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Restless Legs Syndrome

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For the experts, or anyone who has done a sleep study: what is the benefit of actually doing one, if you are far down the RLS road?

TeddiJ profile image
91 Replies

Some of you know a bit about my journey....do you think there is any point of doing a sleep study at this juncture? After long term DA use, many doctors, an iron infusion, opioids, etc.? Do they actually have you lie there all night without any meds or help? Would I learn anything? It is hard to imagine that much could come from it, but I would love any input from the forum. Thanks very much!

91 Replies
Madlegs1 profile image
Madlegs1

A sleep study will monitor what occurs throughout the night.

It should find PLMD,. Sleep apnea. , Periods of REM and some other possible disorders.

You already know you suffer from RLS, because you experience it before you can get to sleep.

If you undertake one without your usual medications, then I'm not sure what you would discover, since you would be suffering horrendous withdrawals.

That's my tuppence worth, for what it matters!!😝

Good luck with whatever you decide!!👍

Guitarpickin profile image
Guitarpickin

Your situation is much more severe than mine, so I’m definitely not trying to make any type of comparison here. But did want to say that my neurologist’s assistant was encouraging me to get a sleep study (as have several other doctors over the years). I asked her if having the sleep study and having the symptoms observed would in any way inform/change the course of my treatment. She said “no.” So I said no to the sleep study.

DataRN profile image
DataRN

I have severe RLS and it sounds as though we have had similar experiences. I did complete a sleep study. Quite frankly, I am surprised you were prescribed opioids without a sleep study done first. A sleep study is necessary to rule out sleep apnea because opioids can affect your central nervous system and depress breathing.

Before my sleep study I was a bit of a skeptic. I really didn’t think I would be able to actually sleep for a sleep study. But, it was pretty darn easy. I opted for the at home sleep study. I knew sleeping at a clinic would never work for me. Also, take all your regular medications. Much to my surprise, my sleep study results proved I had no apnea and my results were normal.

I am all in favor of testing to rule out potential underlying causes of this horrible disease. RLS sucks!

TheDoDahMan profile image
TheDoDahMan in reply to DataRN

"RLS Sucks" Sounds like a good slogan for a T-shirt!

Munroist profile image
Munroist in reply to TheDoDahMan

It's a good sign-off line!

lhammy66 profile image
lhammy66

My sleep study was to monitor sleep apnoea and identified RLS was a worse problem. The only advantage I had was knowing that I jerk every 90 seconds - I’ve tried every Jed under the sun and they don’t particularly agree with me. Ropinirole gave me relief for about 6 years before I augmented. I’m now trying clonazepam- not sure. It’s been some help but it doesn’t seem to be entirely reliable. Hey ho. Doesn’t help that my iron has to stay low because of a blood cancer. But the sleep study in itself will only tell you that you have RLS unless they are looking for other things?

SueJohnson profile image
SueJohnson in reply to lhammy66

Have you thought of trying gabapentin which can completely control your RLS?

lhammy66 profile image
lhammy66 in reply to SueJohnson

Yes. I didn’t work for me I am afraid.

lhammy66 profile image
lhammy66 in reply to lhammy66

I started with the sleep service who treated my sleep apnoea and the consultant there tried everything with the GP supporting. I have had many different pills and patches all of which proved that I am very sensitive to drugs (as in bad side effects) and/or the6 caused augmentation. The clonazepam has at least dropped my nighttime wanders from 9 times a night to 3 or 4 which is a big improvement. For a while a minimum dose of amytriptyline and paracetamol had helped at least for some nights but it was fairly miserable but helped a bit in the three year wait in gaining access to a neurologist but she is also scratching her head. There is a colleague that she may need to refer me on to so I guess I’m just a complicated case. I’m convinced that I have had this condition since childhood as there are lots of reports from my family about my thrashing around all night in my sleep. Luckily my current partner could sleep through a tornado!

SueJohnson profile image
SueJohnson in reply to lhammy66

How much did you take?

lhammy66 profile image
lhammy66 in reply to SueJohnson

I no longer remember. It was a while ago but the side effects indicated it was a drug I had as bad reaction to. And it made no difference to me RLS. The GP has put it on a list of drugs that I don’t tolerate.

SueJohnson profile image
SueJohnson in reply to lhammy66

It sounds like you need a low dose opioid.

lhammy66 profile image
lhammy66 in reply to SueJohnson

I don’t think the blood specialist would recommend that. I’m a difficult case to solve as far as I can see. But I’ll keep ploughing on. Hopefully after years of trying things someone will find an answer. Thanks.

