Hi! My first post here – I may know one or two here from another forum.
I had RLS start about 20 years ago, I'm 65. I started taking ropinirole 1mg about 5 years ago, I now take 4mg, recently often 6mg. Gabapentin did not work for me.
I'm wondering if any here have read about RLS and the brain's default mode network. Some scientific papers on the possible relation started to appear last year, it seems.
How many of you find that RLS symptoms are lower or less likely to occur when you're sitting doing an absorbing task? Can you almost make RLS symptoms appear by having introspective or retrospective thoughts or fantasizing or daydreaming? Have you ever got into daydream type thoughts, started to nod off into an ever more dreamlike state (the sort of opposite of the waking dream situation, I suppose), only to be suddenly woken by RLS symptoms which disappear again when you start thinking about more positive down-to-earth matters?
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ironbrain
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Distraction is a tool many of us use. For me some times it works a treat and other times things are too bad for it to work. I find that just lying down in bed can bring it on as I am trying to be at rest and as soon as I get up and start moving things are OK. It seems like adding insult to injury nights like that!
I'd appreciate a link to those papers if you still have it.
Oh hello and welcome too. You'll learn plenty on here and hopefully have a bit of a laugh too.
Well - something else to Google "The brain's default mode network" Fascinating stuff - especially on You Tube. Here's just one, but see the suggested other videos. youtube.com/watch?v=6A-RqZz...
Thought it might be useful for anyone wanting the medical terms used, those hard of hearing, those whose first language isn't English or for those who might like to translate it into their own language.
Also Professor Earley's discussion on iron/dopamine:
Will someone please tell that man to think along the lines of getting some iron to the brain rather than just getting RLS patients' stores up?
I'm not kidding, I think the RLS-UK Chairperson should contact the good doctor and tell him that not all irons are created equal in terms of RLS. Anemia maybe, but not RLS. And then tell him that the evidence is mounting that by taking some bioavailable iron at night her members are getting relief - immediate and complete. And if he won't listen then find someone who will.
And it's really not that much different than insulin and diabetes. Insulin will not do much good if the patient is pounding sugar. And the insulin won't touch the symptoms if a person's kidney function has plummeted. Then dialysis is in order. At any rate, just as insulin will not ameliorate all symptoms of diabetes or even keep blood sugar levels in check, it is nonetheless THE first line of defense when a doctor determines that a patient has type I diabetes. Then the doctor goes from there with other treatments as needed. Is it time that ferrous bisglycinate becomes the first line of defense in treating RLS?
Well, that is your thing, and a very few others here, I know of, that use that iron. I do not think the chair, and that is a him not a her, here, needs to write to a doctor at Johns Hopkins in the US about what kind of iron to use. Why don't you do it? I know Dr. Earley's email is listed on the web site for Johns Hopkins at the RLS Quality Care Center. Since YOU are the one who seems to think you know more than he does, why don't you wrote to him and suggest it? The Chair here is VERY busy with his thankless job, and our ONE admin is rather busy keeping up with posts from 5,000 people. So, I am sure you have time to fire off an email to the good doctor.
Well, if you have emailed him, then I guess you have done what you can do. I fail to see how it is immature of me to say email him, when you already have, so that is a good thing, then, isn't it? Cheers! Oh, have you spoken to the US RLS Foundation about this? Since you are in the US?
Here's the "few" that have been helped by iron in the form of bisglycinate or restavin or ferrochel and who have gotten immediate, near immediate, or eventually fantastic results:
I think it really depends on how severe the RLS is when you start to try and go into relaxation mode. Sometimes, it can work, I do meditate. But, if it is raging RLS and you have to pace, pace, pace, then maybe not so much. I know it takes practice, for sure. The best thing we can learn out of anything here, is to do your own research and find what works for you.
I've been using ferrous bisglycinate, Ferrochel, for over a year now. I dosed up to 180mg a day with it about a year ago and it did seem to help quite a bit, but dropped back down to 54mg at bedtime. It could not resolve my RLS by itself. I'm currently again trying at a high dose. (By the way, the Channel Island company that sells it to the UK – not sure if we can give company details here – is currently out of stock. It's usually a matter of checking the GBP/USD exchange rate and any offers that are on whether to buy it from the UK company or directly from the US.)
Certainly, for me at the current time, trying to control my RLS solely by modifying my thought processes is going to fall way short of success, fantasizing that's more likely to bring it on more severely. The pointer to low brain iron in RLS is I believe, though, very strong – it looks a little like Alzheimer's is too much iron and RLS too little, although iron accumulation in the older brain seems to be somewhat universal. What I'm wondering now, the obvious logical question to ask perhaps, is how much iron these default mode processes use. If the brain uses more iron when these default mode processes occur then ...
