2 months of RLS and Alpha Lipoic Acid worked last night

[beachgirl617]

I have been suffering for at least 2 months of restless leg.

RLS has been something I have experienced off and on for the last 5-6 years but only a day or two. In the past, potassium and iron pills seemed to make it "go away" for awhile.

Recently my RLS has been super bad. I think it is because I am at home more and my activity has been less.

I have noticed some improvement by doing more activity including walking/running but it is still a major problem. (I don't drink coffee after noon, stopped drinking diet coke, rarely drink alcohol and my bedroom is comfortable temperature.)

For the last few months, I have been desperate for this to go away as the only way for me to have a decent nights sleep is taking Advil PM (which is not good for long term use) and applying creme, biofreeze, etc. with frequent walking up.

Here is what I have done:

-Potassium supplements--helpful but no relief

-Restless leg night creme-helpful but only temporary (need to reapply halfway through the night and only provides some relief)

-RLS over the counter pills-- some help but not completely effective

-Leg compression socks-helpful but only temporary relief

-leg massage devices-helpful but only temporary relief

-iron supplements (minor RLS improvement but I need to take stool softeners) and it hasn't made it go away

-B12-no difference

-magnesium supplements-no difference

-BioFreeze-lidocanine patches on my legs--temporary relief but it doesn't make it go away

Yesterday morning I TOOK ALPHA LIPOIC ACID supplement --and I did NOT have RLS for the first time in 2 months! I didn't even have to use any other relief methods (biofreeze, patches, etc.)

I don't know if it will continue or work for everyone but it worked for me!

I feel like a new person this morning. I am so relieved! I am so hopeful this will help solve my RLS!!!

[Jules1953]

I am so pleased that you have found relief using Alpha Lipoic Acid Supplement. I am going to give it a try. What alerted you to give this Supplement a go. Cheers Julie

[Hidden in reply to Jules1953]

Hi, sorry to hear your RLS got worse over the last two months.

This suggests some trigger.

Thus could be a medication you've recebntly started or soemthing that you've started eating or any other change in diet.

Anxiety is also a trigger and that's something that many people are currently experiencing an increase in.

Of the things you've tried iron supplmentation is probably the best thing you've done and I suggest you continue. If this is going to have any effect you probably have to keep it up at least 3 months and possibly indefinitely.

I suggest you ask your Dr for a full panel iron blood test i,e, serum iron, transferrin, ferritin and haemoglobin. Iron deficiency is a major factor in RLS even if you're NOT anaemic. Look up iron and RLS in the pinned posts or follow this link,

sciencedirect.com/science/a...

Some things, as you've found do not prevent RLS, they only give temporary relief.

If you're suffering B12 defgiciency then there may be a reason for it, in which case taking it orally may be of no benefit.

Apart from the lipoic acid, most of the other things you've tried may be of little value in helping RLS.

Advil PM will make your RLS worse. Any sleeping aid with a sedating antihistamine in it will make RLS worse. Do NOT take Advil PM.

Good luck with the Lipoic acid I hope your sleep continues to improve.

[Jules1953 in reply to Hidden]

Hello Manerva, thanks for replying to me. Much appreciated. I am currently waiting for my blood test results to come back.

I am using Endone to assist me to reduce my Sifrol intake. Last night I took 5mgs of Endone and 0.125mg of Sifrol.

I am interested in what medication you are currently taking.

As we both have had the same experience with any medication containing pramipexole leading to augmentation.

Kind regards Julie

[Hidden in reply to Jules1953]

Apologies, I mistakenly replied to you imstead of beachgirl.

I hope neahgirl got my response.

The only medication I take now is gabapentin 600mg.

[Jules1953 in reply to Hidden]

Thanks Manerva, you now take 600mg of gabapentin, and that is after slowly coming off pramipexole I'm presuming.

Cheers Julie

[Hidden in reply to Jules1953]

Correct I was taking 0.75mg (0.54mg) pramipexole and weaned off over ten months.

I haven't taken any pramipexole since about late June 2019.

[Jules1953 in reply to Hidden]

What did you use to help you wean off the pramipexole?

Does the Gabapentine work on a different part of the brain.

A year ago I was on 3mg of Sifrol, many more times the recommended dose for RLS.

I had gone to Hospital for knee replacement surgery and while I was in Hospital, the Chemist who was responsible for my pain management after surgery came to see me. He asked why I was on 3mg nightly. He informed me this was way too much.

So over a period of time I reduced my amount I was taking. And realised that most Doctors have no idea about treating patients with RLS.

I now take control of what I put in my body and have a different Doctor who I pass on information to about RLS.

I live in a small country town in the South West of Western Australia and so I dont have Specialist medical services readily available. But the local Chemist here has RLS himself.

He does not take any medication and instead chooses to put up with the condition. I can understand now why he has chosen not to put some of the medications into his body that I have been on over the years.

I have learnt so much from being on this forum. And thanks for all the knowledge you personally share.