SueJohnson profile image
SueJohnson in reply to lhammy66

You can always ask.

Cowbsky profile image
Cowbsky

_ HI, Ted_ I would favor a sleep, however, only if you are willing to continue all-night observations for a very long while (five years in my case, and still learning a lot), by yourself, by renting or buying a CPAP (even the simplest brick one), download the OSCAR free app from internet, and read daily the dataset coming from the CPAP. Sleep study would be mainly only to calibrate what you are going sure to learn from CPAP derived data and interpreted by yourself. Well, this is my life-saver experience....

_ just to give news on my case. I am pretty much 70 these days. Suffered with RLS since 7, as far as I remember; and with UARS since 17, I think. After retiremnent I decided to learn work deply both conditions; first thing to do, would be to have deep knowledgen on them. It was my rebirthing at age of 65!!

_ so much things you can learn about your sleep, with a sleep study and CPAP derived dataset. However, I warning you: very, very few doctors know how to interpret those data!! You would have to learn yourself (rather easy if you are willing to read some CPAP manuals and study)...otherwise a sleep study would be pretty much useless....

_things like: why you wake up at night, how often it is? ... do you have other condition, other than RLS? even minor sleep disorder breathing ones can wake you up.... how sensitive is your nervous system to minor-breath choking to allow you wake up at night?.... do you have PLMD, beyond RLS? if so, PLMD can micro-wake you up (say, for more than 15 secs), how often are you arousals at night? when they occur? first part of the night, later on?...do you have a normal REMs sleep? say, what are their duration....and on, and on......

_ with all those information could eventually ad: for sure you would end up been able to learn how to sleep, what would the best time to go to bed? what would be the effects (good and bads) of medications on your sleep? do they affect your REM's? affect your arousal threshold? and on and on....

all the best and good luck

Typicallygaslit profile image
Typicallygaslit in reply to Cowbsky

I agree that it’s good to learn this stuff. But CPAP is a breathing machine for people with sleep apnoea so I don’t know what you mean by learning to read its data? maybe you mean a sleep monitor such as a Garmin or Oura, or Fitbit?

Cowbsky profile image
Cowbsky in reply to Typicallygaslit

_ No, I mean using the CPAP to get tons of data, information, and insights about your sleep, and not necessarirly to treat any sleep disorder breathing._ any CPAP machine (Mine is the advanced Bilevel aircurve) comes with a disk that register lots of waveforms (flow rate, Tidal volume, respiratory frequence, mask leaking, .....) on your respiration, which tells you pretty much ALL you need on how your sleep go througout the night...

Good luck

Typicallygaslit profile image
Typicallygaslit in reply to Cowbsky

ok, I didn’t know that, thanks for informing me :)

Cowbsky profile image
Cowbsky in reply to Typicallygaslit

_ even better, to go farther, you may want to add a infrared câmera to film you . Never did this; lots of peers do. I just calibrated my CPAP waveforms with three sleep study data, plus some 5 nights of audio recording (Cell phone app) my sleep (recording sounds of scrachtings, moves, snore, groanings, awakenings(> 15 seconds), wakeups, and so on...._ of course, "how you feel" is the most important parameter guiding you and your doctor. However, after some time those data and information can eventually help a great deal on the understanding of your therapy, effects of medication, dosage, you are on....etc, allowing redirect things, etc. Just one example: once my doctor told the clonazepam 0.5 mg I use for so long would eventually supress or short my REM stages; I prove to him with my data that did not happen, and was the contrary, higher dose> 0.5 mg increased the % of my REM (not good)....therefore I would never go for more than 0.5mg of clonazepam!

Good luck

Amrob profile image
Amrob

I've had 3 sleep studies. The first to establish the problem (PLMD). The subsequent two to establish whether there was limb movement as I was still experiencing tiredness despite being on medication. I found them really useful in terms of the data they produced eg sleep onset latency, amount of REM sleep, number of limb movements and arousals etc.I took my regular medication with the second and third sleep study.

As others have said, they can also detect sleep apnea and potentially other movement disorders.

Fancyrat profile image
Fancyrat

Start here: lofta.com $189 for at home sleep study that is accepted by CPAP vendors (and Medicare). I used this company and it was a simple and good way to have a sleep study.

