Hi! My name is Jannine and I am 44 years old. I have suffered with what the doctors and neurologists term Restless Leg Syndrome - the thing is - it's not only in my legs. My arms, my hands and sometimes my entire body "twitch" for want of a better word. It began roughly 15 years ago and has progressed to the point where I am on 4 x Pexola 0.25mg at night. I take two directly after dinner to enable me to enjoy people's company without being the party entertainment and two when I climb into bed to see me through to 5am. I read an article on a "gadget" called a Restific. From what I have read I gather it is a type of bandage that wraps around the legs and presses the nerves where they would "twitch" causing relief. This seems like a pretty good non-medical alternative for symptom relief. When my sleep depravation and the Pexola get together I can hardly function some days and feel as if I am trying to keep up with the world in some form of slow motion dance. The Restific may relieve some of my fatigue. Has anyone heard about it or tried it? I would grab with open arms any feedback on this devise. Many thanks.
Jannine
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Hi! Thank you ever so much Kaarina! I will have a look at it! I am in South Africa and wonder what would be available here but I am sure the info will be very helpful. I appreciate it very much.
Hi Kaarina, thank you - that was certainly a good read. I am definitely going to investigate getting it here in South Africa. It is not available yet but it sounds like it would be just the thing to help me out. I so appreciate your help. Jannine
Has anyone mentioned augmentation to you? Pexola is also known as Mirapex (brand name) or pramipexole (generic name). It belongs to a class of drugs called dopamine agonists. You are taking a high dose of it (.25 mg to .50 mg. per day is the recommended maximum dose.) Your symptoms sound like augmentation which happens to most people who take pramipexole for many years. The drug dosage which originally helped stops helping and ends up making rls worse. The problem is temporarily "solved" by increasing the dose but eventually returns. Increasing the dosage only adds fuel to the fire. It's like giving more heroin to a heroin addict because he/she doesn't get the same "kick" from the original dosage. It happened to me. Eventually i was switched to another dopamine agonist (the Neupro patch 2 mg.) but I have augmented on that. My symptoms are far worse now than when I started on .25 mg of pram. seven or eight years ago, a dosage which was increased to .50 mg when the original dosage didn't work. It wasn't long before the new dosage didn't work.The symptoms came on earlier in the day, spread to my arms and torso and were
far more severe than when I started the .25 pram. As already stated, I was switched
to the Neupro patch but augmentation quickly set in. I have to get off all dopamine
agonists. This very difficult and should be directed by someone who is an
expert. I am going to Johns Hopkins in Baltimore to see Dr. Christoper Earley,
a recognized rls authority. JH has a research centre for rls. Lots of info about
rls, including augmentation, is found on the website of the Restless Leg
Foundation (rls.org) I don't know how much info is free and how much is only for members. It only costs $35.00 (USD) a year to belong and has been an invaluable source of education for me, the best money I ever spent.
Orrell, I too live in the U.S. Thanks for the JH info, $35.00 is a cheap price to pay if they have info that works or helps us. I. Going to look into it right now since its 3:44 am and have been up since I tried going to bed at midnight. Actually I went to bed earlier because I was exhausted from being up the whole night before. My problem tonight is that I was late taking my meds (TRAMADOL 50 mg) and the RLS started and I got it all over my body and once that happens it's very hard to get relief again till I start moving around during the day. I take a second pill around midnight but tonight even the second pill hasn't given me full relief. I just read another post about someone getting incredible relief from Oxycodone but I'm afraid of getting dependent on it. Thanks again for your info.
Orrell, thanks for your quick reply, I certainly will look up the MM (medical marijuana), for sure my kids would love to see their mom smoke it, hahaha. I have three sons and I have warned them that it might be hereditary and my oldest said he has had sort of symptoms like what I have. Who do you go to get approved and where does it come from? Is it delivered right to your home or doctors office? Have you already tried it to co firm it works? Let me know Thanks.
Johannasuar: The laws about MM are different in every country and sometimes (like the USA) in every state or province within the country. Your family physician may be a good place to start. He or she should be involved in the decision. My family physician referred me to a local cannabis clinic which determined I was a suitable candidate.The clinic passed my info on to a licensed MM
supplier. That was about a week ago. I await the arrival
of my MM. When I try it out, I will let you know how it works.
Orrell, that was a super fast reply , thank you so much. I live in the state of Florida and the laws are pretty strickt here. There are no clinics yet for the MM, I actually know a few people trying to get the law passes but it's taking a long time
because so many people want to get in the game. please let me know if it worked, then I will figure out how I can get a hold of some, of course with my GP.
