Dayvigo

[welschrispy]

I have had chronic RLS for many years. I am trying to get off Pramepexole and having a horrible time. I have been taking Zopiclone for insomnia. It sort of works but I sleep walk, do weird things and have occasionally fallen.

My Neurologist claims that his patients cold turkey from Pramepexole and that my severe withdrawal is imaginary(!) He prescribed Dayvigo for my insomnia. It's very expensive and doesn't seem to help very much .

I note also that, according to the company web site, Dayvigo is not recommended for people with RLS. Neither is it recommended for people with depression or Sleep Apnea and I have both. (I am also 75 and I gather there is not much to be done about that either)

I had lurid dreams the first night I took the stuff. That was OK because ,at least I was sleeping! (Actually the dreams were great but I'm not about to tell my long suffering wife about what happened!) But by the third night I was awake for most of the night. I also notice that I am very speedy during the day. The company web site says it takes a few weeks to take effect. ( I doubt I shall live long enough to see the day but I'm willing to try)

Has anyone tried this medication? Does anyone know why it is not recommended for people with RLS? I would ask the Neurologist but I'm not very confident about him and I don't have a GP.

I'm in Canada and we spent all our money developing the Tar Sands and logging Old Growth timber. I suppose we should be happy to spend our Golden Years trolling the food banks.

It's getting light outside. Depression? Never heard of it!

Any advice or information (Besides find a different Neurologist!)would be most welcome.

[SueJohnson]

Ask for lunesta which I take and which works very well. No sleep walking. And yes change to a different neurologist (🙂)

[welschrispy in reply to SueJohnson]

Thank you Sue. I will try lunesta. I need something to give me a break from the Cannabis. The battle rages on!

[Joolsg]

The problem with Dayvigo and zoplicone and any sleeping tablet taken during withdrawal from dopamine agonists, is that they knock you out BUT usually the severe RLS withdrawal symptoms break through. You are then woken while heavily sedated. The risk of serious falls is then more likely.Withdrawal symptoms don't cause classic insomnia. They cause severe 24/7 RLS

That's why Cannabis or low dose opioids are better during withdrawal.

Your neurologist needs to update his knowledge and read the research on withdrawal from Pramipexole. Withdrawal symptoms are very real. DAWS is very real. Cold turkey can be fatal.

[welschrispy in reply to Joolsg]

Thank you for your reply. This totally jives with my experience. I am trying again the reduce my Premipexole intake. I am hoping to get off the stuff by using Tramadol and Gabapentin. I tried Buprenophine Naloxone briefly but the side effects were horrible so I am back with my old regime. And yes I use cannabis for sleep. I currently take 1.25 mg Premipexole. Is there anything else I should add to the mix?

As for the neurologist, I think he should be struck off. When I told him how bad my withdrawal symptoms are he said I should see a shrink. He is good at writing prescriptions though and gave me a years supply of Tramadol. I plan to use it strategically. Increasing the dose when I cut down on the Premipexole then reducing the Tramadol and so on. I know it's going to be tough but I want to be Premipexole free in one year or even less, then stay on a low dose of tramadol.

I think the Sarno method may be making a difference but supercharging the emotions as he advises is not without it's hazards!

[Joolsg]

Getting off Pramipexole is hellish for nearly everyone. I hope you can reduce it slowly without severe withdrawal symptoms.Buprenorphine caused terrible side effects for me. But it was literally last chance saloon, so I dealt with each side effect, and managed to settle them all. For nausea & vomiting, medical cannabis was brilliant, for opioid panic attacks, 25mg pregabalin worked well. For sweats, a small night dose of cetirizine anti histamine really helped.

Tramadol can work well for many, but it is the only opioid that also causes augmentation, like the dopamine agonists.

If that happens, you could try codeine or oxycodone.

Ensure your serum ferritin levels are above 100, preferably 200 as that can reduce RLS and augmentation symptoms.

[welschrispy]

Thank you for this Joolsg. Yes I am anticipating troubles. I am trying to save the worst bit for a cabin on a beach in Mexico. I love to swim, then walk then swim. Margaritas to ease the rough bits. I can get hold of Codeine so thanks for that tip. Do you mean Tramadol causes RLS augmentation? Or Tramadol it's self augments? I'm not sure I understand this. I have had my ferritin levels checked but even that is not very clear because we use a different scale here in Canada... but I am on to it. One small step at a time. No cold turkey. I am down to 1.25MG from 6mg. It seems to be like Zeno's arrow. The target gets further away as I get closer to it. I imagine I will end up trying to split the last pill all the way to infinity. But I have no choice but to keep going.

[Birdland in reply to welschrispy]

I hope those Margaritas aren’t a trigger for you. Even the slightest bit of alcohol makes my RLS much worse. All the best to you. I took my last bit of Ropinirole a few years back after being on an extremely high dose for 16 years. Horrible withdrawal! Go as slowly as you need to.