Exhausted

[silleecharle]

48hrs, no sleep, feel like I cant cope, want to cut my legs off 😡

[Joolsg]

Hi silleecharle,

Did you start reducing the pramipexole as everyone advised last time with the help of a strong pain killer?

If you are in the withdrawal stage you will get little or no sleep until you are completely off the prami. At the really difficult withdrawal stage you could try 50mg tramadol every 4 hrs.

Have you started gabapentin or pregabalin yet?

jools

[Hidden in reply to Joolsg]

I am asking the same as Jools .

[silleecharle in reply to Joolsg]

Hi jools, no I havnt started reducing yet as trying to get an appointment with a doctor who understands is sk hard but clearly I need to asap as the 4 a day arnt working now, its becoming unbearable, iv cried so much, il definitely be making an appointment tomorrow with a doctor I trust, this is driving me crazy throughout the day too.

[Joolsg in reply to silleecharle]

The sooner you start reducing, the sooner you can get through withdrawal. This hell will only go away once you are off the pramipexole.

At least one person a week on this site is in your situation.

Sadly, most doctors and neurologists are clueless about augmentation and withdrawal so you must educate yourself using all the links sent to you. Print off everything and take it with you to GP and start reducing the prami slowly.

With each reduction in dose, the RLS will flare up and you will need those opioids.

Look up Nick-the-Turk on this site and you can see he went through this a couple of months ago.

It's really hard, but once through withdrawal you will start to get some sleep.

Good luck

[flower-girl]

Oh you poor poor soul, my heart goes out to you on so many levels. I have primary painful RLS and over the last few months I have been reducing my use of opiates and Pregabalin by using ultra low doses of low dose Naltrexone. I am now off opiates and have stopped Pregabalin...I never realised that Pregabalin could cause such a range of withdrawal symptoms. However, I'm now taking Low Dose Naltrexone every morning and I think it's really beginning to help my RLS. It's a long road to take control of your own health and get off some of the more toxic drugs that we take for this dreadful disease, but I think it will be worth it. Check out the Youtube video about the late Dr. Bahari and LDN. I now get my LDN from a pharmacy in Glasgow because I'm no longer on opiates. However, whilst I was reducing them, I purchased LDN from the website on the Dr.Bahari website and joined a Facebook support group called NOPE, they were a brilliant support and have an enormous resource of files that they share on how to titrate opiates and also how to dissolve the Naltrexone tablets so that you can start with a very tiny amount and work up to the normal dose.

I'm still suffering from the withdrawal effects from the Pregabalin but there is light at the end of the tunnel. It is also worth noting that when my B12 levels were low my RLS went through the roof despite all the opiates and pregabalin...once I started self injecting the RLS went back to being controlled again. Check out the B12d.org website for lots of information too.

Imogen x

[Joolsg in reply to flower-girl]

Hi Imogen,

why did you come off the opiates and pregabalin? Did they stop working for your RLS or did you have bad side effects?

Can you manage to get sleep on LDN?

I'm curious as I am on oxycontin and pregabalin and they are keeping my RLS in check for the moment but I do worry that they will stop working some time in the future.

Jools

[Gidgetmoondogg]

Hope you are asleep now

[Ureshi17]

Hi Flower Girl,

I'm curious to know how many milligrams of low dose naltrexone you are on?

Also did you try taking it at night? One of the side effects is insomnia and vivid dreaming when taken at night.

I'm sorry for all the questions, but did you notice any side effects? I'm taking Kratom now and am exploring the LDN option at the moment.

When you started taking it, where you still on the opiates?

Thank you so much.

[pagecampbell]

Have u tried weed?

[silleecharle in reply to pagecampbell]

No but iv been you'd it wud help

[Insomniak]

I have felt the same way myself. Doctor assured me that cutting of my legs was not only NOT the answer but ironically as RLS is a neurological condition I would probably still experience phantom symptoms in my no longer existent legs anyway.

[silleecharle in reply to Insomniak]

That made me lol, its such a horrible disease, im lucky wen I do get some sleep I get 3hrs

[maddymac66]

I understand completely how you feel having gone through so many nights walking the floor. I was on the Neupro Patch which eventually resulted in Augmentation so reducing it from 3mg down to 1mg left me experiencing the awful condition that you are going through. Having seen a specialist consultant for RLS I am now on 200mg of Pregabalin having started out on 50mg and gradually increasing by 50mg per week plus 1mg Neupro Patch. I hope to stop the Neupro Patch soon .Although not entirely free from sleepless nights there is a marked improvement in my sleeping patterns and there is no fear of Augmentation. I hope you can get some relief soon so Best Wishes.