Withdrawal update: Hi, sorry not been... - Restless Legs Syn...

Restless Legs Syndrome

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Withdrawal update

Lucyjane29
Lucyjane29

Hi, sorry not been on for a while,

Life is busy eh and trying to deal with this has somewhat over taken my brain!!

So....

I’ve gone from 6mg of ropinorole a day down to 3.5, reducing it by 0.5 a week.

It’s going ok ( the hardest bit is yet to come I’m sure)

I do have days and times where it’s bad but I just have to walk around, I am also now on 75mg of pragabalin twice a day, I also take 2 codine before bed along with magnesium tablets and I spray magnesium on my arms and legs before bed.

I go off to sleep no problem

At all but regardless of what time I go to bed I am

Awake 4am EVERY day!!

I have accepted this is the norm now 😴

I have another blood test tomorrow “iron study”

And my gp is emailing my neurologist to see if there is anything else I can take to help me through this.

I have tried tramadol and it woke me up rather than helped me sleep and I’ve also had zopiclone which I didn’t like as it didn’t help with the RLS and rather than be awake walking around dealing with it I was just like a zombie.

I have changed my diet and lost 12 pound in 2 weeks and I’ve reduced my Diet Coke intake to 1 can first thing in the morning.

Next week I go up to 100mg of pragabalin twice a day and I’m praying that once of ropinorole I am going to lead a normal life 🙏🏻

Pam I am so glad it’s working for you and your doing well 👍🏻

I wish all of us suffers the best and if I had 1 wish I would take it away from all of us!!

Lucy x

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I know exactly how you feel! I’m weaning off 2mg/day of Mirapex and it’s hell! I’m down to 0.5mg/day at bedtime. I have somehow managed to sleep well the last 2 nights, but am always up by 4:00 or 5:00 too. I actually like getting up early. I like seeing the sun rise and all the beautiful colors in the sky! I’m going to push forward until I’m off the Mirapex, even if it kills me! My only medicinal aid is Gabapentin. No narcs of any kind! They won’t prescribe them here even though they created the problem, unknowingly I understand. They don’t understand RLS and don’t really take me seriously...that’s ok, I’ll do it myself! I’m wishing you success and peace! 🙂🌷🙂

Well done, Lucyjane. You have been very proactive. Good luck going forward. I hope your iron levels are good.

Hi Lucy

Well done you! Nearly half way there but as you say the hardest bit to come! And 12lbs in 2 weeks - please let me know your secret...

As you know the pregabalin will be having very little effect while you are reducing from ropinirole so don't judge it just yet (I'm a bit of a fan at the moment as you know - I hope I'm not made to eat my words!)

Just a thought, I know you don't like tramadol as it keeps you awake. Please don't rule it out as you withdraw from ropinirole, the codeine may not be strong enough. I found with the tramadol that I would rather be laid awake with relatively calm legs (and even that will be hard when you get to the lowest dose) than to be in such constant discomfort that I just did not know what to do with myself. You will need all the help you can get believe me.

Also I'm not sure when you take your pregabalin but I take mine in the evening, as I don't suffer with RLS during the day, there seems little point in spreading it out, although a lot of doctors say you should - I think this is because they are used to prescribing it for chronic pain which of course is constant.

And with your iron study don't forget to ask for your ferritin level - don't accept normal - normal for RLS sufferers needs to be over 100.

And thank you - things are still good, 5 weeks in and I'm still sleeping!

Pam

Lucyjane29
Lucyjane29 in reply to Pam34

Hey Pam, I don’t want to jinx it but after that night I was up all night the last 2 nights have been great 🤞🏻

I’ll let you know about the blood test results Friday hopefully.

I’m so pleased for you I bet you can’t believe it?

Have a good day x

Hi Lucy

You're being very determined and philosophical - well done! And to lose weight with a diet change - fantastic!

RosieRow

Lucyjane29
Lucyjane29 in reply to RosieRow

Thanks Rosie I am trying to loose weight for my wedding so I am feeling positive however the RLS is really challenging me right now 😩

Been awake since 2am RLS in my legs and arms so no sleep!!

Got a 13 hour day ahead of me but hoping I sleep better tonight. X

Lucyjane29
Lucyjane29 in reply to RosieRow

How did it go at the doctors?

RosieRow
RosieRow in reply to Lucyjane29

Dear Lucy, I put a new post up last night - First step taken on road to withdrawing from ropinirole - perhaps you haven't seen it, but I don't know how to send it to you, so I've copied it below here.

Good evening, my fellow RLS sufferers.

I have just returned from my GP who is a good listener. He has told me that I know much more about RLS than him - and I know much less than most of you! So thank you for all that you each share in order to inform the wider community. The GP has accepted all my reasoning for wanting to come off the 1.5mg of Ropinirole I am currently taking. I have a blood test booked for two days' time and, at his suggestion, will make sure I ask for the figure of the ferritin lovel and not just that it's 'normal'.

In the meantime he is writing to neurology, including all the notes I have written up, asking for advice about RLS, withdrawal from the DA, appropriate medication to help and so on. An appointment for me to speak face to face with a neurologist will take 9-12 months. I can't believe I would have that long to wait before the next bit of augmentation sets in so he and I will have to agree how to set about the process and just hope we get some helpful advice. I have told him what I'm doing to try to alleviate symptoms - compression socks and magnesium oil (got some itching this evening, 24 hours after first using it, but it's well within bounds of coping with), and emphasised the necessity of making sure my ferritin levels are at an appropriate level for RLS and, if not, taking ferrous sulphate or gentle iron. So long as I can get as much working in my favour as possible, I hope the effects of withdrawal will, when the time comes, be kept to a minimum.