Typicallygaslit profile image
Typicallygaslit

I had an in-home sleep study through the NHS a couple of weeks ago, and it did not go well. I had to drive far to fetch the device (called NOX) and that stressed me out. I have an underlying chronic condition that makes me wired when I’m tired. Then, the machine turned itself on at 10 pm which is much too early for me, so I got in a hurry to carry out my nighttime routines for winding down and simply didn’t have time enough before trying to work out how to attache the device to my body (this stressed me as well). I just couldn’t sleep after that. I took some of my usual medication (hypnotics) but not the one I know causes RLS. I was so wound up I overdosed quite a bit. It’s difficult to think rationally when the hours go by and you know the darn machine turns itself off already at 6 am! I simply had to get a few hours of sleep and it wasn’t looking good. I haven’t had the result yet but it’s not likely to be a true reflection of my condition. I usually get to sleep between 2-4 am.

On the other hand, I did a private sleep test 18 months ago that was quite helpful to me in a general sense. I was able to keep the monitor on for as long as I wanted so it shows how I sleep in general. I took my usual night time meds including one that exacerbates RLS. It also ruled out sleep apnoea which at least is a good thing to know. But these sleep apnoea monitors don’t check for RLS or PLMd so this is why I had this additional test through the NHS.

I can’t say whether it was worth the trouble. Doctors seem to believe you need it in order to diagnosis RLS but this is not true. The consultant was some kind of respiratory consultant who seemed very poorly acquainted with RLS and didn’t even listen when I explained my problems to him. He opined that I should chuck my medication and do CBT and blablabla. I’m on a waiting list to see a neurologist and I do hope it’s going to be a more helpful experience (when I finally get there… it’s taking years).

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

Oh yes and just to add, I think I will be getting myself a sleep/health monitor such as Garmin, Apple Watch or Oura.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

Are you taking any medicines for your RLS? And what medicine makes your RLS worse?

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

I tried Ropinirole, and was sick as a dog. I have also tried other medications such as Gabapentin and Clonazepam, didn’t tolerate either. I’m currently stuck with hypnotics which doctors shame me for, but it’s what gets me through the night. Doctors just don’t believe me and think I depend on them out of habit. It’s not true at all but the RLS is getting worse with age and so I’m having more trouble getting sufficient sleep. I have also noticed that Tramadol and Co-codeine help a lot but the side effects are terrible and so I can only handle these medications very occasionally. I’m worried that I won’t find a way out of this predicament. I’m trying to raise my iron in the hope that it’ll help. Medically, my only hope is that a neurologist would understand the bigger picture behind my troubles, but I’m not holding my breath.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

Oh and what makes RLS worse, well I think Tramadol actually causes augmentation real quick, like only after a few uses (but this is hypothetical at this stage as I just don’t tolerate it well enough to use it often). All serotonin stimulating drugs and supplements make me (and the RLS) worse, also antihistamines. And so basically most drugs, haha.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

I think all of us with RLS are serotonin sensitive. Btw, B6 raises serotonin. It’s the new “It” supplement for anxiety and depression. Take enough and it will make the symptoms of RLS worse, but is probably great for our dopamine receptors in the long run.

If you want to see whether you’re one of the people that get immediate relief from RLS by taking iron then it’s best to take the most bioavailable form possible. Ferrous sulfate is NOT bioavailable. Even with vitamin C it’s no where near as good as other forms. Despite what some people on here are saying, you can’t just look at the milligrams. For example, close to 50% of ferrous bisglycinate is absorbed. So I’m getting about 12.5mg of iron out of my 25mg capsule. Just 10% of ferrous sulfate is absorbed so that 65mg tablet is giving you 6.5mg of iron…if you’re lucky. I don’t even understand how any one over the age of 18 is able to break down and absorb ferrous sulfate. I wish people on here would stop recommending it

Like I said before, heme iron (one brand is called Proferrin) is highly bioavailable. Probably close to 80% and you don’t have to take it on an empty stomach. When you take iron at night you want it to be able to not only cross the gut barrier, but also the blood brain barrier. Ferrous bisglycinate is broken down into amino acids already. Generally speaking, amino acids and single sugars like glucose can cross the blood brain barrier.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

