How much more can I take ?

[Huntingleroy]

Its a year now since I started the worst journey of my life getting off Ropinrole but I did it and Im proud . Yes daytime and evenings are much better but nights are still pure hell . I have had one nights sleep in a year and that was 1til 6am .Interestingly I was out that evening and only had 600 mgs of gabapentin and 5mgs of targinact and 1mg Clonazepam. Im pretty much taking the max dose of Gabapentin 1800 mgs in the evening and Targinact 5mgs twice a day and weaning off Clonazepam so I could try Zopiclone but that was an utter disaster . I see neurologist in April .Rant over but abs desperate .

[Claire_lc]

First of all you deserve a huge pat on the back for getting off ropinirole. I know how hard it's been because I've been there. You've come so far already; I think you now just need to work out what combination of non-dopamine agonist drugs will work for you.

I've read that Jools spent several unsuccessful years on Targinact/Oxycodone before finally hitting on Buprenorphine. I'm sure you've read her posts describing how life-changing this drug has been for her. The only problem is that, depending on where you live (country/state/borough), it can range from easy to nigh on impossible to get a doctor to agree to prescribing.

Are you in the UK? Which neurologist are you seeing? I'm in exactly the same situation as you (1mg clonazepam, 300mg pregabalin - I tried Targinact but it was an utter disaster for me - had to stop after two weeks as the reaction was so severe), and due to see both a private neurologist in April (my private sleep consultant says he isn't licensed to prescribe Buprenophine, only Oxycontin - utter madness), and the NHS sleep centre Queen Square in November, and I'm planning to push hard for a trial of Buprenorphine.

The private neurologist is Dr Robin Fackrell in Bath. I've quizzed his secretary about his ability/willingness to issue private prescriptions ongoing, and she's confirmed this is possible. My GP practice has Buprenorphine red listed, so refuses to prescribe currently, even with a neurologist monitoring me regularly. It's an uphill struggle and I hope you have some success at your appointment in April.

[Huntingleroy in reply to Claire_lc]

Hi , yes its a constant juggle I feel . Im under Dr Martin in Gloucester who wasnt keen on Buprenorphine when i suggested it but has given Methadone to other patients. I have sent him a whole load of research on it . I used to see Dr Fackrell but he was the one who pooh poohed augmentation and upped my dose to 4mgs ! He also wanted £260 for a phone call !! The last time I went I was in there about 10 mins as well . Dr Fackrell will issue private prescr but they can be very costly. One of mine was nearly £100 for sleeping tablets ! My Gp is also red listed for Bupren but Im seeing Dr Martin on the nhs in April . Good luck

[Claire_lc in reply to Huntingleroy]

I wonder why Dr Martin is prepared to prescribe Methadone to some people, but withholds Buprenorphine from others? It's all so random. Every doctor seems to have their own take on it, and none of them properly understands the new research, eg. the Mayo Alogorithm.

Outrageous of these consultants to charge so much for a phone call. I was told £260 for 45 minutes, and I intend to stay in the room until every minute is up. Sorry to turn the conversation back to myself, but it sounds like Dr Fackrell didn't prescribe Bup for you. Did you see him a while ago? I've heard he's more up to date on opioids now. Does he charge a standard £100 per private prescription?

[Huntingleroy in reply to Claire_lc]

No i saw Dr Fackrell pre covid thats when he pooh poohed augmentation and upped my dose ! With a private prescription it depends on price of drug and pharmacy i think . My Targinact from dr martin was about £55 but my gp has reluctantly let me have it on nhs since. Yes its a nightmare . Ive emailed Dr Martin today saying I would like to trial Buprenorphine as its 10 months now without sleep. Take care

[Joolsg]

Well done for getting off Ropinirole.I was in your position in 2021.

I came off Ropinirole in 2016. I was prescribed 25mg Oxycontin ( same as Targinact, but without the naloxone) and 150mg pregabalin.

No RLS in the daytime BUT I still had very severe RLS in the evenings from 8 -10 & was woken 2 or 3 times every evening with severe RLS and it would take 30 to 40 mins to walk off.

I had an iron infusion in 2020 and it made no difference.

