Update on rls

[Loopylegs]

Hello everyone, just an update to let you know how I have been getting on since coming off the dopamine agonist. It's around 3 months now since I took my last tiny piece of pramipexole, after a pretty rough time of crawling legs, arms, shoulder shivers, I'm finally getting better!!! While coming off the DA, I took 900mg of gabapentin, 1mg of clonazepam and 2 tylex (co-codamol/zapain) containing 60mg of codeine and iron plus magnesium. I was still getting very little sleep, but I was getting some, I was determined this time not to give up when the sleep deprivation was bad and revert back to the DA. Gradually things started to improve, and in the past 3 weeks I have been getting 6 to 7 hrs of uninterrupted sleep and I do not know myself!! The only thing I've changed was eating late in the evening, I don't eat after 7pm anymore, especially anything containing sugar, I haven't drak alcohol either as it always triggered my rls anyway! So, I have reduced my gabapentin again to 600mg and still take the codeine, I no longer take the clonazepam either, I will eventually reduce the gabapentin and codeine to as low a dose that control my symptoms. I went to see a lovely neurologist in Belfast and he said he would look into prescribing buprenorphine for me but wants to hold off as I'm doing so well at the moment. He said it's a slow road to repairing dopamine receptors naturally after being on DA's for 10 years but the fact that I'm sleeping well is a very good sign, also the rls has reverted back to just my legs and only kicks in if I'm sitting down relaxing in the evening, but they calm down when I go to bed, which was the way I used to be for over 30 years! He recommended that I still continue with iron biglycinate 20mg at night and magnesium malate, or a good multivitamin with these in it. I feel so sorry for those of you struggling to come off DA's but the advice on here has given me my life back, do it slowly, as Sue, Joolsg, Madlegs etc.. have advised, get a blade and shave off a little piece at a time. I was lucky thanks to you wonderful people, to have seen the advice before I increased my pramipexole, and thankfully I was on a low dose when I started to come off it. Once again I thank you all from the bottom of my heart and I hope that anyone struggling finds help from my story and all the other stories here x

[SueJohnson]

That's great! So pleased for you.

I probably mentioned this to you before but be sure to not take the magnesium within 3 hours of the gabapentin.

[Loopylegs in reply to SueJohnson]

Will do thanks Sue

[Whymelord]

Hi Loopylegs I'm delighted for you,its soo reassuring to hear stories like yours,I live in Derry,may I ask the name of the neurologist and how to contact him please.🙏

[Loopylegs in reply to Whymelord]

Dr Jamie Campbell, he's lovely, he is in Kingsbridge private hospital. He mostly prescribes gabapentin & clonazepam for rls to help come off the DA's, also he said Primadone works quite well too, it's another anticonvulsant medication to control seizures. Buprenorphine is rarely prescribed, mostly for pain or addiction,but he said that opioids definitely help control rls. You can look him up on line, my GP referred me to him because he specialises in movement disorders.

[Whymelord in reply to Loopylegs]

Thankyou for your reply, as it happens I have an appointment at the Movement Disorder clinic next week so hopefully they will help,I wish you the very best of luck .

[Loopylegs in reply to Whymelord]

I hope all goes well for you

[Madlegs1]

That is such a fantastic story.

It should be a template for others in similar situations. Pin or save, Kaarina?

I'm so glad for you.

Long may it continue.😍🍀

[Loopylegs in reply to Madlegs1]

Thanks Madlegs, it'd all the brilliant advice here that helped me and its wonderful to hear of the success stories, I may not be off medication, but I definitely look forward to going to bed again!

[Fingerandus]

thank you loopylegs i am struggling ive been to the docs today for checkup she says everything thing is fine iron ferritin 198 magnesium cholesterol all ..other things all come up good osteoporosis scan good no risk she has sent me for a fatty liver scan now i dont know her way of thinking i am still taking sifrol which causes my legs & arms to become restless, also if i dont take it i get restless ..i have had 3 good nites taking half of a diazepam but she only prescribed me 14 so what next .... the end

[Loopylegs in reply to Fingerandus]

Sorry to hear you're having a tough time of it, if you look up Sue Johnson's advice on how to reduce Siffrol (pramipexole) as it sounds like you are going through augmentation, you need to reduce the medication very slowly and ask your doctor to prescribe you medication to get you through this phase, I used gabapentin, clonazepam & codeine to help get me off pramipexole, but everyone's different, and your dose of siffrol could be a lot higher than what mine was, so you need to discuss this with your doctor, in the meantime look up Augmentation on this forum, there's so much advice.

