Insomnia with mild RLS

[ilovebluewater]

Hi, All. I have mild RLS but rather significant insomnia. I've had both for decades. The way it goes now is that I go for many nights with limited sleep and then have a night or two of slightly better sleep and start the process over again. What OTC supplements have worked for you? I'm extremely hypersensitive to medications, so am looking for a kinder and gentler way to go before sleeping pills. Also, I have IBS so if you recommend something please tell me when you take it and if you'd recommend taking it with food.

[SueJohnson]

Safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA.

[Reb0013 in reply to SueJohnson]

Hi Sue, do you happen to know if Passion Flower is safe for RLS. I remember taking it for insomnia a few years ago before my RLS began "full time" and it works great for insomnia, however, it lowers blood pressure. I had to stop for that reason - I got dizzy. My normal BP is 107/64. It lowered it to around 80/54.

[SueJohnson in reply to Reb0013]

It's safe for RLS but it is generally recommended that one not take it for 2 months.

[Reb0013 in reply to SueJohnson]

Thank you for that input!

[SueJohnson in reply to Reb0013]

I meant not more than 2 months.

[ircam2112 in reply to SueJohnson]

Sorry, but none of these are ”safe” Sue. How these supplements effect the brain’s functions and body are little and poorly studied and therefore, not understood. Many have moderate to major interactions with medications and disease processes e.g.) Valerian Root is very hard on the digestive system and short/long-term use may result in new intestinal damage or make any existing problems worse.

Referring to my other, longer comment about OTC supplements below about supplements being unregulated, you can’t be certain (unless USP verified) that the supplement contains what it says it does and that it doesn’t contain unspecified ingredients and impurities, such as heavy metals. The only way to find out otherwise is to call the company and ask….and trust what they tell you is accurate.

Also, neither 5-HTP or GABA can cross the blood-brain barrier so can have no direct effect on the brain’s sleep-related areas.

[SueJohnson in reply to ircam2112]

I have only said they were safe for RLS meaning they don't make RLS worse. Several studies have shown GABA helps with stress which can certainly keep one awake and some more recent studies in '80, '81, '82, and '02 have shown it does pass the blood brain barrier although in very small amounts . "In one study with 40 adults with sleep difficulties, people who took oral supplements with 300 milligrams (mg) of GABA one hour before bed for four weeks showed a statistically significant reduction in the time needed to fall asleep. Similar results have been found in other limited studies with a similar design." And certainly a number of people have said it produces a calming feeling which helps them sleep. At this point I got tired of researching so I didn't check on 5-HTP but a number of people have said it helps them sleep. I agree with you on USP.

[SueJohnson]

Berberine (Daruharidra) is an OTC herb that is helpful for IBS. Xifaxan (Rifaximim) is an antibiotic that has been used to treat IBS and actually helps RLS in some.

[ilovebluewater in reply to SueJohnson]

Thanks for the heads up about Berberine. I will give that a try. I take dicyclomine (Bentyl) nightly. I was offered Xifaxan several years ago but didn't take it for two reasons. The first was that a side effect is insomnia and I couldn't fathom being entirely awake for the 14-day course and second, my regular health care group doesn't offer Xifaxan as the bacteria will repopulate and I would have to do it all over again creating what they thought was overuse of antibiotics. I checked recently and they still refuse to treat it with Xifaxan.

[Hidden in reply to ilovebluewater]

Hi Love, have you been tested for SIBO? I was tested and was negative, but like you have IBS and I too am med sensitive. Both brain and gut. If you try the berberine you can’t take it at night. It will make the symptoms of your RLS worse, but in the long run should make it better. If you do have SIBO, or even just IBS, the berberine may be beneficial: amymyersmd.com/article/berb...

In terms of treatments for insomnia that are RLS friendly I would not go with 5htp or tryptophan, because it would seem to me they could make RLS worse. They are precursors to serotonin and melatonin -both of which make the symptoms of RLS worse if taken at night. I recommend 1/4 of a 50mg tablet of trazodone. Trazodone is not a controlled substance and not a drug of abuse. The less you take, the more sedating. Good luck!