In 2021 I was extremely lucky that my GP agreed to a trial of Buprenorphine.

I take 0.4mg. Overnight, it stopped ALL my RLS.

It's why I am now fanatical about letting others, and doctors, know how miraculous and effective it was for me.

In some areas it is red listed, which means a specialist has to prescribe and monitor it. That usuallly means the hospital has to issue the prescription, or write to the GP to ask them to prescribe.

[Huntingleroy in reply to Joolsg]

Interesting to hear how everyone is different . Im really hoping he will give me Buprenorphine . It is red listed at my Gps. I understand about the nausea etc . I have emailed neurologists secretary today but no reply yet. I have nhs appt in April with him but I dont think I can wait that long ! Thanks for your help again

[Joolsg in reply to Huntingleroy]

Just in case you do manage to get Buprenorphine, plan ahead and get a private prescription for medical cannabis oil with 20% THC. You will only need a one month supply to see if it stops the nausea.For me, cannabis was brilliant. I took it for 10 days and it stopped my severe nausea.

Mention to your neurologist that the top US RLS experts, who wrote the Mayo Clinic Algorithm and who have just written the new draft American Sleep guidelines, all favour Buprenorphine, as it has the lowest risk of respiratory depression.

But if you can't get Buprenorphine, methadone is a great alternative.

[Huntingleroy in reply to Joolsg]

Thanks , how do i go about getting the cannabis oil prescribed ? I live in the Uk

[Claire_lc in reply to Huntingleroy]

I know Jools has suggested a couple of clinics that will prescribe medical cannabis in previous posts. I have another to add - Releaf. I've used them recently and they were wonderful. So kind and helpful. I tried Lyphe a few years ago and didn't find them to be very professional. Releaf seem to know all about oil, whereas Lyphe wanted me to vape dried herbs. They will prequalify you, but it's very straightforward and you will definitely be seen.

[Huntingleroy in reply to Claire_lc]

Im very confused about this medical cannabis , is it all online or do I see someone. I will prob only need it for a month to help with the nausea

[Claire_lc in reply to Huntingleroy]

You can book online with them. They set up a Zoom-style consultation with one of their doctors, who takes your history and works out the best strain for your condition. Then it's ordered and delivered to you with instructions. The consultation can happen pretty quickly, but I've found that the oil can take a while to arrive, depending on what's been prescribed.

I'm in the same situation, and need some ready in case I get Buprenorphine, but I don't want to order the cannabis until the Bup is in my hands! Makes the wait even longer!

[Huntingleroy in reply to Claire_lc]

Snap thats exactly my thoughts ! When do you get seen ? Let me know outcome . Do you live near Bath ?

[Claire_lc in reply to Huntingleroy]

I don't want to order the oil until I have the prescription for Buprenorphine not just in my hands, but actually filled by a pharmacy. Lots of hoops to jump through first! My appointment with Dr F is at the end of April. I'm driving from London. I've heard he's changed his stance on DAs since being 'reeducated' by people on this forum!

[Huntingleroy in reply to Claire_lc]

Have you used the oil before ? How was it ?

[Claire_lc in reply to Huntingleroy]

Yes, I've tried it for the RLS, to see if it might help. But it didn't unfortunately. What I can say is that it doesn't get you high. You can take as little as 0.1ml, which is no more than a few drops from a pipette. But they give you special syringes so that you can measure out very small amounts. You start with 0.1ml and increase by 0.1ml every day or so until you experience improvement. If we react as Jools did, we're only talking about taking the oil for a couple of weeks anyway, to get over the initial nausea while the body adjusts to Buprenorphine. Let's keep each other posted!

[Huntingleroy in reply to Claire_lc]

Yes lets . Im a nursery nurse and worked in a hospital all my life .There are medicines that will help with nausea so I would rather try one of those first. My appt is April 19th but if he has a private cancellation I will go for that if its in March . Chat soon !

[Huntingleroy in reply to Joolsg]

Im seeing my neurologist Dr Martin fairly soon on the Nhs. If he prescribes methadone or buprenorphine for me , he will then write to my Gp. What happens if my Gp refuses to prescribe it for me or is he obliged to ? I just need sleep !

[Huntingleroy]

Buprenorphine