Hi ironbrain, interesting post. I like your thinking around modifying your thought processes. I had been looking into modifying my genes through thought and environment:
There are four main genes associated with RLS, (too tired to hunt down which ones at the mo), but couldn't get any info on altering them online. Still I think there is merit in using our thoughts - its getting the right ones; thinking "RLS go away" is more likely to cause it as opposed to "I love my comfortable legs/body" as one is focused on the RLS and the other focused on being 'normal'.
I've just come across the default mode and am still getting round to looking for that study you linked, (I will find it for free), but its interesting to think that it could be a more iron intensive state.
Those figures for iron intake look quite high, was your iron levels particularly low at that time or were you deliberately taking such a high dose to replenish stores? How long did you try that large dose for?
I also wonder how much epigenetics might be involved in the development of RLS. The iron regulatory protein that is at least one control on dopamine production (IRP-1) seems to work with mRNA. But if you read
you find: "Given the impact of iron in RLS, we have evaluated genetic data to determine if genes are directly involved in iron regulatory pathways. The result was negative."
I didn't have my iron level checked before I started taking the high dose, but after a few weeks on it, my serum ferritin level was 180 μg/L. I think I stayed on the high dose for a couple of months. The thing about Ferrochel is that taken in this form the body should be able to control the amount of iron it wants, so maybe it's just a matter of checking one's stools until an excess isn't obvious.
One theory about iron (Professor Earley again?) is that sufferers go through a time of insufficient iron intake. The cells in the brain adjust to the low iron and won't change back to higher levels when there's a greater iron supply.
What's it all mean? How do these fact dovetail into the seemingly miraculous response people (some people) get to a small amount of bisglycinate taken before bed?
and in it (page 24) they report mice on an extra iron rich diet experiencing very little change in non-haem iron in the brain. Haemochromatosis sufferers also maybe don't have an iron overload in the brain.
How does that fit in with the result that high IV iron administration helps a lot of RLS sufferers?
I read the article.. kind of. Parts went right over my head. I found the top left of page 21 particularly interesting because the rats that were given high doses of iron at 10 to 17 days of age (didn't say for how long) by two months of age had increased brain iron levels but also reduced levels of dopamine and serotonin. Baby rats fed given high doses of iron also display less movement than normally seen. All of this bodes well for people with RLS because we want less movement, we want less dopamine (I think) and not sure about less serotonin. And you're right, adult rats that were given iron supplements did not show increases in brain iron levels but did show small changes/increases in other iron related proteins such as ferritin. But going back to the babies I think the reason that dopamine went down and they became comatose is because their dopamine receptors became herculean and sucked up that dopamine like no tomorrow and the baby rats just laid around enjoying the dopamine high. Sound good?
So this is my theory as to what happens with infusions and why they may work for RLS. On a day to day basis the brains of RLSers and maybe even non-RLSers get just enough iron to keep operations (dopamine transport) humming along and maybe some repairs. But not enough iron to undertake the type of protein synthesis involved in making new or bigger dopamine receptors. Along comes an infusion of 1000mg of iron right into bloodstream and suddenly there's enough iron to do some building ;). I read that infused, unbound iron, will be utilized, bound up, stored, etc over a period of 7 to 9 days. So that means for 7 to 9 days our brains are getting enough extra unbound iron from the blood to begin the building process. Now mind you, I don't know if our brains are also "storing" some of that iron, I would tend to think not, but as my theory goes the brain does have at some of that infused iron. As time goes on, like plants after a rainstorm, our receptors grow bigger and stronger and maybe we even sprout some new ones. And then, if people throw away the DAs, and any other drug that may be a drag on receptors, I can see why there would be an alleviation of symptoms. And then as the months roll on and there's no more rain, so to speak, those receptors wither on the vine once again. And I think this happens to some fortunate people who supplement with large doses of oral iron, their receptors perk up. Then these people can actually stop for a time, like DicCarlson, or maybe take some extra iron once or twice a week, and keep the RLS at bay. I truly believe that the fact that our bodily iron stores also increase with infusions or supplemental iron has no direct affect on symptoms and that there is no correlation between the size of one's bodily iron stores and the symptoms of RLS. It's just that in the process of getting those bodily stores up our brains get some of that unbound infused iron. Once the iron is bound up within our body I don't think our brains will see much of it.
Long story short, I think Johns Hopkins is underestimating the importance of that day to day (and night to night) unbound iron that our brains get just enough of - by day - to keep our pathetic dopamine receptors humming along. By night, when that unbound iron in our blood drops, our receptors bark like an angry dog. By giving the barking dog a little iron treat he quiets down for just that one night.
