in desperate need of help

[Ilovefigs]

Hello, I suffer with severe RLS. I have been under the care of an “RLS Specialist “ for 7 years. To begin with I was put on 2x 0.18 Pramipexole (slow release) and 2x 0.26 (fast release). The very same specialist warned me about staying on Pramipexole for too long (longer than 2 or 3 years) because of augmentation. However augmentation occurred after about 5 years of being left on Pramipexole and in November 2023 my symptoms were so severe that my arms and legs went into uncontrollable spasms and I was hospitalised and given morphine. I was put on Pregabalin (200mg) last May and advised to slowly reduce the Pramipexole which I did with the slow release Pramipexole in September. The side effects of this action left me sleepless for over 10 days due to severe RLS and very depressed. I sent a desperate email to my ‘Specialist’ to which I have still not received a reply. (It was received and opened). I decided to go private in January and my new ‘RLS Specialist’ at Guys Hospital in London mouth dropped and he was shocked when he heard that I’d been left on Pramipexole for , in his professional view) 5 years too long! He immediately placed me on opiates, increased Pregabalin to 400mg and to reduce the fast acting Pramipexole which I have done.

The result is - I have had the best consistent sleep in 30 years and I’m off the Pramipexole. BUT:

- due to getting consistent good sleep, my body has not had to run on adrenaline/borrowed energy to get me through the daily grind and I’ve basically now collapsed with exhaustion

- the side effects of withdrawal from Pramipexole have been horrific and left me extremely depressed and suicidal

- I’ve officially now had a nervous breakdown which is still ongoing and I am under the care of a private psychiatrist

- I am writing this post from my hospital bed following a heart attack on Monday, most likely due to the recent extreme stress

My sorry post is to ask if anyone else has been through the above hell, due to being placed on Pramipexole for far longer than is recommended?

I am considering taking legal action as my life has been torn to pieces by, in my view, this negligent treatment.

Thank you

[Joolsg]

I am so, so sorry to hear of this. But not in the least surprised. UK medical ignorance and negligence is off the scale.Here are 2 lawyers familiar with RLS, Impulse Control Disorder and augmentation.

[e-mail]

[e-mail]

Kimberley wants to bring a test case against negligent UK doctors for failure to deal with augmentation. She will act on a no win/no fee basis.

Do contact her.

I wish you a speedy recovery.

I advise everyone to sue. In the UK the ABN and RCGPs have refused all attempts to persuade them to teach RLS, augmentation and dangers of dopamine agonists. They're totally dismissive of the horrendous suffering.

I hate suing NHS. BUT it's the only way to force change.

[Cookiebum24 in reply to Joolsg]

Hi Joolsg, I was wondering if you think I have a case?

I was on Pramipexole for around 15 years. I think it was about 2020 I went to my GP because I believed I was augmenting on them and his advice was to just stop them !! I was also on 75mg Pregabalin BD at the time and he advised me to just use the Pregabalin to control my RLS.

Well this consultation was on a Friday and so under the advice of my (trusted) GP I stopped the Pramipexole.

Well I’m sure you don’t need me to tell you what hell I went through that weekend 😢 so on the Monday I called my GP to explain the torture I was in…..his advice was to go back on the Pramipexole. That was it, no other suggestions or no care for the fact that the dopamine was causing me so much harm.

It was only last year that I went to my GP about the augmentation (and with all the advice and evidence from here) to come off the Pramipexole. My (new) GP has been brilliant despite admitting knowing very little about RLS but fortunately she has looked at the evidence and agreed to everything I’ve asked for.

Looking back over the last 15 years, I have clearly been misguided and neglected.

What do you think?

Thanks

[Joolsg in reply to Cookiebum24]

Kimberley Bradfield wants to bring a legal test case in the UK about augmentation. As she says, augmentation is listed in meds leaflets and on NHS and NICE cks guidance. So GPs are supposed to read/research. They don't.Kimberley will act on a no win/no fee basis.

However- you have 3 years to bring a case. So the case against the bad GP who told you to stop cold turkey may be a problem. BUT he didn't advise you to slowly reduce to stop the augmentation.

So email Kimberley.

[e-mail]

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here

It's not recommended to be on pramipexole at all for any length of time. I am so sorry this happened to you!

You were on more than the maximum pramipexole so you do have a legal case and Joolsg will be along to advise you on that.

Get well soon. As things settle down the opioid will cover your RLS.

[donoughts]

Hello , I am so sorry to read your terrible story. I too, have suffered under GPs with their lack of knowledge and care about RLS., but primarily I do hope you do recover from your heart attack and try to think of the most treasured things/people in your life and go somewhere calm for a bit to recover, It will be worth it.

I have too severe restless legs and planned one night to walk into the sea opposite, and got all ready and then thought of my adorable children and grandchildren that I would have let them down and it would be cruel to them, so I didnt. I understand everything you say. I have been on all these wretched drugs for 17 years and when they start not working GPs put me on another. The latest being the notorious Pramipexole. When that was not working I was prescribed 3 then 4 , and of course went into augmentation a few years ago and just battled with it. I reduced to 2 but can’t reduced any more. I am usually awake for hours as everytime my body starts to relax I get restless leg body shocks which can be every 13 seconds for 8 hours. I am in such a temper, and suicidal. I even wrote to my doctor about this with no reply. They are too busy for such a thing and dont know as much as I do about RLS! And I know they don’t know as much as I do so there is no point going any more. I have seen a neurologist too but his tablets did no good after two months.

I am now in Spain for a month and am using this relaxing time to come off this beastly useless drug. I went to the doctor at a Medical Centre and the lady doctor was so lovely, listened to every word and fully understood my predicament, and encouraged me to reduce immediately by putting me on 600 mg Gabapentin , at the same time as reducing half a tablet of my Pramipexole for 7 days and the another half for 7 days till off.! I am going to do this here as I have no daily commitments . I have now achieved 4 days! I am so excited and pleased, It is my dream to come off.

I agree with you fighting for negligence as I was thinking the same thing. If you want support of another candidate please tell me. These agonist drugs have wrecked my evenings and nights for years, plus flights and car journeys etc. etc. Thousands are all in this boat, because RLS is not in The GP training curriculum so they dont know about augmentation, and just make money on the tablets.

Please, please make your aim to find the nice things in life, as there are lots, now you are off the dopamine agonist and do them regardless of anything else as the present is important. Get better and please let me know how you get on. Thank you

Donoughts

[Joolsg]

You seem to have disappeared. Are you alright? You haven't responded to anyone.