consultant needed

[purple-flowers]

I have been seeing Professor Matthew Walker for RLS. I am taking 600mg of gabapentin at 3pm and a further 600mg at 7pm. I also frequently take a further 300mg at midnight. I was on 6 x .088mg of Pramipexole which I have gradually come off of completely since September 2023. I took my last 1/2 of.088mg on Sunday. I am up every night from about 11pm walking around and trying to take my mind off of the discomfort. I go back to bed for an hour then am up again around 1am in the morning for at least two hours. I finally seem to fall asleep at 5am! My kitchen drawers are now very tidy and last night I wrapped birthday gifts. I have a great deal of stress at the moment with family problems and my husbands health problems. I have been trying to get hold of Professor Walker since Friday last week. His secretary doesn’t answer emails or phone calls. Reception atQueens Square have sent her messages to no avail. Can anybody recommend somebody else as I’m desperate now through lack of sleep. Also if I want to take another 600,mg when is the best time? At breakfast or at lunch time. I also take iron ferritin tablets every morning. Any help anybody can give me would be so appreciated.

[SueJohnson]

I may have told you this before but you should take 600 mg 1 to 2 hours before bedtime then 600 mg 2 hours before that, then 600 mg 2 hours before that. Spreading it out like you have just means you won't get the full effect. However it is not going to help you much until your symptoms settle from being off pramipexole which can take a minimum of several weeks. NO - do not increase it now. In fact you may find you don't need that much. What you need is a low dose opioid like buprenorphine which if you can get hold of Professor Matthew Walker will prescribe.

You had daytime symptoms before which is why you took it that way, but they should probably be gone by now

[SueJohnson]

Also take your iron at night not in the morning and take them every other day as they are absorbed more that way.

[purple-flowers in reply to SueJohnson]

Problem is I am on a long term antibiotic which I have to take at night. I will take the antibiotic in the afternoon. Iron dosage noted. Thank you.

[Pippins2]

Until you can get in contact with your consultant you could try taking 2 co-codamol which are available over the counter in the UK. Although the amount of Codeine in them is low (16mg for 2 tablets) it may just help a little .I would ask your GP for Codeine (which is stronger on prescription) if he /she won't prescribe anything stronger and ask if he can get hold of your Consultant as he may respond to a GP. Good luck with it allx

[purple-flowers in reply to Pippins2]

Thanks for your advice. I have co-codamol as I was prescribed them after recent surgery.

[Joolsg]

That is normal. Gabapentin doesn't stop the horrific withdrawal symptoms. You will have severe RLS for the next 2 weeks as the dopamine agonist leaves your body.Hardly anyone escapes withdrawal symptoms. The Gabapentin will kick in around 3 to 4 weeks after your last dose of Pramipexole.

You can ask your GP for 30mg codeine or hydrocodone for 4 weeks to help you through withdrawal.

Or as Pipps suggests, buy Solpadeine max and take every 4 hours for a few weeks.

I used medical cannabis (oil with 20% THC) and it gave me 30 mins sleep after 4 days of zero sleep or rest.

Sleep whenever you can. If you fall asleep at 5am, stay asleep until noon.

If you're getting ANY sleep in the first few weeks- that's a positive.

Hang in there. The RLS does settle in a few weeks.

[RiversW]

Dear purple-flowers, try to keep in mind that once you get through this very difficult part, the quality of your life will greatly improve. I am free of any dopamine agonist for 9 weeks and I can tell you that mine has. Hang in there, you will make it. Good luck! Rivers

[purple-flowers in reply to RiversW]

Thank you everyone for your replies.

[Drls]

hello purple flowers - this might not be very helpful however I have exactly the same issues with seeing Professor Walker and I have managed to now see him via the nhs route having started on the private route. It’s very difficult because there is no interim guidance and care to help with changes or needs as you go on through the year…. My next appointment is nine months after the last one which is far too long.

On a more positive note he did suggest co-codamol to me initially with pregabalin before more recently moving on to buprenorphine. The co-codamol worked very well - I often think it was actually more effective for me than the buprenorphine - so I agree with other people who have suggested you try that option. Also your GP is more likely to prescribe you this than other opioids plus you can try it first over the counter to see if it does help you.

Good luck. I came off of roprinirole a couple of years ago and the last bit was the worst but as others have said it will calm down.

[purple-flowers in reply to Drls]

My GP has never arranged for me to be seen in the NHS so what with his secretary and the GP I’m banging my head on a brick wall! Thankyou for your help.

[Drls in reply to purple-flowers]

Hello Purple Flowers …. Going through the nhs is not much better ( if any ) I think there are more of us looking for appointments than there are appointments on either route. My Gp also doesn’t really want to know about my struggles. I now do virtually all of my housework at night and sleep at some point every day. It’s not great but it’s a way of coping and I have cleared cupboards out that had been full for years! (Domesticity not being my strong point!)

Definitely try the co- codamol or codeine at intervals during the night - that hopefully will give you short spells of sleep and some respite.

I really wish you the best of luck.

[Believer1234]

I had the same issue with Professor Walker. It was impossible to get hold of him, his secretary never responded apart from when she arranged the original appointment. The clinical report was never sent to the surgery which in my case was a good thing as one of the options that he was potentially recommending was dopamine agonists. I had a zoom consultation with Dr Jose Thomas in Cardiff and he was very good. Good luck - it's a horrible thing - my sock draw is immaculate!! 👍🙂

[purple-flowers in reply to Believer1234]

Thankyou for your help and my regards to your sock draw!

[SueJohnson in reply to purple-flowers]

My laugh for the day!

[Believer1234]

🤣