04 am UK time

[HipHop1972]

Far from being a cause of distress as was the case with the untold misery of a month ago walking the house at night feeling that familiar dread that comes with severe sleep deprivation and feeling like you’re teetering on the edge of an abyss, I now feel a certain sense of euphoria knowing that I will sleep again once back in bed.

For those members going through the hell of Dopamine Augmentation reading this post must understandably feel that I’ve finally lost my wits or else found that silver bullet to rid the world of RLS. Well, I can honestly say that it’s neither, rather that I’ve reached a state of equilibrium. Let me explain, having suffered RLS for in excess of 40 years as my father did before me my condition increased and with that increase so did the dosage of Ropinirole until in the end I was taking 6mg/day. Having been advised by RLS-UK at an annual general meeting that my dosage was excessive and that I should consider coming of Ropinirole which I commenced on the 23rd October 2022,m supported by the wonderful people of Health Unlocked and RLS-UK. I am now down to 1.75mg / day with a further reduction of 0.25mg due within the next week.

The reason I’m sharing this is to give hope to those members who are struggling with the lack of understanding by the medical profession and starting out on the journey to rid themselves of the effects of Ropinirole. It’s by no means an easy journey but nothing that’s worth doing is easy.

I can tell you that although I’m still taking Ropinirole the quality of my life appears to have turned a corner. When I reduced my dosage of Ropinirole to 2mg/day went through a period of really intense RLS so much so that I contacted my Doctor and explained that I was at the end of my tether and got an emergency appointment within 2 hours that day, unheard of in the UK, the upshot is that I’m currently waiting for an appointment to see a neurologist face to face in a city hospital. Since I saw my GP things have changed or my feelings of wellbeing have changed. It took me about 6 weeks to reduce Ropinirole from 2mg to 1.75mg much longer than any other reduction. Yes RLS is still present but manageable.

the only medication I’m currently taking to augment Ropinirole is Codeine max twice a day. RLS will wake me up at any time from 3am and I don’t fight it, get up go down stairs make a hot drink and stand at the table ready the paper, if it’s bad I take a very hot shower focusing on my legs, alternating hot cold hot etc. This usually settles things down and I can go to sleep until it wakes me again after a couple hours at which point I get up tak 2 codeine shower shave and dress. That’s me now for the day and generally stay active and sit down for relatively short periods, but I do understand that mobility can be an issue for some members so remaining vertical may not be an option. As I keep busy RLS only becomes problematic in the afternoons, generally about 2.30 - 4 pm at which time I take 2 more codeine tablets. These usually take me sting out of my RLS until I take my full reduced dose of Ropinirole when within minutes my legs are going into overdrive so usually eat dinner standing up and walking around listening to audiobooks. When it settles down I usually just go to bed as I’m tired, and the routine repeats.

I’m truly amazed at the difference it’s made to not just my life but to that of my Wife reducing Ropinirole has made and i will continue to reduce my dosage until I’m completely free of it. I feel very blessed that so far this routine works for me. It may help others but we are all different and nothing is a one fits all.

I have posted this in all humility, not saying, aren’t I doing well, yes I’m in a much better place than I have been for years, but to give encouragement that we can get through this with perseverance, trial and error but most of all by supporting each other through forums such as this and RLS-UK and the dedicated members who do so much to support us and fight our corner. I don’t think we will ever know the length that they go to.

It’s now 05.49 am UK time and the birds are singing. So as the old musical said, To sleep perchance to dream. I was a member of the cast in an amateur capacity of the musical (Perchance to Dream) in a professional theatre. A lifetime ago 😢

[Aujamw]

I love your hopeful optimism in the face of your trials. I too am suffering. I am trying not to fight insomnia as I am awakened after 1 hour sleep, but my weakness and fatigue from the lack of resulting sleep is dreadful. Thanks for your post.

[HipHop1972 in reply to Aujamw]

Hello Aujamw. Thank you for your reply and am so sorry that you are going through what I wouldn’t wish on my worst enemy. I believe that the medical profession in America is more enlightened than here in the UK and that Neurologists over there have a lot more experience of RLS and treatments that are available. I don’t know if you are seeing a specialist as I know it’s all down to what private health insurance you have but look out Sue Johnson’s posts or Joolsg as they are great and so helpful, especially Sue who is Stateside. The Mayo Clinic is a great source of info on RLS but perhaps you already know all this. Please take care and I do relate to what you’re experiencing and hope you find a way through it. 🤞

HipHop1972

[Madlegs1]

Thankyou for a wonderful post.I'm taking from it that you have reached a state of equilibrium in your RLS experience?

