Insomnia he'll due to rls: I'm on my... - Restless Legs Syn...

Restless Legs Syndrome
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Insomnia he'll due to rls

Loopylegs
Loopylegs

I'm on my 3 night of zero sleep due to rls, my symptoms have got so much worse nothing helps, I've been on ropinerole but I keep having to up the dose and it leaves me feeling depressed, as with pramipexole, tramadol was Woking for the past year but now I've had to up my dose and because I've asthma it is affecting my breathing at night so I'm afraid to take a higher dose, gabapentin never worked, pregablin depressed me, iron therapy didn't work, codeine did for a few months then stopped working, I hate taking medication but my legs, arms shoulders crawl, no matter how tired I am I just can't sleep with the sensation, even my old reliable antihistamines make it worse, is there something else I'm missing? I've also done the whole vitamin thing, magnesium, etc... I exercise, I'm fit, not over weight, just finding it so difficult to cope with 1 or 2hrs sleep every night, I crawl all day long, I gave up alcohol over a year ago to see if it made a difference but nothing seems to work, I've inherited it from both sides of my family, most of my siblings have mild rls but mine just seems to be getting worse, I'm 47, can anyone out there help?

71 Replies
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If you are having to increase your dose you are probably augmenting. Have you heard of this? It is where the medication actually makes the symptoms worse. Dopamine agonist medications such as those u mentioned are notorious this. I have also tried all of the medications u suggested and have only now found relief with oxycodone. I have the backing of pyschiatrist to prescribe this as she has seen how devastating this disorder can be on your mental health. Alas i feel the oxy may also be losing effrctivity so am looking at other opiods as have learned that each opiod type affects different receptors in the brain and one may work better than the other. It's a terrible terrible disease.

Loopylegs
Loopylegs in reply to Nikwat

Thank you for your advice, it's comforting to know there's others out there with severe rls, sometimes I feel like I'm going mad!

Also! Antihistamines can send RLS crazy. I can only take Telfast ( brand name). Antihistamines, some anti Nausea, some steroids can all make your symptoms go crazy! I have quite a list of the things that make it worse (yes I've tried diet, exercise, and alcohol too but nothing seems to help for long)

Hello, sorry to hear about your suffering. The worst part of RLS is the lack of sleep.

I'm afraid it's quite difficult to see a way forward in your case.

What is fairly obvious is that you're suffering from "augnentation"/ In case you haven't heard of this, it is a condition caused by taking a dopamine agonist (DA) such as ropinirole.

The classic signs of augmentation are -

Having increased the dose of DA

Symptoms more intense

Symptoms happen quicker.

Symptoms spread from the legs to other parts of the body

Symptoms happen earlier and earlier in the day.

As well as being prevented from getting to sleep due to worsening symptoms even if you get to sleep, you wake after only a short time.

Here's a link to a good article on augmentation.

sleepreviewmag.com/uncatego...

In a nutshell, your current situation is caused by the ropinirole you're taking. This is very common and it's not unusual to read of several members of this forum each week suffering augmentation caused by taking a DA

The best solution is to stop taking the ropinirole, or any other DA i.e. pramipexole or rotigotine.

I'm afraid this isn't easy. The first problem is that when you stop taking a DA you can get severe withdrawal effects. The second problem is that once you've stopped taking a DA your RLS will probably return to how it was before you starting taking any RLS medication.

The way to deal with withdrawal effects is to wean yourself off the ropinirole. v e r y v e r y slowly.

Withdrawal effects usually consist of worsening symptoms and sleeplessness. This seems very daunting considering you'e aleady suffering this, but these withdrawal effects will fade. They will also be less worse if you wean off slowly. I believe it's now recommended that you take at least 3 months.

There are a couple of other things you can do to help reduce withdrawal effects, but this depends on your doctor.

A benzodiazepine (commonly clonazepam) or zopiclone can help with rhe insomnia.

You must NOT use a sedating antihistamine with RLS. Antihistamines make RLS WORSE.

The other thing is if you persuade your doctor to prescribe an opiate. Oxycodone has been commonly used for RLS, even codeine can be if some help.

These two can be taken temporarily whilst withdrawing from ropinirole.

Once you've weaned off the DA, it's a good idea to continue to take a replacement. The alternative first line medications for RLS are the gabas, either gabapentin or pregabalin. The problem here is that you say you've tried these before and they didn't work. Another potential issue with these, for you, is you have asthma .

