I see that we are still advising people (seniors no less) to taper off prami - the worst of the worst. To me that’s equal to jumping in front of a freight train. The suffering is too great. I have unilaterally decided that the only way to do this is to first switch to Neupro, get the person comfortable and sleeping, even if it means adding GABA and an opiate. Here’s an excerpt on DAs from an article on Parkinson’s. Add it to my other posts on why I think Neupro is superior and should act as a stepping stone: . “As for withdrawal, only rotigotine had a significant lower withdrawal rate than placebo. Besides, selegiline was more tolerable than bromocriptine (OR = 0.62, CI: 0.39 to 0.98) and pramipexole had a higher withdraw rate than levodopa.” I think Prami and Requip should be banned and everyone switched over to Neupro until they can be comfortably withdrawn from even that.
Once the person is relatively comfortable on some or all of the above the journey should begin to try to build up those D2 receptors and DOWNREGULATE the D1 receptors. And I mean REALLY try. We know so much and have so much anecdotal evidence right here. Just yesterday a member indicated that her RLS was under control with nightly fasting - meaning 12 to 16 hours every night. Anaerobic exercise possibly? Following the circadian rhythm in terms of sleep.? The Uridine Stack? Vitamin E, potassium, niacin - all are supplements that people have used to control their RLS..
Statins and blood pressure medication in the morning only please.
Then when the person is feeling really good they can talk to a medical EXPERT about tapering the Neupro.
Lastly, why are people on this site still not recommending to people who are suffering to try taking ferrous bisglycinate capsules (2 to 3 of them) an hour before bed on an empty stomach??? What, do you think the dozen of us for which this works are under some type of mass delusion? Granted, it does not seem to work as well for people on DAs, yet in some cases it has. Everyone who doesn’t have an issue with iron overload should give it a try.
I like your logic on Neupro. However, I have to disagree on ferrous bisglycinate. There are many of us for whom it doesn't help in the slightest. I was on Oxycontin and pregabalin from 2016-2021 & my RLS was 36/40. I took ferrous bisglycinate at night and it made zero difference. I had an iv iron infusion of Injectafer and it made zero difference.My own theory is that there are at least 3 or 4 main causes of RLS. If you fall into the low brain iron camp, ferrous bisglycinate or iron infusions will help.
However, if you're in the other camps, it won't make any difference.
I know my RLS is caused by scarring in the brain and spinal column, possibly damaging my dopamine receptors and definitely interrupting the flow of dopamine. Others may have kidney damage or peripheral neuropathy.
The ferrous bisglycinate will probably help around 50% of people with RLS.
It's a tricky little devil and one size does not fit all.
Agree fully. I had ferritin of 1400+ and still raging rls.I know my particular brand of rls is caused by triggers. And also at present a result of withdrawal from any opioids I'm on for pain control.
Low brain iron is a hallmark of RLS I believe so there really isn’t “a camp” of us with low brain iron. Let’s talk about RLS in the drug naive, otherwise healthy individual. You’ve let the DAs and co-morbid illnesses pull you into the weeds and away from the fundamentals. Plus, the majority of RLS sufferers are not anemic.So why is it that iron stores of 30, 50, 75, 100, 200, 250, 350, 500, 700, 1400 are just fine for 3/4 of the day? Isn’t it crazy to take someone at 75 or 100 and force them up to 300 ferritin for an illness that only presents itself for several hours at night?
People, people, use your common sense, what is going on in our bodies at night such that the symptoms of RLS appear only then, for the most part? Remember, we’re talking about drug free, healthy individuals.
