Hi I had a telephone consultation with my neurologist yesterday and I told her I was just about managing with my rls I take one 0.088 mg Pramipexole and two 75 mg pregabalin at 9pm and two codeine at bedtime I just get by although sometimes in the evening my legs are so bad I feel physically sick! Walking or doing some activity does relief the symptoms she knows about augmentation and told me codeine was recommended for rls although she said in three months time when she contacts me again we may have to look at increasing the dosage of Pramipexole!! I know I don’t want to go down this road again having suffered augmentation in the past and know the hell it can be!
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Hoochybaby
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Dear Hoochy, I know it's three months away so this is premature but in your shoes I would definitely not increase pramipexole from 0.088mg. And I say that as a pramipexole returnee myself. I know that your situation is very difficult but, as you clearly anticipate, that way will lead to further suffering. You will have to find another drug. Have a look at the recent post by LanaCSR about his/her experiences on dipyridamole.
Apologies if I am repeating myself here but have you tried the various diets? There is a very enthusiastic following of the low oxalate diet on the US forum and it seems like everyone (though it is a small cohort) who tries the diet finds it effective. Go to bb.rls.org and put 'oxalate' in the search bar or look up 'notnowdad' as he was the original poster. It seems like you are likely to find an improvement within a few days if the diet is going to help so it doesn't take long to work out if it is worth persevering with.
There are also strong proponents of keto and/or anti-inflammatory diets on here and elsewhere but I would say that, anecdotally, success with these diets seems to be more mixed. I tried a keto diet for a couple of months to find only a modest alleviation of symptoms.
The simple solution - get another doctor, preferably one that doesn’t believe pushing pills is the solution to everything.Try looking at your diet and lifestyle.
My wife had RLS and bad headaches for over 30 years. We both moved to a high fat, low carb (keto) style diet and her symptoms all but disappeared overnight.
Like most chronic illnesses it’s down down to what we’re eating and our lifestyles.
No-one, especially the ‘medical profession’ will convince me otherwise.
Hoochybaby in reply to
Thanks for your reply could you explain what the ‘ keto’ diet is ? I get confused over the conflicting diets the are often bandied about? High fat, low fat, high fibre etc etc so confusing!
in reply to Hoochybaby
High (good) fat, moderate protein and low carbohydrates.There’s loads of good stuff on YouTube or try visiting the Noakes Foundation on the web. Professor Tim Noakes is good to listen to if you want to get to the ‘truth’ about food and in particular carbohydrates.
That is confusing because everyone says their diet is BEST. And, there is no BRST. You have to do it on your own, with elimination diets, to see if it would even help.
Best site for keto diet info ruled.me/
Most folks try keto for weight loss but it is implicated in many remissions of seizures, Rheumatoid arthritis and other conditions.
Hoochybaby in reply to
The last one I was told was an oxalate diet??
in reply to Hoochybaby
Sorry, never heard of it.The convincing thing for me was the science behind the keto or ‘Banting’ diet and finding out that insulin resistance from eating too many carbs causes chronic illness.
Carbs are the enemy, not fat!!
There’s fat in every cell in the human body and we can do without carbohydrates altogether - the human body doesn’t need them yet we’re constantly being told we do!!
Krickets in reply to
I’ve been on the keto diet for two months now, I have lost weight but it hasn’t helped my rls at all! I take a low dose of oxi and do just fine. As my neurologist said you will have to be on something for the rest of your life and if oxi works why torture yourself with the meds that cause augmentation!
One more thing about keto is, it forces your body to switch from burning carbohydrates (and hence glucose/sugar) as fuel, which is bad and causes insulin resistance and chronic illness to burning fat, which is good and natural for the human body.
Hoochybaby in reply to
Apart from avoiding potatoes chips etc I do eat plenty of veg and fruit as well as cereal ie porridge whole wheat bread and yogurt what else do I need to change?
in reply to Hoochybaby
Just about all the above!! You’re eating a lot of things that are making you ill.There’s no such thing as a healthy cereal!!
Bin the fruit other than some berries (strawberries and raspberries are best).
Certain veg is OK, mostly stuff that grows above ground.
Yoghurt is OK as long as it’s full fat natural or Greek.
I would advise looking up the lists available for free on the web or watching a good YouTube introduction to keto to get the overall idea.
nightdancer in reply to
Diet does certainly NOT help everyone. RLS is caused by blockage of the dopamine receptors in the brain. D1 AND D3. I suggest you look those up. After 40 yrs of RLS and my groups and my research, I have no one that says their RLS is "CURED" by diet. Anything that helps is a treatment.
in reply to nightdancer
Thanks for your arrogant ‘suggestion’ but no thanks.Your attitude is typical of your profession and why I’ve lost all faith in the medical profession.
