Intensive meditation practice triggers RLS

[BAK524]

About 9 years ago, I took up meditation. It has helped me tremendously face life's challenges, and brought incredible moments of happiness and spiritual insight. I have not missed a day in the past 9 years, and have participated in several (14) intensive retreats, from 6 to 17 days in length. During a retreat, a practitioner may meditate for 7-8 hours, or more. My concentration is pretty good, and I would no longer consider myself a beginner. The problem is my RLS goes CRAZY while I am doing one of these retreats. I've read that meditation can increase dopamine levels 65%, and I'm wondering if this has something to do with it. Would I benefit -or all RLS sufferers benefit- from taking supplements that reduce dopamine levels? I love my meditation, but I'm beginning to think that not only intensive retreat meditation, but daily meditation, may be aggravating my RLS. Thoughts?

[Hidden]

I'm not at all sure how meditation would make RLS worse.

It does have some physiological effects, but I'm not aware of what they all are.

If as you say it raises dopamine levels by 65% then that suggests the opposite might happen, i.e. the meditation should theoretically make RLS better.

I strongly suggest that you do NOT do anything to reduce dopamine levels.

Sedating antihistamines reduce dopamine levels and always trigger RLS symptoms within hours.

ANYTHING that reduces dopamine will make RLS worse. This is because part of the problem with RLS is a dopamine dysfunction.

Hence a commonly used drug for treating RLS is a Dopamine Agonist which, in simple terms, boosts dopamine function, not reduces.

From what you write I'm assuming that you don't take any treatment for RLS. Is that correct?

I strongly suspect that the worsening symptoms that occur when in retreat are due to other factors.

One significant factor may be your physical activity level.

I 'm assuming that when meditating you sit still. Sitting still is when RLS usually occurs. The longer you sit, the more likely this is to happen.

In addition, if you're not doing some physical activity then this will worsen RLS.

If this hasn't happened before, be aware that RLS gets worse with age.

Another factor may be diet, i.e. is there anything different about your diet when you're in retreat than otherwise.?

Diet may be a factor generally. For example if you're vegan, or vegetarian like me you will be at risk of iron deficiency.

Iron deficiency is THE main cause of RLS. Hence iron therapy is a treatment for RLS.

To detect if you suffer iron deficiency you need blood tests for serum iron, transferrin saturation, ferritin and a full blood count.

This will first detect if you have iron deficiency anaemia or not.

If you don't you may still have iron deficiency and this could be Brain Iron Deficiency, the cause of RLS.

The general rule is if ferritin is less than 75, then you may benefit fron ingesting extra iron. Oral iron supplements are going to be more effective than dietary iron.

The aim is to raise ferritin to at least 100. Be aware that this may have no immediate effect. It could take months.

I suggest that iron is a major option for dealing with your symptoms.

Here's some information.

sciencedirect.com/science/a...

There are other things, various supplements may possibly help, thos includes magensium, vitamin B12/folate, vitamin D and an antioxidant such as celery juice.

If you have gut health issues this can worsen RLS as can any food sensitivities e.g. gluten.

I'm afraid when RLS starts to impinge on your life it may become necessary to make adjustments. For example, not sitting meditation for so long.

I don't know what your meditation practice actually consists of, but you may want to incorporate mindfullness techniques into your life, that don't necessarily require sitting still.

The problem with severe untreated RLS is that it usually becomes impossible, at times, to do any sitting meditation.

[BAK524 in reply to Hidden]

Hi Manerva, thanks for you response. I have often wondered if the sitting for several hours in an erect posture is compressing my spine in an unnatural way. I do have a back condition ("anterolisthesis"). It makes me wonder about mechanical effects that contribute to RLS symptoms. There seem to be accounts where someone has RLS, and then they find a tumor on the spine, remove it, and the RLS clears up. (Maybe I would benefit from chiropractor care or a back inverter). I recently tried 900 mg of gabapentin, going up from 300mg (and occasionally 600mg). I had 5 nights of no symptoms, and then it returned for two consecutive nights. I tried 1,200mg. It didn't suit me well. Gave me insomnia, depression, anxiety and suicidal ideation. I emailed my doctor and she told me to stop taking it, reducing 300mg per week. She wants to put me on pramipexole, which scares me. The problem is I'm still working, and I need relief ASAP. I don't do well when I'm lacking sleep. I just got my blood work back yesterday. Full blood work up. Transferrin saturation is 32% and ferritin is 49 ug/mL. I emailed my doctor the link to the Mayo Clinic algorithm, and specifically quoted the threshold levels for ferritin and transferrin saturation. I asked her, "Wouldn't I benefit from iron therapy"? I believe she will refer me to a neurologist. BTW, what is considered the ideal form of oral iron supplement, and what dose? I assume if I go this route I will need to have my levels checked every 3 months?

[Hidden in reply to BAK524]

Hi, thanks for tge further information.

It may be a good idea to get your back checked out. The issue may be simpler. Many people with RLS find it almost impossible to do sitting mediation. When mine was at its worst, I couldn't manage to sit more than about 10 SECONDS.

Gabapentin needs to be taken for at least a month, or more, to really know if it's going to work. If you haven't been taking it that long, I'd carry on for a while.

It may also have been icvreased prematurely.

In addition, pregabalin may be a better option. If you live in the US there is gabapentin enacarbil, but pregabalin is expensive and enacarbil more so.

Your TSAT (32%) is OK. Did you get results for serum iron and haemoglobin? These might indicate a general iron deficiency which would have to be corrected before you can expect iron therapy to benefit your RLS.

Be aware that iron therapy can take 3 months or more to show any benefit, oral or IV iron.

A general rule is that if ferritin is below 75 then start taking an oral iron supplement. You can do this anyway.

