Neurologist/Sleep specialist

[Hooc]

Does anyone know of anyone of the above expertise I could find in West Yorkshire?

I had an appointment to see one in January this year after waiting 18 weeks on the NHS unfortunately they sent for me on a Sunday! When I was away I now have to wait another 18 weeks I feel desperate to get some treatment and would willingly pay privately. I've had no sleep for a week and feel now almost suicidal

[Joolsg]

Hi Hooc

I’ve looked at your other posts & if your RLS is so bad , I think you’re suffering Augmentation.

You can’t wait another 18 weeks so you’ll have to be your own expert. You need to get off pramipexole by reducing slowly over weeks. Your RLS will become much worse so you will need am opioid like tramadol.

I took 50mg every 4 hours during withdrawal.

Read everything you can on Augmentation.

Kirstie Anderson in Newcastle is an RLS expert and probably the best person for you to see. An hour by fast train and you’re there.

Jools

[Hooc in reply to Joolsg]

Hi Joolsg

Many thanks for your reply. Is tramadol available over the counter I'd by prescription only? I don't see my go until the middle of next month so pretty desperate for some short term relief if any and if no local neurologist available may try Newcastle.

Thank you

Hooch

[Joolsg in reply to Hooc]

Hi Hooch

Tramadol is a synthetic opioid so only avayon prescription from your GP.

Most GPs know nothing about Augmentation and withdrawal from dopamine agonists. My GP refused to give me tramadol to help with withdrawal even though I broke down in tears through exhaustion.

I have a neurologist for MS and I called her secretary. She wrote to my GP and asked her to prescribe the tramadol.

Your GP may be more enlightened. Take some printed information from this site about Augmentation and it may help persuade your GP.

In the meantime you can buy Solpadeine Max tablets from any pharmacy . They contain 12% codeine which will help with the Augmentation & withdrawal.

Also buy flight compression socks as they do help a little.

If you can get hold of cannabis- that helps as well. My children ( in their early 20’s) got hold of some for me. Desperate times call for desperate measures! It helped me get an hour’s sleep during the worst week of withdrawal. However, as I’d never taken it before and used it every night for a week, I developed panic attacks ( it was clearly strong street cannabis- that’s why it should be legal for medical use - strength can be monitored).

Also try very hot baths, iron bisglycinate ( available from Holland& Barret) as your serum ferritin needs to be above 100.

Magnesium oil on the legs & oral magnesium citrate helps some people as well.

Make sure you’re not taking meds that make RLS worse- anti histamines & anti depressants.

I waited 9 months to see Professor Choudhuri’s registrar at Kings in London, by which time I’d been through Augmentation and withdrawal from Ropinirole with the help of people on here like Pippins & Elisse.

I’d read everything I could about RLS & I can honestly say I didn’t learn anything new from seeing them.

The only benefit of seeing the team at Kings was that they confirmed to my GP that I should be prescribed OxyContin & pregabalin.

It’s a lonely, awful disease. Knowledge is power.

Read everything you can on this website and get hold of books from Amazon. I bought Clinical Management of RLS by Doctors Lee, Buchfuhrer, Allen & Hening & read it cover to cover several times.

Hope you control the RLS until you see the neurologist.

Jools

[Graham3196]

Hi Hooc

While you are waiting and reducing your medication I suggest you try changing your diet. Tere are quite a few people who have been helped by this and, just perhaps, it might help you as you reduce the drugs. There are several diets that have been found to help and I would be happy to send some information if you're interested.

I have not heard of anyone's experience at dieting while augmenting so you would be a trailblazer. What have you got to lose?

Graham

[Hooc in reply to Graham3196]

Hi Graham

Many thanks I'm desperate to try anything diet is something I have looked at but tried to any degree. I have given up caffeine and alcohol as well as chocolate but yes if you could send me something it would be appreciated.

[John_naylor]

Some GP’s are very resistant to opioids so you may need to be persuasive and take some references from here or RLS sites. Tramadol is ideal for getting you thro’ this period. Are you on any other medication as some are triggers (Amitriptelene, antidepressants or even cold remedies). Alcohol and sweet stuff, chocolate!, spicy food, eating late , irregular sleep times, stress, exercise etc are all triggers that you can sometimes detect from a food/ events diary if you find some nights are worse than others. Good luck, we are all rooting for you!