Respite or dawn,or another problem all together ...

[Desperate100]

I've kept quiet about this, in case it was just a blip, but for the past 10 nights the restlessness hasn't happened,or has started very late and has been very mild.

It's not the Gabapentin, which I only started 6 days ago, and have so far not hot above 200mg as a dose.

I can only think it must be the iron skin patches I've been using for the last 6 weeks.

As the restlessness is so mild now, I want to stop the Gabapentin,but will take one tablet today,and then stop.

The problem I have now is insomnia! I rarely get to sleep before 2.30, although that's a vast improvement on 5a m I regularly used to be up to with RLS. I can only think that two months of not being able to sleep because of back pain and then 10weeks not being able to sleep because of RLS has got my body into bad habits!

It's not nearly as distressing as RLS, but (same as RLS) I'm too tired to do anything useful with the time awake - I can't even sit up properly to read.

Has anybody else experienced this?

[Madlegs1]

I haven't experienced this, but what you relate sounds very plausible.

Keep us posted!

[SueJohnson]

Some safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA. If you want a prescription one, I recommend Ambien which is not a benzodiazepine but acts like one. Clonazepam should be avoided because it has a 40 hour half life and is likely to make you sleepy the next day.

[Typicallygaslit in reply to SueJohnson]

All of those can exacerbate RLS! They all stimulate serotonin which can make things so much worse.

[Guitarpickin in reply to Typicallygaslit]

Are you sure ambien can exacerbate RLS? I have had RLS for years and often take ambien if I can’t sleep and have never noticed it impacting RLS in any way. Melatonin should probably be avoided, though sometimes I take it without problems.

[Typicallygaslit in reply to Guitarpickin]

All the typical serotonin stimulating supplements mentioned above can make RLS worse (l-tryptophan, 5-http, glycine, valerian etc). Sorry I got a bit confused because I also wrote something below and didn’t notice that this post mentioned Ambien (Zopiclone) which is fine. I really meant to talk about the OTC supplements only. As for Clonazepam, I don’t personally tolerate it at all.

[Typicallygaslit in reply to Typicallygaslit]

Sorry again if that got confusing, I was just sloppy and didn’t pay attention to the Ambien. Just be very aware that herbal doesn’t mean ‘safe’ when it comes to RLS and that we all have different levels of tolerance for anything that stimulates serotonin.

[elsie1920 in reply to Typicallygaslit]

I know this is an old post, but just FYI, Ambien is zolpidem, not zopiclone. Zopiclone is Imovane.

[SueJohnson in reply to Typicallygaslit]

But for most people they help.

[Typicallygaslit in reply to SueJohnson]

I’m not going to argue but I would be extremely surprised if they did.

[Hidden in reply to SueJohnson]

Sue, I believe 5htp, tryptophan and even DHEA all increase serotonin and taken at night could be disasterous in the short-run. In the long run they might up-regulate our receptors which of course would be great. It’s just too painful in the process. One way to find out. Try taking a good helping of 5htp one night.

Actually DHEA increases testosterone and estrogen not so much serotonin. Great in the long run but not the short.

Here’s 5HTP: ncbi.nlm.nih.gov/pmc/articl...

I wish the Ecopipam doc would stop with that substance, which I truly believe will plunge RLSers into the depths of hell, and instead look into these dopamine antagonists.

[Hidden]

That's great news. But could it not be the gabapentin helping? Pregabalin worked for me from day one.

Or did the lessening of symptoms coincide directly with the wearing of the transdermal patch?

What brand patch is it?

[Desperate100 in reply to Hidden]

Sorry for the delay in replying.

I don't think it's the Gabapentin - I started it a few days after the RLS started to calm down.The topical patch I use is PatchMD Iron Plus

[Hidden in reply to Desperate100]

Hi Desperate, I agree it is the iron. I have used the patches, but prefer the ferrous bisglycinate capsules which I generally open up and add to water along with contents of a quercetin capsule. It stops my RLS in one hour and has done so for over 10 years now. Like you, my RLS kicks in around midnight which is when the free floating iron in our blood is at its nadir per scientific studies. Because our RLS brain is unable to store much iron we rely VERY heavily on that free floating iron. Iron is the grease and glue that keeps our genetically pathetic dopamine transport system chugging along. So as that iron plummets in the evening we get RLS. Ever wonder why we mostly get RLS in the evening? It’s that drop in serum iron.

Also, like you, I have chronic fatigue - since my teenage years. It seems to continue to get worse with little or no days (or weeks) of respite as I used to get. I blame some combination of allergies and a recently diagnosed auto-immune disease which I probably have had most of my life as well. My current treatment consists of eating more animal protein. Except for fish on occasion I was having none. I am actually enjoying it. Anyways, I too fall asleep too late - thru my own evil ways. Keep up the good work and definitely give up the Gabapentin. We with chronic fatigue seem to do better with less of those types of drugs.

