My Poor Poor Dad

[JacquiiCann]

Why oh why arent doctors up to scratch with RLS...Myself and my dad have suffered RLS for years and years.

Thankfully I was able to get off Pramipexol after years of augmentation. I was put on Tramadol and Gabapentin which I've been on the same dose now for 2 years and touch wood, I haven't had any symptoms apart from when I've been partying and alcohol has played a part in RLS returning or I've eaten too much or had chocolates, then it comes back for a few hours! My dad.....well if he was a dog, he would have been put down by now... his doctors are absolutely USELESS!

My dad is suffering so badly now he is falling asleep standing up which results in him falling over. About a year ago I wrote to his doctor and told her about the augmentation and gave her links to the Mayo Clinic site. I pleaded with her to change his tablets.

The doctor in her wisdom decided to tell my dad to stop taking his Ropinerole by cutting his dose by half....and NOT giving him anything else to help with the consequences.... giving him his due..my dad did really well... but in the end, he couldn't cope with these dreadful dreadful withdrawal symptoms.

One evening my dad sat on a chair in the kitchen and fell asleep and then fell off his chair and hit his head on the radiator. The next morning he had 'Drop' head ( he can no longer lift his head) because of this, he can't breath, lay flat or swallow very well. He is unable to drive any morr, do any of the sporting activity he so much loved, darts, snooker, bowls or golf! ...all gone over night!

My dad quickly became very depressed and decided he couldn't cope without his 'Ropinerole' and started taking it again.

He has been pulled from pillar to post and nobody is doing anything!

I've read some of these messages out to him to give him hope that he can get relief from RLS when he gets weened off his tablets and get given better ones. which, in turn he will finally be able to 'sleep' in his bed and not tread the floor boards every single night and day ( he is exhausted) and it's very sad to see him this way.

If my dad could just get rid of his terrible symptoms he could then concentrate on his health and neck.

The latest is, that the doctor he saw yesterday has made him an appointment to see an neurologist in a about a month's time..... I pray he is up on his info and can help my dad.

[SueJohnson]

That is so sad. I certainly hope the neurologist can help him. What is his/her name?

[JacquiiCann in reply to SueJohnson]

Not sure as yet, I just hope it's not the same one he saw last year.

[SueJohnson in reply to JacquiiCann]

Let us know when you find out. I assume the one you saw last year did not know much about RLS. What was his/her name so we make sure no one else is referred to him/her?

[Madlegs1]

Please read this article ,put up a while ago.

You may find it relevant to your situation.

Certainly worth looking at.

healthunlocked.com/rlsuk/po...

[JacquiiCann in reply to Madlegs1]

Thank you so much. I'm not sure my dad is in any fit state to even be thinking about solicitors. I will read it outt to him.. knowing that non of this is his fault and that that there is helpmay spur him on. Thank you once again.

[Madlegs1 in reply to JacquiiCann]

You can take it on for him.

Be aware of some time frames involved.

They have offices all around the UK.

Well worth looking into.

Good luck.

[Joolsg]

Please read the post by Switalskis. Failure to take full iron panel blood tests and warn EXPLICITLY about augmentation are breach of duty and the GP can be sued for negligence.As your Dad has now sustained an injury, even more reason to consult a solicitor.

[Boldgirl45 in reply to Joolsg]

I came here to say the same. Absolutely tragic. Your poor Dad 😞

[JacquiiCann in reply to Boldgirl45]

It's truly heartbreaking.

[JacquiiCann in reply to Joolsg]

Dad is on iron tablets. So I assume they have checked his blood levels. He has been on statins for many years, I did read that that could cause RLS in some. I will try and get a full run down of all of his tablets dad is on and report it on here to see if anything major jumps out that maybe making matters even worse .Thank you for commenting too.

[Joolsg in reply to JacquiiCann]

You need to ask for your Dad's medical records and get a copy of his last iron panel blood tests.Sadly, RLS isn't taught at ANY stage in medical training so most GPs know nothing. They simply look up.drugs in the BNF and there is no information or knowledge on withdrawal from dopamine agonists.

