I’ve been suffering from RLS badly since May and my life feels like it is falling apart. I think part of my issue is my GABA receptors are messed up for being on benzos 12 years ago for about a year which was hell to get off. Had insomnia for 2 years getting out of the hole. In any case I believe my issue is a combination of low brain dopamine and either down regulated GABA receptors or receptors that just don’t function well. I have definitely kept track of my trigger foods and try to avoid MSG, processed foods, and super high oxalate foods. But diet and even regular mild exercise are only taking me so far.
Probitoics seems to be the new big frontier that people of all different types of serous conditions seem to be getting relief from. I also acknowledge the wrong strains or strength could be a risk to make it worse as well.
has anyone had experience trying a high grade probiotic and did it help or hurt?
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Insomniac88
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Hi, my restless legs goes hand in hand with my IBS (irritable bowel syndrome). Both have gone better with probiotics. If you like, I can tell you which ones I take. I got mine from eBay at a reasonable price (I live in the UK). It's always worth a try.
Thank you, I have a hand full now I can research. I just started taking a spore based probiotic touted by Dr. Max Lugavere on his podcast that seems very promising so I will update everyone as I stay on it for a time. If that doesn’t work or hurts I’ll move on to some of the other ones everyone had mentioned.
A good probiotic will help to heal the gut and improve absorption of minerals and iron.I use Symprove. My daughter saw a top gut specialist several years ago and he said the only probiotics he recommends are Symprove and VSL.
I have no idea if Symprove helps my RLS because I take it for general health and my RLS is controlled by Buprenorphine.
Are you on any medication for RLS?
A good probiotic and adequate iron can vastly improve RLS.
Okay thanks for the feedback and I’m not on any medications. After getting protracted benzo withdraw for 2 years that nearly killed me 12 years ago I am extremely cautious to pharmaceutical solutions. In general my nervous system is sensitive and my receptors seem to modulate to any psychoactive substances I take regularly.
I’ll check out those probiotics though!
I have been taking a probiotic drink daily for about 2 months now. It contains bacteria known to help RLS. I have also been following a strict anti inflammatory and low glutamate diet for several months now. I don't eat anything after an early dinner. I also try to walk regularly. All of this has enabled me to reduce my medication and I barely experience RLS. My main concern is PLMD however, and it's always difficult to comment on that as it happens while asleep.
Rob, that is great news about your reduced symptoms. Could you tell me which probiotic you are taking and/or the bacteria strains that help RLS you mentioned?
Welcome to the forum. You will find lots of help, support and understanding here.
I haven't had any experience with a probiotic, but can perhaps help you with your RLS if the probiotic doesn't help.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. 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) unless there is some special reason s/he feels you need it. 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. (Pregabalin is more expensive than gabapentin in the US - you don't say where you live). 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 as the peak plasma level is 2 hours. 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)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
You know some of this already: 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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thank you Sue! I had a test done a while back and they said “everything looked good” however I am getting a much more extensive blood work done this Monday which will include a Ferritin test, so I will make sure to compare the numbers! I do try to eat a good amount of grass fed red meat and iron enriched wheat cereal (not sure how bio-available enriched iron is). Hopefully the test does show low levels for an “easy” fix. I did take an iron supplement for a few months over the summer and didn’t see much change. I have also read that sometimes you can have regular iron levels in the blood but low levels of iron in the brain due to poor metabolism of the iron resulting in low brain dopamine.
Hey there, I am not on any medications and haven’t been for 12 years since the benzo debacle. Honestly I was wrapping up college and just had some friends that introduced me to benzos to deal with stress and I asked my doctor for a script for anxiety which he didnt bat an eye at starting me on. Looking back I didnt need it and I had never experienced insomnia until getting off benzos in 2013. I struggled for about 2 years and was normal from about 2015 all the way to May of this year. I suspect stress, especially financial stress, has been a big trigger for what im dealing with. I also noticed shortly after the benzos cessation that anti histamines and SSRI's trigger RLS for me so its something ive been prone to for a long time but havent really suffered from until now.
If you are taking SSRI's that can definitely make RLS worse. So can some antihistamines - are you. The only safe ones for RLS are claritin, allegra and zyrtec.
Thank you! I completely agree on all points. I do take a hydro powder with magnesium in it. This last week has been a large improvement with most nights being fully restful sleep. So to your point the months of diet restriction, walking several miles, magnesium, and now probiotics may be slowing turning this ship around. Last 4 nights I have slept 8 hours and it was restful sleep. There is hope…
Just to clarify on the SSRI’s, I was on them for 1 week in 2013 after getting off benzos and it made things so much worse I haven’t been on any psychoactive medication since. I was originally on Xanax for probably 5 months in 2011 and then on klonopin through 2012 and part of 2013. I can tell you if I were to take even the slightest amount of any benzo today, it would mess me up for a long time. 20% of ppl that take benzos will develop a bad reaction to it, look up Heather Ashton’s work if your curious. My sensitivity to anything GABA-ergic is so severe that even if I drank 1 cup of green tea (containing L-Theanine) or smelled lavender essential oil, I won’t sleep at all for about a week or more. Those are just a couple examples of a very long list of GABA-ergic things that give me horrible insomnia.
I will have to check what kind of iron I was taking but definitely willing to try I deffierent form.
Just an update, this last week I have slept normally most nights so I might be turning a corner here… will keep updating
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