In regards to serotonin, well I started to put two and two together when I found that I haven’t really tolerated any of the typical fibromyalgia drugs they’ve been pushing me to take, and then went through all the typical supplements last year. B6 was one I found I didn’t tolerate, and in actual fact, all B’s seem to be a bit of an issue. I was glad I was able to persuade my GP to check a few other things besides iron (because of a recommendation somewhere on an NHS site) and found that my folate is sky high. That helped me ditch a theory about low folate and relieved me of the stress that ‘maybe’ I need these vitamin supplements. They make me feel decidedly depressed so all of these serotonin supporting agents have a depressive effect on me… go figure. But the main thing is, they also keep me awake at night. Here’s an article that I found really helpful in trying to understand the deeper problem with serotonin and what some researchers would probably call mild serotonin toxicity > academic.oup.com/painmedici.... No I don’t see why B6 would be helpful to me in the long run but I obviously need some in my diet. I don’t want to restrict my diet if I can help it.

As for the iron, well I couldn’t find anything worthwhile on the UK market so I’m not sure what iron supplements people are taking. I sure hope the one I ordered is going to be helpful because it wasn’t cheap. I really want to avoid the ones with additional ingredients.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

You may be asking what medication I’m referring to in my original post above, well I’ve been using low dose Quetiapine for many years as it seems to help with certain aspects of my insomnia. But it also exacerbates the RLS and so I would like to find something else. But again I’m not holding my breath about finding a specialist who knows these medications and conditions well enough to suggest something useful.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

You are certainly right that Quetiapine makes RLS worse as you have experienced. What are you taking it for?

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

It was given to me many years ago to sleep, and it does help so I’m assuming it’s calming down the catecholemines that are also running rampant during the night. It has been difficult to figure it out but it acts on choline and noradrenaline and in small doses, it may act on serotonin as well, which is something I would want since I seem to have too much of it. It shouldn’t act on dopamine in small doses. It has helped me keep the hypnotics down. I just put up with the restless legs over the years but can’t do it anymore. I don’t know of an alternative unless getting the iron up helps.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

If you are taking it for sleep, ambien is a good one for that and it doesn't make RLS worse. Have you had your ferritin checked?

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

Yes I started on Zopiclone in 2000 and it helped a lot, worked for eight years but then things got worse and so it’s been a battle since then. I don’t think it’s so much habituation as just ageing bringing on more neurological issues. At the moment I take more non-benzos and benzos than doctors would like, and of course they believe these medications don’t work long term which is bullocks in my case. As for ferritin yes I had it checked recently when I understood that this could be a key issue and so I’m working on taking liquid iron and a good helping of spirulina every day. It’s been a month only but so far I’m feeling better in the day overall so have my hopes up that this will help over time.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

My ferritin was 52 (non fasting) which the GPS were happy with so I had a hard time explaining the current research suggesting it really isn’t good enough. I do feel quite hopeful about this route.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Here is our other member with issues besides RLS. healthunlocked.com/rlsuk/po...

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

Which liquid iron are you taking?

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

I started out using Floradix but I have some issues tolerating vitamin B so wasn’t going so well to begin with. I quit taking B complex and now I take almost a table spoon full of the Floradix. I also take a few drops of a plain liquid one called Zen something, been upping it slowly. I do this before my breakfast. I put some vitamin C powder on my tongue also just in case Floradix isn’t enough. At the end of the breakfast (which is really lunch/dinner in my case haha) I take about three table spoons of spirulina. The combo definitely puts a spin on the dopamine but without causing me tachycardia which things like tyrosine cause me. I have IBS so I’m wary of causing stomach problems.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

I’m aware that only some iron is absorbed in the gut each day so I’m not quite sure how much I should be taking tbh, but I’m just upping it slowly and observing the effect.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

The problem with floradix is it only contains 10 mg of elemental iron at the recommended serving, whereas the normal recommendation of 325 ferrous sulfate contains 65 mg of elemental iron. You might want to try Hematex Liquid Iron which contains 100 mg of elemental iron which is actually a little more than can be absorbed each day (85 mg). Or you could take Geri-Care liquid Iron which has 44 mg of elemental iron and take twice the serving size. In any case I assume you taking it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee as it is absorbed better on a empty stomach. It is also absorbed better at night. and as you noted it is absorbed better with Vitamin C or orange juice. I can't look up the Zen one since you don't know it's name but if you could give it to me, I could try and find out how much elemental iron it has.