[DreamerTED in reply to Hidden]

This is something we've not heard: the less you take the more sedating. My husband takes 100 mg. My husband's experience is very similar to ilovebluewater's.

[ilovebluewater in reply to Hidden]

Thank you so much Salem! I really appreciate the advice. I did have the breath test for SIBO and tested positive for both methane and hydrogen. Good to know I'm not the only one that starts with 1/4 of a pill! Haven't tried Trazodone, so will put it on my list.

[TeddiJ]

You could give kratom or hirsuta powders a try-that way you can measure out just a tiny bit of powder and build from there. Red strains of kratom stop rls in minutes and are also for relaxation and sleep.

Mitragaia.com (you can sample a small bag of kratom) and teatimebotanicals.com (small bag of hirsuta).

I add a Delta 8 gummy for great sleep (get at any smoke shop).

[Hidden in reply to TeddiJ]

Howdy, I read you’re switching to Hirsuta for a while. I think that’s a great idea. Do you think it might be time to restart berberine? Right now it’s closing in on 1am and I’m debating whether to even take the iron. After I had Covid back towards the end of October and then a secondary bacterial infection (treated with a Z-pak) my RLS seemed worse -a lot worse. It started earlier in the evening and 25mg of iron didn’t cover it. I needed 50mg every night plus one night I slapped on 4 of the 15mg iron patches. After that night I decided to try probiotics in the form of cultured foods - mainly Kimchi. After about 3 or 4 weeks of eating it every morning I felt like I had a herxheimer reaction. It’s a flu-like feeling that happens frequently when taking antibiotics and as the dying pathogens are flooding your system. In the mean time there was zero improvement in my RLS. I decided I should cut back on the kimchi and add Berberine. I kid you not, that first night I felt like my RLS was back at baseline which isn’t great but manageable and predictable. 2.5 weeks in and it’s non-existent. My son came home tonight to spend the weekend and brought sushi which I nibbled on at 11:30pm. I normally would be running for the iron within 10 minutes of consuming any food at that late hour. I am only recommending this to you. My little experience here is far from a controlled study. And let’s see how it goes as the weeks wear on. Or when I stop taking it in about two months. Anyways, I know you tried the berberine before and lived to tell about it so I think you should add it to your stack again. Sweet dreams Teddi!

[TeddiJ in reply to Hidden]

wow!-that-is-so-interesting!-amazing!

[Hidden in reply to TeddiJ]

The answer is out there. I’m sure there are other natural substances that can up-regulate our receptors. I pretty much assumed that berberine could help someone return their receptors to baseline after being on dopamine agonists, but now I think it can improve receptors beyond baseline, albeit temporarily. If I were to stop the berberine for too long, ie six months, I’m sure my receptors would march their way back to lousy-hood. Keeping our receptors in tip-top shape is a life-long endeavor. Likely to include not only berberine in the morning but also things like a 12-14 hour fast most nights and exercise to the point of gasping for air. Easy, no 😅

[Qalba in reply to TeddiJ]

Same here. 1/8 teaspoon of red Kraetom or CBD sleep gummies help with insomnia with no side effects for me.

[ComfyT in reply to Qalba]

Red Kratom helps some. ( for me )

Nova is giving out 3 free samples for $7.98 shipping.

Their red package is good !

It just came today and you get 3 good size samples for free ;))

[ilovebluewater in reply to ComfyT]

Thanks for the tip!

[ilovebluewater in reply to TeddiJ]

Fabulous advice and I am especially appreciative of the links. Have read about Delta 8 gummies on this forum for awhile. I'm definitely going to give them a try!

