ADVICE NEEDED PLEASE

[Retiredlady]

I have been off Sifrol over 9 months.

I feel VERY disappointed that my RLS symptoms did not improve ..in fact I feel worse!

A TYPICAL 24 HOURS….I wake around 2am with minor rls( but enough to prevent me going back to sleep)

Toss and turn for next hour as symptoms get worse then get up and have 30mg codeine which takes about 1.5 hours to take effect.I usually fall back asleep between 4-5 am.

Always wake about 2 hours later with symptoms in hands and down one side of my body.Toss and turn again for next hour before getting up, exhausted yet again, to start my day!

No afternoon naps or relaxing for me, this monster never allows it!!

Finally it’s 8.30pm, time to take my Targin10/5mg.

10pm, it’s working..Yeah,Bliss!

11pm..off to bed, glorious sleep until 1-2am when those horrible symptoms start all over again.

ANY SUGGESTIONS PLEASE how I can improve the quality of my life??

My sleep specialist doesn’t want me to take any opoids during the day.

Am I correct in thinking my symptoms are numerous mini withdrawals ?

Sometimes in desperation I consider going off opoids and restart sifrol.

[SueJohnson]

Yes they are mini withdrawals since Targin only lasts 4 to 6 hours. Can you show your doctor that so he can prescribe enough that this doesn't happen? nhs.uk/medicines/oxycodone/...

[Retiredlady in reply to SueJohnson]

That will mean I have to double the Targin dose and I will be dependent on Targin for life!

Is that ok? I’m afraid of opoid addiction

[SueJohnson in reply to Retiredlady]

You won't get addicted. Dependent yes because it controls your RLS so you won't want to stop it. But that is a heck of a lot better than sifrol. According to the Mayo Updated Algorithm on RLS the usual effective dose is 10 to 30 mg , so you would still be below the maximum dose.

[Retiredlady in reply to SueJohnson]

Thanks Sue, don’t think I should have watched that OxyContin doco!

Can’t get an appointment with my sleep specialist for another month.

Is it safe to be taking two different opoids( Targin and codeine)?

Would it be safe to take a diazepam as well at 11pm a couple of times a week ..hoping it might prevent me waking ?I am asking because it’s generally not safe to mix opoids and benzodiazepines.

[SueJohnson in reply to Retiredlady]

I don't see any problem with taking codeine with the amount of targin you are taking. The main risk of diazepam and opioids is respiratory depression but there are a number of people on the forum taking both. You might want to try taking just part of a tablet of diazepam with just one of the opioids and see how it feels ( shortness of breath, frequent yawns, and an increased heart rate) and then try with a larger dose of diazepam and then a full dose and then both opioids.

[Joolsg in reply to Retiredlady]

You were dependant on Sifrol. Sifrol causes far more damage than opioids for RLS. Dr Winkelman's opioid study shows that RLS patients do not become 'addicted' or develop tolerance ( the need to increase the dose to achieve the same cover). We are all dependent on meds for RLS. It doesn't 'disappear' unless there's a simple cause ( anaemia).

Follow SueJohnson advice but if taking Targinact 5mg every 6 hours doesn't cover the RLS, you can ask for a long half life opioid ( methadone or Buprenorphine) which covers RLS 24/7.

[Retiredlady in reply to Joolsg]

Thanks JoolsgI was considering Buprenorphine as members on this site are recommending it as it covers their symptoms 24/7.

Concerned though that it is stronger than Targin and can make u feel nauseous.

[Joolsg in reply to Retiredlady]

I had severe nausea for over a week. I couldn't move. I lost 7 pounds. BUT it stopped ALL RLS the 1st night, so, as it was my last chance to live a normal life I refused to stop taking it. At day 8, I had a 'light bulb moment' & remembered cancer patients used cannabis for nausea. It works when anti nausea meds fail.I had medical cannabis from my Ropinirole withdrawal, so started 0.3ml every night. It stopped all nausea. I then stopped the cannabis after a week & the nausea had gone.

Most people say nausea lasts a week & then goes. You can ask for Zofran, a safe anti nausea.

[ChrisColumbus]

Weren't you taking pregabalin as well? Have you stopped it, or just not mentioned it?

[Retiredlady in reply to ChrisColumbus]

Yes I was.I slowly myself off as it made me feel ‘thick in the head’ the next day and didn’t appear to be helping my RLS symptoms at all.I had been taking 100mg for 9 months.

I had previously tried Gabapentin for 6 months too