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Restless Legs Syndrome

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dlr222 profile image
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since I sleep better I don't wake up as much with restless legs. I am taking 2 of the 750 mg Gaba and 2 of 100 mg 5-htp. both available online or in stores. I take them an hour or more before bed.

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dlr222
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24 Replies

Hi and thanks for sharing this.

It's curious that the more I find out about RLS the more I realise what I don't know.

I'm intrigued by your statement, "since I sleep better I don't wake up as much with restless legs".

This appears to mean that you've found some way os sleeping better, even though it may have no effect on you RLS, so you don't get woken up by the RLS.

In contrast, other people claim that if they find something that relieves their RLS, they sleep better. Which is what I've always found.

It appears that you're saying that taking GABA and 5 HTP help you sleep.

One of the things I don't really know about RLS is that if taking neurotransmitters, their precursors (the stuff they're made from) or amino acids from which they're all made actually increase the amount of desired substances in the brain?

For example GABA is a "good" transmitter. Higher levels of GABA in the brain are associated with less anxiety, better sleep and the relief of RLS.

It seems logical then if you take some GABA then it will raise levels in your brain.

It seems that's not entirely the case. GABA is largly made IN the brain and although some can pass through the Blood Brain Barrier (BBB) OUTwards very little passes IN wards.

I don't doubt if someone finds taking GABA improves either their sleep or their RLS that's their experience. But there doesn't seem.to be any explanation for it.

5HTP is different. It easily passes through the BBB where it is readily converted to serotonin. Seritonin is also a "good" transmitter, (sort of). This is because it's associated with some good things, e.g. better mood and possibly better sleep.

The fact that higher serotonin levels, (within moderation) are a good thing has enabled treatments for depression - serotinergic antidepressants.

The drawback to this however is that the substances used for the conversion of 5HTP into serotonin are also used for the production of dopamine.

Ooops, thus lowering dopamine levels.

Antidepressants make RLS worse.

If 5HTP helps you sleep better, hence unaware of symptoms, that's great but be aware that it may be making your RLS worse.

Sorry for the lengthy response.

The thing is if you're finding something works great for you then as long as there's no harm, carry on even if there's no logic for it.

Reb0013 profile image
Reb0013 in reply to

Hi Manerva, thank you for the insight. I do find this difficult to understand as well because I have been taking 500mg of Taurine for the past 7 nights before bedtime and it has helped me sleep better. I haven't changed anything else so I have to believe it is helping.

in reply to Reb0013

Hi again.

I can't say GABA doesn't work, I only say there is no apparent physiological explanation for it.

As regards taurine, it is an amino acid and it is not capable of crossing the Blood Brain Barrier. Since the regulation of sleep and the causes of RLS are in the brain, it's impossible to see how taurine can help with either.

Again, I'm not denying your experience, I'm just saying there's no physiological explanation for it.

I would add that if you're taking 3 things, then if one of them works then how do you know which one? If 2 work, which 2?

My concern is that whereas it's undesirable to take such drugs as gabapentin the food supplement companies are probably making profits from selling stuff that may not work.

Gabapentin is regulated and standardised and has undergone trials for effectiveness and safety. GABA, and taurine most probably haven't been.

Reb0013 profile image
Reb0013 in reply to

humm, the reason I say it works for me is that I do not change anything for 2-3 weeks to give it a try before adding or deleting a new item. I have been taking MG glycinate and Hirsuta for a month and they definitely help but when I did nothing new other than added the taurine I was immediately able to sleep most of the night through. Not sure why.. perhaps I will eliminate it now after 7 nights and see what happens. ???

in reply to Reb0013

It would seem if you only made one change e.g. start taking taurine and it seemed to make things better AND then stopped it and it made things worse then it would seem that worked. So you could start it again.

You could do that separately with everything you're taking. One at a time.

I don't think that there is such a thing as "prescription" GABA.

The two prescription drugs used for RLS are either pregabalin or gabapentin. Neither of these contain GABA and neither are neurotransmitters. They DO work for most people.

The GABA products sold commercially are legally classed as "food supplements".

Of course Amazon and WalMart are going to tell you how wonderful these things are because they're trying to sell you stuff. They're not likely to say they don't work.

A good test of this is if you Google "gabapentin" you'll get lots of authoritative information about what it's used for, doseages, side effects etc.

If you Google GABA, you will probably only get adverts.

However, it does seem inexpensive so no harm done.

THE most significant food supplement you should take is iron. Anything else taken for RLS just relieves symptoms. Iron is proven to be a treatment for RLS as iron deficicency is a major causative factor in RLS.

There is a simple rule for this which is to have a blood test for serum ferritin and if it is below 75 then start taking oral iron.

