Visit to sleep clinic

[Flora-Rose]

I attended clinic (all geared up) to see consultant. Well it turned out that the appointment was with a triage nurse - not made clear on appointment papers. He was very professional and apologetic for the confusion. It soon became clear that he has the ear of the consultant who prescribes buprenorphine. So I talked and he made copious notes I ended up with a sleep monitor and diary for 2 weeks. We agreed a waste of time for me (on pregabolin) but all boxes must be ticked. So I came away and am waiting to hear from the main man - and who knows when that will be! Should I try oxycodone in the meantime?

[SueJohnson]

I thought you said you were mostly free of symptoms on 450 pregabalin ?

[Flora-Rose in reply to SueJohnson]

Thanks Sue. In comparison with where I was before taking pregabolin I’m feeling much better but still get RLS discomfort each evening for a couple of hours. If I’m lucky (not overeaten or drunk any alcohol) and get to sleep straight away I usually sleep through the night which is fantastic and I do appreciate the pregabolin fix. If I’m unlucky I don’t sleep until 2ish. But I have side effects and don’t really feel like myself on the drug.

[SueJohnson in reply to Flora-Rose]

Do you plan to stay on it, reduce the dose or come off it?

[Flora-Rose in reply to SueJohnson]

I don’t know Sue - give it some thought and speak to GP.

[SueJohnson in reply to Flora-Rose]

If you do decide to come off it do so by reducing .25 mg every couple of weeks or you will have withdrawal effects. If you do it slowly you will have none.

[Joolsg]

If you're not sleeping and the pregabalin isn't working for you and your GP will agree to prescribe oxycodone/Oxycontin then you could start it now. Who knows how long it will be before the Barberry approve Buprenorphine?Oxycontin works very well for some but causes mini opioid withdrawals during the day/night for others (me).

Average dose is 30mg and it might work better taking 5mg every 6 hours to avoid the mini withdrawals ( main symptom is increased RLS).

Normally it's prescribed twice a day, 12 hour's apart but it doesn't last 12 hours!

[Flora-Rose in reply to Joolsg]

Thanks Jools. I’ll have a think and speak to my GP.

[fifields]

Do you mind if I ask which sleep clinic please? My partner suffers from RLS, but I have a long term sleep condition. I'm stable but very poor sleep efficiency, so often wonder if there's been any progress, but can't find any suitable forum as good as this excellent one for RLS.

[Flora-Rose in reply to fifields]

Agreed. This forum is brilliant! I attended the Barberry Centre in Birmingham. Long waits and no private.

[ziggypiggy]

I've mentioned several times over the years here for people to try and get info out of their local sleep clinic as to the best doctors in the area for RLS. Walk in and ask the receptionist nicely for any suggestions and i bet they or someone there will be of some help. Can't hurt. Hope it all works out for you.

[Faithatthebeach]

Pnl

[Faithatthebeach]

Flora Rose, I just lost where I was typing , but I was saying that oxycodone works and I take 10-15 mg as needed. It gets right to the pain.

Good luck