As regards these not working. There are often reasons.for them not apparently working and I wonder if these apply to you.

1) If you take either whilst suffering augmentation, they may not seem to work. It will only become apparent they work after withdrawing from any DA.

2) Some doctors don't prescribe a sufficient dose. The minimum dose which can be effective is AT LEAST 900mg gabapentin or 150mg pregabalin.

3) They aren't given sufficient time. The effective dose needs to be taken at least 3 - 4 weeks to become effective.

If any of these 3 apply to you when you took them, this may explain why they didn't work

As regards your asthma. If you were to take a gaba, they are known to worsen respiratory depression if it previously exists and/or if somebody is taking an opiate Your doctor would have to keep an eye on this. It's usually when someone is having "central" respiratory issues e.g. opiates depress the brain breathing centre. It can also happen with central sleep apnoea and COPD. However, astma is NOT a central breathing issue.

If the 3 reasons for not working above apply, then it's worth trying a gaba. You would be best to start this BEFORE starting to reduce the ropinirole. You can take both at the same time.

Alternatively some RLS sufferers manage to get a prescription for a low dose opiate to replace a DA. Oxycodone is typical, methadone has been used and recently buprenorphine. The difficulty is getting a prescription.

I have to say, if you want to gain any improvement at all, even if nothing else will work for your RLS, it would be hetter to wean off the DA than to continue with the augmentation you're now suffering.

Here's a link to an article. Read the section on augmentation.

uptodate.com/contents/treat...

Other things you can do.

Iron has to be taken for quite some time before you know it's having any effect. The best way to judge is to have blood tests for "ferritin". It has been found that 50% if RLS sufferers benefit from raising their ferritin level to at least 100ug/L. If yours is under this, you can raise it by taking iron orally, but it can take 3 months or more Some of the 50% that don't benefit may benefit if they raise it to 350 - 400ug/L. That however may be difficult

Avoiding "aggravating" factors - alcohol you know about. Caffeine can also be a problem and extra (refined) sugar . Some RLS sufferers find restricting all carbohydrates helpful. A FODMAPS diet, low oxalate diet, gluten or lactose free diet helps some people (i.e. if they have gut problems or are gluten oe lactose intolerant.

These medicines make RLS worse - SSRI or tricyclic antidepressants, proton pump inhibitor antacids (-prazoles) or H2 inhibitor antacids e.g ranitidine. anti-nausea meds, e.g. metoclopramide or domperidone, beta blockers. calcium.channel blocker blood pressure meds and sedating antihistamines (even in cough medicine),

These supplements can help if you have a deficiency in them, vitamin B12, vitamin D and magnesium. (But only if you DO have a deficiency). Celery juice (tablets) may help.

This is a lot of infirmation to take in, I'm afraid.

Overal, your main issue is augmentation and however difficult it's going to be, I believe your only real way out of your current situation is to wean off the ropinirole. The rest will not really be very effective until you do that.

For any further information or support, keep inntouch with this community.

I can give morecdetail about weaning off ropinirole or how to take iron more effectively

Loopylegs
Loopylegs in reply to Manerva

Thanks so much for all the advice my doctor isn't great for giving out opioids apart from tramadol, but I'll get another blood test done to check my ferritin levels perhaps I'm not absorbing the iron, my first test showed low ferritin so I took the iron for 4 months there was a slight improvement but I'm back at square one so I'll definitely look into it, appreciate your reply thank you

DicCarlson
DicCarlson in reply to Loopylegs

If absorption is a problem you could try a patch (PatchMD) to bypass the digestive system. patchmd.com/iron-plus-topic...

Loopylegs
Loopylegs in reply to DicCarlson

Thank you

janland
janland in reply to Manerva

Hi Manerva..

I have just been reading your answer re... loopy legs rls hell...

My last blood test showed 50 for ferritin level.. and since then have been taking 200 mg ferrous sulphate 3 times a day...but still no improvement...

Just lately. I've had no sleep for most of the nights...as restless legs just getting worse... to the point of being unbearable..

I don't take any other meds apartment from thyroid hormone.. levothyroxine.. and blood pressure tablets low dose amlodipine... which I'm hoping don't make rls worse...

I'm not overweight.. just 8.5 stone...walk and yoga most days for exercise.. eating 90% natural foods...

but lately am thinking if 2 morning coffees and a pudding after dinner with sugar and carbs make things worse..?