There was one study (hope I can find it) where researchers infused RLS patients over a 3 or 4 week period and had good results and also tested iron levels in the patients' CSF before and after the infusions. There was no appreciable difference. So maybe that made them discount the idea that any of that iron made it to the brain or discount the idea that it's even necessary for the iron to make it to the brain in order to relieve RLS symptoms. I think that maybe there was no additional iron because it was used instead as building blocks for more and better receptors.
Man, I would love to sit down with Earley and pick his brain. Did that come out right?
in reply to
What the guys at Hopkins really need to do in my estimation is to image RLS patients' brains (and the dopamine receptors) before the infusions, then after the infusions as much as possible, like once a week for the first month then once a month for the next five to 12 months thereafter. My guess is that there will be a bell curve. Then of course they have to compare these results with patients' reported symptoms.
There's a fly in the ointment with my theory. Can you guess what it is Ironbrain?
Ok, I'll tell you. Those infusions should relieve people's symptoms from day one (which they don't) if my theory is correct. All that extra unbound iron in the blood should keep people's receptors humming along, both day and night, right from the get-go just the way that bisglycinate does when taken at night. But I have a theory for that too. The iron that is infused is in the "ferric" form already. I have to google again but my understanding is that iron in food is always in the "ferrous" form. Then our bodies convert it to the ferric form. Once in ferric form it can readily be bound up and transported by transferrin or something like that. Anyways, maybe it's only when iron is in the ferrous form that it can be utilized by our dopamine receptors as a sort of glue that then makes it more likely for dopamine to adhere to the receptor. Maybe in ferric form it loses that ability and can only be stored by the body or used as a building block for new cells.
Once again, it's not nice to fool mother nature. If it's true (and it might not be) that for millions of years the only way iron was introduced into our bodies was in the ferrous form then I can see why the infusion of the ferric form may not aid the day to day functions of the body - respiration, digestion, neurotransmission, etc.
Possibly what stands out most to me in your post tredlight, are the words "fairy tale".
Apart from looking at iron levels, I'm quite interested in the fact that dopamine is connected with reward. I wonder that RLS problems may start when there's a lot of fantasizing but no concrete realization achieved. I've just found this:
"... social status and increased social support correlated with the density of dopamine D2/D3 receptors in the striatum, a region of the brain that plays a central role in reward and motivation, where dopamine plays a critical role in both of these behavioral processes."
Maybe people see receiving iron infusions and other hopeful treatments as some kind of reward and thereby feel an improvement in their condition.
If someone with RLS suddenly became a multimillionaire, maybe they wouldn't be too worried about reporting that their RLS had disappeared, if they'd as much as stopped to think about the fact that it had.
which states "The expression of FTMT appears regulated by a complex mechanism involving epigenetic events and interplay between transcription factors."
FtMt (mitochondrial ferritin) is thought to be involved in regulating iron levels in the brain. FtMt in Restless Legs Syndrome:
Hi Iron - good name. Two things I have found and read with regard to iron. For me, timing is everything. Plus supposedly our serum iron drops at night. Anyways, I only take the iron at night on an empty stomach and only when I have RLS which is getting more frequent despite my robust bodily iron stores. So I use the iron like someone would a pain med. Unlike the rest of the world I want to keep my bodily stores as low as possible because I believe there is no direct connection between our bodily iron stores and RLS. Unless you have anemia induced RLS. Then there's a direct connection. And the reason I want to keep my iron stores low is because of a little hormone known as hepcidin which is our bodies iron gatekeeper. As iron floods in hepcidin will close the flood gates and not allow any iron in from the GI tract. I never want that day to come because that is the day I won't be able to give my brain a little unbound iron at night.
Speaking of hepcidin, researchers in anemia are finding that if you want to maximize iron absorption then you want to do an every other day dose rather than the usual two to three times a day dose. And this is because they found that hepcidin is released with that very first iron pill of the day and hangs around in your body in excess of 24 hours. So with each subsequent iron pill of the day much less is absorbed. Kind like the law of diminishing returns.
Pretty neat stuff huh? The human body is amazing as well as Mother Nature. You can't beat her you can only destroy the delicate balance in which our bodies exist. Why infuse 1000mg of iron into an RLS patients body when it seems like all we really need is a few extra molecules in our brains at night
It's in the cupboard along with mirtazapine collecting dust mostly. They were prescribed on an as needed basis many years ago now for other things not RLS. The iron knocks me out.
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Hi everyone,I'm a new poster
I have ulcerative colitis, I'm vegan and I also think I have RLS but I can't easily see a doctor
Good covid, bad downside.
Just thought I would say Hi
Sensory-motor network of restless Transcranial Magnetic Stimulation