If ferritin is between 75 and 100, then an IV infusion may be more effective.

If want to have regular ferritin checks, 3 monthly seems reasonable.

Over the counter oral iron supplements have some advanatages over prescription iron. It'd a common misapprehension that the more iron you take, the more effective it will be.

It actually seems, the more you take and the more frequently you take it, the LESS you absorb. Plus of course, the more gut problems you'll get.

A popular iron for RLS is ferrous bisglycinate, "gentle" iron.

For best results -

1) take it 30 mins before or 2 houts after eating

2) take orange juice or vitamin C at the same time

3) do NOT take magnesium or any antacid at the same time

4) only take a dose once in any day and only take it every TWO days, not daily.

Do consider that there may be factots making your RLD worse.

The main aggravating factors are other medications, antidepressants, sedating antihistamines.

NOTE these can continue to cause problems for quite a while even after you stop them.

If the gabapentin or pregabalin really don't work then being realistic you have a dilemma.

Your doctor can prescribe a dopamine agonist (DA) e.g. pramipexole or you can attempt to get a prescription for an opioid, e,g, oxycodone, methadone or buprenorphone.

My personal view is that an opioid is the better option.

It is a matter for you to choose however, as far as you can, taking into account what you know and what your preferences are. I prefer not to take an opioid and I have reasons for this. Luckily gabapentin has been working for me.

You also need to find out what the benefits and risks of each are. There are concerns about opioid use and misuse, the "opioid crisis", but this is largely due to use for pain, and perhaps less for recreational use.

Lower doses are used for RLS. Other members can tell you more about this.

Which brings us to pramipexole.

My suggestion based on what the literature says, what you will find is said about it (or other DAs) by members of this forum and my own personal experience is DO NOT TAKE pramipexole.

It is one 3 DAs prescribed for RLS, the others are ropinirole ahd rotigotine. They all cause side effects, as most potent drugs do and they cause dependency.

This makes them difficult to stop if you need to. Potentially VERY difficult and in some cases impossible.

The advantage of DAs are that they can be fairly immediately effective. If you want a "quick fix" the DAs will give it. A recent survey of RLS sufferers showed that people believe pramipexole to be the best treatment possible for RLS.

It's pretty impressive.

However, DAs are really only useful short term. Since RLS is chronic then they're not a good option.

Furthermore, there are two MAJOR COMPLICATIONS which occur with DAs that are less likely to occur with other drugs.

These are Impulse Control Disorder (ICD) and dopaminergic augmentation.

ICD isn't that common, occurs quite quickly, but can have a significant impact on your life.

Augmentation is VERY common and most people find it occurs after only a few years.

Augmentation is a significant worsening of RLS caused by the DA.

For this reason DAs are no longer recommended for the first treatment of RLS.

See this link

pubmed.ncbi.nlm.nih.gov/274...

If in desperation you do opt to take a DA, bear in mind the following

1) Of the 3 DAs, pramipexole is the worst possible for augmentation, rotigotine the least.

2) Keep the dose as low as possible, do not take more than necessary.

3) If it should start to fail do NOT increase the dose. Instead, reduce it however crazy that sounds.

4) Familiarise yourself with the signs of augmentation and at the slightest sign be prepared to stop taking it.

The best option really is if you can manage RLS without medication. Manageable factors exacerbating RLS are anxiety and sleep deprivation and these, (to a limited degree) can be relieved without medication.

There are a couple of non-medical biochemically active subdtances that people claim can help.

One is kratom, taken from the bark of a tree. It has similar properties to the opioids. This is classed as a "food supplement" which has its own inherent problems and I don't recommend it myself.

It's illegal in some countries. I see the FDA in the US are trying to ban it.

The other is cannabis. The best form for RLS is medicinal cannabis which unfortunately has restricted access. Depending on where you live. The only other cannabis product of any value for RLS is CBD oil with a relatively high THC content, illegal in most countries and some states of the US.

My opinion, most things labelled "CBD oil" for RLS are rubbish.

[DicCarlson in reply to BAK524]

My Ferritin was 49 with raging RLS - %Sat was 20%. Oral Iron cut into the RLS immediatly.

[Gmc54]

I think the way we sit, and also lie has quite a lot to do with our rls. I sat with my husband a few years back on a hard chair for hours while he was in intensive care, also at the same time I slept in our caravan, which has quite hard beds. My rls was a lot less during that time. I thought it was just down to stress, and that my brain was functioning very differently due to worry that I would lose him, but now I'm not so sure.

For the past two nights I have been sitting upright in the evenings, and sleeping in a completely different position, and my rls, although still there, has subsided somewhat. It's early days, and in the past I've thought I had found a solution, and then a couple of nights later my rls is back with a vengeance. So I won't hold my breath. Time will tell.

[wantokporo in reply to Gmc54]

Try walking meditation.

[Lisapt]

I’m a real amateur when it come to dealing with RLS, but one thing that often works for me on a bad night is laying on the floor with my legs and feet up on a hassock. I sometimes meditate while I’m in that position to try to calm down. So, like others have said, there might be something to the position you are sitting in. Hope you get some relief.

[serengazer]

Hi Fatniss. I have the same response to yoga and meditation. I have to take extra magnesium and meds if I want to get through a session. Years ago I was sent to a pain management class. Eventually the instructor got around to resting on a mat and meditating. Within minutes the RLS had started and would not calm down. It was the first time I really made the connection. My neurologist says that this is a common issue that he hears about. He had a good explanation that I can t fully remember. Anyways others get RLS every time they sit down at a movie theatre or a long flight. The complete stillness seems to allow the brain to detect whatever chemical and neurological reaction is going on in the body due to RLS.

The only help for me was magnesium and drugs 20 min. before my practice!