What happens is our serum iron drops - precipitously so at night. As Madlegs pointed out, even ferritin of 1400 doesn’t seem to help us. If that ferritin was freely available to all the organs in the body all day long there would be no reason for Mother Nature to sequester away that unbound iron in our blood come nightfall. I can practically guarantee you that your brain isn’t getting any of that bodily stored iron, I don’t care how high it is. Iron is a heavy metal and poses almost as big a risk to us as it does a benefit. It is tightly regulated by our body - to the point of being stingy I would say. I’m not sure of all the reasons, but Mother Nature considers that iron yet more of a threat by night. Our genetically pathetic dopamine transport system just can’t handle that drop.
By closing your eyes to the fact that RLS is a night-time condition and separating sufferers into other arbitrary camps based on personal experience does a dis-service to all people who read your posts.
I am willing to go so far as to say that taking a highly bioavailable form of iron at night will quiet the vast, vast majority of drug naive, essentially healthy RLS sufferers. I am also willing to go so far as to say that forcing these non-anemic individuals’ ferritin levels into the hundreds is not wise and will never help their RLS, with the outside possibility of those who are truly anemic.
I’m not sure why the RLS gene didn’t die-out. I can’t imagine sleep-deprived cavemen wanting to re-produce or breast feed or be very good parents. I have a feeling their lifestyle kept their dopamine receptors in a lot better shape than ours today. Maybe it truly was that long night time fast or all that sprinting around to catch animals or run from them, that kept their RLS at bay
If you listen to the 2 radio interviews I did for Health Radio, I made it clear that the very first thing people should do is get their bloods tested and take ferrous bisglycinate at night to raise levels. I wish I'd never started DAs.Unfortunately, your argument won't help the vast majority who visit this site because most are not drug naive. Most have been on Dopamine Agonists and have or are suffering augmentation.
I have several friends who had severe RLS caused by kidney disease. One received a transplant and has been RLS free ever since. In her case, low brain iron was not a factor.
However, I do accept that for the majority it is. The question is why doesn't ferrous bisglycinate taken at night help everyone?
I couldn’t disagree more. I think your friend absolutely did have RLS caused by low brain iron and a lousy dopamine transport system - just not as lousy as some. The vast majority of people who develop kidney disease, even kidney failure never have so much as a blip of RLS. Same is true for anemia. I had a friend who was in kidney failure and he didn’t even know what RLS stands for. I’ve had friends so anemic they were practically at deaths door yet no RLS. One girl thinks RLS is a made up disease.
So your friend is absolutely on that RLS cliff with the rest of us. She was just further away and it took kidney disease to throw her off.
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The same is true for MS. The vast majority will never know what RLS stands for. Those with lousy dopamine receptors and low brain iron to begin with will likely be thrown off the cliff once those MS related brain and/or spinal lesions develop. Those lesions hamper even further our already weak neurotransmission of dopamine.
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If ever there was a “spectrum” disorder it is RLS. And I can almost argue that everyone is on that cliff because I read that 100% of patients with severed spinal cords had the symptoms of RLS. Anyways, once again, we do a dis-service if we divide RLS into different camps. Patients need to understand the beast if they are to take steps to tame it.
And yes, of course, if someone has down-regulated their receptors into oblivion via the DAs then there may be no amount of night time oral iron they can take that will allow them to sleep for the night. And it seems the night time iron has a tough time competing with anti-depressants and melatonin. I’m just one person so my example is meaningless, but all I know is that when I raised the amount of melatonin I was taking, one capsule of ferrous bisglycinate didn’t cut it. I needed two.
People on dialysis or DAs or anti-depressants might need ten capsules - I don’t know. Like I said, everyone with symptoms of RLS, drug naive or not, who come on this site should be told about all of these facts - meaning what RLS is, what makes it worse, and the fact that it is oddly coincidental that RLS occurs mainly at night when serum iron drops and that coincidentally some people get relief, for the night, by sneaking their brains some iron when their brains need it most.
Hi, I was going back through some older posts and I noticed your comment.
I hope you find my reply helpful.
The general feature of RLS is that it either ONLY occurs at night OR it is worse at night.
This is one of the 5 diagnostic criteria for RLS.
