PLEASE HELP ME TO KNOW WHERE TO TURN NEXT! ROPINEROLE WITHDRAWAL AND I CANNOT TAKE IT ONE MORE DAY!! I AM OPEN TO ANY ADVICE PLEASE!!

Sunshine, you’re not a hypochondriac and withdrawal from ropinirole, or any dopamine agonist IS horrible.

A few things. First, you CAN take gabapentin along with the ropinirole. This info comes from the book by drs Lee, Buchfuhrer et al on Clinical mgmt of RLS. Second, you need to give your body time to adjust to gabapentin. Like you, I usually react to already low doses of meds. It took less than a week for me for the dizziness asspciated with the gabapentin to subside. I also started at 100mg of gaba. Third, 4 half 0,5 mg of ropinirole is 1mg over the day. Can you try to change that to 2 0,5 mg, eg afternoon and evening? Maybe each dose will then be more effective and the rls will be a bit better to deal with for several days. Then try to drop the afternoon dose. It is hard anyway so you may as well go a bit more towards’cold turkey’. Fourth, keep taking the clonazepam if you have enough, esp in the evening - it may help getting you some sleep. Fifth, print out several papers and leaflets if you don’t have them already. I’ll inlude the links

sleepreviewmag.com/2015/02/...

ncbi.nlm.nih.gov/pmc/articl...

Read through and highlight the relevant parts.

Finally, try to get to see an other md as your current one is useless and too headstrong, and get there armed with info. Also have a look on the rls-uk.org site. Write down the essentials of what you want to say and take someone along that you trust and who has seem you in your distress. One thing that may help is to stress that you need a strong painkiller like an opioid, as is written in the info, only TEMPORARILY. That is, for as long as the withdrawal symptoms last. When they subside it is time to review you meds.

Take care, stay strong; you can do this. And keep writing if you feel desperate. Going through this alone is no fun.

PS. We understand!

Hey Sunshine458. Many of us have endured what you are experiencing with much the same distress that you expressed in your message. I am really sorry that you have to suffer like this, and that you do not have a Dr. that can provide better support. Look on the home page of RLS Foundation web site rls.org and you will find a listing of RLS Clinics and Dr.'s who treat RLS, at least in the US. I'm not sure if they provide any information outside the US. I hope you are near a Clinic. As my Dr. said, everyone is different and their RLS must be treated as an individual not a generic problem. When I was withdrawing from heavy doses of pramipexole, a dopamine agonist like ropinerole, I tried 1200 mg of gabapentin with no help. I had some oxycodon/acetaminophen pain meds, that I had not used and found that 2 would put me into a hard sleep. After visiting the Clinic, my Dr. recommended 600 mg of Horizant. This is a variation of gabapentin. I explained to him that it had not worked for me before. He insisted stating that it does not require a gradual build up in dose and, if it will help, shows results right away. This was some time, well into my withdrawal period, but as he stated, it gave me a good nights sleep, the first night.

Sunshine, I do not know if any of this, other than a good RLS Dr., will help, but it is my experience, for what it is worth.

And, do not lose hope, there is an end to the awful experience that you are enduring, once you are coming out of the withdrawal.

Best of luck to you.

I understand and although I dont have direct answers, I am trying cdb. I can let you know how that goes but it will be a few weeks before that happens. It is supposed to help control the rls without any other drugs, and I should be able to go off ropinerol after a short time. I wish I had answers for you sooner. I have prayed for you to get the answers you need.

I agree completely with Lotte and Billdel. Getting off The last 0.5mg of Ropinirole is literally hell on earth. You cannot do it without an opioid so find a US physician who will prescribe them.

It’s only during withdrawal and then Horizant can be taken. It’s only available in the US and it’s better than Gabapentin.

You won’t feel human until 3 weeks after last Ropinirole dose. Change doctor ASAP and find one who understands DA withdrawal.

Stay strong

Agree totally with all the excellent advice given above.

Just to add that Clonidin is very effective in helping with the lady few days of withdrawal- when you finally make the break. Also Diazepam 2mg at that time will also help keep you calm during that hellish spell.

Any doctor refusing you such medications short term should be reported for cruel and irresponsible attitude.

Read up " Nick the Turks" journey on this site for a heroic story in getting through what yogetu are experiencing.

You can and will get through this.

Cheers.

Hey sunshine, I don’t know what state you reside in, but after trying ropinirole, gabapentin, and something i can’t rememeber, me a 21 year old 6’2” male weighin 140lbs. The pills made everything worse. The next choise was my last choise which was Valium, but then my doctor recommended i try cannabis to treat the symptoms. Living in Florida, getting my cannabis card was a nightmare. It’s the only thing that has worked for me so far that does not have withdrawal symptoms.

I know it might still be seen as taboo or looked down upon, but everything is worth a shot for a good night of sleep

I went through a gruesome withdrawal too but I have got through it with the help of everyone here. I discovered arthrocann, a canabis cream that I put on my legs and it has helped enormously. Also, have you tried Kratom? there are many posts about it here - I find this works and took a small dose when I was bad and it helped me sleep and kept me calm, nothing else. I have taken it only about 5 times so far this year and I am so much better and don't take any other drugs at all now,(after 17 years on pramipexole) Just knowing I can take Kratom helps me relax and sleep. best of luck with it all, it really is so difficult to explain to anyone who hasn't gone through it but I few of these posts may help a doctor understand.

