Tried to come off Ropinirole but the withdrawal was hard and I ended up with almost constant RLS symptoms I managed to reduce from 2mg to 0.5mg, but I am now back on Ropinirole reduced to 1mg per night. I am finally sleeping again albeit only 5 hours. I have also withdrawn from Duloxetine for Fibromyalgia so not taking any pain relief. I am sore but feel better in myself. I don’t want to take any other drugs so will have to stick with Ropinirole as Pregablin and Gabapentin don’t agree with my. GP prescribed Quinine but that was rubbish.Been reading about Cortisol levels causing RLS and fatigue. Does anyone else know anything about it?
I also have raised Ferritin levels but with no obvious cause. Could this be related?
When I am first falling asleep I always go freeezing cold and sometimes have a panicky feeling then feel wired. It can take a couple of hours to fall asleep and I always wake feeling like I have crashed at around 3pm. It feels like some merging is lacking in me but so far blood tests are clear.
Just not getting a restful sleep although at least not RLS too with the Ropinirole.
any advice appreciate. Should I ask my GO to check my Cortisol levels?
Thanks in advance
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Kezza1975
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Actually high iron levels and high cortisol levels tend to go together so it is unlikely you have low cortisol levels and I wouldn't think it needs to be checked. At least you have reduced the amount of ropinirole without apparently worsening your RLS. Congratulations on that.
Safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA. Some prescription medicines include Ativan and Ambien.
Hi Sue, thank you for you reply. I don’t suffer from Insomnia just the RLS that stops me from staying asleep. I can be totally exhausted and barely able to keep my eyes up but unable to sleep more than minutes at a time due to the continuous urges to move my legs.
When I wake up shivering and feel wired it’s more like an anxiety thing. I was having terrible night terrors taking Duloxetine which is why I decided to come off those. I am just about keeping the RLS at bay but still get breakthrough during the day and early evening. The Ropinirole is the only think they helps me get some sleep.
Oh my goodness Kezza, you really are having a tough time, I feel for you. I tried coming off pramipexole but I crawl all over if I do and I'm on the lowest dose, I also take gabapentin to help me sleep because the pramipexole keeps me awake! And I take codeine 30-60mg, I wish I could come off the dopamine agonist as I feel that is where the problem lies, and I applaud you for reducing your dose and dealing with the worsening symptoms. I was getting 3 to 5 hrs sleep on the medication until I started to take magnesium malate, I used to get annoyed with the constant advise about iron and magnesium as iron was the first thing I looked into and all was fine, however I tried most forms of magnesium and didn't notice any difference until I started the magnesium malate, in the past week I've been taking it along with my usual rls meds & I'm sleeping 5 to 6 hrs straight through, I must add I've also increased my HRT gel so not sure if that's helping either, it really is so difficult to pin point exactly what triggers my rls, but I rarely drink alcohol anymore because it really drives my rls through the roof. I'm also interested in cortisol levels as I've never had that checked. I've heard also that thyroid problems can increase the symptoms. I hope you can finally get a peaceful night's sleep, what you are experiencing is awful for you, take care.
Thanks for your response and sorry to hear you are struggling too. I am on POP so have no menopause symptoms. I have had my thyroid tested but all ok. I think Cortisol is probably the last thing to check so will speak to my GP. They are really good but I feel like I am some kind of hypochondriac. I just want to get a good nights sleep. Good luck with your journey x
I was on Ropinirole for a few years. I had to decide every night between RLS and bad nausea. My current Dr. did a sleep study and saw I was still having leg movements all night. He tried me on Methadone (only 5mg, 1x day). In the past few months I've only had two slight episodes and those were self inflicted. I can't have sugar, dairy or caffeine after 5pm. I can get 10hrs sleep now.
Thanks for your reply. Method one would really concern me as surely it’s addictive? I am Gluten and Dairy free anyway and also don’t have caffeine after around 4pm. Wish there was more research into it as treatment is so hit and miss.
Ck UK websites. They take RLS way more seriously there. At 5mg/ day, I doubt it's enough to cause addiction. The direction I was headed was suicide anyway. Ive got nothing to lose at this point.
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