just completed phase 1 of an RLS study of a wearable e-stim device for RLS. For me, redults were mixed. Worked well on Right leg which has much milder symptoms than the left. The left did not respond well to the continuous stim. When I’ve used TNS in the past, a modulated wave form was more effective. Gave the researchers feedback on that. One size does not fit all, especially with RLS that is so variable from person to person. Will participate in Phase 2 next mo th, which are sleep studies with and without the device to correlate biometrics with use of the device.
right now, for the next few weeks, I am trying a combination of supplements that seems to be helpful. I take 2 sublingual L- Thani e tablets , two GABA tablets and l- tryptophan that doesn’t trigger RLS for me as it does for some. Only awake for 20 minutes last night and no walking around. I will need to stop that two weeks before the next studies. F ER lt good to get better sleep for the first time in ages. It would be nice if it kept helping. I don’t tolerate Gabapentin or Lyrica snd augmented on Prami.
Yes, me too. I go to bed thinking I’ll sleep, then it starts, goes for hours some nights. Leg stretches and exercises help some, but I got a knobby foot roller from Amazon, it calms it some of the time.
I'm assuming since you didn't mention it that you aren't taking and medicine for your RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Hi Sue, I'm 81 and have been Px Pregabalin 300 x 2 daily, 1am.and 1pm, since 1 week ago.Px Gabapentin previously.
I'm having some dizzy spells very worrying for me, since the former. Should I stop this medicine until I see the Dr which won't be until after the Christmas holiday. Its capsules so can't split them. Help please! Thank you so much. X
How can I reduce these meds?.. I altered the times from previously to the following times 2pm and 10pm as per your advice but this med is much higher.. Thank you so much. X
If you do want to reduce the pregabalin you will need to ask for a prescription for 25 mg tablets and then reduce it very very slowly so you won't have any withdrawal effects. If you start too, go back to the previous dose and wait longer. If needed you can open the 25 mg capsules and divide the contents in two.
If you have only been on it a couple weeks, the dizziness may subside or get less. Do not stop it abruptly or you will have withdrawal effects. I would give it 4 or 5 weeks to see if it subsides or gets less enough you can put up with it. 2 questions - why are you taking it twice a day? 2. What was your experience with gabapentin? Did you have dizzy spells with it too?
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute
Sue, thank you so much for all the information you sent to me, It’s a lot to take in. MDs are not up to date on RLSI believe private citizens with RLS are in the know, doing much research, trial and error. I am due to see my Dr soon for my yearly and I will approach her with all the information you have sent me. You must had done hours and hours of research. Me, I type in RLS and not get much of anything but things not to do or eat or drink. This information is invaluable, I thank you so much for all you have done in research, I’m sure going to chew on all of it. Thank you again!!
I think we all have a closet full of gadgets. I can almost tell which ones may help on different nights. I do a Qi Gong sleep sequence that let’s me sllep for about an hour and a half before the legs kick in, then I use TNS that I attach to my legs every night and can easily turn on when the legs start. WLking always helps, but it usually start again pretty quickly after laying down again. I keep resistance bands by the bed and use them for stretching or resisted ankle exercises. Sleep for me is a series of short naps. I’ve fallen asleep with my feet on the ground with my torso laying on the dining room table. I’ve fallen asleep taking a hot bath in the middle of the night( thank goodness I have an exaggerated startle response so I don’t drown). I sometimes use compression pumps on my legs. CBD gummmies with THC works great, but I work in the medical field and can loose my license and job if Itest positive ( random testing) so It’s rare that I’ll risk it. Probably become a pot head when I retire!
To funny but not!! Jen I to have fallen asleep standing up in shower! I do not know how I stayed and didn’t fall! Hot water turned cold and I was still sleeping!! 😴 My husband woke me in middle of night! Fell asleep in tub of water same thing turned cold etc! I must have had the hand of our God holding me up 🙏 CBD & THC gummies work for me . Although the last 4 times that I’ve eaten just one yummy sour gummy and fallen asleep I get woken up with RLS in upper back and arms!!! One night in my low back and butt cheeks!! Omg I’m getting to old for this!! The nightcrawls!! The rocking back and forth!! When u finally fall asleep & wake up in morning you fed like you did hours of a work out!! My body is wrecked with pain!!! People just can’t fathom what us Nightwalkers go through.
When I first started getting symptoms no one ever heard of it. A PT gave me a book about Fibromyalgia (btw this was in 1996). I literally thought I was going to lose my mind!! I had a newborn and every time I got up to feed him bc your so tired I would start rocking n rolling while breastfeeding!! Imagine this!! Fast forward I now have 2 kids. By the grace of God again I found Dr Walters from JFK neuroscience Cnt. He gave me my life back. But he left to Vanderbilt Institute. Omg I’m so sorry I’m rambling!! Fast forward I had several surgeries. Back then a C4/5/6 fusion twice. In 2001 & 03. DrW put me on Pramipexole & oxycodone. It was a Godsend. I’ve been on basically this regiment since. However the pain meds were at one point I took 15mg oxycodone immediate release as needed and 30mg oxymorphone 3 x day extended release! Well I’ll tell all of you….. I never never had an episode of RLS for years!! If I did I either forgot to take the pramipexole or I had a lot of activity that day. Then my Dr was basically attacked by I think cdc or the dea. They said he was over prescribing!! Mind you 80% of his patients were over 50 to at least 80 yrs old!! It was a nightmare!! Now I take less then half of what I had I’m still peeing in a cup every other month! Dr won’t budge with RX and I have episodes a plenty every other night!! I had an L4/5 fusion a year ago and had the worst episode of my life after waking up in my room it started at 3:00 pm lasted till after midnight!! I slept for about an hour. I was screaming for God. Hospital staff had no idea what to do. They “heard of RLS “ No education about it!!!! I tried to tell them how to help but that only made it worse!! It happened again 2 days later!!! Nightmare!! Bc I wasn’t supposed to be moving!! Ok sorry I digress now for real thanks everyone for letting vent I guess…. Btw I’m so glad I found this site. I am a member of the RLS Foundation which Dr Walters is one of the founders. If you shop on Amazon you can choose a foundation to donate every time you shop. Check it out. Bc I can’t remember all the details. This foundation has seminars for other doctors to EDUCATE them. We all must do same to try and tell our stories or tell staff in Drs offices about RLS. Ok I’m done!!!
