I was posting regularly and lost track and now I have returned.
My mom and her 9 sisters all had restless legs and some on them took Paragoric which you could buy over the counter as long as the druggist kept track and only sold you 3 ounces a week.. I don't think any of them abused the opiate which people have been using for a couple of hundred years until Big Pharma and the U.S. Government decided it was ''habit forming'' instead of us being dependent on it just as we are their concoctions that are less effective and habit forming to a greater extent. Sooner or later we will get back to taking limited amounts of one opiate or another and the large take will stop form big Pharma.
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Windwalker
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I take tow a day of 5/300 Oxycodone and am so jumpy within tow or 3 hours I would like to taje more but the docs are so afraid of the state I can only get 60 pills every 30 days, so I take 7, 300mg Gabapentin, which blurrs my vision along with 4, 2mg ropinirole and the most I sleep at a time is 3 houirs and most times it is only 2 hours. I keep wishing someone would compound a pill that One prescribed pill did the trick, but they keep prescribing Off label drugs so there is no incentive to develope a single drug that is especially for RLS. and drug companies love the off label use and do zero research into the real problem. If I wasn't afraid of the hell I'd surly go to if I took the alternative route to a life of suffering, I wait one day for relife and take the plunge.
Wait... are you taking four 2mg ropinerole pills every day? I.e. a total of eight mg? If so that is way too much ropinerole. You are almost certainly augmenting, which is making your symptoms much worse than they were when you started. If you're really taking 8 mg a day, you need to work with your doctor to substantially reduce or eliminate that medication. It will be pretty rough going, but an opioid can really help get you through that. If you're in the UK, I believe Targinact is an option for you. That is longer lasting than the oxycodone you're now taking, so it may help get you through the night. Good luck.
I am in the USA. There are no good meds for RLS available here and few doctors even think it is a condition worthy of treatment. over 10% of the population has it and we are prescribed off label meds by our general practioners and they usually ask us what we want and if you mention Opiates they usually just say I don't want to deal with the regulatory authorities. Try asperin, maybe that will help or some other Nasid. I have said this before. If the hell I am afraid of going to ,if I end it all, is as certain and worse than the hell I have endured, then I'll wait for some other malady to relieve me of my suffering..
I fear rls optimist is correct and the high dose of ropinerole may be causing your symptoms to be worse than they need to be. At that dose there is also a reasonably high risk of impulse control issues with high incidence of internet shopping, gambling and/or sex addiction etc. In addition there can be problems with sudden onset of sleep which can be very dangerous - particularly when driving (for obvious reasons).
You may ultimately need to go through the deeply unpleasant process of discontinuing this drug.
Windwalker, on what grounds do you make that statement? Even if that is true for the whole population of RLS sufferers, among the selection of people on this forum, augmentation has a high incidence.
I agree with the others, you are having Augmentation taking that high dose of ropinerole, why do you think you are not getting more sleep.? And as Lotte has said on this forum alone many many are/have or gone through Augmentation. On the other groups i belong to on FB not a day goes by without someone going through Augmentation. So, in my opinion Augmentation is quite common. Its one of the biggest side effects from taking a DA that everyone complains about,( altho there are others) on a daily basis, altho most have no idea that is what is going on.
Using the definition I have seen here I take a large dose of ropinirole and I started on a large dose , coming from another med. I had been taking before. The only Med I have taken that worked at lower doses was an Opiate that all doctors in IL are afraid to prescribe in doses I need to be pain free and not have uncontrolled movement. The doctors have to file a report on each person they supply Opiates..I weigh about 200 lbs and smaller people need less than a larger person like me.
Some days I take an extra 5/300 vicodin and less ropinirolej ust to prove that codine would be better than ropinirole, but the doctors can't help, because bureaucrats know better than doctors and doctors are too money centered and won't defy the people who could take their license away. I don't need to increase the ropinirole I simply need people with more freedom to do the most effective thing. It won't happen unless i pretend to be a heroin addict and go to a methadone clinic and get a large dose and gradually reduce it until the rls returns and then increase it until they calm down again. My grandson did this and he is stable at the same dose for 14 years and has not had to increase the dose once.
I simply cannot bring myself to pretend to take heroin, just so a clinic will let me have methadone. You do have to have heroin in your system when they test you at the clinic, but that is no problem. They sell it on every street corner in every city in America. With a person as bad as me we have to redefine augmentation.
I can’t speak for ‘most’ RLS sufferers. All I can say is that I hadn’t a clue why my symptoms were getting more severe and starting earlier (nor did my doctor) until I discovered this forum and realized what was happening. Many had been there and done that.
Tramadol was helping me but a neurologist tried to get me to stop because of the down on opiates. Thankfully another neurologist has given it the thumbs up so I continue with it
I'm glad you were able to find another neurologist that understands. There is so much irrational fear out there about opioids. Long may it last for you!
Explain ''augmentation'' Is that any drug you are dependent on for sanity or a drug that is the cause of the attacks. I talked to the experts at Northwestern University and he said if you are simpton free and you take your medicine and go into an attack that is augmentation, but if an attack starts and the med stops it , that is not augmentation.
Sorry, short on time here. Please check out the link below. Also, put augmentation into the healthunlocked search and you will find lots of info on it. In short, the more you take of Ropinirole (higher doses) the worse your rls gets.
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RLS, tramadol and the opiate epidemic.
Quviviq or daridorexant
Cold Turkey on Pramipexole?
Time for a sea change?
Insomnia