Hi Sunshine

Have you tried magnesium. I find Floradix magnesium orally before breakfast + Dead Sea magnesium shower gel, magnesium lotion, then magnesium spray before bed works wonders. I am still on 1 mg Ropinerole ( down from 1.25 mg ) at 8.30 pm.Neurologist told me to keep increasing Ropinerole up to 4 mg but I reduced it instead.

Hi Sunshine,

I know what you mean! It is pure HELL, and trying to get others to understand what it’s like is like pulling teeth that will never come out.

Here is a list of things that got me through my period of complete hell on Earth (a.k.a. Augmentation from Pramipexole):

-compression stockings: the tightness these provide helped calm my movements to an extent

-a hand-held heated massager

-pounding water directly on my skin by spending time in the hot tub at my local pool and/or using the jet spray option on my shower head at home

-«Relaxing Leg Cream» by Magnilife. I noticed you’re in the States, so you can get it at Walgreens

-Magnesium Oil

-Epsom Salts (although I see you’ve tried this)

-3 exercises in particular that can be found halfway down this website:

healthline.com/health/restl...

- Lidocain Plus Pain Relieving Liquid: a rollon liquid that is designed to numb the nerves to an extent. Although this is meant for small surface areas, I didn’t give a damn and just rolled it over both legs. It worked for me! This can also be found at a US pharmacy (I think Walgreens, but not sure since someone got this for me)

-a cooling gel like they use for sports injuries.

I hope at least one of these helps you. Here are also some things that I use to de-stress (with the last one used to wake me up):

-Dr. Hauschka’s Moor Lavender Calming Body Oil: I rub this behind my ears and on my neck whenever I’m feeling really anxious. It really helps calm me down. You can get this on Amazon.

-«Head Ease»: an aromatherapy blend of organic ingredients. I massage this onto my pulse points and it really helps calm me down!

-Lavender Oil

-Rosemary Oil

I’m glad to hear you’re getting your bloods checked soon. Remember to get the actual Ferritin level number instead of accepting normal. I think it needs to be 75+ for those with RLS, but can someone check me on that?

Please remember that you are far from being a hypochondriac!!! This syndrome is more than weird and has very weird symptoms that, when talking about them aloud with someone, might sound completely surreal. Please remember that your symptoms are very real!

Also remember that you can and will get through this! It is extremely tough (heck, I felt despaired that I would ever get through my 8-month Augmentation period), but it does pass!!

Good luck!

Hi there,

It took me at least 3 weeks to come off Pramiprexole and was then put on Ropinirole which made me feel dreadful. After two weeks I could not take any more and went to the Neurologist who put me straight away onto Neupropatch and I have not looked back. Now on 3 mg and 0.5 mg of Clonazipam at night, need to watch my TRIGGERS though. Best of luck!

hi Sunshine458 I know exactly what your going through I have just weaned of repinarole took me 8wks but its still in my system it may take another 8wks but I am going to do it, I don't give a damp on how long it will take (I couldn't have done it without tramadol)but I am going to succeed & so will you. You have to get some opiates (painkillers) to help you. You will not be able to do it on your own, you must get some painkillers to help you (opiates)if your GP wont give them to you cant you just go out & buy them from your pharmacy? You will get through this, but you must have help, meaning painkillers.(opiates) I know what you are going through so hang in there. Take care X SUE

HI, Sunshine, you should NEVER be ashamed or embarrassed. Obviously, that class of meds is not for you. Compulsive behavior such as gambling or shopping can happen, and I know lots of people who have been thru that, so you are not alone.

Hi Sunshine, it is awful to hear of your misery and to think of you going through this on your own. It is very hard to withdraw from a dopamine agonist such as ropinerole but, as many on here have shown, it is completely possible and in due course you will be passing on your words of comfort to some other poor soul who has to endure this horrendous experience.

I just wanted to say that you should really try to move towards eliminating the ropinerole and not be tempted to return to it for temporary relief. As long as you keep adding it back into the mix, you will prolong the misery of the withdrawal period. Use something else - either tramadol or kratom (NB DO NOT TAKE THESE TOGETHER - Kratom should not be taken with another opiate). I would second what others have said that it is a good idea to start taking Horizant. Even if it is not completely successful straight away it can settle in after a week or two and provide quite considerable relief. Horizant can be taken with tramadol or kratom. I wish you strength, Sunshine, and send virtual hugs and support.

Hi Sunshine 😊 I understand you I have felt the same way. It’s horrible what you are going through. I have tried myself to stop this medicine for years I can’t so I just have cut back to 1milligram of extended release Pramipexole and that helps me. I use to take 2 milligrams. Everyone can say try Emson salts rub this stuff on you and everything else but really that doesn’t do anything I know I have tried. The feelings you get are so bad no one should go through that. We need strong pain relievers to get off of this medicine. Can’t just cut back doesn’t work unless we suffer. Try to find someone that will give you pain relief medicine. Here’s what I feel the Drs that put us on this medicine should help us get off of it there is no excuse for it!! Sorry I get mad about it!! I would love to get off this medicine I need help myself if you find something that helps I’m all in to learn

does weaning off ropinrole cause physical symptoms other than worsening of rls

Hi Sunshine

How are you doing now? Have you managed to access cannabis, or kratom, or an opioid like methadone? Or all of the above?

I am at the stage where I keep the whole lot to hand in case of falling off a cliff.

It is mostly illegal, but bad laws should be broken. One of your presidents said so.

What are they going to do?

Send a big gaggle of feisty old ladies to jail? I think not.

That your doctor should refuse to assist really shocks me.

I hope you have found another, one who is capable of reading all the things that many of us have already read.

It is not as though the information is hard to find, just an 'Enter' away.

Bless.