Has anyone yet forked out £600 to see if the Nurosym Vagus Nerve Stimulation device helps reduce their RLS or depression/anxiety?
My RLS is completely controlled but I'd be interested in trying it for my MS fatigue and brain fog.
There was a 2023 study on 15 RLS patients and vagus nerve stimulation. 60% responded well.
But £600 is a LOT of money. I'd like to know if anyone has tried it before spending money on it.
I'm afraid it's too much money to try
Agreed. I'm researching cheaper options and reviews.
Do let us know if you find something that seems reliable! I’m interested as well, in case it could calm me down at night.
👍
Hmmm…I tried this about 8 years ago, when my RLS was still being controlled by Ropinirole. 🙈 I was hoping it would help my insomnia and anxiety but honestly noticed zero difference - apart from to my bank account of course! I must have given it away, otherwise you could have had it. But honestly, I'd say don't waste your money.
Therapulse legs really helps me as RLS starts , a fraction of the cost
I found all Therapulse did was to make a pounding like feeling in the part of my legs it was attached to.Maybe for some it detracts but it did nothing for me.
I know we are all affected differently by this awful disease but I do feel there is something going on that, (for most) isn't often going to be fixed by device such as this.
I feel my money was wasted.
I wonder Doghorse. Out of interest. How long have you had RLS. What else you have tried and how severe is your RLS?
Jane😊
I have looked into this as well. There's Neuvana in the US if you are looking for something a little cheaper. It uses taVNS like the Neurosym device.
Joolsg I note you have been able to control your RLS. May I ask how? I also have MS and my legs spasm violently in the evening. Is that how your RLS presented? I'm trying to wean off Pramipexole and take Gabapentin. Thank you.
Buprenorphine. Zero RLS for 3.5 years.I was in your position in 2016 and joined this site with severe all over RLS.
Like you, I was suffering augmentation on Ropinirole. And yes I had VERY violent leg jerking and toe and feet spasms. I never have that now. I spent 5 years on 25mg Oxycontin and 150mg pregabalin. I still had VERY severe RLS. Then in 2021 I pushed Prof. Chaudhuri to let me have Buprenorphine. He initially refused telling me my RLS wouldn't improve and 4 hour's broken sleep was the best I could expect. I pushed again & he finally relented. Luckily I live in an area where Buprenorphine is not 'red listed' so my GP agreed to a 3 week trial.
The FIRST night I took it in June 2021- zero RLS.
However, it doesn't stop RLS until dopamine agonists are completely out of your body for at least 2 weeks. It can reduce the worst of the withdrawals, BUT there's no easy withdrawal.
Once you've been off Pramipexole completely for months, your RLS will settle.
There's a withdrawal schedule on RLS-UK website under 'Useful resources'.
Gabapentin won't help until about a month after you drop the last dose of Pramipexole.
If you are under Bart's for your MS, they are fully aware of the dangers of DAs and they do prescribe methadone or Buprenorphine to MS patients with RLS.
Our RLS is most likely caused by spinal lesions.
You can try to get Buprenorphine pills now and use it to reduce withdrawal symptoms. You'll still get severe RLS, but not as bad as without Buprenorphine.
Reduce Pramipexole by half a 0.088 pill every 2 weeks. Add 0.1mg Buprenorphine as you drop half x 0.088.
When you drop the last dose of Pramipexole- aim to be taking around 0.4mg of Buprenorphine.
You can then add 0.2mg each night up to 0.8mg and stay on that until around a month after last dose of Pramipexole.
0.8mg should cover all your RLS.
Thank you so much for that detailed advice. I will research Prof Chaudhuri and find out if he will see me (I live in East Sussex). Could you advise where, in the UK he is based?
I wouldn't recommend him. He was extremely reluctant to let me have Buprenorphine and I had to 'cajole' him. He also recently joined this forum to ask for patients suffering augmentation to trial intravenous apomorphine( a dopamine agonist). Members were not impressed.There are better neurologists.
Dr Guy Leschziner at Guys London, The team under Prof. Walker at Queen Sq, UCL, London. Dr Robin Fackrell in Bath and Dr Chris Murphy in Salford.
They all see patients privately.
But be aware that some of them are STILL prescribing the Neupro patch, despite the latest expert advice that it causes augmentation ( AASM guidance). Just be clear that you do not want another dopamine agonist.
yes, I tried a device for €230 with a return guarantee if it doesn’t work. Unfortunately I had to ask my €230 back 😝
Hello,I tried another vagus nerve stimulation.
It works really well for anxiety and stress!
It doesn't do anything for RLS.
But I'm controlling more or less RLS but I can't go out of my device because I see or rather I feel a real difference.
Mine is called Amofit S and doesn't cost that much. Less than 200€
Hope it will help you too.
Best
hello I’m sorry to say I did buy the nurosym - I shared it with my daughter who has ME - we both found it did calm our nervous systems down but not to any massive extent. I also find it creates an irritated area on my ear and after a few days of using I have to have a break whilst my ear heals. It does not help my restless legs particularly but it does calm me down if my legs are just a bit uncomfortable and I need help sleeping.
They did offer me the chance to return the machine but after much deliberation I chose to keep it on the basis that it was helping both of us to some degree. However in hindsight I think it is extremely over priced and over marketed. I think a fairer price would be £200 maximum.
I think there are cheaper machines out there that do more or less the same thing.
Hi Jools yes I tried it for long covid and rls. Unfortunately the earclip gave me an allergy so only tried it for about a month, but they did try to help and refunded me in full.
It didn’t make any difference to me, but what has helped me hugely with both conditions has been calming my vagus nerve using neuroplastic techniques.
Nerve decompression surgery?
nerve pain
Has anyone tried a TENS machine for RLS?
Need advice on where to go from here in my attempt to get off Ropinerole. Also welcome thoughts about my theory about how my RLS began.
