Hi guys i havent been on here for ages. I reduced ropinirole to .50 taking 2 30ml codeine and was stable for a good while but the rls came back which i knew it would, ive know dropped to 38 as down to 25 was to hard and augmentation was bad straight away, sleeps poor again but after a good spell without rls i have hope that when i get off this horrible drug ill be ok with just gabapentin. I still have no help from any Dr or specialist but i know there isnt much anyone can do until im clear of DAs, just looking fot a second opinion on this to set my mind at ease please?
I know id spoke to a few about creatine and ive been taking it again while my rls was more or less gone so i can rule that out and hope the info helps others.
One thing thats concerning me is ive had a few low heart rate alerts on my watch its been to 37 is this something to worry about, also i have muscle spasms back where as i fall asleep my arm jerks and bashes againt the side of my bed which is worrying ill hit my girlfriend.
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RLSAndy
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Yes I would be concerned. It is most likely from your ropinirole withdrawal. I would slow it down even more than you are doing by getting an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. At the dose you are on now if you continue getting low heart rates then go back up before reducing. You may also need to see your doctor.
so i was stable at .50 for six weeks and reduced by .12 imo this is a pretty low reduction? The low heart rates have been staggered and mainly while i was stable and not reducing cruising on .50 so not sure it is that, i have been using cannabis oil along side ropinirole, pregabalin and codeine which i feel may be that, im stopping it to see but my Drs will not help me and after being advised on here about a place in my city called the Barberry in Birmingham (uk) im told it could be a 12 month wait.
I suggest you ask for a referral urgently to one of the few knowledgeable neurologists and they may be able to prescribe something to get you through the last stage of withdrawal without lowering your RHR.Most opioids increase HR, so that would be a possibility.
Well done for getting this far.
Withdrawal causes VIOLENT leg and arm jerks, so that's normal.
The arm jerks have only just come back after being stable and sitting at .50 with out any reductions, but even with the .12.5 reduction they have come back bad. No one will help me, Drs are literally pathetic, beyond useless, a nhs clinic have said 6/12 months and the Dr that everyone recommended on here in Leicester i think it may be Jose said he cant prescribe opioids so im having to weigh up if i can afford to see him privately if the end answer is to simply get off the DAs.
I need to look into if codeine raise or lower heart rate to see if it is that, but my concern is if it is them and i stop augmentation will get even worse.
Ive just done some searching and Dr Bagery is at the Barberry which i am told can be a 12 month wait and thats if im accepted. When I spoke to the receptionist there yesterday to chase my referral i was told its awaiting approval and to call back next week, they dont fast track patients either. My Dr is telling me 12 months and messed up my referral in the first place.
I can get Codeine but im worried about the side effects and how much longer i need to take them for, then if its them making my heart rate low in my sleep. My regular Dr will just say stop codeine and that will put me in a worse position.
For Manchester Renaul and D4nc1ngqu33m both have doctors that provided opioids but I don't know if they are otherwise knowledgeable about RLS. You can message them to get the names and their experience with them. If you do please let me know too.
Dr Roswell Martin at Winfield Hospital in Gloucester will prescribe opioids.
Salford Royal Hospital (based out of Cheadle (NW England -near Manchester) - Ced60 paid privately and saw Dr Christopher Murphy as did phantom388 and HipHop1972 and were pleased with him. He is a Consultant Neurologist and well up on RLS. Runs a Sleep Clinic. Not NHS I believe. He will prescribe opioids.
Professor Evangelou at the Park hospital in Nottingham - not knowledgeable but when Zenawarrior73 showed him my advice he said that's very solid advice, don't know if will prescribe opioids.
I have low heart beat too. Mine goes down to 35 -37 bpm every night, usually between about 3 and 5 am. Dr was really worried about prescribing methadone and monitored me carefully but all is good.
I first noticed it when I went on gabapentin and codeine. I stopped gabapentin, then swapped codeine for a longer acting opioid, methadone, and have had the low heart rate ever since. So for me I think it id caused by the opioids. As my body is getting used to the methadone, it is getting better. Lately it has only been dropping to 39-40 instead of 35-36. Still very low, but I am fine and my doctor is not worried about it as long as I am not getting giddy and collapsing. But I think it is why I was getting so sleepy. For the first few months on methadone, every time I ate, as soon as I finished eating I had to lie down and I usly went to sleep. I think my heart rate was so low that when I ate my body was using up all its energy into processing food that it couldn’t put energy into anything else. I’m not a medical expert, but that is my feeling about what was happening!
It’s not quite so bad now, but I can’t eat a big meal. If I eat too much, same thing happens!
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