More cold Turkey!: Many thanks to all... - Restless Legs Syn...

Restless Legs Syndrome

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More cold Turkey!

welschrispy profile image
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Many thanks to all who have responded to my Cold Turkey post. I was very moved by the support I received and thank you also for the excellent advice. It is now 8 weeks since I last took Premipexole. I am still suffering chronic RLS debilitating Nausea and anxiety. I don't feel like I can take much more.My doctor, who is keen to help but wary of opioids prescribed me an antidepressant called nortriptyline 25mg. I took one and it nearly killed me. I had the most terrible 24 hrs and I will not be taking that again. Is Nortriptyline any good? am I being a wuss? I keep saying I don't need antidepressants I need to get of premipole.Just get me off the DA and I will have no need for suicide.I have another meeting with my doctor next week and we are going to"consider" a low dose opioid. I plan to swap this for the 300-400mg tramadol which, I gather, is not the best opioid. I took buprenorphine in the past and had problems with Nausea and constipation. I didn't like it very much but after the last 8weeks of hell it is starting to look more attractive! Any advice about this would be most welcome.One last question. Is pregabalin better than Gabapentin?It's been very hard not to give in to total despair. The worst thing is not knowing how long the withdrawal process will last. I thought it would take about 3 weeks. That is certainly not so in my case. Can anyone hazard a guess?

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Joolsg profile image
Joolsg

I'm so sorry you're going through this.Your doctor should know that ALL anti depressants trigger/worsen RLS, as you discovered with the Nortryptiline.

You're not 'depressed'. You are experiencing typical withdrawal symptoms from Pramipexole. Your brain has been deprived of the 'feel good chemical, dopamine. You will feel down, anxious, unsettled.

It will pass.

Pregabalin is absorbed better than gabapentin, so can be taken in one dose. In the UK, it is cheaper than gabapentin, so more commonly used. In the USA, it's more expensive, so gabapentin is more widely used. Side effects may differ for individuals so some prefer one over the other.

Tramadol is the ONLY opioid that ALSO causes augmentation, like Pramipexole, so switching to Buprenorphine or methadone would be better, as you can make a straight swap from Tramadol, without having to.go through Tramadol withdrawal.

The nausea on Buprenorphine can be resolved with medical cannabis or Zofran. It does usually settle within weeks.

The constipation can be resolved by adding 2 litres of water to your diet, eating more brassica and taking magnesium citrate every evening. Or asking your doctor for constipation treatment.

At the moment, you are taking tramadol and nothing else, but the tramadol is possibly working against you.

Ask your doctor to read RLS-UK website or rls.org website so they can see the treatment available and the medications to avoid.

Stay strong, you will get through withdrawal and the RLS will settle with the correct treatment.

And, make sure you get full iron panel blood tests and raise serum ferritin above 100ųg/L, preferably 200ųg.

707twitcher profile image
707twitcher

Just a few observations:

Withdrawing from a dopamine agonist (DA) like pramipexole causes something called DAWS (DA withdrawal syndrome). Depression and insomnia are major results. That is why people advise tapering down slowly - to lessen those effects. If you stopped cold turkey, it is no wonder that you have had 8 weeks from hell. Presumably these symptoms should start abating soon.

Given that you have been off the DA for 8 weeks, I can understand not wanting to go back. But if things get really bad for you, keep in mind that re-starting pramipexole is one option. Then do a slow taper off of whatever you start back on.

I'm a big buprenorphine fan (like Joolsg I think). It resolved my RLS during my pramipexole withdrawal and is all I use to control my RLS now. I'd suggest starting with sublingual pills or strips at a low dose (maybe .2 mg or so). If that does doesn't work within an hour, add a little more until you find a dose that works for you. I found that it took my body a good month and a half or so to adjust to the buprenorphine. That included side effects diminishing and being able to stabilize the dose as the body gets used to it.

Joolsg advice about cannabis for nausea is good.

Buprenorphine has a very long half-life (30 hours +). So one dose stays in your system for over a week (obviously with diminishing effect over time). But it also acts fairly quickly (30-60 minutes for most). That is why it takes time to find the optimal dose. Anytime you change the dosage, it may take a week for your body to stabilize because you have a cumulative effect going on for all the medication you have taken in the past week or so. Don't let that stop you from adding more as needed. Just realize that your reaction to the new dose might be a little different later than it is immediately.

I found that constipation did not resolve after 2 months, so I switched to the transdermal patch (Butrans) that you change every 5 or 6 days. That immediately improved the constipation issue. But I wouldn't suggest starting with the patch because I don't think you can find the optimal dose (the lowest possible dose that eliminates the RLS) any way other than the pills or strips that enable you to adjust dosage up or down easily and often as you experiment with dosage. Once you know the optimal dosage for the sublingual, and you have had some time to adjust to it, then you can convert to a patch if you still have a consitpation issue. For me, I was using .33mg of sublingual nightly, and that translates to needing a 7.5mcg per hour patch.

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