Considering the algorithm for someone diagnosed with RLS goes, Gab/Iron then Pregab then Short acting opioids then long acting opioids, all in all how much time does one typically have (average figures from your best estimates) to lead a somewhat livable life.
I'm 30 and am confused. I feel like I might need to retire before my career even begins. How do you work a job that requires engineering skills without a fresh and sharp mind on 3 hours of sleep per night. I could have never dreamt of something like this consuming the best years of my life.
No doctor is able to give me advice on how to plan things.
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MrCrow
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tl;dr: I havn't been able to figure out a cause except stress and anxiety. Pregabalin sorta gave me breathing problems and Opioids may not be available in India.
To answer your questions,
"Were you prescribed anti depressants at a young age? Is your serum ferritin low."
I was prescribed Lexapro 10mg for about 6 months and then tapered off of it over another 6 months last year (I turned 30 then). I remember getting this zappy feeling when I'd turn my eyes sideways after the final taper from 2.5mg to 0. It went away eventually. My iron was fine the last time I tested it. Ferritin level of 115.
"If you can find the cause, you may find a long term solution."
That's the whole issue. I haven't been able to find any cause. I thought maybe it was the vitamin B and D levels which were a bit low. I took D3 and B complex supplements for several months and nothing changed. I have tried a whole host of supplements all for about month or a few more weeks each like l theanine, GABA, l tyrosine etc. etc. Nothing worked. Should I have taken them for longer?
"And presumably gabapentinoids have not worked for you?"
I tried pregabalin at 75mg. I didn't feel any difference w.r.t to the sensations. Slept a little better for a few days though. The main issues is that after about a month of use I started feeling breathless when about to fall asleep. I'd feel breathless and then be woken up because of that feeling as soon as I'd try to sleep. Not sure if this was because of stress or the medication itself. Probably the medication since I haven't felt it much after I stopped taking it.
I have also tried pramipexole for a about 1.5 months. Started at 0.125mg up titrated to 0.25mg after 4 days. It seemed effective the first few nights. I could feel my legs calm down a little. Went from 4/10 to like 2/10. But over the next month I didn't find any benefit. I have occasionally tried taking 0.25mg of it on just 1 or 2 occasions just to see what would happen and literally nothing other than feeling a little queasy in the stomach.
The only thing that seems to make a dent is great sleep and relaxation. Occasionally when I haven't been able to get sleep, I'd take clonazepam for a few days and the feelings including the pain would completely go away. I'm talking about the kind of sleep where you feel like Jell-o after waking up. Like when we were kids and had great sleep after a tiring day.
For instance, just recently my symptoms were spiking up and my legs would jolt me awake when I was trying to fall asleep. This continued 2 nights in a row so I took some clonazepam and slept great. Woke up next day and the symptoms had gone from 5/10 to 0.5/10.
Now that I think about it, I was completely RLS free when I was on clonazepam from Jul '23 to Nov '23. and post the cold turkey (from 0.25mg of the substance) my RLS woes began.
I also wonder if there is a connection between the symptoms and my anxiety levels. I sometimes scroll through this space and reddit and find all sorts of horror cases where nothing works and the patient's body has become a torture chamber of sorts. This drives my anxiety levels up and makes things worse. I then find myself poring through google scholar, pubmed, youtube, anything really to find that next great revolution in medicine that's gonna work really well for RLS. Maybe the great genius, "I" can find/figure something out that the doctors have not. Sadly as you know there is much greater research in how to trim your fat ass after eating like a pig your whole life than something that can literally be hell on Earth. Hooray capitalism!
"But you are presumably back in India where opioids are not prescribed for RLS?"
About treatment options India, I have had only a few data points so far, so am unable to make a judgement:
1.) Went to 2 neurologists last year and both prescribed pram as first line. The first one said that it's curable and just take the pram for a few months and it will go away. The second acknowledged augmentation when I brought it up but also said that opioids have even worse side effects and so aren't prescribed long term.
2.) I talked to heatherrls who is a member here and his mother is in agony taking a heavy dose of pram but is unable to stop because withdrawals from tapering off of it are brutal. He went to the top hospital in the country AIIMS and the neuro there prescribed this. The neuro knows Diego Garcia and is aware of all the issues with augmentation and still wont prescribe opioids. He has been trying to get hold of a neuro who might prescribe opioids but has been unable to find one in India thus far. He said that he's considering moving to Australia but that's easier said that done for Indians (too many Indian immigrants everywhere already).
3.) Talked to another gentleman from India who was on 1mg pram and had RLS across all his limbs. He cautioned against using opioids because the withdrawals are brutal. he said that he has tried Tramadol and had to constantly go up the dose to find relief till he reached the max and still had symptoms. According to him Tramadol is somewhat easier to get a hold of in India. I however didn't verify from him if he tried tramadol after completely being off the pramipexole or not.