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

Ok, that’s great advice, I’ll certainly take it on board. I had to start somewhere and see what I tolerate, since iron bisglycinate didn’t go down well with me at all. The other brand I bought is Zen Naturals High Strength Vegan Iron bought on Amazon. I seem to be ready to increase the amount I’m taking.

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

Um actually those are US brands and I’m in the UK.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

You should be able to get them on Amazon.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

Whoops I guess not. I'll check for other options.

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

I’ve done a bit of searching and it really is difficult to find anything that seems worthwhile without all the added flavours and sweeteners, and also a bunch of vitamin B’s that I’d rather keep separate. I eventually found one from a company called Metabolics, it’s ferrous sulfate ionic liquid iron 13 mg/10 drops. Got myself a big bottle which was price worthy compared with the smaller ones and hope I’ll tolerate it. Do people really tolerate 65 mg per day? Seems like an awful lot, especially for people with general tolerance issues.

SueJohnson profile image
SueJohnson in reply to Typicallygaslit

Absolutely. Glad you were able to find something although 13 mg elemental iron again isn't much.

Typicallygaslit profile image
Typicallygaslit in reply to SueJohnson

People seem to have differing opinions on the best type but this was the only one that didn’t come with a lot of additional stuff. I can just take more of it. I’m also trying to include more in my diet etc.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Quetiapine is a dopamine antagonist. Terrible for RLS in the short run but I believe (and probably I alone) that in the long run it up-regulates the dopamine receptors. We SO need to up-regulate our receptors. All of us. There has to be a less painful way however. I recommend having your doctor prescribe the lowest dose of trazodone (which I believe are 50mg) and then take 1/4 of that pill. You won’t be able to keep your eyes open.

Someone else on here has numerous autoimmune conditions and takes Seroquel and iron. Let me find her.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Over the years, I’ve tried pretty much everything there is for sleep, and I also tried Trazodone about 18 months ago when I was desperate for some new ideas. Didn’t tolerate it at all, was sick as a dog. So I’ve stuck with the medication that has caused me the best quality sleep with the least disturbance. The Quetiapine dose I take is minimal at something like 6 mg but it does seem to make a difference to length and quality of sleep. Or at least it has, so far, now I’m not quite sure. I do have RLS without it, too. According to my own research, a low dose like that wouldn’t touch the dopamine but rather put a lid on serotonin, which is what I want since I seem to not tolerate serotonin AT ALL. But again, it’s hard to find data.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

A low dose over a long period is what you want to up-regulate your receptors. Sher78 uses Seroquel and now iron at night and it relieves her RLS despite being on the Seroquel. Oh, one other thing - no eating after dinner. None! People find this helps their RLS tremendously.

Here’s an article about Seroquel. One of dozens. huntingtonsdiseasenews.com/...

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Hm, I’m not sure what that means in practice but the article does say ‘The second mechanism through which Seroquel acts is by blocking serotonin receptors, primarily one called 5HT2A’ and as I said before, I think that’s key in my case. But also as I said somewhere else, it calms down other catecholemines such as noradrenaline and choline. I actually take choline in the day time and benefit from it, so by the end of the day, it may not be so much about levels as circadian dysregulation that makes my world upside down. So basically feeling tired in the day time and wakeful in the night time. RLS has been linked to glutamate hyperarousal and I do think this is a key element in a lot of chronic diseases (issues with the NMDA receptor). But it’s complex and hard to figure out.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

I should add that I have found through trial and error that I have some issue with the metabolisation of serotonin that looks a lot like mild serotonin syndrome, but it’s another grey area of research that isn’t easy to demonstrate to doctors (who aren’t typically on top of the latest research). This is also one way in which glycine may be making me feel crap - it stimulates serotonin.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Right you are about glycine prompting production of serotonin. And I just read that it is also very sedating as far as supplements go. The ferrous bisglycinate really knocks me out, though less so now after 10 or more years of use. I’m not sure how much glycine is in my capsule, but I’m gonna guess enough to make me very drowsy. I always thought it was the iron. One man on here told me I needed to be checked out since iron shouldn’t have that effect.