Johannasuar: In addition to MM you should have a neurologist who has lots of experience treating RLS. They are hard to find. The RLS Foundation has a search engine that can help All you have to do is type in the name of your community. I know of one in Atlanta Georgia to whom I would go if I lived closer, Dr Lynn Marie Trotti. Although I don't know her personally, my wife and I are friends of her (Canadian) parents. In fact my wife and her mother have been friends for at least 60 years. Her parents are coming for lunch in early August during their annual visit to their Canadian family. Dr, Trotti is Professor of Neurology at Emory and is one of the newer members of the Medical Advisory Board of the Restless Leg Foundation,
Hi nightdancer, first I want to say that I LOVE your pseudonym, it fits just about everyone. Yes, I live in the USA, my state, Florida does not approve MM, it's on the making with lots of fights but not yet approved. Funny we're chatting about this because today on the radio was a discussion about how MM is not good for anything except for people with MS. Studies haven't proven its medicinal purpose for anything else. Have you heard anything?
Let's not forget marijuana in any form is illegal in the UK. Only us from the USA can really discuss this subject. there are 24 medical marijuana states and also 4 states where it is as legal as alcohol. having said that, I live in a medical state, and it DOES help me.
Oh my hat! I had never heard of augmentation until I read your reply! Good grief! That sounds exactly like what has happened to me! I am utterly devastated! I would dearly love to hear what they have to say at John Hopkins. Living in a third world country I know my options are more limited but the more I can learn the better I can manage this dreadful thing! Thank you for sharing your experience with me. I really appreciate it.
JannineB, before I suscribed to this page I never had heard of augmentation either, unfortunately, like you, it was happening to me as I was learning about it. I take TRAMADOL 50 mg., have been for about five yrs., but recently I've had to add another 50mg. Right before bedtime. I space them six hrs. apart and can truly relax through the night but a couple of nights ago I didn't space them properly and let the RLS start and it hit my whole body I almost couldn't get rid of it till the weeee hrs in the morning and was up the whole night pacing, sitting up, watching tv standing etc......I have tried Gabapentin which did nothing except made me gain 25 lbs in a very short time, I got off quickly and managed to loose the weight and luckily I found the TRAMADOL. I looked up the John Hopkins RLS page, it's a good read. They have help lines. You said you're in a third world country, can you share where you are?
Thank you for your reply, sorry to hear about your rough night! Eeeek, I have had nights like that. I had not realized that you could gain weight on some of these meds. It is so helpful to know what other people do in terms of finding the right balance to get a good nights sleep so thank you for sharing. I don't mind saying where I am from. I live in South Africa. Hope you sleep better. Jannine
Jannine, this is a good read. Dr. Buchfuhrer is a expert on RLS. He recommends when having augmentation that doctors give a strong pain med to help with the withdrawals. that happen when coming off a dopamine med. The article explains why these days, the dosage of the dopamine meds should be kept as low as possible
Thank you for your help. I sought my doctors advise after reading about augmentation. It is called Takifalaktis in my country. The doctor has started to wean me off the Pexola and has prescribed a codeine based pain med to help. My first two nights were excruciating but my body is slowly settling down to the "new normal" at the reduced amount. I hadn't realized how much your body "kicks back" at you when you deny it the Pexola. Frightening!
My symptoms have become so severe that I have been thinking of taking my doctors advice and try the Dopomine drug. I am a very active 81 year old and have suffered RLS since I was 14. Do you know how long it would take for me to develop augmentation if I attempted to take it. I have written down all your valuable info and will Google the web sites accordingly.
From what I can tell Restific has only been used in one small clinical trial. We are waiting for more info. Like u I often wake in the night with RLS from head to toe. 300mg gabapentin helps me get 5 hours of sleep. I just started a 3 week rental trial with Relaxis, a vibrating pad under legs that helps reduce RLS. Free trial period thru August. Seemed to help last night.
Bajatom, yes please keep us informed on how that relaxis pad goes for you. No one is using it yet in the USA as they are waiting for their insurance to allow cover for it. Well except you and you are doing a 3 week rental trial. Are you still taking any meds for RLS while using it. ?
in reply to
I have just read you are still taking Gabapentin. I read the comments quickly and didnt see what you were taking.
