My journey and coming off ropinirole.

[RLSAndy]

Hey - i thought id do an update post and log where im at with my journey of coming off the evil drug Ropinirole.

After being prescribed it and getting up to 4mg augmentation soon set in so I was prescribed pregabalin alongside it that didnt really help.

I told the Dr who is beyond useless and hadnt yet found this place, he told me to come off it over night, i didnt trust him but dropped 2mg and life became hell, legs kicking and constantly moving, keeping me and my partner awake, i was lost and in trouble as im a busy chef who runs my own business.

Over the last year with help from here ive slowly come off it using codeine (non prescribed) i set myself a rule of no more than 2 x 30mg a night, ive had an extra 30mg twice but worked hard to not become addicted. I get regular low heart rate alerts during the deep stages of my sleep when i use the codeine regularly and havent had any help with that yet, it worries me but i have to use them to balance the dopamine levels.

Ive had a sleep watch and bloods taken from a sleep clinic in my city of Birmingham, UK yet not heard anything back and after chasing been told the wait could be another 6 months, im basically abandoned by every one and realised its just me who can save me so me and my girlfriend work through it.

During this time ive started bodybuilding again, dropped 56lb, quit alcohol and opened a restaurant working 14 hour days and training 4 days a week, 10k steps daily when i can averaging 8.8k and do 4 cardio sessions.

I reduced by .25/5 at a time with the last reduction being .25 for a week into nothing, this was due to augmentation being so bad i was so sick of this drug being in me, twitches, 4 hours sleep, anxiety i got to a stage where i was ready for the worsening final drop off and to get clear of it for once and all…

Im now three days off ropinirole using pregabalin i take 450mg split into three parts 9pm 12pm and when i wake normally 3am when i take one 30mg codeine. I take 2 magnesium tablets with my first dose and use cannabis oil that is the proper stuff with thc in.

After three nights im averaging 6/7 hours of broken but not that bad sleep, for me. Tomo my restaurant is open so three longer days and on my feet which will be the real test as this makes my legs worse. Ive decided it will be worth it, im very strong minded although i dont give myself credit for this and can get through it.

I pray once im clear the pregabalin do their thing and i enter a stable stage in my life for a while. RLS will be a battle for the rest of my life but i cant let it rule my life anymore.

I hope this post shines some light for people on the same journey and welcome questions and talk amongst fellow sufferers, we are alone, no one is going to help us so we have to help ourselves with support from others in the same place 🙏🏻

[Joolsg]

Huge congratulations to have got this far and while setting up a new business. You are amazing!

You shine a light on the scandal of Dopamine agonists. Doctors dish them out like sweeties.

And when DAs inevitably turn on us- those doctors are useless.

They don't know what to do or how to help us.

This forum is the only place to get the help we desperately need.

How appalling that non medics are helping RLS patients because doctors caused the problem and have no idea how to solve it!

RLS-UK is trying to change this; but the medical bodies have so far refused to listen/engage.

Good luck over the next month and with your new restaurant.

If the pregabalin and codeine do not cover the RLS within 6 weeks, push to see a specialist and ask for low dose buprenorphine pills.

With RLS, we usually have to take meds for life ( unless RLS responds to iron infusions or removing trigger meds).

[Alifromthegalley in reply to Joolsg]

I was interested to read “RLS-UK is trying to change this; but the medical bodies have so far refused to listen/engage”. Is there anything we can do to help? Anywhere all of us stories can be collected and shared? Maybe they’ll listen if we all gang up on them!

[Joolsg in reply to Alifromthegalley]

We tried that in 2019. We asked members and people on this forum to write a template letter to the RCGPs, their GP, their MP. Only about 100 did so. We need tens of thousands to get involved.

The RCGPs sent a standard reply to everyone saying no education was needed.

RLS-UK was about to lobby Parliament to force change, but the General Election has now delayed matters.

The best thing you can do is to join RLS-UK and keep an eye out on here and via RLS-UK emails, for news of the next Survey or lobbying opportunity.

The August survey we arranged jointly with another charity gained 3770 replies. Sadly most of those were from members of 'Pregnant Then Screwed' Instagram account. We did ask for people on here, and members of RLS-UK to do the survey, but we didn't get that many.

If you follow FB, Twitter(X) or Instagram, join RLS-UK so you will be up to date on the next survey or campaign.

For some strange reason, RLS patients do not seem to respond via this site. Or at least not in the tens of thousands we need.