Well thanks to you I’m putting that down as a mystery solved and I wish I could remember who told me that there was something wrong with me if the ferrous bisglycinate knocks me out. I just tune people like that out. I owe you. Plus, like you, the ferrous bisglycinate does have a very slight hallucinogenic effect on me though less so now. Sometimes after taking the iron, or should I say glycine, I would fall asleep in a different room than my bedroom and when I would wake up I wouldn’t know who I was or where I was for a few seconds. I guess you and I are very sensitive to glycine. I actually like that feeling. I might have to buy a glycine supplement. 💫

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

I’m glad to find that there’s at least one person in this universe who understood what I was talking about! I have a connective tissue disorder and glycine forms part of collagen so I have been putting down my sensitivity to ‘something to do with the faulty collagen formation’. Yes glycine is typically inhibitory and sedative but all such substances have a stimulating effect on me. And this is where my sleeping troubles go down very deep into the murky ground of a neurological disease that I don’t think any neurologist is willing to take a look at. I found the same issue with magnesium bisglycinate which I tried for sleep. I tried some iron last night when I couldn’t sleep but I did take a couple of other things as well and had a small snack so can’t say for sure why I woke up even more and the RLS started up (before that I was just wakeful).

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Can you not take it for just one night and see if you even still have RLS?

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Yes I’m sure I said on here somewhere that I do have RLS without it. I’ve tried doing without but my sleep seems poorer so it’s doing something good but I really should find an alternative. I mean, it could be as simple as the fact it acts as a beta blocker, but then beta blockers can also cause RLS.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Maybe reply to one of Sher78’s posts. She has a great attitude and is generally very responsive. She too insists that herRLS has nothing to do with Seroquel. I disagree. I think it has been great for her RLS. And yours too. If you’re like her then taking iron at night will solve everything.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Yes, sure, thanks. Weeeell… I do think it’s aggravating the RLS so I can only manage 6 mg without getting extreme disturbance. That’s an absolutely minute dose. I was originally prescribed 50 mg per night and that’s not even close to the dose they give people with psychosis (which is in the hundreds). So I do think the action is more complicated than just putting a lid on dopamine which it basically shouldn’t do at such a low level. But no one seems to know for sure.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Oh wow, have you ever done right by yourself!!! It was just a hunch of mine that Seroquel would up-regulate the D2 receptors. Here it is in black and white. ncbi.nlm.nih.gov/pmc/articl...

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Yes I’m sure I’ve seen that article also. The problem is, we don’t know exactly what’s wrong with dopamine or any of the other catecholemines (and it can be different in all of us). It’s not always about levels, but often about dysregulation. So for instance, you can get glutamate hyperarousal because the glutamate is overstimulated due to low activity. It can all be very complex.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

Also just to add that I believe (and have had it corroborated in some scholarly article somewhere) that dopamine and serotonin can be in fighting mode so you wouldn’t want to increase serotonin if you want more dopamine in the system. Some of us are very sensitive to this balance.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Yes they are in fighting mode. And you do want them in balance.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Maybe? It’s pretty much accepted that we with RLS have small, few and pathetic D2/D3 dopamine receptors. We should stop calling it RLS and start calling it LDR…lousy dopamine receptors. That’s why dopamine agonists are so bad for us. They make our lousy receptors even lousier. You on the other hand have been taking a dopamine antagonist which is also a serotonin antagonist. A serotonin antagonist should make the RLS better in the short run but worse in the long run. You’re right, very complex. Yet at the end of the day, studies have shown it up-regulates the receptors so the fact that it also antagonizes serotonin I don’t believe has been a drag on your receptors. Wow!!! Fascinating. Thank you. Can’t wait to see how you do with the iron at night.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Haha, yes something like that! I can see that all my ‘mental issues’ back in the day were just basically due to chaotic neurological issues and not really that much to do with psychology. What can you do, growing up with faulty receptors and what have you. Anyways, so what really puzzles me is that I don’t tolerate dopamine agonists at all. I’ve tried Ropinirole and also recently Aripiprazole which was suggested as some kind of wayward attempt to get me off sedatives. The latter is a partial dopamine agonist and partial serotonin agonist. It made me feel sick, pretty much the same as always whenever I try any of these types of médecines. There were some signs of increased dopamine activity. I cut the pills in 8 and tried minimal doses (subclinical in fact) and still had issues. Couldn’t sleep either. Then in desperation used a bit of melatonin and funny enough, a balance was achieved I was then able to sleep. But. The interesting thing that happened was that when I quit it after five days of misery (not tolerating the combo over time), I started speeding. In a rather nice way, i.e. I felt energised and more ‘like myself’. Got things done, felt happier, more joyful. I can see the dopamine receptors had been activated. But then I couldn’t sleep and I didn’t tolerate taking melatonin over time. So it begs the question as to whether maybe (as I have also read somewhere) the dopamine is actually too active during the night. But it’s hard to say why.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