[Hidden in reply to Hidden]

I was reading about transdermal patches and came across this article

mddionline.com/components/p...

This particular company is using biphasic iontophoretic transdermal technology for the treatment of iron deficiency anemia.

What's most interesting is that

"The study demonstrated successful iron transport, with a rapid rise in serum iron levels during the first four hours and a decline and return to baseline within 24 hours".

[Hidden in reply to Hidden]

Yes that would make sense. I still need to read article. Serum iron has a daily circadian rhythm unlike ferritin which is much more constant. In humans serum iron plummets at night no matter how much iron you may have taken in during the day. So yes, I would expect an initial rise from the patches, as with capsules, with an eventual return to baseline.

[67Waterman in reply to Hidden]

Amazing post - thank you.

Can I ask what time you take your bisglycinate iron and how much you take? And how much animal meat you now eat and what?

I have chronic fatigue, but I thought that was a lasting effect from COVID over two and a half years ago. It is crippling and annoying.

Pregabalin has helped a lot .... no RLS during the day any more. But at night, RLS still kicks in about 20 minutes after I go to bed, and then I have to resort to a tiny dose of Ropinirole (0.125mg) to stop it and get me to sleep. So maybe the iron might help more that time of night?

Warm regards, Sally

[Hidden in reply to 67Waterman]

Absolutely might help. In a perfect world I would take the iron no later than 11pm (25 to 50mg). But tonight, for example, my son paid us a surprise visit and now it’s 1:30am and I will take the iron now.

I try for 20 grams of animal protein a day. That’s low. I think a chicken breast has 25 to 50. Maybe I’ll work my way up. So you’re a Covid long- hauler. For all I know a virus I got in my teens may have led to my fatigue as well. I think in some cases, and with some viruses, they remain in your body but quietly so in the vast majority of people. In other cases I believe a person’s body continually attempts to rid the body of the virus which then leads to battle fatigue/CFS and even tissue destruction. I don’t think Covid stays in the body, however, it seems like the body remains on high alert even after the infection is gone. It’s just such a foreign invader to us I guess. With Covid it seems, our worst enemy isn’t the virus, it’s our body’s continued over-reaction.

Despite years of research into CFS I have very few solutions. I do better with a very light breakfast and a nap always gives me a second wind. I do as much as I can each day and allow myself a little Grace if I fall short.

Let me know how it goes Sally.

[67Waterman in reply to Hidden]

Thank you so much. I find it so frustrating. Until COVID two and a half years ago, I was full of energy - we used to restore property in France, so it was a physically demanding job 10 hours a day. Since COVID, there are some good days when I feel normal, and some bad days when I just have to drag myself to bed in the afternoon, and I lie there with absolutely no energy, even to turn position. Grr!!

[bookish in reply to 67Waterman]

Covid (like other viruses) can affect one-carbon metabolism/folates cycle, so really messes up your methylation. You might find this interesting mdpi.com/1422-0067/23/8/418...

[Hidden in reply to 67Waterman]

How long have you had the chronic fatigue Sally?The reason I ask is because I take pregabalin and experience something similar to chronic fatigue. I'm wondering if there's a common thread with pregabalin.

[67Waterman in reply to Hidden]

Hiya! Definitely not related. My chronic fatigue started March 2019. I only started Gabapentin around 6 months ago, and went on to Pregabalin about 2 months ago. Sorry ......

[wanttosleep in reply to Hidden]

May I ask why you take the iron with quercetin? I was under the impression that quercetin was an iron-chelating nutrient that would cause a depletion in iron. It obviously works, but it seems contradictory to my over-tired brain...

[Hidden in reply to wanttosleep]

Yes, and it increases hepcidin. You know why I add it to my iron? Because I’m the biggest frickin idiot I know. I think of quercetin as a flavonoid not really a polyphenol like tea. Yet that’s exactly what it is. Tonight I go Quercetin free. I don’t know if u own capsules of bisglycinate but if you do open it up and add to water. It doesn’t dissolve well. I found that by adding quercetin it made the iron dissolve like a champ. Piss poor assumption on my part thinking that makes it even more bioavailable. Quercetin should not affect absorption of heme-iron per articles I just read. But bisglycinate is non-heme. I owe you!!!

[wanttosleep in reply to Hidden]

On the contrary, SanAndreas. I owe you and all who have posted here a huge thank-you. I have learned so much about RLS in the last couple of weeks reading on this site. I bought the iron bisglycinate this afternoon and tonight is the inaugural run! I will mix it with water as you suggest. I wish you sweet dreams tonight!