[BeachGolfer]

I had been using 100 mg. of CBD capsules but kept waking up frequently which didn’t result in a restful sleep. Recently I gradually added Delta 8 THC gummies. Now with 25 mg of the Delta 8 I wake up once and fall back to sleep. I now sleep on average about a total of 7 hours. I wish you the best with finding what works for you.

[Qalba in reply to BeachGolfer]

Same here. I find this helps with insomnia with no side effects.

[ilovebluewater in reply to BeachGolfer]

Thanks BeachGolfer and Qalba. Those are good reviews. Delta 8 gummies are speeding to the top of my list to try.

[halperinchen in reply to BeachGolfer]

hi,BeachGolfer,wouldyoupleasesharewithmethestrengthofDelta-8withme.myhasdelta-8fromHemphas20mg

[ilovebluewater in reply to halperinchen]

Thanks for the question, Halperinchen. I would love to know that as well as the brand if possible.

[halperinchen in reply to ilovebluewater]

Hi,ilovebluewater,asIrepliedtoSuethatiamnotabletowritewithspacesinbetweenforwhateverreasonIdon'tknow.Sorryaboutit.ThebrandihaveisTwoHawkHempCo.Eachgummycontains20mgDelta-8Hempandcbnfor5mg.Thanksforyourpatience.

[BeachGolfer in reply to ilovebluewater]

The brand I use is Pure Kana and each gummy is 25mg ( not grams) of Delta 8 (not 9) THC for sleep. I take it one hour before I want to go to sleep. I also take low doses of Oxycodone for the restlessness. The Oxycodone does not help with the insomnia except for decreasing restlessness so the gummy and CBD can work on the insomnia.

[SueJohnson in reply to halperinchen]

Why no spaces? Makes it hard to read.

[halperinchen in reply to SueJohnson]

Itseemsaproblemwitheithermycomputerorthewebsite,itisveryfrustratingthatIamnotabletotypewithspacesbetween.

[SueJohnson in reply to halperinchen]

A suggestion to make it more readable until you figure out the problem. : Try-putting-hyphens-between-your-words.

[halperinchen in reply to SueJohnson]

Thanks,-sue,-it-is-a-good-idea,--You're-a-genius.

[halperinchen in reply to halperinchen]

Hi,-Sue,-I-still-puzzles-me-as-why.--Thanks.

[TeddiJ in reply to halperinchen]

My-browser-safari-is-doing-that-too!I-have-had-to-write-responses-elsewhere-and-then-paste!so-frustrating-and-a-new-issue

[halperinchen in reply to SueJohnson]

DearSue,Couldanyonetellmeaswhyicannotwritewithspacesinbetweenhere??

[SueJohnson in reply to halperinchen]

Unfortunately I have no idea.

[Typicallygaslit]

You sound a bit like me. I have now come to regard my insomnia as RLS as it can be a wide spectrum disease that includes unnatural wakefulness. Because of fibromyalgia, I just didn’t quite see the pain and discomfort in my legs as an aspect of RLS. I’m just saying that you may have worse RLS than you think. In this case, it’s not likely to be resolved with supplements.

Having said that, I had some luck with some herbs a number of years ago, but over the years, I have become over sensitive to them just as I’m over sensitive to most drugs. The reason is that most herbs and drugs that normally help you sleep, stimulate serotonin, and it has the opposite effect on me. This problem of mine with excess serotonin levels is progressing over time. It’s also an aspect of my version of RLS (so while we all seem to be sensitive to serotonin, not everyone is as sensitive as me). Depending on where you are in the progression of the disease, you may or may not tolerate the herbs people are suggesting. I definitely don’t tolerate things like valerian and tryptophan, or glycine. The herbs I used for a while were Chinese herbs. There’s a formula called Emperor’s Heavenly Pills that worked before I entered menopause. I currently use Ashwagandha and l-theanine at night as these still seem ok, they help but don’t get me to sleep. Hope this helps.