[Biscuitface]

Brilliant!. I am so happy for you

[Loopylegs in reply to Biscuitface]

Thank you!

[Hidden]

Hi Loopy, glad to hear you’re doing better. Do you still have the Mirena ring? Might be time for that baby to come out? Progesterone will aggravate RLS symptoms as well as HRT which last time we spoke you were weaning off. Do you recall if your RLS took a turn for the worse when you got that? As with HRT, that ring does no harm to your receptors and might even up-regulate them? sciencedirect.com/science/a...

Isn’t it bizarre the way not eating at night lessens RLS symptoms? And it’s a bell curve for me. It takes a lot of food after 7pm and up until about 9pm to trigger bad RLS. Then as the night progresses I get to a point where half a cracker at 3am will trigger bad RLS. But then the RLS passes in about 15 to 30 minutes, but I’m so aggravated at myself that I’m usually up for an hour if I do this. I never seem to learn.

I have yet another recommendation. If you reduce the Gabapentin and find your RLS ticks up, instead of rushing to increase it again, I would try increasing the iron to 40mg or even 60. Always take the iron on an empty stomach about an hour before bed and away from other meds and vitamins. I take the ferrous bisglycinate in this manner and it completely relieves my RLS in one hour for one night. Serum iron has much more of an affect on RLS than ferritin…so I strongly believe. Serum iron plummets at night, with a nadir of midnight and that’s why RLS is a condition of the night 👣 So we should all at least try to sneak our brains a little iron at night when it needs it most.

[Loopylegs in reply to Hidden]

Thanks for all the advice! I'm pretty sure my worsening rls over the years had been due to donating blood every 3 months & depleting my iron stores. When I realised the link with iron it was too late, I had already been prescribed dopamine agonists and was on them a few years at this stage, I started hrt in the hope that it would help my rls but it hasn't made a difference, getting off the dopamine agonist was the game changer, but I definitely will take the extra iron at night on an empty stomach as I try reduce the gabapentin further, I wouldn't have got this far without the advice from all you lovely people! I got 7 hrs of uninterrupted sleep last night!

[Munroist]

Brilliant, definitely keep taking the iron and thank you for sharing your positive story to encourage others. Sleep well.

[Mipilimi]

WOW great story!! Helping each other…🧡🧡🧡🧡

[RLSLearner]

👍👍👍

[Bowie4eva]

Well done you, Loopy!! Inspiring. Definitely going to start eating earlier in the evening now.

Are you in the UK, just out of interest? 🙂

[Loopylegs in reply to Bowie4eva]

Thanks Bowie-deva, amazing how something as simple as eating close to bedtime can have an effect on rls! I'm over on the west coast of Ireland.

[HipHop1972]

Hi Loopylegs. What a great story and a big well done with your journey to get off Dopamine Agonists. You also appear to have the support of a great Physician absolutely essential in these cases. I’m on my final leg of the same journey and my specialist contacted me yesterday to say he had dictated a letter to my Doctor with instructions on future treatment. Anyway a big 👍👏 and thanks for sharing your story

HipHop1972

[Loopylegs]

Thanks so much, best if luck to you on your final stage!

[Merny5]

so wonderful to hear a success story. Congratulations coming off of DAs is not an easy task. I wish you the best

[Loopylegs]

Thanks Merny5, I think I'm over the worst of it now and things are really looking up!

[TeddiJ]

Many congrats, Loopylegs! We have interacted before, I believe. So, this doctor DID say that our/your receptors could heal after long-term DA's? I've been so confused about this. I've been doing well on very low dose Suboxone but it feels just like a bandaid and not a healthy solution. Dr. B in CA didn't recommend anything to help repair the receptors and implied that an opioid is my only solution forever.

I know many on here are on opioids, just like I am, and are doing well. But opioids obviously aren't fixing the underlying RLS cause, after getting off DA's. Not to mention, weaning off opioids creates terrible RLS in and of itself, so it is hard to know what is what.

FYI, if I were you and doing this well, I would not start on BUP, as it's another situation unto itself: You can't tell where your RLS is, there are definite side effects even with low doses, it can sometimes be difficult to get refills or prescriptions filled leaving you high and dry and withdrawing, and you may be treated like an addict by some docs/pharmacies.

Hope this helps on your journey. Thanks in advance for letting me know what he said about receptor repair!