Hi Elisse, I just completed my first week using the Relaxis pad. Before reporting how I did I will provide some background into. First, you can read the research and other items at myrelaxis.com. The clinical trials (double blind) included 157 people (or thereabouts) with more than 60% having significant relief. On that basis the device was approved in the USA by the FDA. It is expensive, $1053.56 including shipping and handling. They encourage renting it for three weeks for $100 to see if you benefit. Until the end of August there is a $100 rebate for rental or purchase. I decided to give it a three week trial. After the rental rebate I only pay the cost to ship it both ways if I send it back. Otherwise I get $100 back on the purchase.
I have had RLS for at least 50 years (now age 78). For about 15 years I used very small dosage of Klonopin (1/4 - 1/2mg) at bedtime a couple times a week when I had sleep deficit. A former student of mine completed her MD in nuerology two years ago so I contacted her for her recommendation. She had me taper of the Klonopin and start Gabapentin at 300mg at bedtime and up it to 600, 900, or 1500 until I got results. I was lucky and got 7 hours sleep (2-4 normal) the first night on 300mg. I did not like the groggy feeling in the morning but it was gone after a weak cup of coffee. But I don't like to take medicine so I decided to start tapering off Gabapentin as I started using the Relaxis pad. My RLS usually does not kick in until 1 to 2 hours after falling asleep. I wake up buzzing from head to toe. Even with Gabapentin that happens now and then I sometimes I never get back to sleep. I have cut the medicine to 150mg first week and starting tonight I will go to 75mg. I found that if I put my calves on the 16x21 inch vibrating pad when I first go to bed (setting the vibration speed until I don't feel the RLS, then it goes off automatically after 1/2 hour) I fall asleep faster and have gotten 5 to 6 hours of continuous sleep. When I wake I stretch and go back to bed for an hour or two, again using the Relaxis for the first half hour. Even though I have reduced the amount of Gabapentin I use, I am getting more sleep. We will see if it continues for the next two weeks. One problem is that if I wake up after a couple of hours with bad RLS and turn the device on it sometimes wakes my wife up. The vibration can be felt/heard as a low rumble. So this morning I took it to the living room at 4am and used it on the couch and went back to sleep for an hour. If the device continues to work and lasts for three years it could be cheaper than medication and of course hopefully fewer side effect. A few people in the trials reported their RLS worsened. You do have to experiment with best frequency to use and how to use it. Hopefully it will be covered by medicare and other plans in the future.
Someone recently reported buying a full length pad at Amazon for about $75 with both vibration and heat. I hope they report back. I'm wondering if there are other vibration (massage) pads out there that are smaller that might work. The Relaxis seems to be of high quality, but the price seems a little high.
I will report back in a week with more info on how it is going.
Thanks for the info, but i have done my research on the relaxis pad when it first became known. In fact i knew about it way before the FDA approved it for RLS use. I had forgotten that the study was for more people than i said. I am in the UK, and it will be coming here at some time. But, i am sure it will be to buy it, and there is no way i will pay that sort of money to find it didnt work. I very much doubt our NHS would fund it for us here to get on prescription. I know that it can make RLS worse for some people and can take 3 weeks for it to settle back down after stopping use. But good luck with it, will look forward to your results of its use. Also anything that vibrates can send some people's RLS to go into overdrive. I hate the meds too, they all give me side effects the next day, but i plod on.
in reply to
Oh, and we only pay a small amount towards our prescriptions in the UK, and as i am retired all mine are free.
The relaxis pad was only a small study too. I think 30 people.
have you tried taking L- tyrosine a few hours before bed, this raises dopamine.
I got terrible RLS after stopping smoking and I made it worse by quitting coffee, I had all sorts of neurological symptoms , even a little tremor. The dopamine certainly stopped but I could not take it for long, now it gives me headaches.
The thinking seems to be along the lines of an iron/dopamine relationship.
Gentle exercise seems to help but I have only really looked at anecdotal reports
Jinz, thank you very much for the information and your experience with Tyrosine. Everyone on this site is very grateful when new treatments are tried and discussed. I googled Tyrosine and it seems that it undoubtedly helps our brains in the "production" of dopamine. Based on autopsies of brains of people claiming to have had RLS during their lifetime, both primary and secondary RLS, the dopamine receptors in our brains (specifically a part called the substania nigra) are VERY bad and our brains (not our bodies) are VERY low on iron. The good news is, we have plenty of dopamine. Go figure. We just can't shuttle that dopamine down our spines and to our legs where it is needed to calm them.
So yes, if you're up for trying Tyrosine then I would absolutely try one iron pill on an empty stomach at night with some vitamin c. If you buy a better form of iron (called Easy Iron or Gentle Iron) then you might not even need the vitamin c. It may take a few days to kick in or maybe right away? After a week or so if you plan on continuing you should discuss with your doctor. Iron seems to work for people with RLS even when they are not anemic and even when their stores are healthy? But it should only be taken during an attack or before bed and on an empty stomach.