This is all I know about treatment in India so far. I could try going to other Neuros but how do I know in advance who will or wont be updated with the latest findings and be willing to prescribe the right meds. There are doctors with 30+ years exp. here who will prescribe pram and ropinirole and watch your augment to high hell.
That was sobering and upsetting.The doctors who insist on prescribing dopamine agonists have caused hell.
There's no point adding opioids to dopamine agonists to 'treat augmentation in limbs'. Augmentation Always breaks through.
They're good to help you get off dopamine agonists.
Tramadol is interesting. One study shows it caused augmentation. There have been no further studies. A few people on here have reported it made their RLS worse.
Others report it works well.
Most of us on opioids will not need to go through withdrawal because, hopefully, our doctors will keep prescribing them. And our RLS isn't going to suddenly cure itself. RLS is like MS or PD. A neurological disease that needs medication for life ( unless iron infusions or eliminating known triggers resolves it).
You say you were prescribed lepraxo - but presumably you had already been diagnosed with RLS? Anti depressants can trigger RLS for the first time in susceptible patients. In your case, they will probably have worsened your existing RLS.
Anxiety most definitely worsens RLS symptoms.
Hopefully, Indian doctors will start to follow the top US doctors and realise dopamine agonists are extremely dangerous.
I'm still hoping for UK doctors to wake up and read the research.
I can't speak for longevity but my GP in the UK wouldn't prescribe gabapentin without me seeing a neurologist first as it's off label for RLS but was happy to prescribe codeine 30mg which has resulted in 100% RLS relief which I've had for decades. Long may it continue!
Once you find what works for you, with minimal side effects, you should be able to get close to a fully normal, productive life and career. The time it takes to get there varies, but you're ahead of the game by doing your research and reading this board.
I've had severe RLS since 1985 and it uncontrolled until 7 years ago when my doc prescribed Buprenorphine. Before that numerous doctors tried numerous meds and other treatments but nothing worked linger than 3 months. I'm ecstatic the Bupr has worked for 7 yrs and I've actually been able to decrease the dose significantly. However, it does cause me insomnia.
RLS --> Insomnia --> Buprenorphine --> No RLS. but Insomnia? How is this a right treatment for you then. I thought the biggest issue with RLS is the insomnia.
The biggest issue with rls is the excruciating sensation that you relieve by getting up and moving around. Hence you don’t sleep. When I have insomnia but no rls symptoms I’m very happy.
Exactly! That feeling was so painful to me and the disability of not being able to control the muscles in my arms, legs or face was total misery. If there's a better treatment out there that works as well as Bupr but w/o the insomnia then I'll find it and switch over. But until then I'm happy with Bupr despite the insomnia.
Low-dose methadone has worked to give me 8 hours sleep for the last 6 years. Many others report the same relief with buprenorphine. The trick is finding a doctor with the knowledge and courage to prescribe them.
I envy you foreigners. I’m stuck in India where I don't know who to go to for treatment. When I mentioned my symptoms I was given pramipexole. Hearing other cases of pram here i feel it’s more prudent to take a bullet to the head than be on it long term.
Print out the above text regarding the appropriate use of low-dose opioids in treatment of refractory RLS. It's from the Mayo Clinic in the US. Find a doctor willing to read it and follow its recommendations. Good luck - you'll need it.
After years of being on Methadone, the only thing that worked consistently for my severe RLS, I'm drug-free and RLS-free on the carnivore diet. I don't know if it will work for you, but it's been an absolute miracle for me. Good luck.
I was basically on a carnivore diet when RLS first struck me down. I was a triathlete eating as much protein as I could. Therefore, I imagine that going back to such a diet would not work for me. But congratulations on finding something that works for you.
I am not on a carnivore diet. But I have cut out all sugar, trans fats and all flour. It took me 6 months on this diet for my RLS to go away. I strangely started to get night cramps in my left foot but now that has also started to diminish. I am now extremely slowly tapering off gabapentin, doing pretty good down from 1200mg to 600mg already. My RLS was very severe and I augmented on pramipexole. Last 2 years have been a total nightmare that often made me want to die. But I see now the light at the end of the long tunnel.
