night with no pills. Of course other medical condition can interfere but sleep, good sleep is possible.
Call or ask your doctor to check out the Relaxis Pad , the only medical devise approved by the FDA in the US. Google Relaxis.com and read about it. Contact customer service and talk to Megan or Carl. I am so grateful to them and the amount of time they took so I wold be successful . Claudine
It is still not approved for insurance coverage on either side of the pond, so it must be rented or bought, and it is not cheap, to be really honest. So, it is not readily available for people who cannot shell out 1,000 bucks, or so. But, am always interested in hearing stories about it. Not that many people have tried it yet.......
California. I bought mine directly for I think $600. I would have pad five times that to get the relief I've gotten. It's amazing. Claudine
Can you please tell me how the relaxis pad works thanks
@cfall. Relaxis.com can do a better job but briefly, it is a medial devise approved by the FDA in the US. It is smaller than the size of a pillow case. You plug it in and use for 1 or 2 sessions of 35 minutes. It automatically shuts off. Inside the half-inch pad are 4 little motors that vibrate at a specific rate to "communicate" to the thalamus which is where the R L get their Neuro-stimulation to move. There is a control unit and the user sets the strength. (1-7 or 8). I found that between 1.7 and 2.0 was best for me. It' not real noisy and the vibration is mild, even soothing. I used it faithfully. Oh. I put it under my hips and thighs. Before it really lessened the leg movements, I needed to get off of Ropinerole. Due to the nature of this pill it was still "in" my system for quite a while. However, I got relief in less than 2 wks and I have been symptom free for one month. I am ecstatic!
I guess that wasn't short. The real "how to" would have to be explained by a medical scientist. My explanation is from the view point of a happy user.
Now that my legs got the message, I do not need to use the pad daily.
I hope this answers your question. Claudine California
Just remember, the pad is only for people with Primary RLS. and you have to have a doctor's prescription to get one.
1mg ropinerole taken about 1-2 hours before symptoms usually start works well for me.
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