There are other features of RLS that aren't included in the criteria, e.g. insomnia, because these features can occur due to other conditions, OR, in the case of insomnia, can occur on their own.
There are also qualifiers to the criteria is well.
One is that symptoms may occur in the day, but they usually started (or were worse) in the evening and then got earlier.
This is the same for the location of the symptoms, which is usually in the legs.
Again symptoms can appear in other parts of the body but usually start in the legs, then later spread to other parts.
There is a very good reason why RLS only occurs in the evening or is worse then. This is because low levels of dopamine make RLS worse.
Thus medicines which lower dopamine levels or block it e.g. sedating antihistamines and dopamine antagonists can make RLS worse.
Normally the levels of various hormones and neurotransmitters vary in a rhythm of about 24 hours. Dopamine is one of them. Others include noradrenaline, cortisol, melatonin, serotonin and others.
The "reason" they vary is to allow us to be alert and have energy in the day and allow us to relax and sleep at night.
These are called "circadian" rhythms.
Dopamine levels are normally low at night and so this is when RLS generally occurs.
I'm sorry if this is a bit long winded, but I hope you get the point.
RLS is classified as a "sleep related movement" disorder by the World Health Organisation.
There are two consequences of this
1) If somebody thinks they have RLS and the symptoms have ALWAYS occurred during the day and have NEVER been worse at night then they may not have RLS at all.
Thats why the only/or worse at night is a diagnostic criteria.
2) If somebody did originally have symptons only/or worse at night then they started to get earlier AND/OR symptoms were originally only in the legs but then spread to other parts then this might signify one of two things
A) that the RLS is getting significantly worse or
B) a major complication has occurred
The major complication in this case is augmentation and it is caused by taking dopaminergic drugs to treat RLS.
This includes levodopa, but more commonly a dopamine agonist pramipexole, ropinirole or rotigotine.
Hence my reason for writing this. If as you say, you have symptoms during the day
And
You're taking one of the above
Then it's quite probable that you're suffering augmentation. You don't have to accept this situation, augmentation can be treated.
Thank you for the explaination. I have been on prampixerole for years. I did originally only have it at night and only in my legs. The prampixerole is the reason it got worse. I am in the process of coming off it. Gabapentin seems to be helping. Again thank you for your reply.
I had a anterior cervical fusion in 1990. That is when Fibromyalgia and RLS started for me. I did some research and learned that during surgery substance "P" (whatever that is) can enter the spine and cause Fibromyalgia and RLS. My RLS has always been in my feet, not my legs. It starts when I lay down at night and within half an hour have to get up and walk. Cannot sit or lie down, have to keep walking. I have a stationary bike that I get on in between my walking. This can last for 3 days, no sleep and no sitting down. I think on the 3rd day without sleep and total exhaustion from walking, I pass out for two or three hours. I also notice that when I am stressed or have much on my mind, it triggers the RLS.
You may be right about first substituting neupro for the other DAs first and then weaning off ALL DAs. That is still the aim.
I did read a study from a few years ago that suggested that neupro has advantages over other DAs because it is slow release and doesn't therefore cause dopamine "flooding" like pramipexole or ropinriole.
It's possibly more important to make sure that nobody gets prescribed a DA in the first place rather than switching everybody to neupro after the event.
It's still signficant to recall that RLS, (in part) is due to a dopamine dysfunction, not a lack of dopamine.
Hence uridine is not really a good idea for RLS as it simply raises dopamine levels. Good for lots of other things maybe, but not RLS.
As regards other food supplements as noted in the latest evidence based recommedations for RLS, there is no evidence that any food supplement apart from iron can be of any benefit to RLS specifically. That includes magnesium.
There is some evidence that vitamin B12 deficiency, which can lead to neuropathy, if corrected, can benefit RLS. There is also some evidence that vitamin D can help in cases where there is deficiency. Note these two depend on there being a deficiency, taking EXTRA vitamins will make no difference. The same is probably true of niacin.