If that's correct, and you are finding this state somewhat acceptable, then I suggest you take a long rest for now.

The final come down from coming of any addiction, is the final few drops. They will be pure hell. It would be a good move to gather your strength for the final straight.

Codeine may become a concern - I hear on the news there are moves to restrict access to it . Hopefully RLS sufferers will be exempt.

DAWS is a long and painful experience. Give your body a good start before going down that final journey.

All the best.

[HipHop1972 in reply to Madlegs1]

Hi Madlegs1. Thanks for your reply and yes at the moment I’m finding myself in a state of equilibrium but will attempt to reduce to 1.5mg nice and tidy. Thank you for your advice which I will follow as I have no doubts about what’s to come. You are correct Codeine carries a health warning re addiction, but you can still buy over the counter in England, I couldn’t buy in Holland and was thankful that I wasn’t stopped by customs 😁 Pharmacies put you through a type of inquisition here before letting you buy it. I do restrict my dosage and don’t have an addictive personality, thankfully, but never say never. You mentioned building up my strength for the last lap, were you promoting Ireland with that comment if so, not a bad idea as I love Ireland and had many a happy holiday there and when I get through this would like to have a motoring holiday around the West coast.

All the best

[Madlegs1 in reply to HipHop1972]

Great idea!🇨🇮☘️🍀

[Lineker]

Inspirational. Everyone needs to have a look at this. Thank you.

[HipHop1972 in reply to Lineker]

Hello Lineker, you are very kind but I wouldn’t go as far as inspirational 🤣🤣

[Elsie77]

I am so pleased for you, it is a hard journey. I don’t have an understanding or knowledgable doctor but he has referred me to a neurologist. I have an appointment at Leicester hospital in 2 weeks, do you know which hospital you have been referred to?

[HipHop1972 in reply to Elsie77]

Hello Elsie77. Thank you, so pleased that you have an appointment in a couple of weeks and hopefully they will be able to put you on a course of treatment that’s not Dopamine based. Not sure about my appointment yet but probably Manchester based. Let the Forum know how you got on please. Take care.

[Kakally]

🤗

[HipHop1972 in reply to Kakally]

Hello Kakally, I’m in shock with the number of members of your family suffering from RLS. I agree more research needed but it seems that the medical profession doesn’t always look at the results of research already available, ie. Mayo Clinic for one, ok it’s based in America so what if it’s helps understanding. I wish you and your family well my friend.

[Kakally in reply to HipHop1972]

Thank you. I wish you well too🤗

[Lilcatfeet]

congratulations an your success story. Your attitude is uplifting. I join you in your gratitude to this group. They bring such expertise and experience and are incredibly generous to us strugglers.

And thank you, most of all, for hope.

[Bowie4eva]

Well done, Hip Hop!! I like your attitude . As you say, you wouldn’t wish this ridiculous affliction on your worst enemy. I too am so grateful for this forum, I wish everyone on it would be free of RLS - but let’s face it, it’s good to know that we’re not alone!! A good SOH is absolutely vital - for this and all life’s unpleasantnesses!!

Warm wishes to you and to all of us - and thank you to you, Sue, Joolz, Chris, Madlegs etc, etc for continued support and comfort xx

[Jumpey]

Huge well done and I hope you go from strength to strength.

[Sunny070]

It's so good to hear that coming off Dopamine slowly has been successful and you are so positive.

[Loopylegs]

Your post has, along with the wonderful support from this group, given me great hope that I'll one day be free of pramipexole, I'm so thankful I never increased the dose, and that was due to the wonderful advice I received here. I'm currently down to a little over half a tablet and while my symptoms have increased, I'm managing on the codeine tablets which I've had to increase, they're strict in Ireland just like the UK about codeine and I'm lucky that I need a hip replacement so I have a 6month prescription for codeine for pain relief. Currently I stay upright all day constantly moving or standing, then have no problem falling asleep when I go to bed around 12am, no point going any earlier! I'm up 1.5hrs later for a walk into my ensuite where the floor tiles are nice and cold and that gives me relief, I usually nod off until after 3am when I'm up again for another walk about, it eases off around 5am and then I go into a deep sleep until the alarm goes off at 7am, time to get the kids up for school, but with the advice here of increasing my gabapentin before bed & taking extra codeine through the night I think the little sleep I get during the night is quality sleep as I'm not exhausted during the day & my mood is slowly lifting because I know the goal is to get off the DA, and allow my brain to start making its own dopamine naturally. Best of luck to you & everyone here, I know we'll get through DAWS together ❤️