[Alifromthegalley in reply to Joolsg]

I actually did complete the August survey (you jogged my memory). Add menopausal brain fog to my list of ailments FML

[Joolsg in reply to Alifromthegalley]

🤣 The survey will give RLS-UK some excellent leverage. Over half those taking DAs are clearly experiencing augmentation and 18% have Impulse Control Disorder.And yet UK doctors are still prescribing them to newly diagnosed..and telling patients that augmentation and ICD are rare!

[LotteM in reply to Joolsg]

Jules, I asked someone on the board of the Dutch RLS goundation, and they had the same problem:; it appears difficult to get people to fill out surveys. I wonder it os because of the average age of the people with severe RLS. RLS worsens with age and many people only learn they have RLS when they are older. I did! Although in hindsight I had RLS already in my twenties.

[Joolsg in reply to LotteM]

Very likely. The reason we had such a good response to the survey was mainly down to the demographic that follows 'PregnantThen Screwed' who RLS-UK did the survey with. Most responses were from young women who first experienced RLS in pregnancy.So definitely the older demographic, who are not as reliant on social media, has definitely played a part in the poor response.

[RLSAndy in reply to Joolsg]

Day seven and an all time low of 3 hours, lucky im off work today so got up and will snooze, go to the gym then take some cannabis oil this afternoon to catch up on sleep. My brains playing tricks on me, worried the pregabalin isnt going to work but im guessing this is peak withdrawal right now and it may be worse still until it levels out?

[Joolsg in reply to RLSAndy]

It should start to improve from now on. The first 15 days are the absolute worst.Hopefully your dopamine receptors will stop screaming out for their dopamine hit soon.

I averaged 2 or 3 hour's over 24 hours for the first 2 weeks.

The daytime RLS disappeared at around the third week. I still had RLS at night and broken sleep for a long time- but I could sleep during the day.

However, I was on pregabalin AND Oxycontin.

You may have to add a low dose opioid to the pregabalin if it doesn't give you full cover within 4 weeks.

Fingers crossed the pregabalin kicks in.

Keep us updated. It is very much trial and error in the first year after getting off DAs to find the right combination of meds.

[Alifromthegalley]

Well done on achieving so much whilst coming off ropinirole. I had to take a month off work when I did it so to run a business and make lifestyle changes at the same time is no small feat! When I hear about another persons experience it makes me angry that this drug is still being prescribed freely whilst the drugs that are proven to work are withheld from us 😡

[Laineypl]

Well done. You sound very focused and determined, hope you've found your answer to RLS

[Munroist]

It’s sounding promising and you’ve made that big step to get off the dopamine agonist, well done. Many people find it gets steadily better from now. I see you are going into busier period and as with my last reply I’d really suggest trying to pace yourself, give yourself short breaks and try not to do everything at 100% intensity. As an aside, losing some weight is often found to be beneficial so hopefully that’s helping you. Looking forward to a steady improvement and good luck!

[Insomniak]

Hi RLSAndy,I’d like to add my congratulations to you on achieving so much in the rest of your life while coming off Ropinirole I really enjoyed your update as I am on a similar journey having been on 4 mg per day of Ropinirole for the last eight years. Over the last 3 months I have tapered down to 1.5 mg per day. I am using codeine (30 mg / day) and Pregablin (400mg/day) similarly to try and deal with the resulting effects which are awful. I refuse to give up my fitness regime and manage a level of part-time work with the agreement of my employer but I am not trying anything as ambitious as opening a restaurant. I have been trying to get my dose right so that I get some sleep (if I can get 5 hours sleep over 2 to 3 sessions per night I regard that as 100% success). The update regarding your dosage rates is very comforting to me as I have landed on roughly the same amount per day. Thanks again for taking the time to blog, it’s great to know that the path to zero Ropinirole is achievable.

[RLSAndy in reply to Insomniak]

Hey im glad what i wrote has helped. Im on day five now (4 nights) no ropinirole and got 8.5 hours last night, im amazed but dubious as im in work today/tonight which is what sets my legs off so we shall see. Ive also had to come to A&E as im getting low heart rate alerts and want to get it checked, I presume its due to DAs and or codeine but awaiting an ECG.

[Insomniak in reply to RLSAndy]

Hi, best to get your heart rate checked out ok. I guess the codeine may be suppressing it but could your low resting heart rate just be a consequence of the high level of fitness that you have achieved? 8.5 hours sleep 👏👏👏👏👏👏 I wish! Congratulations!