As you probably figured out, caffeine and nicotine are great at temporarily relieving RLS. That's because these substances, unlike Tyrosine, cause a release of dopamine. And like any substance of addiction, including the prescription dopamine agonists and opiates, they "down regulate" our already pathetic dopamine receptors. So when you stop, your RLS is worse than before. Your RLS might even get worse as you are taking these substances, eventually.
I did some research recently on how to up-regulate our receptors. It seems that consistently under-eating or intermittent fasting will up-regulate our receptors. So too will anaerobic exercise, allegedly. It seems that whatever makes us hungry or angry or push our muscles to the brink will up-regulate our receptors...just the opposite of pleasurable substances that down-regulate them. It is probably a life long pattern that you have to maintain if you want to keep the RLS at bay.
Just as Tyrosine helps us produce dopamine, I read that a substance called Uridine 5 Monophosphate will help us build more and better dopamine receptors. It should be coming to my door any day now. I have infrequent but severe RLS so I am not a very good guinea pig. But I will take it and report back. I'm not too worried about it because it is found in abundance in mother's milk and they add to infant formula...I guess because it is such an essential nutrient. Good luck and thanks again Jinz!
By the way, what other drugs are you taking? People on this site have reported a worsening of their symptoms or even a triggering of symptoms with digoxin, statins, anti-depressants, anti-histamines, antacids, anti-nausea, estrogen, and maybe 5HTP or melatonin.
I was on ssnri antidepressants for 6 years and had a terrible 2 years withdrawing from them. It was after this that I quit smoking , perhaps this is why I got the rls on cessation. Ive not taken any medication since, i take a wide range of vitamins and minerals , i cant say iron or magnesium or fishoils helped, again, its difficult to know what i would have been like if I didn't take them but I initially thought I had tardive dyskenesia or akathisia as I was incredibly figity for several months. I also felt a strong compulsion to stretch and rotate my ankles and move during the day and my tongue was almost impossible to keep still. None of my movement are involuntary. I also have various other jerks and some near constant fasalculations in my feet . I'll try the iron and vit c over the next few days and let you know.
Thank you, but I'm just spitting back what I've read on the internet and here. And the SSNRIs are supposed to be more RLS friendly than the SSRIs. Were you taking Welbutrin? Magnesium is supposedly a dopamine "antagonist" so whereas it may be good in the long run I wouldn't take it before bed. But the iron probably does have to be taken before bed to work from what I have read on here. Iron does not seem like a cure and a matter of fact it seems virtually impossible to be a cure since our brains can't hold onto it. So you have to keep feeding your brain a little iron whenever you have an attack.
I would not go down the prescription drug route since you have worked so hard to give them up. People on here report good results with tonic water because of the quinine in it. But quinine is not really any different than a prescription drug and is a dead end that will likely only down-regulate your receptors. People on here have also reported good results with bananas, but from what I have read you need a lot more potassium than what's in a banana to get relief. Potassium citrate or Potassium tartrate (aka cream of tartar - 1/2 teaspoon) may provide relief if you are desperate. Some people report relief with curcurmin/mustard - teaspoon is a glass of water. Like all of the above, it seems these things have to be taken during an attack or at night to work. And likely not a cure.
Ahhh, that's great news. Now I can sleep. I predict a full recovery J.
Just as I was about to click on your post which I was notified of via email, I got a news flash from Dr. Mercola. I used to follow him pretty regularly but these days I mostly hit delete. Anyways, the headline caught my eye. Turns out that it's about "intermittent fasting" which I have only recently noticed even though it's been talked about for many years. The article talks about its benefit for a multitude of conditions, including brain function. Take a look at the chart of conditions it helps but take special note of very bottom, right hand corner.
Jannine I have the same problem. Just not restless legs but my whole body has a compulsion to move. It is so hard to function when I get these bouts every 2 to 3 months and is totally exhausting. The past few years the symptoms have become so severe that on the first night I only had 1 1/2 hours sleep. I live in Australia and am wondering if I can obtain the medication you take that is if it is working for you. I feel really sorry for you if you have it constantly. RSL is the most nerve racking medical problem and so exhausting. Sally
Hi Jeannine,I have tried this. They are small pads that fit on your feet. They didn’t make any difference to my RLS and I found they came off during the night quite often. I don’t use them anymore. A lot of expense for no benefit! Having said that they may,of course, help you as different things seem to work for different people.
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