Sleep problems back.

[Ephemera]

Husband takes 10mg Oxycodone at night with 100mg Pregablin also 5mg Oxycodone 3 times during the day. This was helping but now he only sleeps for 2 hrs at night and seems to have RLS nearly all the time he is awake. Does he have opioid withdrawal now? Going to see specialist again in August. Any ideas of help before then please.

[Madlegs1]

What other medications is he on?

The current regime should be adequate for relieving RLS.

In fact , I would reckon it is a bit "belt and braces" having 20 mg of oxycodone and the Pregabalin as well.

It is a very outside chance that he is suffering withdrawal from the 10 mg dose to the 5 mg doses.

Apart from other triggering medications such as amytryptoline, antihistamines or statins or ppis or antiwossisnames ,etc. Many foods set off the fidgets.

If he doesn't keep a food diary, please start immediately. Many food ingredients can trigger RLS. Msg is the biggest culprit. Mostly in most gravies, sauces etc

Good luck.

[Ephemera in reply to Madlegs1]

Only med are Oxy and Pregablin. His diet is only fresh veg, fruit, fish and meat. No sauces etc, no sugar, no salt. Only fresh foods. Its expensive but at least we know what he is eating. Trying to lower the pregablin doses.

[SueJohnson in reply to Ephemera]

Trying to lower the pregabalin dose might be doing it.

[Joolsg]

I was on exactly the same drug regime as your husband.Like him, I had little sleep and breakthrough RLS in the day. For 5 years.

The 'top' RLS specialist at King's College hospital told me that was the best I could expect. Dr Buchfuhrer helped me by email and confirmed that there were other treatments.

As you know, I'm now on 0.4mg Buprenorphine and get zero RLS.

I honestly believe Oxycontin/oxycodone causes mini opioid withdrawals throughout the day. The Sackler family that developed Oxy lied and said it covered symptoms for 12 hours. That's not correct. For some people, Oxy only lasts 3 or 4 hours so you get mini withdrawals. The main symptom of Oxy withdrawals is RLS.

It does work for many people BUT for a large number, it just doesn't work and causes these mini opioid withdrawals.

Your husband is clearly one who doesn't respond well to Oxy.

As you and I both know, he did well on Buprenorphine. That's because it has a long half life.

Methadone and Buprenorphine are first choice opioids in the USA among experts for RLS because of this. The long half life is more suited to severe RLS.

I know you can't get Buprenorphine in your area because it's red listed.

Is there a Sleep Clinic near to you or in your district? Or a drug addiction clinic? Or a neurologist at the local hospital who is willing to look up and learn about RLS and how Buprenorphine helps?

Until August, before he sees the specialist, the only thing I can think of is medical cannabis. It doesn't work for everyone, but it does help some.

Try Lyphe Clinic or Sapphire Clinic and ask for a 'pain' doctor as they will be more familiar with prescribing cannabis for RLS.

lyphe.com/welcome/?gclid=Cj...

[Retiredlady in reply to Joolsg]

Re the cannabis oil you suggested may help,do you mean straight cbd oil or does it HAVE to have thc added to be effective?I have labile hypertension and intermittent AF so unfortunately have to take a beta blocker(nebivolol) and bp med(telsmartin)My heart specialist isn’t an advocate for cannabis but has no idea about how bad rls can be.Also I take Targin10/5 at 9pm so is Targin safe to take at 4am when I have breakthrough rls symptoms.I have been off sifrol for nearly 2 weeks now and I am disappointed Targin isn’t getting me through the night.

In desperation the other night I took 30 mg codeine at 5.30am which got me a little extra sleep but that day I felt ill I was so tired!Have since googled that there is a major interaction between Targin and codeine.I thought I was ok taking it 9 hours apart but maybe not???

Tonight I am now up again at 4am and have just taken 2x25mg lyrica …experimenting hoping that help with breakthrough symptoms.What r your thoughts please?

[Joolsg in reply to Retiredlady]

If you only stopped Sifrol 2 weeks ago, you will still be suffering withdrawal. It can take several weeks /months to settle.Targinact should be taken twice a day according to the leaflets, as Oxycontin can cause mini opioid withdrawals and RLS is the main symptom.

Lyrica doesn't work on an 'as needed basis'. It takes 3 weeks to work for RLS so you would need to take it regularly every night at the same time.

Cannabis oil with THC is what works for RLS. CBD oil doesn't help severe RLS.

I suggest you ask your GP for 4 × 5mg Targinact or plain Oxycontin and take every 6 hours. Also ask for 100mg lyrica and take an hour before bed.

If the withdrawal symptoms then do not settle within 6 weeks, it may be that Oxycontin is not for you. You might need a longer lasting opioid.

Obviously you need to discuss your heart medications fully with your specialist and you can discuss whether there are alternatives that do not worsen RLS.

[Retiredlady in reply to Joolsg]

Thanks Joolsg…Mynext sleep spacialist appointment isnt until late August so I will discuss 4x5mg Targinthen.

He didn’t want me to take any opioids during the day so I will I need it then to prevent breakthrough RLS.

I thought that Lyrica doesn’t work when u first take it.

I was amazed last night that it prevented and eased my breakthrough pain 5.30 this morning.

Will take 75mg Lyrica each night until I see my specialist.

I meant to ask ‘safe to take CODEINE( not Targin)’ when I wake with breakthrough RLS.

Thanks for your continued ongoing advice . Much appreciated.

[Joolsg]

If your doctor didn't want you to take opioids in the day, he shouldn't have prescribed Targinact, which clearly states it has to be taken every 12 hours. This is because it causes mini opioid withdrawal - it is supposed to last 12 hours but only lasts 4 or 5. Everyone responds differently, depending on how they metabolise Oxycontin.Longer lasting opioids work better for RLS.

If lyrica worked to ease the breakthrough RLS at 5.30, then ask your doctor to prescribe it long term.

I would not take codeine as well as Targinact. I'd ask your doctor to consider increasing the Targinact so it is taken at the lowest dose twice a day. If that causes breakthrough, then take lowest dose 4 times a day to avoid the mini opioid withdrawals.

Or, ask for a longer lasting opioid like methadone or Buprenorphine.