Hi All, has anyone had any feedback or tried various natural remedies. A friend of mine recommended Muccuna l dopa capsules and Tumeric root extract capsules to help with rls.
Only started taking these for a few weeks so no real progress yet. Just want to come off the prescribed medication. Currently taking Ropinirole 4mg and Gabapentin 300mg.
Any advice would be most welcome.
There have been reports that turmeric can exacerbate RLS and/or inhibit iron absorption. Others seem to use it without ill effects. I don't know about L-Dopa, hopefully someone else does: it was debated on here a few years back but I've not seen anything recent...
You generally have to be careful with herbal meds if you are on prescription meds: for example I used to take St John's Wort but found it inhibited other meds I was on.
Hi Chris thanks for the reply, learning so much. Had rls for 30 years now didnt know this site existed. Will be keeping a close watch on future posts. Thanks
I used Mucuna pruriens and it did nothing. I suspect, like most on here, you're desperate to reduce the increased severity of your RLS caused by 4mg Ropinirole.Sadly, nothing will help augmentation until you slowly get off Ropinirole.
Gabapentin can help, but not until Ropinirole is out of your system and your D1 receptors start to settle down.
So stay on gabapentin and reduce Ropinirole slowly by 0.25mg every 2 weeks.
Just read the last 2 or 3 weeks posts and you'll learn all you need to.
Thanks Joolsg, its been a grest help. Didnt know the Ropinirole was so bad, wilm stick to the Gabapentin and also have my ferritin checked. Only been on this site 2 day's and learnt so much. Thanks again
Ropinirole is miraculous when you first start. Then you find yourself increasing the dose. Then before you realise, the RLS becomes more severe, starts earlier, affects you in the cinema and on planes and in cars. Doctors tell you it's the disease getting worse.It isn't. The drug actually feeds the disease , like pouring gasoline on fire.
Most of us joined for simular reasons to you and quickly realised Ropinirole was causing the worsening of RLS. Sadly, doctors in the UK aren't taught RLS at any stage so haven't got a clue and think 'augmentation' means an increase in the dose of Ropinirole. Augmentation means an increase in severity of RLS.
I am now off Ropinirole since 2016 and wasted 5 years in gabapentin,pregabalin and Oxycontin. Buprenorphine has stopped all RLS.
So read, look at the Mayo algorithm and research all you can.
Thanks again Joolsg will kerp on researching but im going to stop the Ropinirole as from today a small bit at a time . What are you taking at the moment.
Buprenorphine 0.4mg at night. 0.2mg at 10pm and 0.4mg at midnight. It was miraculous from the 1st night. Zero RLS, night or day and 8 hours sleep.I wasted 5 years on 24mg Oxycontin and 150mg pregabalin after withdrawal from Ropinirolend the top UK RLS specialist said 5 hour's disrupted sleep was as good as it would ever get. He was wrong. Like most UK neurologists.
Shumbah, an Australian member, saw a US specialist several years back and was prescribed Buprenorphine. She told us all about it and there are now around 100 people from this forum who have benefitted from Shumbah's post.
You may do very well just by raising serum ferritin above 100, preferably 200, or on pregabalin alone. Buprenorphine is the last drug available for those of us that have failed everything else.
Keep reading posts and you'll see that different drugs work for different people on here. But dopamine agonists turn on everyone eventually.
Thanks will keep on reading
Hi Joolsg, I remember mentioning on here I tried 2 mg Buprenorphine and it worked like magic. You brought to my attention that 2 mg was a lot. You are so correct, and I was so mistaken. I tried .02mg, lol. Reason I had no idea is because my son is on it temporarily ...very small amount for neck pain. Here in the US he was prescribed a jelly like square. The square is 8mg - he was told they don't sell a smaller mg piece or smaller pill. He did not want to wear a patch. He cuts a tiny sliver to equal about a mg. I tried even a smaller sliver I could hardly see it was so small.. but it worked like magic without any psychoactive effects or hang over effects. I have done this 3 times now spaced 2 days apart with 100% success. I'm nervous about asking my doctor for a script because 1) I don't think he would agree because I refuse to try Gabapentin and that is what he wants me to use and 2) it's a narcotic I don't recall if you use a patch or are there pills in that low of concentration that I don't know about.
Many US doctors prescribe Buprenorphine or methadone for RLS.The Massachussetts opioid study shows low dose opioids are safe, effective and DO NOT lead to addiction or tolerance in RLS patients. You just have to explain to your doctor that Buprenorphine gave you complete relief, show him the Massachussetts study and ask for a prescription.
In the UK Buprenorphine is available as Temgesic and comes in 0.2mg pills. Buprenorphine hydrochloride comes in 0.4, 0.8 and 2mg pills.