Cheers Julie

[Hidden in reply to Jules1953]

I was extremely lucky in weaning off pramipexole. I only ever took gabapentin, nothing else.

Furthermore, I kept waiting for the withdrawal effects and they never seemed to happen.

I wasn't sleeping very well at first, but then I wasn't sleeping anyway.

After I got down to 0.25mg, sleep started getting better.

I was told by an RLS expert that the wuthdrawal effects would really start 24 - 48 hours after the last dose. They didn't.

I would like to have been like your chemist, i.e. just tolerate the symptoms. I did that for nearly 30 years.

Then it got really severe and it was nightly hell. The sensations were awful and I couldn't sleep. I recall about maybe no more than an hour every night. It got intolerable and also at the time my marruage was breaking down and I had just retired.

In my ignorance I saw a doctor who in his ignorance referred me to a neurologist who in his ignorance prescribed me up to 0.75 mg pramipexole with no warnings if any complications.

I can't really recall, but the pramipexole started failing after about 3 - 4 years. I started having involuntary movements too.

I saw two neurologists who were both ignorant.

I recall augmentation really set in after about 5 - 6 years. My doctor kept saying, there are other meds, but he never said what. I think he meant other dopamine agonists.

Nobody ever mentioned augmentation.

Eventually, my doctor prescribed me gabapentin, but he prescribed it for nerve pain. He never said anything about gabapentin treating RLS.

I just accepted that I suffered chronic insomnia for years.

Then I learned from this forum about augmentation, dopamine agonists and gabapentin and starting weaning off pramipexole.

With what I know now I realise that I should never have started on pramipexole and I would never have gone through years of pramipexole dependency and augmentation.

Now I know the reason it all started was because I was prescribed a SSRI antidepressant for several months. It's even recorded in my nedical file, "he thinks his RLS is getting worse".

Now I just think how many people are or will be in the same situation and have to suffer because they don't know about augmentation. So whenever I see anybody say they've started taking a dopamine agonist I have to give them the warnings that theur doctors don't.

I suspect that after years of pramipexole, it may have caused some permanent damage. I keep thinking about seeing if I can reduce or stop the gabapentin, but it's scary. I have totally missed taking it twice, I didn't notice until the next evening when I saw the previous days capsules still in my pill box.

If that had been pramipexole I would have suffered the consequences if the missed dose in a few hours.

[Jules1953 in reply to Hidden]

Thanks so much for sharing all this with me. RLS is such a cruel condition, it takes away quality of life. I feel sad and concerned not only for myself but all the people whose stories I read on this site. I am like you and now I would warn people from ever taking dopamine agonist medication.

Kind regards Julie

[LanaCSR]

How much alpha lipoic acid do you take? When do you take it?

[Allyp69]

As a 73 year old suffering from RLS since my first pregnancy I am very keen to find any relief. I don't get it every night but most nights... Stress etc must play a part. I wear copper bracelets in bed and these help but would like to try ALA... Please suggest dosage, when taken etc.. Really appreciate your advice😊

[Hidden in reply to Allyp69]

Alpha lipoic acid is essentially an anti-oxidant. These generally can be of some help in counteracting chronic inflammation. There are many such which may work for RLS. Celery juice is one for which there is more evidence for it's neuroprotective properties.

I'm not intending to discourage anyone from trying ALA if they wish to try it. Just trying to provide information about appropriateness.

A quick search for information about ALA mainly brings up adverts, which I find off-putting. Nonetheless there is at least one fairly credible website that suggests it has some benefits for people with high cholesterol, obesity, diabetes and nerve pain due to diabetic neuropathy. The last of these is associated with RLS.

It's seems appropriate then that if anybody has RLS due to peripheral neuropathy then ALA is well worth trying.

This is similar to recommending compression stockings for somebody with RLS related to venous insufficiency.

If you don't have either of these underlying conditions then results from the relevant remedies may be disappointing.

Not everybody with RLS has it for the same reasons, there are many factors.

Knowing what particular factors are most significant in your own case is useful.

For people with primary RLS or RLS due to anaemia, an iron deficiency is the most significant factor. Others re magnesium, vitamin B12 and D.

These should therefore be always tried first and any others such as ALA or an amino acid can be tried as well.

[LanaCSR in reply to Hidden]

Do you take celery juice? What is an appropriate amount for RLS relief? I suffer from chronic inflammation.

[Bochoe in reply to Allyp69]

I take 300 mg 3x daily. You could try less. You could also take more. I believe 1,800mg daily in divided doses is ceiling.

ALA works fast and better than the Gabapentin.

[4fishylady]

This sounds very encouraging to me as well. I have been taking Ropinerole 1 mg late afternoon and bedtime, but think I will try to eliminate that by using the alpha lipoic acid. I try to take one each day, 400 mg, and I have not been bothered much by RLS lately, but did not associate it with the ALA. I'll give it a try too! Thanks for all your results to see what didn't work with you.

[Wanman4]

How long ago was it when you began it? What dose and is it still working.

[Wanman4]

Are you still taking ALA for your RLS, and is it still working?