I hope my regimen for RLS helps others - Restless Legs Syn...

Restless Legs Syndrome

18,628 members12,231 posts

I hope my regimen for RLS helps others

atwitsendd profile image
16 Replies

Hi, this is atwitsend. It's been awhile since I've been here. I have been busy trying different variations of vitamins to see what works. I have finally figured out a regimen that mostly works for me but it is a little extreme and expensive monthly but it works for me. Many of you might be able to incorporate just a few of the vitamins to help you. They are all over-the-counter except for the gabapentin. The following is what i came up with: every morning.....600 mg gabapentin, folic acid 400mcg, iron 65mg, super B complex high potency (methylated B complex vitamins). Afternoon......Magnesium 200-400mg only on Monday, Wednesday, Thursday and Saturday and every afternoon 600 mg gabapentin. Every night another 600 mg gabapentin and vitamin D3 10mg or 400 IU. I also take a liquid herbal formula called Restavin. I put 1.5ml (.75ml on the dropper x2) in hot herbal tea 2-3 times a day/night. This is excellent....you can get it on Amazon. I also wear compression sleeves. This is alot and it took me awhile to get it going but if you tweek it and see whats good for you, it will hopefully help. Good luck and please give me some feedback.

16 Replies
Madlegs1 profile image
Madlegs1

I'm wondering if the Gabapentin alone would be sufficient.

It would be for most people.

Cheers.

Thanks for sharing this. It's good of you to want to try and help others.

However, you could probably save yourself some money.

I take gabapentin 600mg every night. It works!

I also get free prescriptions.

Whilst some of the other stuff might help, since there's so many and since you have such a complicated schedule, it's not possible to say what works and what doesn't.

Iron can help, but it depends on your ferritin level. Certainly if it's under 100ug/L it will help to raise it to that level. Have you been tested?

However, it appears that it's best to take iron at night, not in the morning. It's also recommended that more of it is absorbed if you take it every other day, NOT every day, take it on an empty stomach and drink a glass of orange at the same time.

Vitamins B12/folate and vitamin D can help IF you have a deficiency. If you have no deficiency, then they may be of no value. Have you been tested?

Magnesium seems to help some, not others.

I am very sceptical of herbal formulas, especially when you're taking a potent medication anyway. If you were taking nothing but this and had no RLS then great, it works, but I doubt it.

Compression devices can help if there is a circulatory element to your RLS, , but you have to be careful. Unless they're creating the right pressure, they are probably of no value. If they are proper medical products you need to make sure they are the right size, otherwise they can be harmful, ( or useless). "one size fits all" are probably of no value.

However, most cases of RLS aren't related to circulatory.problems, so pressure sleeves are of no value anyway.

As regards the gabapentin, I'm not sure why you're taking this 3 times a day. It's only really necessary to take it once, or at most twice a day. Since RLS is worse at night, then usually you only need it at night.

Splitting the dose does help increase its effectiveness to a degree, but not so widely spaced out as morning, noon and night. Two thirds 2 - 3 hours before bed and one third 2 - 3 hours before that may be quite sufficient.

The 3 times a day schedule is for treating nerve pain or epilepsy.

Taking 600mg in the morning, and noon means you get the side effects, drowsiness, balance problems and blurred vision all day.

You may also find that you could then reduce the dose. Between 900 and 1200mg a day might be enough.

Overall, I'd say if anything's working for your RLS it's most likely the gabapentin, but you might not need so much. Iron's OK.

The rest is up to you, you could stop taking them, (or wearing them) one at a time and see if it makes a difference. I'd say take them until they run out, don't get any more.

I'm sorry if this isn't the response you expected, but I hope it's of some help.

atwitsendd profile image
atwitsendd in reply to

Well i appreciate your response but i have worked with this for awhile. I know what works for me. I have tried the gaba by itself, lower doses, every which way. I did not put all this out there with one try. I added and subtracted each vitamin until i got the right regimen for me. I put this out there to give people some vitamins to play with and/or get tested for levels. (Yes i have been tested). It's funny but you actually sound like the doctors we have all seen telling us that no that won't work, that won't work, I doubt that really works, etc. I'm not sure who you are or what your credentials are but I know what works for me. People can take it and play with it or ignore it, it's an individual choice.

in reply to atwitsendd

As you say if you're happy this complicated regime which you think is necessary for you and you've worked it out for yourself. That's OK for you.

It's a shame you've misread my intentions and are not willing to consider any of what I write, which is also for other people's benefit, not just yours.

As Madlegs agrees, for most people all that's necessary is the gabapentin.

All of what you take might work, but do you have to take it all?

atwitsendd profile image
atwitsendd in reply to

I have been on just gaba. No it does not work alone for me. FOR MOST PEOPLE maybe it does work but if not I offered other suggestions. It's an elimination game.