[HipHop1972 in reply to Loopylegs]

Hello Loopylegs, similar pattern to me but I’m getting more sleep. It must be hard with a family and even more so if you’re also working. I’m fortunate being retired as my time is my own but that wasn’t always the case. I wish you well and hope that your hip replacement goes well.

[TobyTobias1]

Oh your post is really good to read. Well done. I think I am somewhere around the same place as you at the moment.

Early last year I was up to 4.5 mg Ropinirole daily but my RLS was still crazy, barely any sleep, depressed and desperate. I decided I needed to do this myself as my GP ‘s are totally unhelpful. I was doing ok reducing then got stuck somewhere in the middle of the dose ( think it was around 2.5mg) With some advice and encouragement from Jools on this site I waited until I felt a bit stronger and then continued to reduce by 0.25mg and wouldn’t reduce the next 0.25mg until I felt settled and strong enough to cope with it. The time between reduction varied as the lower the dose the harder it was to reduce. I have now been on 1.25 mg for some time and I know it’s going to be the toughest thing ever to get off that final dose. However, I am feeling like I have some of my life back again. RLS hugely improved… to what it was. Don’t get me wrong, it’s not disappeared, it’s still there every afternoon/evening if I try to relax, so I potter about a bit maybe take a codeine. I guess I would say it’s manageable at the moment. I have taken a sleeping tablet, Zopiclone 7.5 mg for years and still take it. That’s a battle for later! But during my reduction of Ropinirole I decided to wean myself off Sertraline 50mg Anti-depressants which I had also been on for several years. I do believe getting off them has helped with improvement of RLS. I haven’t had a day/night free of RLS for as long as I can remember, but I feel more in control of my life these days as I get a bit more rest, so less depressed and stressed.

To be honest I am a bit scared of getting off Ropinirole completely as I don’t know how I will manage. I was going to try see a private Neurologist this year but then figured that I’d get as far as I can first doing it on my own and with advice and support on this site.

I wish you well, and so pleased for you and your wife with how far you have come. I am on my own now but I’m sure it must drive a partner a bit crazy too seeing us walk about kicking legs stretching legs, standing up reading or watching tv etc etc, and also they must suffer and feel so useless as nothing they can do to help. So thank you to all long suffering partners too 🙏🏽

[SueJohnson in reply to TobyTobias1]

You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. If need be you could even shave the tablets to provide an even smaller dose. And use your codeine to help with the symptoms. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."

[SueJohnson in reply to TobyTobias1]

If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about RLS treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson in reply to TobyTobias1]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[HipHop1972 in reply to TobyTobias1]

Hello TobyTobias1, thank you for your reply, we appear to be running in tandem and you are doing so well that it would be a shame to not carry on. So far I’m not focusing on what RLS will be like being Ropinirole free but just taking it day by day. A lot of members on this forum who are totally free of Dopamine Agonists say how much better they feel but I will have to find a substitute meditation if it can’t be managed any other way.

Finally I’m so sorry that you are having to deal with this on your own now, can’t imagine what that must be like. It might be such a bad idea to research a Neurologist who has some knowledge of RLS, one or two private consultations and they may be in a position to prescribe a course of treatment that could be passed onto your GP. I’m the meantime I wish you luck, try to stay focused and take strength from those who have completed the journey. You are not alone hundreds of thousands worldwide are fighting the same battle we’re fighting.

[Munroist]

I think it’s brilliant that you can deal with your symptoms with acceptance and even positivity, and in that way avoid making things worse with anger and resentment which as you suggest can be difficult for other people to cope with. Easy to say but much harder to do. Best wishes for the ongoing reduction.

[HipHop1972 in reply to Munroist]

Hello Munroist. Thank you, didn’t expect to get this reaction or response from my nocturnal ramblings. I am a relatively positive person but have experienced all the things you mention in your post and am under no illusion that I won’t face that again as I get closer to zero

Kind regards hiphop1972