[Hidden in reply to wanttosleep]

No I’m angry with myself. Don’t try to make me feel better. On the bright side - for me alone-the quercetin I use has a decent amount of vitamin c in it. That’s probably what made the iron dissolve and maybe offset the inhibitory effect of quercetin. Someone else following what I do would probably not have bought one with vitamin c/Ascorbic acid. Sweeter dreams to you. Xx

[Hidden in reply to wanttosleep]

Any luck?

[wanttosleep in reply to Hidden]

Thank you for asking! The restless legs did settle down and I did sleep, but then I am still taking pramipexole (.5 mg/day), so that is pretty much normal. My quality of sleep is another matter as I have other health problems (sleep apnea, fibromyalgia and lupus) that are all disruptive to sleep too. Pain usually wakes me up after about 4 hours and I have to get up. After an hour or so, I can go back to bed for a couple more hours of sleep. But I do sleep and I do dream. Sleep well SanAndreas!

[Hidden in reply to wanttosleep]

I’m up every 2 to 3 hours. But I can usually fall back to sleep fairly quickly. So it sounds like you can’t tell if the iron really helped? It seems like a lot of women on here have auto-immune diseases. I realized about a year ago that I dream in black and white and for the most part, with rare exception, my dreams are dreary. Anyways, don’t give up on the iron just yet. Think about not eating anything after about 7pm and until breakfast. Many people swear this helps their RLS. I didn’t realize you were on Prami. The iron will seem to work even less when, and if, you stop it. Also, think about trying to possibly up-regulate your receptors via a berberine capsule in the morning. It is a dopamine antagonist and not something you ever want to take at night. Muchas suerte.

[bookish in reply to Hidden]

Any idea if quercetin would affect iron from patches? Cheers

[Hidden in reply to bookish]

No, will not affect.

[bookish in reply to Hidden]

Thank you. I'll try the patches then. Best wishes

[Guitarpickin in reply to Hidden]

Gabapentin worked for me from day one too. And I was only taking 100 mg. That low dose worked for me for a very long time. I only recently had to up it to 200.

[SueJohnson]

Yes it is possible the gabapentin is helping even at that low dose and for that short a time. I guess you will find out when you stop it.

[Seaux]

Never tried iron patches but will if I can find them here in the States. Thanks for letting us know. The problem with your sleep schedule may be from years of it being "whacked out" because of the RLS. So try to avoid naps, and force yourself to slowly get back to getting up at the desired time. This may take a while bc your sleep schedule has been so disrupted for so long. Hope this will help!

[DicCarlson]

Oh - it's the iron. I had severe RLS, and I do mean severe. Iron supplements started with a "home remedy" blackstrap molasses (contains a few mg of iron). Two tablespoons - totally cut into my RLS. So I then started on Ferrous Bisglycinate - 17mg, mid morning, between meals. Zap - severe RLS gone in a week - Ferritin levels rose to 105 from 49 in 3 months. But, as you say insomnia remains - and it does for me also - now years since the iron supplements. BTW, I no longer take iron supplements.

Here is some new information I am going to try...

drdavidbrady.com/inositol-a....

[Hidden in reply to DicCarlson]

Thanks for sharing. Please report back?

[Typicallygaslit]

There are many complex reasons for insomnia. Since taking higher doses of iron in the day time, I’ve often felt a bit jittery. I think it’s stimulating the catecholemines which are the excitatory neurotransmitters. That would be the famous dopamine, but unfortunately also nor-adrenaline because it’s connected to dopamine. I believe I have a problem with adrenaline hyperarousal on top of the RLS. I typically get to sleep around 2 am and there’s nothing much I can do about it (having tried to change it over the years, obviously). The wakefulness puts me in a double bind because I need something to calm it all down at night but some of the same substances tend to exacerbate the RLS.

I’m sorry if this is complicated but the bottom line is that *most* drugs and supplements can trigger either RLS or excessive wakefulness in some individuals. I have an underlying condition with deep neurological roots including extreme sensitivity to serotonin and subsequent sensitivity to most drugs, so I’m really struggling to strike a balance. My hope is that over time, the iron will start to make a difference in the broader sense so that hopefully I could ditch anything that make the RLS worse. Hope this makes some kind of sense to you.

[bookish in reply to Typicallygaslit]

Thanks for that, I hadn't considered iron affecting catecholamines. I have a COMT SNP, so likely slower metabolism of neurotransmitters and my RLS (relatively mild, but since childhood and most women in the family have it) has gone since I (a) changed diet to get rid of gluten, which was obviously a problem and dairy, ditto, and started to supplement to assist slow COMT (especially my wonderful magnesium). But iron remains fairly absymal, yet I struggle to supplement. And I use a lot of quercetin as it is a mast cell stabiliser and calms my histamine and is the only thing I can tolerate. So now I'm wondering if using a patch might bypass the quercetin chelation....

