4 DAYS INTO COLD TURKEY ON CLONIDINE ALL IS GOING PRETTY WELL EXCEPT. . .need more advice at this point.

[Bganim1947]

HI ALL—AN UP DATE and advice still needed: I am 4 days into cold turkey, stopped 2 mg. regular Ropinerole Friday. No augmentation or anything, not a twinge the first 24 hours.

The second day, I had an augmentation response half way through the day, after taking my a Clonidine 0.01mg. Took some Iron Bisglycinate, gabapentin and tramadol as usual, it subsided in an hour. All was quiet the rest of the day until 9 PM, had leg tingles all night, couldn't sleep.

Asked my GP if I could take 2 Clonidine the next day since I didn't sleep at all that previous night. She said yes. Took one at 3 PM and had leg tingles within an hour. Took my iron and gabapentin and tramadol, all calmed down within another hour. That evening I took another Clonidine, and an hour or two later had another episode, but only my legs. Took iron Bisglycinate, gabapentine and tramadol, and it quieted down in an hour after walking around for half an hour. Slept well that night.

Next day, yesterday, same thing.

Today, waited till 4 PM to take Clonidine. Nearly an hour later, leg tingles again. It seems to be getting somewhat less intense, but four days into cold turkey, I thought it would all begin to subside markedly.

I'm getting very concerned that I may be off the Ropinerole, but still have uncontrollable RLS in my legs. I don't know if I am still going through cold turkey and maybe after 7 years on Ropinerole at such a high dose, it takes longer than 4 days? Or if I still have uncontrollable RLS and the Iron Bisglycinate, gabapentine and tramadol aren't enough to control it? Good God, I do not want to go on another dopamine agonist. Advice needed please. Where do I go from here? What can I expect now? How long can it take to really cleanse the body of Ropinerole?

[Hidden]

I would say you are still going through withdrawals. The 2mgs stopped is a big drop in one go. It can take more than 4 days to start to feel the benefit of not taking any dopamine. I am sure some who have gone through the same will be able to tell of their experience.

[Madlegs1 in reply to Hidden]

Right on Elisse- far too short to be expecting release already.

Read Nick the Turks story for the real deal.

You have gone down quite quickly- and withdrawal is never easy.

Please also check you are not taking any triggers- either meds such as antihistamines or SSIs.

Foods such as fizzy drinks (purejuices are good - I find pure pineapple really good)

Artificial colourings, rising agents ( biscuits etc,)icecream and so on and on and on.😢

Basically- pure clean foods , not processed gunk.

Stay with it and keep going. You'll get there in the end.

And you are worth it!😆

[Joolsg]

I had dreadful withdrawal symptoms for at least 14/15 days after my last dose of ropinirole. According to Dr Buchfuhrer, that is normal. Everyone will react to withdrawal differently. Nick the Turk went days without sleep and with RLS symptoms 24/7. I was the same for weeks during withdrawal. You were on a high dose for a number of years so your body will need to adjust and try to start producing its own dopamine. You have done really well so far- you have managed to sleep which is brilliant.

You may be one of the lucky few who can manage on just iron bisglycinate- but keep taking the tramadol and gabapentin for at least another 10 days then slowly reduce the tramadol to see if the gabapentin on its own alleviates the RLS. Gabapentin with another med like codeine in low doses may be more effective. If that doesn't help, there is pregabalin. Don't even think about another dopamine agonist for at least 6/12 months as you are more likely to augment.

Hang on in there. Things will continue to improve and you can then tweak any meds to achieve some good night's sleep.

[Bganim1947 in reply to Joolsg]

Thanks Joolsg,

Isn't pregabalin Lyrica? And isn't that also a dopamine agonist? Just wondered. Reassuring to know that so many of you went through it for more than 4 days too--much more it seems. I thought something was going wrong.

[Joolsg in reply to Bganim1947]

Yes pregabalin is the cheaper generic name for lyrics which is a alpha 2 delta ligand. It is similar to gabapentin but with fewer side effects. It is not a dopamine agonist and doesn't cause augmentation.

Take care and ask for help if the withdrawal becomes difficult.

[Bganim1947 in reply to Joolsg]

Do have an email for Dr Buchfuhrer? I'd like to check in w/him regarding his suggestion for a long range plan. I've read his paper on long range treatment plans following when augmentation occurs in other first line treatments like Repinerole. Have you seen that paper? Really interesting. I'll give you the link if you like. BTW: Made it through last night w/a great nights sleep even though one leg was a little twitchy--apparently not enough to keep me awake.

[Joolsg in reply to Bganim1947]

You can email Dr Buchfuhrer via his website rlshelp.org and use the letters page and there is a little box which says "email".

If that doesn't work try

[e-mail]

He should respond within 24 hrs

[Bganim1947 in reply to Joolsg]

Thank you again Jools. I had very good day today, only a few minutes of an RLS sensation in my tummy when I laid down for a nap. Got up took my iron 2 gabapentin and 2 tramadol, and was gone in 15 minutes. It's been hours and it hasn't returned yet.

I'm getting hopeful that I may be coming to toward the end of the withdrawal???