HeBgBgirl, my heart and prayers go out to you. I agree that doctors are not up on RLS and they need more education and studies on it. It disrupts so many lives and your case is especially critical for treatment. Talking about information not talked or taught, I didn’t know RLS could affect other parts of the body, it’s bad enough in feet and legs but other parts of the body too. I have gotten some Kratom, the red and have been taking that before bedtime, probably about 2 grams at around five or six in the evening, I am in bed usually by 8pm. I am no good unless I get at least 7 hours of sleep. I don’t know if the Kratom is helping or not but I was sleepy by 7 last night and went right to bed to take advantage of the grogginess. The red Kratom I am taking is in capsule form. Two nights of it has been good, who knows if it is really working but it was worth a try. You talked about a Tens unit, I had thought about ordering one on line. I have a foot vibrator but it is loud, but it works to relieve until I fall asleep. I wish you luck and God’s grace to help you at least get control of this bad medical problem affecting so many people.❣️
I re-read your post again and it wasnt you who used the TNS, but you may try it. I’m sure with back issues like my husband you have used one. I am going to Amazon to see if there is a TNS/vibration/massage unit that is for feet.🙏🏻
sorry I’m just seeing your reply now!! I know 7 months! 😜🥴😵💫 tens unit anywhere near my feet or legs would wake up the demon!! So I stay away!! Sometimes even heating pad!! Or when it’s hot and I’m sitting!
haandyjen, I have thought of getting a Tens unit especially for feet and legs, what unit do you have? I am going to go on Amazon to see what units are good for Tens/massage, vibration. I have taken red Kratom the past two evenings about two hours before bedtime and have gotten off to sleep before RLS hits. In fact all I had to do was think about getting before I go to sleep and that seems to trigger it. I even thought about it two nights ago after taking it and got no reaction. Of course that’s only two nights, only time will tell.
i can’t get Amazon to load up for some reason, but type in wireless TNS. A wired TNS unit is a hassle to deal with. The one I use is a small round unit that clip onto a large butterfly ekectrode that works really well on he leg contour. It is a simple unit, but pretty easy to turn on/ off. It has six different modes. You just have to choose which one feels best to you. I like the second mode because it feels very massage like. I put it on before getting into bed and do a preemptive stim session. I can usually fall asleep with it on. They all are programmed for 25 or 30 mi Ute sessions. The electrodes last if you take care of them. I always order a few extra sets to have on hand. I took an old sock and cut the toes off and slide it over the unit to keep it from falling off with all my leg motion. Good Luck!
Where do you order Krayom. I’ve thought about trying it.
Thanks for the TENS unit information, I see several wireless units on Amazon, I will check it out after Christmas. I need to look at the ratings on them all. I get my Kratom from Kratom Country. I ordered the 1oz pack of Maeng Da white caplets. Just google KratomCountry.com. Taking them about two hours before bedtime I have been sleepy by then and if not sleepy, I have been falling asleep in minutes. The white vein is for relaxation and calming, feeling of wellness, unlike the green which gives energy.
Thhanks for the correction, I was misinformed. I will do my own research from now on and not rely on the advise of a friend. Ordering some red now, although I have been getting some good sleep using white before bed time.
I was just corrected on the Kratom information I gave you, it was wrong, for sleep you want the red Kratom, not the white. I was misinformed so don’t order the white, that is for energy, I’m sorry I told you wrong, I pray you haven’t ordered any yet!
I did a little research and read some reviews of people with RLS and ordered a small amount of red vein to try. I have weird reactions to medications, so wanted to try it first. How do you feel withthe Kraton?
do you stay asleep? Do you have any episodes of RLS? I don’t know if I have multiple episodes a night or if I’m just intermittently falling asleep and waking up to non stop RLS. I get up walk around, feel better, go back to bed and it starts up. I sometimes have to walk around for an hour stretch, take a hot bath then maybe get another hour if I’m lucky before I repeat. I don’t know how I function some days.
I stay asleep until Ihave to hit the bathroom from two to five times a night. I try to not think about things at that time and usually fall back to sleep. Since I have been taking Kratom before bedtime I am having some strange dreams to almost nightmares. I have not been having RLS the past week though. I read a couple of chapters in my Bible and that seems to make me groggy enough to move my dog over and we both go to sleep.
I think sometimes I am so tired that I’m hyper. I can manage if I can get at least 4 hours of sleep. However that means I have to be in bed by 9-9:30 and I can’t always do that. I do a lot of meditating and deep breathing to shut my brain off, but the RLS still happens. Lately it starts around 10 and doesn’t quit until 4am, which sucks since I have to be up by 5:30 for work. I’m trying to get a schedule change to 9:30 to 6 to allow me to get some sleep, but not having much luck. Only a few more years and I can retire and do split sleeps
I take about 2.5 grams about two hours before bed time. I go to bed and read until I feel groggy and turn out the light. It gives me really strange dreams, last night my husband and I were staying in a huge resort, like we could afford it, and couldn’t find our room, then I couldn’t find him. What was that all about, but really strange. We didn’t even get to enjoy it. 🥴
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Help needed with an RLS study in Newcastle Upon Tyne
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