Joolsg in reply to
Have you considered that RLS has many causes? Kidney failure causes RLS as does spinal surgery and spinal scarring. RLS is common during Pregnancy. Anaemia can trigger RLS.No change in diet will make any difference to RLS caused by these conditions.
I understand your evangelical zeal now that your wife has found the trigger for her RLS but not everyone has the same triggers.
Last week someone reported that taking Skullcap drops had completely resolved her RLS. If I told you that your wife could ditch her diet and just take Skullcap drops instead, you would quite rightly disagree with me. Similarly if I told her that all she needs to do is take 3 magnesium pills a night. So many people report on here that magnesium is the solution.
I'm sure your wife has tried magnesium and found it didn't help her at all.
We are all different.
It's brilliant that diet has helped your wife but it doesn't help everyone. So please don't think people are disputing your wife's success story, just accept that diet is definitely NOT the solution for everyone with RLS.
Hi manerva thanks for your replyYes I have made up my mind I will not be following my neurologist recommendations of increasing the dosage of pramipexole I’ve been down that road and I’ve no intention of doing so again at the same time I’ve no appetite for increasing the dosage of Pregabalin I suffered heart palpitations after incremental increases of Pregabalin to eventually reaching 300 mg and seeing that I take the blood thinner apaxiban I decided that it could be dangerous to keep upping the dosage.
I can at the moment just about get by with the codeine and occasionally taking paracetamol. I have always had what I think is a healthy diet ie plenty of fruit and veg not too much red meat and plenty of fish
I could of course be entirely wrong and making my rls worse I’ll keep an open mind on the matter. One thing I do know that makes my rls worse is sugar and caffeine and I try to limit my intake. I don’t touch alcohol of tobacco.
I try as suggested keep an open mind and I’m always willing to listen to other people’s point of view. Rls seems to be an insidious disease and effects people in many different ways and what works for one will not work for another
Thank you and others for continued suggestions
in reply to Hoochybaby
Sorry I forgot about the problem with the pregabalin.
As others here have already suggested, don't increase the dose of pramipexole. I've done the same half way through 5 years of taking it, until 5 weeks ago (0.125mg). I am currently in the final stages of weaning off and I am amazed that my body is slowly coming back to RLS levels in symptoms to when I started the prescription. It's a terrible first two weeks but I see the light at the end of the tunnel.
Whether there is a connection between dieting and RLS doesn't matter to me as long as it makes me feel better. I have reduced my amount of caffeine for example. I love my latte in the morning and afternoon, but only take one in the morning now. My wife does a keto diet and I am too by proxy. I can tell you that I feel better because of it. That's all that counts.
But I will avoid pramipexole and it's siblings like the pest for the rest of my life unless I end up with Parkinson's disease.
Hope you will find "your" solution to get better.
How did u get off pramipexole? I’was on it then went on Neupro patch I was at 3mg down to 2mg it’s burning my skin having a lot of trouble sleeping also on 1800 mg Gabapentin
I decided to wean off from it in stages over a month. starting with half a pill, then a quarter pill. The following 2 weeks on zero were horrible as expected. Barely any sleep, absolutely aggravated and irritated, a sleep walking zombie - if there is such a thing.
It's just about a week now since I feel that things are getting better and in the last three days I can actually get 6hours of sleep on a regular basis. My sleep cycle is still all screwed up and I am taking some naps in the afternoon. However, like a miracle, my RLS is almost all gone! I am extremely thankful for this channel and the suggestions. I may sound like a fool, but I feel like am reborn.
I believe that my RLS will still be there just at comparable levels to when I started taking pramipexole 5 years ago. But it will only bother me one out of 10nights and maybe during a long flight.
I'll wait another week and will write up my own experience here on this channel.
I don't know if this works for everybody, but at the moment I can tell you that the two weeks of absolute torture was worth it.
And I will be very, very careful next time my primary physician makes a suggestion concerning my nervous system.
Did u have trouble sleeping before u were at zero? I’ve only reduced 1 mg and having trouble!! Your story is very encouraging
yes, over the last year, what I now know as augmentation, has set in and RLS moved to my arms. The pramipexole effectiveness started to fade from month to month and I had symptoms showing up in the early afternoon. I had at least one or two nights a week in which I could not sleep at all. It affected my work performance.