The same may be true of viatmin C, vitamin E and potassium in people with uraemia.
Potassium is known to exacerbate RLS in people who who are uraemic or having renal dialysis.i.e. end stage renal failure. There is no conclusive evidence that potassium is of any benefit to somebody with healthy kidneys.
Potassium overload is a potentially fatal condition.
Anecdotally, people may have CLAIMED to control their RLS using food supplements but this is not evidence in itself. There are also many members on this site that will tell you they have a cupboard full of unused supplements, because none of them worked.
Lastly,I always recommend that people take ferrous bisglycinate on an empty stomach later in the evening. Along with something to increase stomach acid which aids absorption. Others do too, regularly. I don't understand then why you're asking why we don't.
However I do not claim that this has an IMMEDIATE effect on RLS. Again the only evidence that shows an association between iron supplementation and RLS shows it can take months for this to have any effect.
It's easy to accept the idea that any theory is only even remotely true if there is statistical evidence for it. This is why new drugs have to go through clinical trials. Once the theory that new drug IS effective and to what degree then ir can be PREDICTED what effect that drug will have on people.
If there is no statistical evidence that a new drug or food supplement has ne effect GENERALLY, then although some people may claim benefit from it, this does NOT PREDICT that it will have any effect on anybody else.
This would actually be contrary to some basic principles of epistemology.
As far as "mass delusions" go. Yes these do occur. You only have to look at the results of some elections and referendums. Although I'd say a dozen or so, isn't really a mass.
In terms of epistemology, by very definition, if somebody is suffering a delusion then they have no insight into the fact that their belief is wrong. Despite the evidence!
I wouldn't want to dispute your experience that taking iron has an immediate effect on your RLS. However there might be some other explanation for this. It also doesn't predict that the same will happen for others.
There is also evidence that people suffering RLS, especially with sleep deprivation suffer from heightened suggestibility. You could possibly tell them almost anything and they'll believe it. This may have an effect in itself, don't underestimate the placebo.
We have genetically down-regulated D2/d3 receptors compared to the average bear and possibly too up-regulated d1receptors. I say don’t limit yourself to the RLS research and look for any and all substances and actions that will increase the too small ones and decrease the two big ones. I’m sure you won’t argue that actions and substances that antagonize our D2 receptors and agonize the d1s will be beneficial in the long run. The reason Neupro is superior is because it is also agonizes our D1 receptors, not just D2. If you don’t agonize it grows into a massive bully that is very likely the cause of that hellish Prami withdrawal. Prami only agonizes D2 family of receptors. Even though Requip doesn’t agonize D1 it also agonizes d4 and d5 though preferential to D2. Still, with Requip it’s not a full on D2 agonist so it should be somewhat easier to withdraw.
I really haven't a clue what you are on about- I am definitely in the higher echelons of the scientifically ignorant group.I know what I know. And draw from my experience.
My rls is caused by triggers. The first that I discovered by trial and error at age of 5 yrs old was biscuits that had rising agent.
For the next seventy years I have been on a mission to discover all the triggers that set me off.
Thankfully,I'm now on opioids for pain relief, and garner the benefits for RLS relief.
When I tried to discuss hepcidin and the role it played in iron regulation ( when I was being investigated for Hemochromatosis) with a top gastroenterologist, I was blown away with a barrage of scientific wafflery.
I feel much the same now with this discussion.
I think a wee bit of down to earth respect is required to further this conversation.
The vast majority of 5 year olds can eat biscuits and never develop symptoms of RLS. Those of us born with small and few D2/d3 receptors and low brain iron simply can’t handle those biscuits and the gut inflammation they cause. Inflammation will trigger hepcidin and the sequestration of iron. That’s bad, very bad for those of us who have no brain iron reserves, can’t get any from our bodily stores, and now hepcidin is taking away that unbound serum iron that we with RLS rely so heavily upon.