hi MrCrow sorry to hear of your dilemma especially so young. Have you tried any of the electrical pulse items. I use the TENS Therapulse it sticks to your leg and use it for 15 mins each leg per night. Not saying it will work for everyone but for approx 25-30gbp on amazon it was worth a try for me and certainly works
I will add that I am on pramipexole twice a day and no augmentation
It was suggested by one of the drs at my gp practice that I could increase my dosage to 5 tab s per day but then the other gp said no way the max is 3 tabs per day. Figure that one out. UK NHS 🥴 left hand doesn’t know what right hand is doing 😊
Im ok with it so far and unlike a lot of people on here I do manage to get a good nights sleep with my nightly regime though I will maybe try to move onto alternatives to the pramipexole though am dubious to go onto Gabapentin or pregabalin with the associated side effects. I can live with things as they are for now but if things change then I know there is help
Strangely enough my mother used to suffer with rls though it wasn't called that then or at least wasnt recognised by the UK NHS. She used to swear by tonic water
There is a new device on the market, developed in conjunction with Dr. Buchfuhrer, called Nidra [nidrarls.com/ TOMAC]. It is not yet available outside the US, but over the past year it has been more and more available inside the US. It is a wearable device that stimulates the peroneal nerve to relieve RLS. One person on this site said it was "life changing" and another wasn't enthused. The person that stopped using it was bothered by the device itself, not its efficacy. Initial clinical studies suggest that, over time, the brain can rewire itself to stop responding to the neurological stimulus that causes RLS. It's not a cure, yet, but there is definitely hope. The FDA classified it as a "breakthrough device" and that doesn't come easily. I'm still waiting to see a neurologist that can prescribe it, and will report back.
I don't know what insurance you have, but it is covered by Medicare in the US now. The signals in your arms are also coming from your brain. I don't know enough about it, but I think it should give you hope for the future. If it works as well as the initial reports, it will be available in India. Don't know how long it will take, but they just got FDA approval about year ago, and it takes time to train people and ramp up manufacturing.
If the device works as well as hoped, it will eventually be manufactured in India and sold for a fraction of the cost. Yes? If it doesn't work, lots of money will be cast about in the US without benefit. I just wanted to give you some hope. We all understand the frustration and fear of living with this chronic disease.
I hope so. TMS is now available in India at a fraction of the cost. Fingers crossed that this eventually arrives in the US. I wonder if there is a way to recreate what the device does using a sophisticated tens unit.
I wish I had a solution for you. My severe RLS left me with 2-3 hours of sleep a night - drive 1/2 hour to work, work all day, drive home - no real sleepyness. I could only determine - it's the Glutamate neurotransmitter overtaking the GABA neurotransmitter - excitable all day and night. Go to sleep, wake up an hour later legs dancing, no control - walk, walk, try again. Eventually, raise my legs up to almost vertical with couch cushions - another hour or so of sleep. On and on. Iron supplements cut into the RLS like a hot knife in butter - dramatic improvement - insomnia remained.
I think at this point you should consider a dramatic diet change. Ketogenic metabolism has been shown to treat many mental health issues. It is not an easy diet to follow, but it could offer relief. A new popular book is Brain Energy by Dr. Chris Palmer.
I am going to add - there are a few websites that claim a Keto diet can actually cause Restless Leg Syndrome - so there's that. Prior to my severe RLS kicking in (no pun intended!) - I experienced nightly leg cramps - not just a casual cramp but the large muscles of the legs - could barely walk, extreme pain. My solution was sea salt and cream of tartar in water. It mostly worked and I started a course of Electrolyte capsules in addition. An electrolyte imbalance is cited as a possible result of the keto diet.
I still think there is a gut/brain connection to RLS, neurotransmitters, and mineral absorption.
One last thing is the supplement N-Acetyl-Cysteine (NAC) can help with the imbalance of Glutamate and GABA. Here is an older HU post that I responded to. Subsequent I have been taking NAC for months now (daily, 600mg).
Hi DicCarlson, very interesting hypothesis. I've added electrolytes to my daily regime with positive results, and I double it up when having a hard exercise day. Other minerals included. Even with aging we seem to have a need to supplement potassium and magnesium etc. I might try your suggestion of NAC. Thanks
I've found that eating foods high in glutamate increase any symptoms of RLS. Things like cheese particularly. There's some evidence that people who suffer from RLS have higher than average amounts of glutamate in the brain. It's worth looking into. Plus for me SUGAR is a huge trigger, even when successfully treated with buprenorphine.
I'm interested that even on pramipexole your symptoms aren't controlled. I thought that it was a given that it will work for anyone with RLS= which is why it's a miracle drug... until it's a nightmare drug!
My advice is to try tramadol, as you mentioned it may be available to you. I've used it successfully for 25 years. Yes, it is tempting to increase the dosage over time, so AT THE START, I recommend you find the lowest dose that gives you RLS relief, and allows you to sleep, then apply your mind to finding the root cause of your RLS.
It took me many years to find and solve mine - I needed more iron in my brain, but my brain barrier wouldn't allow it. That problem was solved with chelated iron tablets. Once my brain accepted the iron, I could work on lowering my tramadol dosage, but then I encountered other challenges. For example, too much iron also exacerbates my RLS. But I continue this process with the goal of one day reaching ZERO tramadol. I truly hope you find the help you need.
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How can I get some real relief from this RLS torture?
Dr Winkleman Dr Buchfuhrer 
Lyrica
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