I am totally overwhelmed by all your replies to my recent post and my RLS. I feel comforted that at last someone understands what we are going through. It’s so hard when people say oh yeah I get that. I hate it so much and what it has done to me. Thank you all so much for taking the time to reply to me. I am actually crying. You guys listen - nobody has ever done that for me before.
Can I ask do you suffer through the day as well. Have to plan every journey/meeting etc in advance and take extra medication to be able to attend or travel. Getting the fine line of being able then to drive yourself /concentrate.
I paid privately to see a neurologist as I thought I would be given time etc. unfortunately waste of money, really not interested. I made my husband sit outside as I was too ashamed and embarrassed to discuss how my compulsions were getting stronger. He didn’t blink. Just said had I done them and when I do let him know. He didn’t even look up at me. I felt so embarrassed and it had taken me my courage to say it. It’s nothing horrendous but I get really strong overwhelming urges to totally cut off my fringe and to jump out of a car whilst travelling. The car bit is if I am a passenger as I have taken too much medication to drive and although I know I will hurt or worse to myself the compulsion is so very strong. At times my husband just has to stop and I have to walk.
Nobody has ever mentioned iron levels to me and i think I will go nuts if this has been an issue for me and never picked up. I have quite a few health issues, BP, controlled with medication , heart murmur and aortic value disorder, again medicated, I take statins and amitriptyline. I’ve also had breast cancer2019/2020 with surgery and radiotherapy. I am so very scared to take this next step. I totally refuse to do it on my own like last time. I need some support from somewhere. I don’t feel strong enough at the moment mentally or physically.
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SilverEvie
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Both statins and amitriptyline cause restless legs symptoms. You can't do anything about the statins. But there are anti-depressants that are much better for RLS: trazodone (Desyrel), moclobemide, reboxetine, tianeptine and agomelatine. One article reported on a patient that actually showed improvement of RLS with trazodone.
Oh Evie. Statins and Amitriptyline make RLS worse. The neurologist you saw should be reported to the GMC for negligence. He should know about the meds that worsen RLS and about Impulse Control Disorder. A neurologist was recently sued successfully for similar negligence in the UK. Definitely demand your money back.I suggest you print off the Mayo algorithm and the information in the pinned post on augmentation and write to your GP explaining that the only way you will get better is to slowly get off the Ropinirole in the way I stated, 0.25mg every 2/3 weeks.
Your GP will need to monitor you and prescribe an opioid like tramadol or Oxycontin to help. The Amitriptyline can be swapped for trazodone, the only safe anti depressant.
Once off Ropinirole and on meds that control your RLS, your blood pressure will reduce and you will probably be able to sort your health out and stop statins and blood pressure meds.
Instead of statins, you could see if diet and exercise reduce your cholesterol.
The most important thing is to get off Ropinirole.
Prof. Walker at Queen Square knows about RLS and will prescribe opioids to help. He would even help you off Ropinirole. He does private appointments by telephone.
Stay strong, you will be able to do this.
Consider contacting a solicitor about the appallingly negligent treatment you received from the first neurologist. I attach the link to the legal cases.
I take Amitriptyline for pain relief not as an anti depressant. I suffer badly from Achilles issues. I can’t believe my GP has not noticed and said anything. Also why hasn’t it been mentioned at medication reviews or the dispensing pharmacy?So much to take in and work through. Just trying to get a gp appointment is a nightmare and virtually impossible. I currently have Covid so will get onto this when I’m feeling better.
Thank you all for your help and advice. Do you guys have medical knowledge or just learnt through experience?
Dear EvieI feel so upset at your treatment by so called experts. I too paid privately to see a neurologist after my gp didn’t know anything about rls I believed everything he told me because I didn’t know any better but he put me on large dosage of Pramipexole and I suffered horribly with augmentation
Listen to people on this website they will help you
First get off the Amitriptyline slowly and find alternative pain relief. Pregabalin is good for nerve pain and helps RLS.Next get blood tests and ensure serum ferritin is above 100, preferably 200.
That will help the RLS for now.
Then when you're better you can start reducing the Ropinirole.
Read all you can about RLS and buy
'The clinical management of RLS' by Drs Buchfuhrer, Allen, Lee and Hening second edition. Available second hand on Amazon and read the latest, updates guidance on the Mayo algorithm.
We aren't doctors. Just furious patients who discovered RLS isn't taught to GPs or neurologists which is why we are so negligently treated. In my case, I've spent the last 5 years researching everything I can find on RLS and campaigning to get it taught to doctors in the UK.