I learned about augmentation and that the escitalopram which I was taking for my anxiety was actually enhancing all my RLS symptoms and decided to detox from both. I think working from home remotely and not walking around at work as I used to made it a lot more apparent.
I believe that my RLS was pretty bad already when I started reducing the amount to half and I didn't feel much of a difference. It really only hit me when taking 0. The first week was really bad. It started with pretty much no sleep until my body quit with 2-3 hours of sleep, the again 3 days without sleep. It would progressively get better in the second week, with fewer and fewer RLS symptoms and 2-4 hours of sleep per night to the 6 hours I am at now starting the third week being off of it.
I am a research scientist, but this is even striking to me how much damage this stuff causes to your system and how it affects our lives. I am originally from Germany. I don't know how RLS is handled there, but in the US (where I live now) realization is only starting to set in now. For the first time just last week my wife and I watched a commercial in which a supplement of some form was advertised and how it can help with people suffering from augmentation from dopamine agonists. It was an 'aha' moment.
While currently my RLS is pretty much gone, I feel my anxiety levels coming back. But those are manageable.
Thanks for your information, I’ve just got to take one day at a time and be determined to do this! Did u take anything to help with your sleep? Need lots of prayers!! I’m in USA also
Seeing what others posted here I was determined to come off from this with force and no workarounds. "Cleansing my body" sounded like the best solution. I even reduced the daily amount of caffeine. From the posts here I knew what to expect and when I got there my decision was reaffirmed. The procedure is working I told myself. I informed my better known colleagues and supervisors at work and my family who knew what was going on with me along the way. I didn't have to explain or justify why I am taking sick leave because I couldn't sleep for example.
I wrote this in another post. We have a wonderful dog who flunked out as a service dog, who was with me throughout the nights I couldn't sleep, taking walks or lying on the floor moving my legs around because there was absolutely no position in which the RLS would not drive me up the walls. He knew something wasn't right with me and tried to help. I would not want to miss that if I had to do this again.
Hi,my husband has RLS for over 30 years now. We even travelled from FL to CA to get true expert help after suffering from refractory RLS. As far as I understand the treatment of severe RLS, like you have, the medication change might entail changing Codeine to Methadone. A low dose of 5 to 20mg could eliminate the need for not only Codeine but also Mirapex even Lyrica . If you stop Mirapex your RLS will get worse in the beginning. My husband quit cold turkey, went through hell, a few weeks later got on Methadone in CA and was RLS symptom free immediately.
Here is a link to JohnsHopkins with info. Maybe your doc is also interested.
hopkinsmedicine.org/neurolo...
Of course I am not a doctor. I would highly recommend this book:
Clinical Management of Restless Leg syndrome by Hochang B. Lee MD
2nd edition Mark J. Buchfuhrer MD
Richard Allen PhD
Wayne A. Hennig MD
It is the best book on RLS. We found it on Amazon.
Sadly we can't get methadone here in the UK.
Codeine according to the literature has a low effectiveness for RLS.
Table copied from 'Clinical Management of Restless Leg Syndrome'.
Yes I have Dr. Buchfuhrer's medical book and know codeine is the least effective opioid. I also know methadone is the most effective from Dr. Winkelman's opioid study.We just have to hope the medical profession in the UK updates their outdated, non existent knowledge of RLS and how to treat it effectively. Sigh.....
Yes I’m surprised my go and neurologist have both suggested and put on repeat prescription codeine for meI’ve read it should be used on as a short term drug and that it is addictive just another example of lack of knowledge or care in the medical profession?
I'm currently coming off roprinerole, augmentation and a poor GP saw me taking 4 times the maximum amount. I'm down to 4mg from 12/16. I wont ever go through this again, I am going to try other methods. And I have been taking this medication for over 15 years. I do really hope you find a solution 🤞
Please see the pinned post about the Campaign to get RLS taught. Your story is exactly why we need the campaign. Lack of teaching causes GPs to prescribe negligently. I hope you can help by writing the template emails and letters.
Where do I find the pinned template?
In the pinned post section. Or just look at posts above yours.Here's the link
Please try the tens machine not expensive from chemist or Amazon and follow instructions ,I have mine on for around 4 hours a night before bed I can now sleep, have an open ,take care
Hoochybaby in reply to
Hi I have a tens machine but sadly it didn’t do anything to improve my rls
Opioids hun, only medication out there that truly work's and believe me I know having suffered with severe rls since I was I teenager and I'm 55 now. I've tried everything and I mean everything and it's the only thing that work.. guaranteed
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