Looked online today at options for RLS non-dopminergic treatments once this is finished. It does look like Lyrica, as you suggested might be my best bet, although it's a short-acting option, meaning only effective for six months to a year, it could buy me some time. But I'm going to try first increasing my dose of gabapentin from 900 a day to 1200 or 2400 as my GP suggested. She said I could even go to 3600 if I needed to. I'm hoping that might do it with a little tramadol mixed in.

Gabapentin encarbile is out of sight expensive, not covered by insurance.

The other option might be clonidine, since I read that it is used for RLS. It's inexpensive, which Lyrica is not, and it seems to have helped me a lot over the last several days. I'll also check out what Dr Bruchauer has to say.

Thank you, thank you so much for all your help Jools, and for being there through this very difficult time for me. If there's anything I can do to help you in anyway, please let me know.

BTW: I'm an expressive arts therapist who uses art to help people heal from cancer and other chronic and life threatening illnesses, if you have any interest in art let me know. I've written several books on the subject Check out Art and Healing and Visual Journaling on Amazon if you're interested. I'd love to help you in anyway I can.

[LotteM in reply to Bganim1947]

Way to go, Bganim!

Bit why increase doses if things are sufficiently under control? Or aren't they?

Remember that less is more in the long run.

[Bganim1947 in reply to LotteM]

Things are not under control. That's the problem.I'm trying a number of approaches to keep this with-drawl situationfrom over-Taking me. Once I'm thru w/it, I need a new approach to manage my RLS. Can't go back on a dopamine day agonist again. My Gabapentin as I'm taking it now isn't near enough to keep it at bay. It was my GP who suggested I increase my Gabapentin. If I can stay on it even at higher doses it is far better for me in the long run as it won't cause augmentation or other horrible side effects.

[Joolsg in reply to Bganim1947]

Thanks so much for your kind offer. I'll definitely look up your book. I'm so sad that your meds are restricted by insurance costs. That is the awful consequence of a private health care system. Here in U.K. we have the cheaper generic form of lyrica " pregabalin " which the NHS is happy to prescribe.

You may find gabapentin works better at the lower dose with codeine or another pain killer like your tramadol.

Onwards and upwards.

[LotteM in reply to Joolsg]

Sorry for misunderstanding, Barbara. I got the impression that at least your diurnal (augmentation) symptoms are better since your cold turkey, but you are still left with strong rls (withdrawal) during the night. Or did I still not get it right? If so, blame it on my bad nights too!

I have been reading a lot on the forum about augmentation. I intend to also go cold turkey. I have only been taken ropinirole for not yet a year, and have been on 0,75 mg max (since January). Cut down to 0,50mg last week.

It has wrecked havock on my already poor sleep quality and pattern. Like last year, before the rls diagnosis and ropinirole, I get some 3 bouts if max 2hrs sleep. In between: pacing or stong distraction (frantically reading on this forum!)

As this reduced dose is already increasing my symptoms, I now want to stop the ropinirole altogether, as I have not taken it too long and at a relatively low dose. Might as well get it over with.

I have been 'playing' with taking an old leftover codeine tablet (10mg), topped up after half an hour with a paracetamol, during my first wake-up. Usually I fall asleep fairly easily; I take the ropinirole at 8PM, since a week gabapentin 100mg (going to up that one) and some CBD-oil just before bed. I may lose that when I drop the ropinirole. We'll see....

Now I want to ask advice from you, jools, elisse, madlegs, involuntarydance, raffs and others I have forgotten, but whose posts and answers I have been reading.

I am going to ask my GP for some new codeine to help me through the withdrawal. What dose do you recommend? Or should I rather ask for tramadol or something else? If so, why and what dose?

(I hardly have rls during the day, provided I exercise enough and keep moving regularly. As I am on sick leave and having to work only 3 hrs a day (takes me all day, though) that is feasible enough.)

Thanks in advance for tour thoughts on this one.

Lotte

[LotteM]

Hang in there.

From what you are describing it seems that the closinine it eliciting the rls???? As it starts c. 1h after taking it.

Keep up the diary of your reactions, may prove helpful in sorting things out.

[Retren]

Aug2i really dislike abbreviations as most of the time I have not got a clue what they stand for.what are SSI?I live in the United States and that one means social security .thank you for any enlightenment.

[Joolsg in reply to Retren]

SSRI are selective serotonin reuptake inhibitors, a type of anti depressant that worsens RLS. There are SNRI as well which are serotonin-norepinephrine reuptake inhibitors, also anti depressants.

As you can see, perhaps easier to call them by their abbreviated forms.

Hope that helps.

[Retren]

Aug 3 Thank you how do we remember all this on top of everything else?

[Bganim1947 in reply to Retren]

It gets easier in time. Not to worry. We have to abbreviate with so little space to write, and most of us have little patience to spell things out because we are out of our minds in RLS discomfort!!!!

[Joolsg in reply to Retren]

I wish I could claim to know all these things off the top of my head but I don't . I have Dr Buchfuhrer's book - " Clinical Management of RLS" - the RLS bible.

[LotteM in reply to Joolsg]

So that is why you are so knowledgeable! "Reading from the bible". 😘

Keep up the good work, though.