Reb0013 profile image
Reb0013 in reply to

Thanks again Manerva, yeah, I had iron deficiency and had the iron transfusions.. it did help tremendously but did not completely clear up the RL... but then I discovered I had H. Pylori and now have cleared that up and my RL seem to be gone... at least for now. A lot of praying, diet changes and medical intervention ... sure hope this takes care of it. Still wondering if I have the MTHFR gene though. If I have low iron problems in the future I will probably request testing for this as I understand this would be a cause for not metabolizing folic acid efficiently which in turn can cause lower iron absorption.

in reply to Reb0013

Iron infusions are 60% successful and 20% partly successful. Unfortunately they have to be repeated They treat RLS but don't cure it.

The inflammation from the H Pylori would have excerbated your RLS. As you say, that may no longer be an issue.

There are lots of reasons for not absorbing sufficient iron. One of them is that how much iron you absorb is dependent on hepcidin which is determined by serum levels of iron NOT brain levels. Basically then if your serum iron is OK then there's no reason for high ferritin to be maintained. It will fall. Low ferritin is associated with brain iron deficiency in people with RLS.

It's thus not a matter of how much iron is absorbed into the blood, but how much is transferred into the brain.

Rwall profile image
Rwall in reply to

Hello! Do you know why stomach issues seem to make RLS so much worse? I have IBS and every time I have a bout, the symptoms are so much worse.

in reply to Rwall

It's inflammation.

This is a mediating factor in RLS as it intereferes with iron metabolism.

Reb0013 profile image
Reb0013 in reply to Rwall

Hi there, I have read that there is some indication that the level of cytokines in the blood corresponds to the severity of RLS. Cytokines are glycoprotiens & through their effects on neurotransmitter systems, cytokines impact neurocircuits in the brain leading to significant changes in motor activity. Data indicate that cytokines have an effect on the metabolism of dopamine and glutamate release and reuptake. IBS increases cytokines.

Rwall profile image
Rwall in reply to Reb0013

I shall mention that to the doctor tomorrow! Thank you!!

Reb0013 profile image
Reb0013 in reply to

Yes, true.. or, it could be that iron isn't being absorbed from the stomach in the first place and that is why serum iron is low, and in turn brain iron is low. So many reasons that could be accountable for low serum iron.. copper, ceruplasmin, transferrin, hepcidin, folate acid, H pylori, and the list seems to go on.

in reply to Reb0013

Yes there 's lots of reasons.

Reb0013 profile image
Reb0013 in reply to Reb0013

In reply to my eliminating Taurine ... I eliminated it for the past 4 nights and have not been able to sleep - plus my RLegs are back intermittingly throughout the night starting within 30 min. of laying down up to giving me a couple of hours sleep and then starting and continuting all night until around 4 a.m. ugh... I hate this disease. I'm not saying it was the Taurine that helped me sleep or prevented the restless legs when I took it that one week... could be a coincidence, I don't know. I haven't changed anything else. So... I will resume taking the 500 mg Taurine tonight and for the next 4 nights and see if I have any improvement.

ESRDRLS profile image
ESRDRLS in reply to

what is gaba since its avail in stores I assume its not gabapentin. I have have a kidney transplant half a year ago. was doing well with my rls even with my antirejectionin drugs. now due to spinal cord injury I take oxycontin and xanax. I have rls since I have aged in my stomach and chest. I am also on gabapentin. I am now suffering from more pain and rls is comeing on some in daytime. I am starting to suffer also from depression. My husband has severe copd and is 76 with 20 percent lung function. I thnk at the end of the year my pain dr due to insurance coverage may pull my pain meds. I am only intereested in the pain meds due to the rls I don't think I can make it with my rls without the low dose of what I am taking. Cant take ssri's for depression cause of rls. I did well on prozac and requip for a long time til I was put on dialysis and had to quit those, I can only walk with the help of a walker at home and I use a scooter when I go out. haveing more pain my lower spine. can anyone help. I find myself stressed severely every min. Please any overs of help. I sleep ok the first couple hours of night but I have a bladder issue that I have to get up to handle several times of the night (goes with kidney). Then I am woke up around 5 in morning with severe nerve pain in hip and leg and both feet. I am also losing more feeling in my feet. Any words of wisdom. I want to be decent shape emotionally when my son marries end of this year and I would love to see a grandbaby but that will be a few years down the way. Any help anyone can offer. I pray alot.

ESRDRLS profile image
ESRDRLS in reply to

I am on meds for a kidney transplant. I have taken xanax and oxycontin for years. I also have a spinal cord defect. I did good with rls for several months (I am on gabapentin also). The meds I take to keep from rejecting my kidney with my regular meds are starting to cause more of my pain and star

ESRDRLS profile image
ESRDRLS in reply to

what is GABA?

in reply to ESRDRLS

GABA is Gamma-Aminobutyric Acid and it is a neurotransmitter in the Central Nervous System, (CNS). It has a calming effect.