We are not talking about the vast majority of 5yr olds- just the average 10% of rls sufferers.Ask any primary school teacher how many kids continuosly fidget or sit with their legs under their bums on the seat, or just plain restless. Written off as ADHD or suffering growing pains, and so on.
That's the whole point of this forum- finding common ground from all our experiences and reaching out to each other with knowledge culled from those experiences. And supporting each other.
I feel that all you are offering is negative waffle without any real positive, practical and easily obtainable solutions.
Thank you for your contributions- they are making us think. But you need to be practical.
Hmmm, iron is practical so is switching to Neupro before tapering, mate.
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So is not eating at night practical. So is exercise practical. I’m Ms Practical. But let’s be civilized about this and not just run our mouths. So when I offer a PRACTICAL solution I’m not just spouting off whatever comes to top of mind. I’m actually sharing the reason why I’m offering up these PRACTICAL solutions. Well, I still love you, even if you can’t eat biscuits.
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I somehow imagine that the receptors of “normal” people are these gorgeous lean mean dopamine hurling machines. Ours I picture to be some kind of pathetic beaten down VW Bug that burns through oil like no tomorrow. So when that oil, I mean serum iron, plummets at night, our engine, I mean dopamine transport system, comes to a grinding halt.
1) if there's no research evidence that any substance has any effect then you can't assume it has any effect. That's the whole point of research, it's intended to distinguish what is true from what is not true.
That's the reason that it's better to stick to that which has been researched and approved. Otherwise you may just be contributing to the profits made by the food supplement industry with no benefit.
How would it be if you went to a Dr for your chest infection and they said a dozen people have told me tonic water is good for that, why don't you try it?
Of course it's not only important to know what research says, it's also important to understand it and apply it.
2) You seem to have agonist and antagonists the wrong way round.
An "agonist" stimulates receptor sites and an "antagonist" blocks them.
Hence dopamine agonists treat RLS and dopamine antagonists can make it worse.
If neupro agonises D1 receptor sites, this can make RLS worse, not better.
3) Ask somebody who's withdrawn from ropinirole if it was easy.
4) Agonising or antagonising is completely different from upregulating or down regulating receptors sites. They only work if the sites are functioning. If they have been downregulated they no longer work. Agonists and antagonists will therefore have no effect on them. This is one of the reasons dopamine agonists fail.
5) I'm not going to go through all the things you write to point out all your inaccuracies. The last I note is that people with kidney disease don't have a "blip" of RLS, whereas It is well established that RLS IS strongly associated with RLS
A delusion is a false belief that the sufferer adheres to despite it being illogical and despite the evidence. People may deny the evidence or any logical argument that goes against the belief.
As a one time mental health nurse I 've met a lot of people with delusions. A 65 year old lady who was convinced she had been pregnant for 18 months, several messiahs and someone who was followed everywhere by UFOs.
Part of this comes down to the misinterpretation of information and an inability to process information.
No you’re wrong. Read up about D1 receptors. There’s a yin Yang that goes on in our brains and probably all of our body and life. D1 receptors give off excitatory signals. We don’t want to up-regulate them. Scientists are beginning to think it’s not so much the down -regulation of our D2 receptors by dopamine agonists but the “antagonistic” up-regulation of the D1 receptors by them. We need to agonize the D1 receptors and thus down regulate them. Agonizing the D1 receptors will be pure HELL for us in the short-run. It will make our legs go crazy. No pain no gain. In the long run it will tame those bully excitatory D1 receptors. And we want to do just the opposite with our calming D2 receptors. We want to antagonize them - just the opposite of what the DAs do. Once again, in the short run this will make our legs go crazy but in the long run should up-regulate them which is what we want.
