Help! augmentation: My rls has been... - Restless Legs Syn...

Restless Legs Syndrome

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Help! augmentation

Katerina22 profile image
18 Replies

My rls has been awful a long time.My doctor believes i have augmented so he cuts down on pramipexol.I was 2×0.18 of pram at night.Then 1+a half 0.18 ,then 1 and since yesterday only half one.He wants me to stop pram at all in 3 days (from today).I was given a pill called lonarid which is a mix of codeine,paracetamol and caffeine to help me. I am concened because rls still bothers me even on lonarid.Should i be better when cutting down my dose?Because i am worse!!Thank you all!!

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Katerina22 profile image
Katerina22
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18 Replies

Weaning down off a dopamine med is not easy, and you might just have been weaning down to quickly. The codeine/paracetamol is not that strong to help take care of the withdrawals. Most when weaning off a dopamine med take just codeine, or tramadol. Getting off the last bit of a dopamine med it seems is the worse part, according to others on here who have gone through the same process.

Katerina22 profile image
Katerina22 in reply to

Thank you Elisse!I was worried because i thought it was strong enough and i still experienced bad rls!!May i ask you if it is "normal" to get worse rls during the withdrawal than when getting the normal pramipexol doze?(despite augmentation?)Thanks again!

in reply to Katerina22

What happens when you are going through withdrawals, is, because you have been taking extra dopamine to get relief. Now you are weaning off the med, your dopamine receptors are complaining, they have got used to having all that extra dopamine, so now your body has to re-adjust to not having that extra. :)

Joolsg profile image
Joolsg

It’s hell Katerina and the RLS is 1000% worse during withdrawal. I agree with Elisse- you should withdraw slowly over weeks/months & you’ll need tramadol or an opioid to help.

Once through withdrawal you need an alternative med like pregabalin or Gabapentin.

Look up Augmentation and withdrawal in the search box.

Caffeine makes RLS worse for the majority of people so the pills doctor has given you won’t help.

Katerina22 profile image
Katerina22 in reply to Joolsg

Thank you so much Joolsg!

Katerina22 profile image
Katerina22 in reply to Joolsg

My doctor will put me on Lyrica once i get through the withdrawal.I hope it will help.I need it so much to help!

Joolsg profile image
Joolsg in reply to Katerina22

I wish you strength Katerina. I know what you’re going through. Stay strong- it’ll be the hardest thing you’ll ever do BUT you will make it and once through withdrawal, you’ll have no RLS in the day. You may still have it at night but Lyrica ( pregabalin) will work well. You should start it soon as it takes about 2 weeks to take full effect and you should build up the dose slowly.

I’m on OxyContin and Lyrica (cheaper generic version Pregabalin). I played around with timing of dose and find it’s most effective if I take 50mg an hour before bed and 100mg at bedtime.

There’s always someone around if you need to complain in the dark hours. Really hot baths and magnesium oil massages will help and tight compression socks.

Thinking of you

Jools

Katerina22 profile image
Katerina22 in reply to Joolsg

May i ask you Jools if you are constanly on oxycontin?Lyrica isnt enough to control your rls?Thanks again!

Joolsg profile image
Joolsg in reply to Katerina22

Hi Katerina,

I was originally on just Gabapentin and it did nothing for my RLS so I switched to OxyContin and that was much more effective. The downside was it gave me dreadful panic attacks and wakefulness so I emailed Dr Buchfuhrer and he recommended adding Lyrica as it was sedating so would stop the panic attacks and aid sleep.

He was right.

So yes, I am on both OxyContin and Lyrica but I have very severe RLS and I still get it every night 2 or 3 times . I don’t have any in the day though.

Most people manage on OxyContin alone or Lyrica alone.

Jools

Katerina22 profile image
Katerina22 in reply to Joolsg

Ι am concerned about oxycontin.Isnt it a narcotic opiod?Can someone take it on a regular basis without getting addicted?Thanks!

Joolsg profile image
Joolsg in reply to Katerina22

There's a difference between dependence and addiction.

I am dependent on my RLS drugs because I won't get sleep or relief from RLS without them. I may also become tolerant but addiction is where you crave the drug and need higher amounts.

Oxycontin is prescribed in low doses for RLS and there is a low risk of addiction UNLESS the person has a history of drug abuse or an addictive type personality.

I posted a link about a month ago showing a video from the top USA experts confirming that opioids should be made available for RLS sufferers. Take a look at it by clicking on my posts.

Jools

Hooc profile image
Hooc

I would be very interested to see how you progress over the coming weeks it gives me hope!

Joolsg profile image
Joolsg in reply to Hooc

Hope,

I recall Lotte thought you also might be suffering Augmentation and she sent you a link.

You are on highest dose of pramipexole & probably in Augmentation.

Every day there are people who come on here desperate for help because there RLS is getting worse.

There is hope and a way out but it involves withdrawal from Pramipexole.

Loads of us have done it and got through to the other side and it does get better. There are other drugs which help 95% of us.

I hope you manage to get off pramipexole slowly and onto something like Pregabalin (Lyrica) which helps you.

Good luck

Jools

Oh, I’m so sorry!

I augmented on Pramipexole in 2015.

This is what got me through it:

Hand massage

Heated massage

Hot showers - especially while using my jet-sprayer option to pound the water against my skin

Magnesium oil

Epsom salts

“Relaxing Leg Cream” by Magnilife

Compression stockings

Drinking plenty of fluids

3 exercises in particular. Here’s the website, with the exercises halfway down:

healthline.com/health/restl...

Listening to upbeat music (and especially “what doesn’t kill you makes you stronger” by Kelly Clarkson and “I will survive” by Gloria Gaynor).

Please stay strong. Augmentation is extremely tough, but you will get through it. My first post was something like “Yes! There is life after Augmentation!” It will be hard, but you will emerge stronger than ever. One of the results of my Augmentation has been to become ultra-sensitive to anyone mentioning me being idle in any way, shape, or form. I get very angry (insulted even) at the mention of that (or of people who attempt to equate my sleep problems with theirs). Augmentation is the true meaning of torture and suffering, but you will get through it.

Stay strong and know that we are always here for you!

You can do this!

Jessica

Katerina22 profile image
Katerina22 in reply to

Τhanks so much for the support!!

Madlegs1 profile image
Madlegs1

Check out "Nick the Turk" s story of successful getting off Prami.

Heroic.

eglimark profile image
eglimark

I have a friend who has had RLS bad for 15 years or more. Her medication is Carbo/Levo ER 50-200 at 4 and bedtime, half a mirapex .25 at 4, a whole pill at bedtime. And 150 mg bupropion in the morning. She has done well. Anybody else take the Carbo/Levo for RLS? I think it's used mainly for Parikinsons, but her neurologist put her on it years ago. I'm new to this "game," so just reading and listening. Right now the benzo I take in addition to mirapex is knocking me out and leaving me dazed.

eglimark profile image
eglimark

Someone explain the withdrawal process for me. Are you withdrawing without going on something else? I've read about rotation of meds in order to avoid augmentation. But cold turkey? I would be unable to sleep at all as my rls is constant, not sporadic.

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