It's more difficult than withdrawal from heroin according to some US experts.

I was on 4mg Ropinirole. Withdrawal nearly killed me.

But your dad can reduce very slowly with the help of a low dose opioid.

His GP will need to learn about RLS to help him through it. The NHS and UK NICE guidance are outdated.

The best resource is the Mayo Clinic Algorithm.

Lots of meds worsen RLS, including statins, anti depressants, sedating anti histamines, beta blockers and PPI gastric meds. Some members find safe alternatives to statins.

But first, get your dad off Ropinirole very slowly by reducing 0.25mg every 2 weeks. A low dose opioid like tramadol, codeine or oxycodone can reduce the withdrawal symptoms.

Pregabalin or gabapentin can be started around 4 weeks before he stops the last dose of Ropinirole.

Look at RLS-UK for dosages and timings.

And do let us know the name of the neurologist he will be seeing.

Current waiting times for a UK neurologist are a year, so I'm stunned he has an appointment so quickly.

[Wordsworth99 in reply to Joolsg]

Hi Jools, do you think it would perhaps be even better if he considers the meds that may be making it worse, and replace them with better RLS alternatives, first? That is before he starts reducing the Ropinerole? Presumably his RLS would then be less bothersome so it will be easier to decrease the Ropinerole. Just a thought. 😃

[Joolsg in reply to Wordsworth99]

It may not be possible to reduce/replace some of the trigger meds, particularly if he has heart issues.The main driver of the severe, increased RLS is the Ropinirole. Every day spent on that can cause permanent damage to dopamine receptors, so I would personally get off that first.

[dickJones]

Surely this is a story of clear medical neglect. The GP in question has ignored that basic protocol whereby the dosage of a powerful medication is reduced in stages and its impact is ameliorated by the interposition of a milder med. We’re all accustomed here to a near total absence of savvy about RLS/PLMD within general practice. But the ignoring of basic principle concerning dosage reduction takes poor prescribing to another level! Your father has the right to change his GP practice. Surely this is what he must do! In the meantime, following up Sue Johnson’s question, identifying the neurologist might indicate prior knowledge and experience of recalcitrant RLS. Every good wish to your father going forward.

[TheDoDahMan]

Are you aware of the many stories told here of relief from RLS symptoms via low-dose buprenorphine?

[SueJohnson]

I assume you have read my posts on how to reduce pramipexole. If not, reply back here and I will give it to you. Since he is suffering so much he might want to reduce more slowly than is usually recommended by getting an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shaving off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. I don't know if he is capable of this or not and might need your help at first.

[JacquiiCann in reply to SueJohnson]

Thank you. Great idea. I am going away for a few days. When I get back I will see if I can get the wheels in motion. I know my dad is now 'petrified' of coming off Ropinerole however small the dosage but he has got to try if not for himself, for my mum. I will gather as much info as I can... his other tablets he is on... name of his last neurologist..etc. I will also look into buying some scales. Thank you so much for being here.

[Pickyourpoison]

this just enrages me and I am so sorry for you and your poor father!! my rls doctor told me that it’s next to impossible to get off ropinirole without something else if you have bad RLS, because the withdrawal last about 20+days and you can’t go that long without sleep (it is the definition of torture). If he was able to have a very low dose opioid he can get off cold turkey - not only that, but after a month the restless legs in general will be nowhere nearly as bad because the current severity is being caused by the ropinirole! I pray for you both!

[CalmRestPeace]

Hi JacquiiCann

Very sorry to hear about your dad's experience. It sounds torturous.

My recommendation would be to take a look at his diet.

I believe that if your diet is not healthy, then nothing else is going to really matter.

Even if he only eats healthy for a few weeks, cutting out all the real RLS triggers (all the good tasting food plus booze) it should help, and maybe his symptoms will lessen a bit.

If he did feel better, than he might be inspired to bear down even more.

All the best!