[Joolsg in reply to RLSAndy]

Out of interest - what is the low heart rate alert? Under 45? Under 50?As Insomniak mentions, your increased exercise & fitness might be lowering your resting heart rate.

[RLSAndy in reply to Joolsg]

It dropped to 36 over night and regularly goes to below 40. They just took it at mid 50s at the hospital and said i have bradycardia… awaiting blood results. I really think its either fitness or the DAs/Codeine or even the low dose cannabis which ive told them about so they know exactly what they are dealing with.

[Joolsg in reply to RLSAndy]

pubmed.ncbi.nlm.nih.gov/315...

DAs increase heart rate, so stopping them will inevitably reduce your Heart rate.

And that is low! Yet another nasty side effect of Ropinirole.

I hope they can sort it out for you.

[DicCarlson]

Excellent news! Your relative youth is a big advantage - onward!

[pyramidhiker]

RLSAndy, I have seen several posts that if you take magnesium take it 2 hours prior to any Gaba.

[RLSAndy]

Hey guys - update: its been seven days since no DAs and as I expected sleeps got bad, work antagonises my legs as im very busy and on my feet non stop moving right up until i finish at 10.30/11 pm then once i get home im exhausted, fall asleep for 30 mins then my legs kick in and its hell for a few hours. I was expecting this and tbh worse, im getting 5 plus hours, the hospital let me go home i have been diagnosed with bradycardia and awaiting what happens with that next.

Im almost there and praying it will ease and my life can not centre around RLS even for a period of time and the pregabalin do their thing. I took two codeine last night which helped but i want to be rid of them asap too. Ill keep updates coming.

[RLSAndy]

its day 12 (i think) sleep is rough, 4/5 hours of broken. Awaiting to hear back from the hospital still so not taking codeine as I suspect thats whats giving me the low heart rate.

I know ive been told a million times but in my fog please remind me, is there still time for the pregabalin to work better im guessing im still early stages of DA withdrawals…

[Insomniak in reply to RLSAndy]

Hi RLSAndy, ‘fraid I can’t answer your question but I too would be interested to know. Just jumped on to wish you all the best with putting DA’s behind you. Please keep posting as I am very interested in how you get on.

[RLSAndy in reply to Insomniak]

Hey mate - thanks for asking. It’s been rough but im about six weeks off now and although no where near clear of rls its better, in seven days ive had two bad days, my sleep average is 7 hours with more 8-9 hour days than ive had in a long time. Still having to use codeine 4/5 times a week but still at the tiny dose of two 30mg a night only, its been my rule to not become dependent and has worked in regards to that. Im still going to see the specialist as if i can get another drug that will really get rid of it as others have gad obviously i will, but for now its a vast improvement 🙏🏻 hows things with you?

[Insomniak in reply to RLSAndy]

Hi, are you just using codeine alone? I am planning to manage by using codeine like you along with c. 400mg of Pregablin which I understand does not augment. I am delighted to hear your progress, you have achieved a real step change in your sleep pattern. I am currently down to 1mg of Ropinirole per day supplemented with Pregablin and Codeine. I feel totally different than when I was on 4mg in a good way, more centred. My challlenge is I have a series of long haul flights in February when I will have just tapered to zero Ropinirole (hopefully). I am concerned about having to sit for 8 hours. I have joined RLS UK and hit a credit card sized medical notice to present asking the airline to accommodate my need to move around. We’ll see what happens. I think you are in the home straight now, consider trying Pregablin although obviously get a qualified medical view. Stay in touch.

[RLSAndy in reply to Insomniak]

Hey mate, thats good going and you’re getting closer. I havent been on a long haul flight in years, i remember last time i did was long before i even knew what RLS was and it was hell, for me learning the patterns of when my rls kicks in helps me, i get ‘twinges’ and signals its on its way and although people recommend to take pregabalin all together i find taking four tablets then two works for me. If its a bad night ill take two codeine with my first dose and if i feel ok i wont use codeine until its to late and have to which 60/70% of the time will kick in 20 mins later and ill sleep, i study my sleep via my apple watch which helps me see paterns. This rls as you know is the devil and imo we have to learn how to deal with it individually based on others advice from here. Let me know what the airline says i can fully imagine the anxiety it must be causing.