Been doing well for a few wks after continuing the iron every other night and magnesium every night.But over the past wk I've had a terrible time every night the rls has been horrendous, I kept a food diary and realised that maybe the gaviscon I've been taking has triggered it.
So I've not taken any for the last 2 nights but I'm still experiencing this flare up, I've kept sugary treats to a minimum and try not to eat after a certain time in the evening.
Any ideas people?
The regular gaviscon can indeed make RLS worse. You need Gaviscon Advance instead.
Did you see Dr Breen? What did he advise? Presumably you aren't on any meds at all at the moment?
Yes I've seen him I'm still coming off the paroxetine down to 10 mg soon to be 5mg he's suggested waiting until I'm completely off that and if it doesn't improve there's talk of trying circadin if that doesn't work then to try gabapentin
Circadin is melatonin. Melatonin worsens RLS so you need to avoid it. Point Dr Breen to any RLS website or the Mayo algorithm. SSRI, SNRI and tricyclical anti depressants all worsen RLS, so getting off paroxetin will help you.
Alternative anti depressants /sleep meds that are safe are trazodone or wellbutrin.
And gabapentin or pregabalin are first line meds now for RLS. But they should only be taken at night. See RLS-UK website for medications and how to take them. Many doctors are unfamiliar with RLS and how to take gabapentin correctly.
This is what he suggested at the appointment
Oh dear. I really think you need to find a doctor that is knowledgeable.He's recommended a known trigger for RLS and is suggesting Rotigitone stating it has a low risk of augmentation if kept low. This is a common statement from UK neurologists and it is incorrect. It is based on a 2018 study paper by Claudia Trenkwalder which has been dismissed by experts. He also says a 'minority' are on opioids.
That minority will soon become a majority, as tens of thousands augment on DAs and gabapentinoids fail.
So, your neurologist is plain WRONG on 2 major issues. There are so few decent neurologists in the UK who bother to read the latest research studies and treatments. It's bordering on criminal negligence now.
Here's Dr Andy Berkowski talking about Rotigitone.
And here's info on melatonin.
youtu.be/Tz7g9sxS0_I?si=Clc...
bcm.edu/healthcare/specialt....
academic.oup.com/sleep/arti...
everydayhealth.com/sleep-di...
I will be showing him this video at my next appointment, wtf is wrong with doctors in the UK why are they so ignorant to rls 😡
A combination of ignorance ( lack of teaching), arrogance ( refusal to accept they're not 'gods') and negligence.As a retired lawyer, I'm appalled that UK doctors have no requirements to learn or research a disease. I accept RLS isn't taught at medical school or during GP training, so most GPs are lacking knowledge. But a neurologist should read the latest research before giving specialist advice. Dr Breen clearly has not.
Most UK neurologists are STILL prescribing the Neupro patch based on that flawed research study by Claudia Trenkwalder. However, it is clear from the Mayo algorithm, the new AASM and the many, many reports on here, that Rotigitone quickly causes severe augmentation. Once the D1 receptors are up regulated, they scream for their 'hit' of dopamine.
I now encourage everyone suffering Impulse Control Disorder on Pramipexole, Ropinirole or Rotigitone to sue their doctors for negligence if the doctors have failed to warn them about the VERY high risk of gambling, impulse spending etc. Money might talk!
Unless and until UK doctors are forced/shamed into updating their knowledge on RLS, patients will continue to suffer.
If you paid privately to see Dr Breen, you do actually have a case to get your money back. A simple google search produces information about melatonin. Dr Breen could easily update his knowledge.
How can I wean off 1 mg Neupro patch that I have used daily for years? I have severe RLS in my whole body 24/7 and also take 500 mg pregabalin daily ( spread out 2 1 2) and tramadol before bed.
I was just diagnosed with hyperparathyroidism and adrenal adenoma and wonder if I can expect any improvement in my RLS symptoms post parathroid and adrenal gland removal.
Have a look at Andy Berkowski video about Neupro below. The reason you have whole body RLS is because you are on the Neupro patch. All dopamine agonists are poison.Have a look at RLS-UK website to see the withdrawal schedule. It's under Useful Resources.
Two ways you can do it. Switch to normal release Ropinirole, equivalent dose and then reduce by 0.25mg every 2 weeks. Or cut the patch into quarters and reduce by a ¼ patch every 2 weeks.
Most people need an opioid to settle withdrawals at each reduction. As you're already on very high dose pregabalin AND tramadol, you'll need an expert doctor to help.
Why are you on 500mg pregabalin (way above average dose( AND tramadol? Did a doctor add those to treat RLS? If so, he or she is throwing meds at you to treat obvious augmentation. The ONLY solution for augmentation is to go through withdrawal.
Join rls.org in the USA and find a new doctor asap. Where are you.
SueJohnson has lists of good US doctors.
You should also make a new post on here so people can see it and respond.
Only the poster of this post and people who have replied will see this.
youtu.be/Tz7g9sxS0_I?si=Dsa...
I am in NYC and agree and would like to find a new dr. Thank you for the video and any other resources. I have made a new post.
I agree 100% with Joolsg. Unbelievable! Definitely show him the video!
Hi Sue, can you direct me to the list of New York City doctors that are recommended?
Dr. Rashmi N. Aurora, President of the AASM Foundation Board of Directors - NYU Langone Health nyulangone.org/doctors would be my first choice.
See AASM Guidelines at jcsm.aasm.org/doi/10.5664/j...
Dr. Daniel Barone, MD sleep medicine, Weil Cornell rec by David7
I don’t really comment as I’m not an expert like Jools and Sue but I’m wondering if your flare up coincides with a reduction in your Paroxetine i.e have you reduced too much too soon and need to go back up a little to come back down. Just a thought.
We just read all the research that comes out on RLS and read what other patients experience.We have the time to do it.
This is a great point VJ29.
We are all experts in our own symptoms. We know what makes us feel worse. And you make a great point.
Withdrawal from anti depressants should take place very, very slowly.
It happened to me that’s how I know.
Reducing pramipexole 
I am tired to much.
Sleepless in California
Annoyance - wake up soon after sleeping
Fed up 