Hi,

awesome work, thank you for sharing. A lot of us have worked a lot of regimes like that. My finding for example is nothing works, hahah, but I'm happy for you despite that you are using gaba which alone makes ppl smiling.

cheers

Tywiesz

DicCarlson profile image
DicCarlson

Sounds great, The Restavin has 24% 1 star reviews on Amazon, just saying - still plenty of people with 5 stars. Do consider the major difference between Folic Acid and Folate - Folate being the better supplement. chriskresser.com/folate-vs-...

Bettybamarang profile image
Bettybamarang

Can you tell me please what else you use it with,? For effectiveness thank you

Sampsie profile image
Sampsie

Hi Atwitsendd

It's great this works for you, and thanks for trying to help others. It's good we all try different things as there is no 'one size fits all', and we all react differently to different things so it's always really helpful to hear what everyone else is trying.

I too do not do well on Gabapentin alone. Having studied nutrition I know what a difference vitamins and supplements can make, as can herbs. After all, many medicines are derived from plants, or modelled on their structure. And the gut-brain axis has been biomedically proven to show gut health supports our brain health. That's why pre and probiotics are so powerful. In other countries, if you are given antibiotics you are prescribed probiotics at the same time. My point is, in my opinion alternatives to chemical drugs should not be discounted. Vitamins, supplements and herbs can support our healing. I personally agree there is room for both, alone or together, whichever works for each person. And that may change over time because our bodies aren't static. Which is good as maybe we will all recover and not need to spend time and money trying to get better !! :-) One can hope...

grandpianoman profile image
grandpianoman

For everyone regarding compression devices, I have used elastic bandages--4 to 6" wide--for years--from early years with RLS-- and they have helped me immensely. I don't know if it's the warmth or the light pressure (I don't wrap tightly, just snugly) or both, but I sleep so much better when my legs are wrapped. I've also learned to store at least two in my vehicle, so if my legs get restless from sitting as I travel, I wrap my legs and often the restlessness ends. I take them with me when I fly, too. I must note that at the beginning of my RLS journey, I needed to wrap only my calves, but now, forty years later, I get the best results when I wrap both calves and at least my left thigh (my most active leg). A tip: The best elastic wraps to get are those that close with velcro. Those little clips that come with some brands don't last at all.

atwitsendd profile image
atwitsendd in reply to grandpianoman

I agree. I have used compression devices, mainly sleeves, for years and they have helped me so much. I'm glad you find relief with them also. I mentioned in my comments the other day that they helped me alot, and someone on this site actually said back to me that compression sleeves are of no value. I thought, the nerve to say that to me after i said they worked for me. Everyone is different and what works for some may not work for others. I dont understand people. Well thanks for sharing and i hope you continue to have relief with them.

Accipiter profile image
Accipiter in reply to atwitsendd

atwitsendd , it is a cultural thing as I have mentioned in other posts. It challenges many peoples' world view on RLS for compression to have any impact on symptoms.

Just shrug it off, and I will give you a silent nod of the head as we both know it works despite the heckling from the crowd.

If you are open to the idea, check out low oxalates. The best advice I could give anyone.

atwitsendd profile image
atwitsendd in reply to Accipiter

Thank you.

Bruxelles profile image
Bruxelles in reply to Accipiter

What are low oxalates please?

Accipiter profile image
Accipiter in reply to grandpianoman

Knee wraps with velcro at both ends are my weapon of choice, I have them hanging from the bed frame if needed. Wrapping is the best non drug treatment.

If you are new to using these, have I got some good news for you. There are 3 main uses for them.

One is high on the thigh, 3 fingers down from your crotch, that will compress the sciatic nerve and disrupt signals. Better for milder symptoms; which can be hard to define. Great before sleep. I don't know why it works, and sometimes doesn't.

Compression on the spot is my favorite, especially that spot deep midway at the back of the calf. There is even a paper on this as a study, and widely mentioned in forums. Light pressure will allow you to sleep, tighter will wake you up eventually but necessary for stronger symptoms.

The last is as a tourniquet, a real symptom killer but a bit hard enact the higher you go on the calf and impossible on the leg with wraps and bandages. 99% effective.

The concern with any compression is increase in blood pressure. I tested high on the thigh and it had no impact. Lower down isn't usually enough to stop blood flow, but I will test.

As for a tourniquet, you may drift off but it will hurt like hell before doing any damage.

Edit: I tested and no blood pressure change with tight compression on the main part of the calf.

Bruxelles profile image
Bruxelles in reply to grandpianoman

Hello grand piano man,I am just wondering what you mean by elastic bandages’? Do you mean a normal crepe bandage?

I also find covering my legs helps but I need different thicknesses depending on the day and how my legs are.

You may also like...