Yep we want to agonize the bad guy and make him shrivel the way the dopamine AGONISTs make our lovely D2 receptors shrivel. So yes Neupro has it right. It’s an equal time agonizer. It down-regulates the bad guy the same as the good guy - in the long run. If you don’t down-regulate it too it actually gives it a chance to grow even bigger because you’re weakening it’s counter-balance the D2 receptors. So YES YES YES -agonizing the bad guy is the way to go and why Neupro doesn’t lead to withdrawal as frequently.
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And yes we want to Antagonize our D2 receptors, however slight during the day, with a substance with very short half life. For example- Benedryl. It Will make your legs a little nuts during the day, but maybe in the long run will up-regulate our receptors. We don’t want to antagonize the bad guy because that will then up-regulate him. Prami already Antagonizes the D1receptors by not agonizing him and only agonizing his counter-part the D2 receptors. Wow, Elfin, you don’t understand any of this, do you. Read my post about Augmentation.
Hidden's comments come across as a bit of a bull in a china shop. I admit that my scientific master's is missing, especially the D1 and D2 receptors. Please can we talk in non-technobable for the likes of myself to understand the conversation a bit more. This is after all a community of sufferers, some very clever, some not so. I do respect that, but you cannot tar all with the same brush.Personally I found the comments from Hidden a bit bullish.
So, I am with Effindoe.
I have been on Prami for a year now, and under control (no augmentation) have not had a hint of night-time jerks since February. The Prami works for me. I also have had wifey trying out Gaba for her pain tolerance. She said her concentration on conversation went south. She couldn't think straight and wasn't communicating well.
So whilst I respect hiddens points, its a cap to my mind that doesn't fit all. However for most, It may be the case. Hugs to all sufferers this morning ((((()))))
Am I understanding that comment above to mean “Hidden” isn’t even a member of this group? I read all of the commentary and really just found it to be offensive. Speaking to the mass in such a way that we haven’t tried, or questioned, or offered up ALL that we experience and share with one another in success and misery…a no name individual jumps in with seemingly infantile bossiness is dismissive . Pass on that and let’s keep it above board for all of the humans here who want to help each other out of being dismissed and towards sanity please.
-also, I’d be one of those that suffers all day, not everyday, but I definitely have symptoms in my arms and legs mid-day at least once a week and that hasn’t changed with any of the tweaks thus far.
Thanks to all for the good shares, sorry to jump in on this one-I just don’t find it helpful at all.
The poster was a member with a name, but now they have left the forum so all their comments now show as hidden, hidden gets shown when a member has left the forum. Hope that helps.
Well - a lively discussion! I can guess who "Hidden" is but no matter.
I have often wondered how many RLS suffers were like me. I developed RLS in 2016 - most severe with no clue what it even was! The doctors gave me muscle relaxers - yeah, no help at all. It took me months to figure it out and when I told the doctors they said Requip was the ONLY solution. I resisted that (having found this forum) - but I was close to accepting it - I had NO Sleep. I discovered Johns Hopkins University Neurology website and the Iron connection. Iron supplementation essentially "cured" the severe RLS - alas but not the insomnia. So, how many patients were offered DAs when simple iron supplements could be a better alternative?
As an update - I still have the original bottle of ferrous bisglycinate. I don't need it anymore - WHY? Why was I iron deficient then and not now? Recent blood work shows a Ferritin level over 100.
I do get mild RLS on occasion and deal with the insomnia daily.
I am currently a month into taking ferrous bisglycinate every other night with orange juice. Will then get my ferritin checked to see if I have raised it from 70 to 100 and if RLS has reduced. If symptoms are same I will try to persuade my GP to arrange to boost that. What have I to loose, apart from sleepless nights and awful evenings even though I am on 100mg Tramadol and 1200mg Gabapentin? DA’s did the damage 10-15 years ago. If ferritin increase doesn’t do it, where next? Slow release opioid?John
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Temgesic 200mcg UK update for RLS
From pramipexole and buprenorphine to what?
medication rotation