[Typicallygaslit in reply to bookish]

I don’t personally tolerate quercetin. I tried it because a lot of people with hEDS find it helpful, but I don’t seem to have that kind of problem with the mast cells and actually do really well on l-histidine (the histamine precursor) and not at all well on anti-histamines. I didn’t know about the COMT gene so was interested to read up on that. Seems to be quite a common methylation problem. I know I have some kind of metabolic issue but I don’t know exactly what it is. It’s clear that I have to be careful since tyrosine and phenylalanine not only turn into dopamine, but also adrenaline. The pure powders you can buy tend to get my heart racing. Iron, on the other hand, is a dopamine transporter, but it transports other neurotransmitters as well. So I don’t know exactly how it’ll affect everything else and will still have to try and figure it out, but I think it’s safe to say that it should make a difference to a lot of things. I’ve mistakenly taken a bit too much lately - I thought Ferrous Fumarate 322 mg equalled 65 mg elemental iron but actually it’s more. So I’ve switched to 210 mg tablets and hope I won’t get that jittery, irritable feeling. I still have to experiment to see whether it’s safe for me to take it late in the day, or not. The plan is to cut the pill in half and take it twice a day, as that also seems to help judging by how I felt yesterday when I cut the 322 mg in half. I’ve been having more energy and strength in the day time but the RLS has still been bad at night.

[bookish in reply to Typicallygaslit]

I'm glad that you are finding things that suit you. We are all different and have to use what information we have confidence in to try things for ourselves. Some work, some don't. Overall I am a lot better than I was in 2017/8 but still a work in progress. Metabolic specialist next, so curious to know what they look at and how I can use the knowledge. I don't think COMT is quite as common as MTHFR, and I also have a SNP on MAO, and MTR (affecting folate/B12). COMT is connected by some to fibro, so I suspect has been affecting me for years. Best wishes

[Butterflysun1]

I know time will tell but I wouldn’t be 100% sure your RLS hasn’t improved on the Gabapentin already. There are all these studies & then there is individual real life.I took Pregabalin for another reason way before it was recognised as a RLS treatment. To my amazement it helped my RLS from day 1 and at a very small dose of 50mg. I reported it to the drug company to alert them to it. They had had a few more anecdotal reports & a study was being planned. There may be others out there with a metabolism similar to mine.

[Arjiji]

Estimated Desperate 100

I write because I feel identified with your personal situation. I have not been able to sleep without pills for more than 30 years, I have taken all kinds of them: benzodiazepines, hypnotics, antidepressants, dopamine agonists, but not ligands2delta (gabapentin). First for anxiety, then for sleep, then for sleep with antidepressants because I couldn't take BDZ anymore, and finally DAs for RLS.

I managed to eliminate leg movements with rTME and acupuncture but I am left with a brain that cannot sleep naturally without drugs. I have tried herbs: valerian, chamomile and others, without any effect. Melatonin used to aggravate and now triggers movement in my legs, as does L-tryptophan.

Taking Trazodone works well for me (he was able to sleep with 50 mg), the Z drugs (Zolpiden, Zalepron, Zopiclone) work very well for me, but they cannot be taken every day, nor more than a month in a row. so I am alternating Trazodone, with Clonazepan 0.5 mg, and with Zopiclone, and some day with nothing.

I am waiting for the new medication Daridorexant to try to stop taking anything and for my brain to go back to sleep on its own. And you are right, the brain structures have become accustomed to an artificial sleep initiator and it is difficult for them to inniciate themselves. A psychological treatment of a cognitive-behavioral type would help to stop taking the pills and I am going to follow it as soon as the heat in Spain stops and there are better environmental conditions for sleep.

Meanwhile I will continue with the pills but at very low doses.

I hope I have been helpful.

[Desperate100 in reply to Arjiji]

Thank you Arjiji - you have been very helpful indeed.

[Hidden in reply to Arjiji]

Hi Arjiji

I understand that daridorexant is a novel orexin receptor antagonist, however in case you aren't already aware, there is already an orexin receptor antagonist on the market, namely suvorexant (a brand name is Belsomra). An acquaintance takes if for insomnia and reports good results.

[Hoochybaby]

I’ve had similar experiences with Pregabalin I take 175 mg about 9pm and two codeine about 10pm which helps with my rls but I had severe insomnia making my life hell but I’ve started a new regime which helps me sleep I wear compression socks which helps my legs and I also wind down from about 9pm ie I switch off all screen tv,computer etc and avoid all types of stimulation no coffee alcohol etc go to bed later and I have a hot showers before getting into bed I hope this is of some help