I should add that now after research and being part of the community of sufferers, I can see that not tolerating dopamine agonists is just as well. As you say, the receptors get lazy (or some such more intricate phenomenon) and that is just NOT a good thing. I’m thankful there’s agreement about other approaches.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Melatonin is great. It is supposedly the fountain of youth. It turned my mild RLS into the devil incarnate and it took me years to figure it out. Fortunately the iron counteracted it. When I stopped the Melatonin my RLS went quiet. Quieter than ever for about a year. I believe the melatonin had up -regulated my receptors. Eventually the receptors returned to baseline. Nothing good lasts forever.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Hm, well this thing about up regulation is interesting as I didn’t really think any drugs would have any kind of lasting effect on receptors. When I took that Apipiprazole, the speeding lasted about five days. Haha, yes indeed, I was given 10 mg melatonin back in the days, no wonder I felt poorly, trying to handle a fresh marriage while not being able to sleep. I was younger and tolerated more ‘abuse’. They also wanted me on Mirtazapine which was also a silent killer for me. I decided of all the bad, the quetipine was the least worst.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Even at 6mg I guarantee it is “putting a lid” on dopamine, however slight. If not, then it wouldn’t be aggravating your RLS. If it’s putting you to sleep it is doing something. Just like that 1/4 of the lowest dose of trazodone does something. I took .5 mg of melatonin and it gave me restless body. Compare that to your 10.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Yes to be fair, this has crossed my mind also. If such tiny amounts of other drugs are doing something to both dopamine and serotonin, then maybe this is, too. It almost seems like there isn’t a single drug that doesn’t cause this havoc. Exactly how dopamine and serotonin affect one another at the receptor is not clear to me as I’m not a medical student (well now I am but self taught haha), but yes they do seem to cross talk an awful lot.

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

I should probably add in this context that antihistamines are awful for me, and I found that taking a small amount of l-histidine at night, the precursor to histamine, was actually helpful. I can’t really explain it since the antihistamine is supposed to be putting you to sleep. Histamine sort of turns itself off much like a switch makes the room dark. So it’s needed for the sleep process but it also needs to go quiet at night. In addition, histamine is an important regulator of both serotonin and dopamine. So I’m confused to say the least. But antihistamines do seem to turn off both serotonin and dopamine so there is that, and if I take l-histidine, maybe it doesn’t immediately turn into histamine. Lots of people with chronic illness feel they have high histamine levels but I think mine are low and that could contribute to the problems I have personally.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

All true. But for us with RLS the devil is those pathetic dopamine receptors and VERY little stored brain iron. Trust me on this one, but not anything else. Always do what’s best for you. Gotta get my tush out the door. One step at a time. Xx

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Thanks, no I think we may well have come to similar conclusions and that’s reassuring, everything I’ve thought so far is making sense 👏💪. I need to do my exercise, my daily regime is no 1 therapy. Thanks for the chat! 😘

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

Brain iron deficiency is believed to be the root cause of excess glutamate in us with RLS.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Ah ok, I don’t think I’ve seen it spelled out anywhere, or maybe I just didn’t pay attention as I’m really attention deficit. I also have severe tinnitus with hyperacusis pain and I’m starting to see that it’s probably all connected - I do so hope the iron is key since I have already addressed so many other potential issues.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

I have tinnitus also. And an auto-immune condition called Antiphospholipid syndrome. I never felt they were connected since they appeared decades apart. Yes, try the iron at night as well as the evening fasting and maybe compare notes with Sher78.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

I do often get hungry at midnight and night time is the only time I have an appetite. The consequence does seem to depend on what I eat. Some foods are triggers, others help (whole meal crackers seem to help). As for tinnitus, well I think mine has something to do with the dysregulated NMDA receptors so probably glutamate excitotoxicity at least as a basic starting point. I’m wondering whether all auto immune problems have this component (I seem to have come across some such ideas). How do you even get diagnosed for something like what you have? Doctors just never check for anything and I have to suggest everything to them.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

After giving birth my sed-rate and ANA went sky high. The sed-rate came down but not the ANA. Only very recently did I have bloodwork that drilled down on the antibodies. That’s when they found the syndrome I have. Have probably had it all my life. Fatigue is the worst symptom if that is even the cause.