Presumably the GABA you can buy is the same substance but I have no idea where it’s taken from or how it’s made. I imagine it’s synthetic rather than “natural”, but that’s a guess.

It’s legally classed as a “food supplement” NOT a medicine.

The theory about taking GABA is that if you take it, it can raise the levels of GABA in the CNS and produce a calming effect e.g. relieving anxiety and relieving RLS symptoms.

Once you swallow some it can be absorbed into the blood. But to get into the brain it has to pass through something called the Blood Brain Barrier (BBB). This is like a filter, it lets some things through but not others.

GABA only gets into the CNS through the BBB in small quantities. So it would seem that GABA taken orally can not raise GABA levels in the CNS.

Gabapentin is a drug. I believe it is manufactured synthetically. Some people shorten it to “gaba” but this is misleading since GABA is something different.

Gabapentin when swallowed gets into the blood and from there easily passes through the BBB into the CNS. When it gets there it does two things. The main thing it does is to boost GABA activity hence producing a calming effect. The other thing it does is inhibit glutamate activity, glutamate being another neurotransmitter. Since glutamate has the opposite effect to GABA this produces even more calming.

Gabapentin is therefore used for epilepsy, shingles, nerve pain and RLS.

I am sad to hear about all your other problems, which are several and not connected, although your spinal problems could exacerbate your RLS. So could your kidney problems.

I hope your new kidney is working OK, when you were on dialysis, this can cause RLS as it lowers potassium levels. I presume you have your kidney function checked regularly and that your potassium level is OK.

Depression is a particularly difficult thing to deal with and some times it’s necessary to take an antidepressant. It’s said that Trazodone or Wellbutrin are safer for someone with RLS, but I suspect they’re not as effective as the SSRIs. If you have to have an antidepressant I believe the RLS foundation recommend citalopram or sertraline.

I appreciate your dilemma with the oxycontin, It’s useful for pain, but it’s also useful for RLS. The thought that you might have to stop it because of a lack of medical insurance cover is awful. You should be able to get the medicines you need. It’s appalling.

Gabapentin, as I wrote is used for nerve pain and for RLS. It’s by no means perfect and you have to adjust the dose to get a good effect, I don’t know what dose you’re currently taking nor how often but it might be worthwhile having this reviewed.

The symptoms occurring during the day is a little worrying, but hopefully it might be possible to adjust the gabapentin to deal with this.

There are two alternatives to gabapentin. One is pregabalin, (Lyrica), this is a “precursor” of gabapentin and once it gets into the brain it is converted to gabapentin. It is more potent than gabapentin, and overall more effective at a lower dose.

The other is gabapentin enacarbil, (Horizant). This supposed to be the best for RLS, but I believe it’s more expensive.

I do hope you find some easing of your symptoms, pain, RLS and depression and get to enjoy your son’s wedding later this year.

Hipazel profile image
Hipazel

I am also taking Gabapentin for Rls, it has helped my symptoms so much, I was having nights where I only got a couple of hrs sleep and working full time. I have suffered for over 25 years after I had my 1st child, in the past I have tried Ropinrole and Tramadol both were inafective. I have been on Gabapentin for nearly 3 years, if there's no logic in taking them to stop the horrible sensations I was getting I really don't care as long as they work and I get a good night's sleep, my doctor told me that they also work well for nerve damage for my herniated disc, so I'm more than happy.

in reply to Hipazel

I'm afraid you have misunderstood .

"GABA" is a neurotransmitter found in the brain.

The GABA that dlr222 is referring to is in the form of a food supplement NOT a drug.

Since very little of the GABA that's in the blood gets into the brain, there dosen't seem to be any real explanation why it would work.

Gabapentin on the other hand is a drug which easily gets into the brain and boosts the action of GABA.

GABA then is a neurotransmitter whereas gabapentin is not.

Taking gabapentin is going to work because it can cross the BBB easily, GABA can't.

dlr222 profile image
dlr222 in reply to

Manerva. thank you! I'll try just taking the gaba and not the 5-htp. Everyone, that is non prescription gaba and not the medical kind. Both Amazon and WalMart say that Gamma-Aminobutyric- Acid supports sleep and relaxation and that’s why I thought that was so. It was not expensive so a good thing. I still wake up at night to go to the bathroom but my legs don't bother me.

in reply to dlr222

That seems very sensible.

I don't belleve that you should rely too much on what companies like Amazon or WalMart say. They are trying to sell things.

Arjiji profile image
Arjiji in reply to

Congratulations Manerva for your explanations. It is a great luck to have someone like you with your scientific quality and at the same time great pedagogical ability to explain things in a simple way. 👏👏

dlr222 profile image
dlr222

I am also taking ginger root and ginkgo bilboa (these for tinnitus) so maybe that has helped along with the gaba. Anyway the restless legs is about gone after years so I will keep on!

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