[ilovebluewater in reply to Typicallygaslit]

Hi, Typically. We are alike and I appreciate your voicing a feeling I was having which is that I'm so used to the RLS that it's just normal. I do move pretty much all night right now. Will put Ashwagandha and I-theanine on my list. Have heard about I-theanine on some podcasts I listen to. I'm quite curious about it.

[Typicallygaslit in reply to ilovebluewater]

I’m at a point where I’m trying opioids along with the sleeping pills I’ve been on for years. It’s a struggle. L-theanine doesn’t make me sleepy, it actually picks me up, but in a good way. I’m assuming it’s having a slight effect on dopamine which could explain why it feels as if it’s warding off some of the nightmares I get from serotonin.

[Rebasteve50]

I've been taking Hylands Restful legs for several years and haven't had any problems . I usually start with 2 and adjust depending on how bad the rls is I take it about 30 minutes before bed time. I've never had to eat before taking it

Sometimes I jhave take it again during the night. I've had better results with this that any prescribed meds

Hope this helps

[ilovebluewater in reply to Rebasteve50]

Thanks, RebaSteve. I've seen it advertised. I'll put it on my list.

[SueJohnson in reply to ilovebluewater]

I used Hyland's Restful Legs and it worked well for 2 or 3 months, but then it stopped working.

[ircam2112]

There are minor and major problems in taking any OTC supplements : unknown safety issues; unknown effectiveness; pharmacologically impossible effectiveness (many, like 5-HTP and GABA can’t even cross the blood-brain barrier); suspected and unknown drug or organ effects and ; known/unknown/potential side-effects profiles. Also, as OTC supplements are unregulated, there is no state or federal oversight that verifies that what is claimed to be in the bottle is actually in the bottle (unless the supplement’s purity level is verified by organizations such as United States Pharmacopia (USP) usp.org/about-usp. Many studies have shown that supplements vary widely in terms of the amount of the supplement that is actually in the bottle. Some have even been shown to contain 0% of the claimed substance and/or various levels of heavy metals and other harmful substances. The supplement industry is part of the ”wild-west” of healthcare. If you’re going to take supplements anyway, it’s important to know this and to, at a minimum, use only those that have the “USP verified” seal on the package and to check on websites such as drugs.com to determine potential drug-interactions.

I don’t like to be a contrarian but, as a safety issue, it needs to be said that are no OTC supplements for insomnia, or any other condition, that have been shown through research to be safe or effective. Any supplements that are proven to have the claimed, positive, psychoactive effects (effects on insomnia, sleep, cognition, mood, energy, focus, etc) and to be safe, are reviewed by the FDA and, if approved, are re-classified as medications and then regulated.

In the USA - using the examples of Valerian Root and 5-HTP (but this comment also applies to other supplements) - all supplements are required by the Food and Drug Administration (FDA) to have a warning statement on the packaging that states: “These statements have not been evaluated by the FDA. This product is not intended to diagnose, treat, cure or prevent any disease”. The supplement companies are not allowed to make any statements that are contrary to this warning so they make vague, non-clinical statements that “sound” clinically relevant with medically-meaningless action words such as “supports”, “calm(s)“, “mood”, “energy”, etc.. These statements are designed to come as close to FDA prohibitions as possible without meeting them, confuse and “fool” the public and to sell as much product as possible. The Valerian Root label (attached photo) is particularly creative: “Traditionally for Relaxation”*. The “*” referring to the FDA warning is the most important part of that phrase.

Photo of supplement bottle

[ircam2112 in reply to ircam2112]

5-HTP (can’t cros the Blood-Brain Barrier - BBB)

Photo of supplement bottle

[ircam2112 in reply to ircam2112]

For me, Valerian Root is VERY hard on my digestive track and helped prompt an ER visit.

Photo of supplement bottle

[MrCrow]

Just curious, did the RLS come first or the Insomnia? I've seen this pattern with myself and several others where they develop insomnia due to stress or other reasons first. The Chronic stress anxiety and sleep deprivation then at some point causes RLS. With adequate relaxation, the intensity of both problems reduces.