I am so sorry for your struggles. I am exactly the same re. RLS. I even got all the guys in church to pray for me for help. I had to give up driving for a few months as I was too tired and it was dangerous. I had 2 little kids and lived in a small village in the middle of nowhere in Germany. I had to cycle everywhere. It was such hard work to buy groceries as there were no shops nearby.I ended up wanting to die. Just needed sleep so desperately!!! The meds from my German neurologist needed to be increased all the time and didn't help that much, neither. I desperately prayed for help, as I always was a Christian.
Luckily my prayers were answered and "something" told me to increase my iron, B6 and B12. I slowly went off the dopamine agonists and lived many years without meds. Yippee 😀My first night sleeping through was like winning a million in the lottery. Woohoo! What a feeling!!!
Unfortunately, then menopause struck and that wasn't enough anymore. I am now back to where I was when my kids were little. I am thankful for a good 10 years without any symptoms and I hope and pray that someone will find a way to make this disease manageable. Take care and God 🙏 bless.
Hi just a few lines from me regarding travel issues/ driving etc. I was long ago prescribed Clonazepam to take daily along side Ropinirole. I can't recall the actual dose but it did help to suppress the RLS symptoms. The downside for me was that the Neurologist had to notify the DVLA that I was taking Clonazepam. For a 12 week period my driving license was suspended by the DVLA. During that time DVLA contacted all the Consultants and my GP to gave evidence on my competence to drive a car while taking Clonazepam. Eventually I got the all clear to drive again. Not long after my (then ) Neurologist decided to move on and I was then passed on to another who decided that my RLS symptoms were not being managed and decided to stop the Clonazepam and prescribed a different medicine. Once off the Clonazepam, the RLS symptoms returned when driving. !
I am in my 70's and taken so many different medicines, seen by 6 different Neurologist, some of whom couldn't decided if my RLS suffering was due to too little or too much ropinirole/ dopamine agonists. Had brain scans (try keeping still when you are having an RLS episode at that moment), had 2 Cardiac procedures (insertion of 4 stents) during both I experienced RLS and my right leg / foot were kicking the Surgeon . That sounds funny now but at the time it was harrowing and very distressing.
When Neurologist no 6, decided to prescribe Trazadone to improve my mood and sleep . He also referred me to the Sleep Disorders team at Guys Hospital, London. There the severity of my RLA was diagnosed as severe due to Ropinirole augmentation. Over a period of 8/10 weeks I came off of 4mg dose of Ropinirole and started taking Pregabalin . The switch had a dramatic benefit to my life. No longer did I need to walk the streets for 2/3hrs every night after mid night to try and walk off the severe RLS symptoms . Augmentation was gone!. It no longer had an impact on my life.
In the last year I have reduced the amount of meat that I eat. I take blood thinners so I need to keep my iron levels up, and eat foods / spreads that are rich in iron. I keep away from iron in tablet form as it binds.
For me. Pregabalin has been a life saver. I still need Trazadone for sleep. Daily I suffer RLS symptoms but can manage them so much better. In my case if I drink more than 1 glass of wine I will have bad RLS symptoms that night. So I keep to the 1 glass of wine.
I go to bed when tired. When the RLS prevents sleep I get up, have a cup of tea and listen to music for max 60mis, then go to bed and sleep.
Not only do we have to manage the RLS we need to manage ourselves and get the support of family. I live on my own , but when my wife was alive, my RLS also had an impact on her as well. She witnessed my RLS and was very supportive. RLS is a difficulty journey. I hope you get better treatment soon.
Wow to get off 4mg of Ropinirole in 10 weeks is usually difficult. Did you have bad withdrawal symptoms or did they give you something for that?I'm glad you saw a knowledgeable team. Can you let us know the main doctor so we can add to the list of knowledgeable RLS doctors? There aren't many in the UK.
I'm delighted your RLS is now under control on Ropinirole and trazodone.
The Sleep Disorders Team at Guys Hospital are excellent. Dr Eliza Sany and Dr Wasserman Berkovitzar two of the team that have helped and continue to monitor my progress with RLS and Sleep issues.
Regarding coming off of daily Ropinirole 4 mg , Guy's called me in for a sleep assessment which meant an overnight stay and wires attached to my skull. That day I was very confused and started the journey by train. Ten minutes into it I realised that I had left all my meds at home. Had to get off the train, catch another back to Dover, than restart the journey. Advice from a train Guard that I should try and pick up a faster train from Ashford was well meant but the train sailed through London Bridge station to Charing Cross . I then had to find a train back to London Bridge and got it wrong again, ending back at Sevenoaks , where I eventually got a train to London Bridge and made to the Sleep Disorders unit at Guys Hospital some 2 hrs late and in a augmented state.