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Wow 😳. Stiffness and fatigue have been severe in my case, so much so I even had myself tested for GAD antibody activity related to stiff person syndrome. They didn’t find any, however doesn’t mean there isn’t some problem there at the NMDA receptors. Apparently that’s quite common with autoimmune activity.

SanAndreas profile image
SanAndreas in reply to Typicallygaslit

The fatigue is a work in progress for me. A nap helps. Gives me a second wind. Here is an article for you hopkinsmedicine.org/neurolo...

Typicallygaslit profile image
Typicallygaslit in reply to SanAndreas

Yep I’ve looked into Earle’s research, it’s fab, and he looks like a convincing fella too, haha.

TeddiJ profile image
TeddiJ

Thank you VERY much, All! I really appreciate the information. I feel like I would sleep just fine if the rls/plmd didn't constantly wake me.

Amrob profile image
Amrob in reply to TeddiJ

I have never heard of PLMD waking people TeddiJ. They must be rather severe movements to waken you?

Butterflysun1 profile image
Butterflysun1 in reply to Amrob

My RLS movements wake me over and over again every night

Amrob profile image
Amrob in reply to Butterflysun1

Yes, however PLMs typically occur during sleep and don't cause one to awaken.

Butterflysun1 profile image
Butterflysun1 in reply to Amrob

I don’t think I have PLMD but Teddij suggests he has both. My RLS keeps me awake if present but when asleep I am woken up over & over by my legs thrashing around / the horrible sensation & I emerge from sleep with that already going on then have to get up. As you all know it’s horrible.

TeddiJ profile image
TeddiJ in reply to Butterflysun1

Me, too.

Cowbsky profile image
Cowbsky in reply to Amrob

_ well, this is debatable, as far as I studied, can wake you up or not: it depends on the level of PLMD. In time, not necesserily wake you up, also rather provoking arousal/awakenings ( that is, < 15 seconds; not conscious of, but easily seen on data), however enough to deeply disrupted your sleep, not allowing to move downward to reach N3 stage;

all the best and good luck

Amrob profile image
Amrob in reply to Cowbsky

Yes, generally they tend to be micro arousals, ie you don't "wake up" as such. There's no doubt these micro arousals impair sleep.

TeddiJ profile image
TeddiJ in reply to Amrob

Hi, Amrob. Yes, they are severe and definitely wake me. In fact, many nights I don't seem to have rls at all. I have these serious jerking movements that pull my legs up from my midsection. It is awful. Kratom stops it quickly but only lasts a short time.

Maximus01 profile image
Maximus01

Maybe my story will address your question about a sleep study. I just had mine a little over a week ago. They want you to take the medications you normally take, unless otherwise suggested by your doctor. I had taken one before and that was the time I was informed of the PLMD all night. So this time I wanted to find out whether this was still occurring, since I have been taking 1200 mg Gabapentin throughout the evening before bed. Also 3 mg Melatonin and 1 mg Lorazepam one hour before bed.

The sleep doctor already sent the results to me and the PLMD is now at a "moderate frequent amount." At least that was helpful information since four years ago it was very bad. During the study, I tossed and turned with all the sensors attached to me. Finally went to sleep and got about 4 hours. I also did not know that I have a mild obstructive sleep apnea, which is a total surprise to me, except that I get up every morning feeling totally tired. One of the docs' suggestions was a CPAP. Need to think about this. Of course, I never get a full night's sleep and probably am drowsy from the Gabapentin as well. So maybe this would help. As to medications, there are no meds without side effects! There are also dental devices for sleep apnea. I am not sure what to do. Will have an actual visit with the doctor about this study and discuss. To answer your question: You can probably take all your meds you normally take AND you may find out after the study what is really going on with you during the night. We need all the information we can get and perhaps make better decisions.

Cowbsky profile image
Cowbsky

_ my experience: even mild sleep apnea can be deleterious for you. First line of treatment (my modest opinion and renowed doctors, Barry Krakow for instance) of sleep problems would be workout respiration issues._ then I would kindly suggest you go strait to the Golden standart: a Bilevel CPAP, Resmed, aircurve 10.

ALL the best

TeddiJ profile image
TeddiJ

To: All of you....I had a vision of myself hooked up in a sleep lab on video...and wondering what they would think of my current set up: my cup, bottle of water, my bag of kratom, and my teaspoon-waking every 1-2 hours and mixing my "dirt" next to the bed?! Lol-omg.

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