So, having made the decision for myself, I now have my GP on-board with it. I suspect wheels might grind rather slowly, but he has given me 'permission' to chase things up in two to three weeks.

For now, I wish you all a quiet night!

This morning I also posted:

Good morning all, and thank you all for your encouraging responses.

Last night I was just a little too late getting into bed after taking the ropinirole so the RLS did keep me awake and up for a couple of hours, but I was asleep come 1am, and slept quite deeply again until 6.30am - thanks, I feel sure, mainly to the magnesium oil but also the compression socks. My legs have this heavy sensation with the oil - a sort of pleasant relaxed feel, which is amazing.

As for the future plan, my typed up 'report' I gave the GP included your way, Pam, of withdrawing from DAs, citing tramadol, dosages, - the lot! As for the need to go slowly - I was thinking I might take it in 0.25mg steps - that would take six weeks! Does that seem sensible? Or does that draw it out too long?

One further question I have, can anyone in the UK please tell me which brand of ferrous bisglycinate (gentle iron) they use? Liquid or tablets, dosage, etc? I see that most recommend alternate days and what I've read elsewhere says on an empty stomach. Is that right?

Sorry - that's rather a lot in one go! I do tend to be rather wordy!

I wonder how things are going for you today?

RosieRow

Lucyjane29
Lucyjane29 in reply to RosieRow

Hi Rosie

I’m not sure I’m going to give the most best advice as I can only go on my own experience and a lot of people on here are a lot more knowledgable than me, however I would NOT be waiting 9 months to stop the ropinorole!!

I would be asking your GP (who sounds very supportive) for either gabapentin or pragabalin and starts to reduce the ropinorole 0.5 a week ASAP.

if you wait it will could possibly be a lot harder and take longer.

I’m currently walking around the house waiting for my last 2 tablets of ropinorole of the day to kick in.

So far been in and out the bed 5 times in the last 45 mins 😩

I was on 6mg a day when I started to withdrawal and now on 3.5 a day.

Some days/nights are good and some are horrendous!!!

I am very nervous about the time in a few weeks when I am on nothing or very little, I am prepared for hell for a few weeks and my GP has already offered my time off work.

I didn’t get on with tramadol it woke me up rather than helped me relax.

I also didn’t like zopiclone sleeping tabs as I felt like a zombie in the night walking around.

I always take 2 30mg of codine before bed along with magnesium spray oil (dried my skin out) I also take magnesium citrate tablets and not got a cooling leg gel with arnica in it so trying that too.

Stay away from diet drinks “I’ve had to give up Diet Coke” it makes my RLS much worse.

I get my blood test results back Monday so not clued up on iron supplements yet but I did buy a standard box from Aldi 😂

I hope we all get some sleep tonight xx

RosieRow
RosieRow in reply to Lucyjane29

Dear Lucy

I think it sounds as if you;re doing amazingly well. You are right - I have no intention of waiting nine months - my ropinirole will be sky high if I do. I'm just praying that the neurology team write back to my GP with their advice. But, if not, he's already admitted I know more than him about RLS so I think he will be willing to go with what I suggest - which is amazing. I'm so fortunate to have such a good GP who listens.

I shall probably go with Pam's experience and suggest I try Tramadol. If that doesn't work, codeine should (I've had that before, but not at such high levels, only 45mg per night). My trouble is that medication either tends to not work at all or I react very badly to it - I can't even take paracetamol as it sets me buzzing!!! As for sleeping tablets, Zopiclone didn't work for me for very long - about two weeks of using occasionally. Lormatazepam did for a while, but seems to have lost its efficacy (after about five months). I only use it when I really need to, but particularly when I have to go away and sleep is even less of a likelihood. I shall save it for next week when I have to be away for two nights and hope it helps then.

You take magnesium citrate as well as using the magnesium oil. Does that make a difference? The oil was great for me on Tuesday night but I haven't done so well the past two nights.

I'm fortunate in that I never drink diet anything but I do like other sweet things and perhaps need to cut them down, though I am, if anything, underweight.

I hope to get my blood test results back on Mon or Tues - we can compare notes then. In the meantime, I hope you are asleep by now - and I need to be in bed in a very short time!

RosieRow

Hi Lucy - how long until your wedding - and how exciting to have something so wonderful to keep you focused during this difficult time of withdrawal and re-adjustment. I really do pray that you will be given the strength to get through this stage. I go to the GP tomorrow night to discuss coming off 1.5mg of Ropinirole - not half as bad as what you've been going through, I'm sure, so I take courage from what you're doing. Just hope he is as sympathetic as he normally is and listens so that we can agree a strategy!

It seems a pity as it has usually been very effective, but augmentation has meant increasing to this much and, having heard the stories of all you lovely people, I know it is better to grasp the nettle now rather than keep increasing the does and then - well you know all about it!!!

I'll try to post once I know what the plan is. Keep strong!

RosieRow

Lucyjane29
Lucyjane29 in reply to RosieRow

Ah good luck Rosie and yes stand your ground and get off it before it gets out of hand. I wouldn’t wish this on anybody :(

I am so tired so off to bed now and praying I get some sleep 🙏🏻

I can’t bear another night awake Alllllllll night.

Please let me know how you get on xx

Lucyjane29
Lucyjane29 in reply to RosieRow

Ah sorry forgot to reply, wedding is 23.6.19 so a while off yet but Atleast gives me time to get this RLS situation under control hey. Thank you for your support xx

good luck lucy !

Congratulations on your upcoming wedding!! I'm so sorry you are dealing with awful thing we call RLS. I am on gabapentin for nerve pain which does help but it also seems to have helped with my RLS. I wish you well and again, Congratulations!! :)

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