I was wired up by the team and then tried to settle. The augmentation was bad, I couldn't rest I was constantly on the move and trying to get relief from RLS. I realised that I wasn't going to settle and needed to get out of the hospital. I told the team that I had to go, and despite concern for my well being they removed /unglued the wires from my skull and I left then unit about 10.30pm, arriving home just after midnight.
The Guys team witnessed the impact augmentation caused by Ropinirole was having on my life. Further, over 4+years I was taking it, I was walking the streets of Dover until 3/4am in the morning , had the compulsive need to buy items that I didn't need and other behavior and mental health issues.
When I agreed to come off Ropinirole it was a very difficult decision for me. I had been on Ropinirole for most of my RLS life and although it was adversely affecting my health, sanity and life I was very scared that the change to Pregabalin would be a disaster. In the past I had been prescribed other dopamine agonist tabs, patches, Gabapentin, Clonazepam and various combinations of those drugs, but the Neurologists always came back to prescribing Ropinirole, varying the dose or type eg. slow release.
The Guy's plan was for me to come off of Ropinirole over a 12 week period and as I came off to it to substitute Pregabalin. Every 10 days I would reduce the Ropinirole by 0.5 mg and take 25mg of Pregabalin, eventually getting to a dail intake of 250mg and totally off of Ropinirole.
It wasn't plain sailing there were problems getting my GP surgery to understand the need for the Pregabalin prescriptions to have two different prescribed strengths (50 and 100mg). The Pharmacy had to show flexibility. Pregabalin is a controlled medicine, and prescriptions had to be rewritten to comply with Regs.
The journey from Ropinirole to Pregabalin was very difficult. There was no offer of supporting medication. My only way of dealing with the difficult times was to go out of the house and to walk. My two Labradors never objected to a walk and if they hadn't been there for me I wouldn't have made it and be alive today.
RLS never goes away. For me a total cure is unlikely. In the past I have needed to vary the Pregabalin dose. For a good 2 years, a 50mg dose in the morning , 100mg in the afternoon and 150mg at night. This was probably due to anxiety and fear of RLS breaking through.
In the future, if needed could fall back to taking Pregabalin in that manner, but for I now find that taking 300mg at night with 50mg of Trazadone an okay fix. I still suffer RLS in the morning and afternoons but the symptoms are mild and activity with occupying my mind gets me through that period.
Thanks for sharing your journey. I will add those names to the list of knowledgeable doctors.However, they still haven't sorted the withdrawal symptoms.
Most of us have 2 to 3 weeks of hell with no sleep and constant RLS.
Most neurologists know very little about RLS. Who are you seeing?Most US experts like Dr. Buchfuhrer recommend taking at least 3 months to reduce dopamine agonists. So 0.25mg every 2 to 3 weeks seems to be the best option.
Ensure serum iron is above 60 and serum ferritin above 100 as that can alleviate some of the withdrawal symptoms.
Start replacement meds while reducing Ropinirole. Pregabalin is now recommended first line treatment by the Mayo Clinic Algorithm.
Be wary of the neurologist suggesting another dopamine agonist like Pramipexole or the Neupro patch because they will cause augmentation quite quickly if you've augmented on Ropinirole.
Most people need help with severe withdrawal symptoms.
I found cannabis to be the best help during the worst 4 or 5 nights.
It's very, very difficult but worth it as the severity of RLS reduces once off Ropinirole.
I have Covid for second time in 3 weeks so my brain isn't working well at the moment. It may be better if you post results as a separate post & more people will be able to help. There are files available which say what all levels should be but I would need time to find them
Serum ferritin should be above 100, but some need levels above 300. Serum iron should be above 60.
I've had similar symptoms to you. My partner has had to stop the car while I walked and he drove along behind me at snail-pace until I could get back in. Refusing lifts (in case of above) fearing meetings, avoiding meals out etc etc. It has such a debilitating effect on every aspect of life and impossible to describe or explain. I usually blame my back - which I've had operated on several times so not a total fib - and I have osteoarthritis, but RLS is worse than anything. I remember when I could go to the cinema or sit and read a book, but not for years and although I wouldn't wish it on anybody I am so grateful for all the wonderful people on this forum who come back time and again with helpful advice, answers, and above all support. Take care, you're not alone.
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