Quitting Ropinirole ... Weeks 3 to 5 - Restless Legs Syn...

Restless Legs Syndrome

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Quitting Ropinirole ... Weeks 3 to 5

Hazuki profile image
10 Replies

Hi all,

It's now been 5 weeks since my last ropinirole. I'll quickly summarise my experience here and I have a couple of questions for those of you more experienced than I (questions at bottom)

Week 1 and 2 can be found here

Week 3 - RLS symptoms stayed the same but now have started experiencing waves of deep sadness, which is pretty horrible as you can imagine. Increased my dose of gabapentin and changed the times I take it to: 400mg at 19:00 and 500mg at 22:00.

I also take 2.5g kratom and vape a little bit of cannabis right before bed.

Most nights I slept for 1 to 2 hours, them woke with moderate RLS symptoms, I would go watch TV, take another 2.5g kratom, wait 30 mins then go back to bed and continue to sleep until about 9:00. Which is a vast improvement.

Unfortunately though I've now started feeling really really sad, often suddenly. Folks on here reassured me that it's a normal dopamine agonist withdrawal symptom and will eventually pass.

Week 4 - Everything remains the same, the same symptoms, the same sleep patterns, same meds.

Questions:

I'm assuming this is still a pretty standard experience and none of this is weird, would that be correct?

I want to add more gabapentin, can I now just start taking 600mg at 19:00 and again at 22:00?

Thanks again!

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Hazuki
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10 Replies
Joolsg profile image
Joolsg

That sounds very normal for 5 weeks after stopping Ropinirole. Your D1 dopamine receptors were over stimulated for a long time & it takes MONTHS before the symptoms settle. Dopamine is the 'feel good' chemical and now you are without it so your brain has to adjust.If the depression/sadness is overwhelming do ask for help. Safe anti depressants are Bupropion and trazodone but most GPs aren't familiar with them. Have a look at Dr. Buchfuhrer's website at rlshelp.org and you can email him using the yellow box. He has lots of questions and answers on DAWS and he also recommends trazodone/wellbutrin.

Your sleep is actually very good for this stage. Increasing the gabapentin to 600mg twice in the evening may improve it and that will help your mood. You would then be on the average dose. There is still room to go up to 2400mg if you still have RLS.

One other thing to be aware of. Gabapentin and pregabalin (and opioids) can also cause depression in some people so just keep an eye on things.

Hazuki profile image
Hazuki in reply to Joolsg

Excellent service, thank you

SueJohnson profile image
SueJohnson

Yes you can add more gabapentin, but add only 100 mg every 2 days. Increase the 2200 one 1st to 600 mg and then add to the 1900 one only I would move it up to 2000 so only 2 hours apart.

Hazuki profile image
Hazuki in reply to SueJohnson

Thank you Sue very helpful, I will do that

SueJohnson profile image
SueJohnson

The reason to only add 100 mg at a time and wait 2 days is so you don't increase it more than you need to, to control your symptoms.

HipHop1972 profile image
HipHop1972

Hi Hazuke, I think you have done really well to have managed to reduce your Ropinirole medication to zero and have been free of it for 5 weeks. I can’t comment on the other medication you’re taking but I do recognise the emotional side effects you are experiencing. I’m on that journey to be Ropinirole free but probably not until early next year. I am an emotional person anyway and can be deeply moved by music, children singing like mine used to do when little, but I find that is greatly increased and am embarrassed to admit but I find myself crying a lot even at little things. I don’t really mind wearing my heart on my sleeve but like you I hope that the increased sensitivity is a side effect of Ropinirole withdrawal, one sure it is and wish you well with your onward journey.

Hazuki profile image
Hazuki in reply to HipHop1972

I completely understand, I went from very rarely crying (less than 20 times since being an adult, I'm now 40) to crying most days! Like you I'm often set off by music.

I'm a self employed game designer, me and my wife run our company and make video games for games consoles and PC, we were doing well until I fell ill with widespread chronic pain and chronic fatigue and was eventually diagnosed with fibromyalgia. This made work super difficult, the brain fog alone was enough to stop me from coding and 3D modelling as those skills require lots of thought.

Eventually I started being able to work again, even if for just a few hours per day, but then ropinirole augmentation hit me and I've been a physical and mental wreck ever since.

As a game designer I play lots of games, I've been playing The Last of Us pt.2 recently, it's quite a serious game, and the main character travels through the US during a zombie outbreak, every now and then she finds a working guitar, tunes it and begins to play and sing this super sad song... it just breaks me every single time, even thinking about it has my eyes all teary!!!

Kezza1975 profile image
Kezza1975 in reply to Hazuki

Hi, I have reduced my Ropinirole down to 0.25mg and have been prescribed Quinine instead. Waiting for prescription as GP forgot I send to Pharmacy. I find Ian very emotional and tear up watching TV programmes which is not like me. Still struggling with RLS symptoms. I do sleep but I am just so tired. Is this a withdrawal symptom?

Hazuki profile image
Hazuki in reply to Kezza1975

Hi Kezza, it sounds like you're having a very similar experience to me, I forgot to mention that in the last week my appetite has just vanished, I've lost a lot of weight very quickly, even when I'm hungry my appetite disappears as soon as I see or smell food and I start feeling a little nauseous.

I've never cried because of a TV show before, not even as a kid, but since coming off Ropinirole I'm crying most days, although, it has started to feel a little better... I'm not getting hit with the wave of immense sadness at about 2pm every day like I have been.

Stay strong, there is light at the end of the tunnel (or so I hope!!)!!

Also, I'm not the expert on this but my understanding is that quinine is either mostly or totally useless and you really need to be on Gabapentin and an opioid like tramadol.

Kezza1975 profile image
Kezza1975

Hi, good to know it will get better. I tried Gabapentin for my Fibromyalgia and didn’t get in with it. Weaned myself off Duloxetine recently as that made the restless legs worse. I really want to go without drugs as much as possible. Will give the quinine a go tonight and see. Thanks for your advice.

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