I take Buprenorphine 0.4mg sublingual pill and cut it in half. I take 0.2mg at 10 and 0.2mg at midnight.
The Buprenorphine patch is more appropriate for pain as it provides steady 24 hour cover. However if used for RLS, many say it loses effectiveness after 3 or 4 days.
If you can see a doctor who specialises in RLS, they will know about Buprenorphine. Where are you? I know a few doctors in Florida who will prescribe opioids for RLS. Then Dr Buchfuhrer in California, Dr Ondo in Texas and Dr. Winkelman in Massachussetts are all RLS experts. The US foundation has help groups and is compiling a list of US experts.
rls.org
Hi Joolsg, thank you for the thorough reply. I live in Florida. Next week I will be seeing a new neurologist in Orlando who specializes in "movement disorders"(roughly 1.5 hrs from my hometown) I have a list of questions for him. I have had iron infusion, sleep study (I have sleep apnea but now wear a sleep dental appliance), I've tried just about every topical, every natural food supplement including moving into a FODMAP diet and cut out caffeine (never drank more than a cup of coffee a day anyway) and cut out sugars 99%... there's still the occasional glass of wine or ice cream. My neurology reports show no neuropathy. I recently underwent 4 acupuncturist treatments - blood cleaning herbs and cupping were involved... no long lasting improvements with any of these treatments. I have had improvement in the intensity of the restless legs but not in the frequency. Mine hits me every single night starting 2 hours after I go to bed and continues throughout the night til 4 or 5 a.m. Delta 8 cbd tincture helps for about an hour. Hot baths help for about 2 hrs., etc. I tried Ropinerole 2 yrs ago but thank goodness got off after 4 months after doing research. I have a gabapentin script from my doc (his choice of treatment) but refuse to take it at this point because of all the possible side effects so I do not know if it would work for me or not. Only two things have helped.. 1) the Buprenorphine and 2) Hersuta powder. Hersuta calms my body and helps me sleep for about 3-4 hours.
So my point is I'm leaning toward Buprenorphine or Methodone at this moment and will pursue this with the new neurologist I see next week. I felt at my age mid sixty's I didn't want to start long term medication; however, I have to have sleep or I might not make it to be an old lady!
You have tried everything. I really hope the appointment goes well and the neurologist listens to you and helps. Let us know what happens.
I will; I am so grateful for this site because unlike some of the fb sites, this one bases information on personal experiences that can and might help another person and also bases shared information on scientific studies. I pray for each and every one of us who suffer from this and care enough to support and help each other.
I have a feeling I said this to you before, but in case I didn't. You really don't need to be afraid of the possible side effects. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. And if you do have side effects that you can't put up with, you can always come off it slowly and you will have no withdrawal effects. Nothing venture, nothing gained.
Yes I do remember you saying that. Thank you again
What I did was got the script, rang the doctor 3 days later and said that i my arms and hands had swallon up so much I had to remove watch and rings, and was feeling really suicidal so i had to stop it.
Remember doctors will not know if you do or DONOT take the medication.
Oh so many years ago now a GP \friend said i am going to right you script for sifrol and I DONT want you to take it.
He said there are a plethora of scripts I have to write before you can get to an opioid and we will list the side effects suicide is a good one because they have a duty of care.
Tumeric can reduce inflammation but it also reduces iron absorption by 20% to 90% so if your ferritin is low you don't want to take it. Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. I would be concerned with taking the Mucuna since you are taking ropinirole as it does basically the same thing as ropinirole so might lead to augmentation which believe me you don't want.
Thanks for your help Sue. Only just joined the rls group, been trying to find a cure for years but to no avail. My GP doesn't know much about rls even went private to a Nurosergeon and was told to take Colazepam and Ropinirole . This worked for a while but still suffering. The rls has eased a bit since taking the Gabapentin but have been through Augmentation several times over the last 30 years. Not a very nice experience. Just been trying to find a natural way to help, fed up with the side affects of the medication. I might try and reduce the Ropinirole while taking the muccuna and will definitely have my ferritin checked asap.Thanks again 👍
In my 40 years of RLS I have tried everything.Acupuncture, diets of every sort, magnesium citrate, even laying on of hands.
All to no avail.
I find using therapulse does ease symptoms but nothing stops them.
I’ve tried substances that raise dopamine levels, including mucuna and tyrosine. They are overstimulating to me so my heart starts to race. For the same reason I could never take ropinirole. But it could perhaps theoretically work for some.
Hi. If you can't get an opioid to help you through the tapering and withdrawal, order red vein kratom powder (as tea from the netherlands-Joolsg has posted the site or I can find). It stops rls in the middle of the night in minutes and allows you to sleep...until you get your meds and your longterm plan set.
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the use of tramadol for rls
Kratom effectiveness
RLS what for I do now
Pregabalin Overload!
