RLS doctors in/near London, UK?

[the7thsong]

Hi,

I'm a long term sufferer with pretty severe symptoms. Can anyone recommend a doctor / neurologist who specialises in RLS in pr near London, UK?

I cannot find one from a pretty thorough google search :l

Many thanks,

Hasan

[Joolsg]

There are only 2 or 3. Dr Guy Leschziner at Guys/private. Prof Matthew Walker at UCL/private.However, you have to be savvy and learn all you can first because even the 'top' UK doctors are not up to date and are still prescribing Neupro patch to people augmenting on Ropinirole/Pramipexole.

So first look at RLS-UK website, they run this forum. RLS-UK follows the Mayo Clinic Algorithm for the treatment of RLS and the latest American Academy of Sleep Medicine Guidance. Both relegate dopamine agonists.

First line treatment is now iron therapy and switching patients off trigger meds( anti depressants, sedating anti histamines, anti nausea meds, statins, beta blockers, PPI gastric meds.

Then, if that doesn't help, you start gabapentinoids OR low dose opioids.

If you're already taking dopamine agonists ( Ropinirole/Pramipexole/neupro) then the common side effects of drug-induced worsening (augmentation) and Impulse Control Disorder are so common that you should get off them.

The RLS-UK website sets out a withdrawal schedule under Useful Resources.

[Ocelot85]

I use Dr Sara Mcneillis, link below:

phoenixhospitalgroup.com/ou...

As Joolsg states, it is still very much worth doing your own research.

[Claire_1c in reply to Ocelot85]

I haven't come across Dr McNeillis or the Phoenix Hospital Group despite years of research into RLS specialists in London. Has she prescribed Buprenorphine for you?

[Ocelot85 in reply to Claire_1c]

Hi

I didn't ask for it. My preference is Pregabalin as I tolerate it exceedingly well. She has me on a drug holiday regimen, switching between Targinact and Pregabalin every 6 months. If that does not work then I will lean more towards Buprenorphine/Methadone and see if that is more effective.

I've no idea whether she is any good as my only reference point are the GPs, and when it comes to RLS, and that is like comparing a lamborghini with a Honda Civic.

[Claire_1c in reply to Ocelot85]

So true! Let us know if you do end up trying Buprenorphine through her. It would be great to add more good doctors to the list.

I very much hope the current regime works for you.

[SueJohnson in reply to Ocelot85]

Unfortunately you will need to wean off each of those or you will suffer withdrawal symptoms. Also the targinact only lasts 4 to 6 hours so you would probably have to take it that often or you will have mini withdrawals. And the pregabalin when you start that up again will take 3 weeks to be fully effective.

I would suggest you have her start you off on pregabalin and after 3 weeks increase it by 25 mg every couple of days until you find the dose that controls your RLS. Take it 1 to 2 hours before bed as the peak plasma level is 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." Although the usual maximum dose is 450 mg and you can take up to 600 mg.

If this controls your RLS then there is no need to switch to Targinact. And if it doesn't then there is no need to do the every 6 months rotation.

To come off pregabalin reduce by 25 mg every 2 weeks to avoid withdrawal symptoms.

[SueJohnson in reply to Ocelot85]

Looking back I see you were on 450 mg pregabalin and it didn't work so why go that route again. Just being off it for 6 months won't make it suddenly effective again.

[amrob123 in reply to Ocelot85]

I don't think your doctor's recommendation for 6 months on, 6 months off is a sound one. As SueJohnson points out, you'll need to withdraw from each, every six months and that can take a couple of months each time. Chopping and changing psychotropic medications such as pregabalin isn't a good idea as (in lay terms) your brain chemistry doesn't have a chance to settle. If pregabalin works for you, why not just stick with that. Alternatively, why not use pregabalin with a low dose of Targinact (if okayed by your doctor).

[the7thsong in reply to Ocelot85]

Thanks so much. Are you happy to share why you switch to Targinact when you you tolerate Pregabalin well? Does pregabalin stop being as effective? I am on pregabalin right now (250mg / night) plus vaping 0.45g medical cannabis every night, but now my RLS is getting worse and I am very hesitant / apprehensive about further increasing dose of either of these 2 things. Thank you SO much!

[Ocelot85 in reply to the7thsong]

I got to 400mg and even that wasn’t working well. I also think it impacts your cognitive ability at that dose. The Targinact was only temporary to give me a drug holiday from Pregabalin which I am now back on 250mg. It somewhat worked, though still not as good as it was. I’m choosing to live with it until the Tomac device becomes available in UK.

All medication ultimately will lead to tolerance eventually, I’d say you’re closing in on the point of needing a drug holiday. It doesn’t have to be long, a month will likely do it.

[the7thsong in reply to Ocelot85]

Thank you for the details! I'm glad that the reduced dose of 250mg is at least somewhat working for you...