I usually eat porrige 3-4 times a week...carbs again with full cream milk..?

Magnesium tablets with the magnesium gel plus leg massage and b and d vitamins don't seem to be helping any more..

I'm at the stage where I'm not functioning in daytime very well at all...

Forgetful..... blood pressure up.... and just exceptionally tired ..not having any deep sleep...not even sleeping until it starts getting light..... just don't know what to do next or where to turn..

In your knowledge.... what could you suggest...

Thank you so much...

I am sure you are a wonderful help to many suffering people..

Very best wishes

Jan

Manerva
Manerva in reply to janland

Hi Jan

As regards iron. Your ferritin needs to be at least 100ug/L and it can take months to achieve that . Taking it 3 times a day isn't possibly going to be all that helpful. It sounds logical on the face of it, i.e. the more you take, the better. However, it can be counter productive because the body restricts how much you actually absorb. If you take it 3 times a day you won't absorb most of it. Taking once every two days will probably be just as effective. Also, to promote better absorption, take it on an empty stomach, in the evening and drink a glass if orange at the same time.

You still won't get an immediate effect.

Such things as magnesium, vitamin D and vitamin B 12 can improve RLS if you have a deficiency in them. However, if you don't have a deficiency then they won't. No harm in keeping taking them to maintain the level, just don't expect any improvement in RLS.

Amlodopine can make RLS worse, I'm afraid.

You are at a disadvantage with the the thyroid dysfunction, but the levothyroxine is all you can do.

Refined sugars e.g. puddings or in sugar coffee is not a good idea. Porrige is OK, it has benefits. I believe a low carb diet benefits some people, I'm not clear how it's supposed to work. Some of what I've read about carbohydrates affecting RLS is complete nonsense

Some people find a low oxalate, FODMAPS, gluten or lactose free diet helpful. But that would have to be trial and error and no immediate effect.

There may be specific triggers in your case, other medications or you might want to keep a food diary and look at the contents of what you're eating, especially for additives, e.g. msg.

There are various devices that are claimed to help with RLS, but again it's a matter of trial and error whether they'll work for you. They also cost.

If you want to get immediate relief, I'm afraid you have to consider RLS medications. If you're not taking any, to get relief in the short term you'll need to consider starting.

If you're already taking RLS medication, it may be what you're taking that's causing problems.

janland
janland in reply to Manerva

Hello again..

Thought I'd let you know an update.

I managed to get a phone appointment with a doctor this morning..

Never actually seen or spoken to him before but he sounded very nice and interested in my dilemma.

He had my March blood results in front of him... and after a quick chat suggested I stop bp tablets altogether for 2 weeks to see if rls improves....

Just hope that the bp doesn't spiral again....so am now looking into natural methods of controlling bp such as foods with nitric acid... beetroots?

and mabe olive leaf and I think colostrum might be good....but of course all extras like these cost money...

Also sea minerals and kelp and coral etc are good...(so I've been reading )

I'm trying not to take medication from docs for rls and periodic limb movement because of augmentation problem...

Doctor didn't mention iron levels...but I'll ask him in 2 weeks if I can.

Another very bad night last night..but hoping better from now onwards...

I'm including meditation as well and yoga too if I can find the energy.

Thank you once again for your help..

Best wishes

Jan

Manerva
Manerva in reply to janland

Thanks for the update. I hope you manage without the amlodopine. There are. as you're finding, natural ways of reducing the BP.

Its your ferritin levels that need testing NOT bloodi ron.

In case you are struggling, I hope you realise that not all medications cause augmentation. Only dopamine agonists.

janland
janland in reply to Manerva

Once again thank you..

I was interested to read ...you say not all rls medications cause augmentation...?

Oh ?

I was under impression that all of them did...but only the dopamine agonists..?

Perhaps then I could possibly be prescribed one that doesn't lead to that...

If so... which one would you recommend to start with..?

I just might need to return to bp tablets in some form... probably will..

Thank you

Jan

Manerva
Manerva in reply to janland

It's now becoming recognised that an alpha 2 delta ligand should be the first medicine tried for RLS, not an agonist. This is because these medicines do NOT cause augnentation.

I suffered augmentation because of taking a dopamine agonist. I got over this by taking an aplha 2 delta ligand and stopping the agonist.

The ligands are either gabapentin, which I take, and pregabalin.

The gabapentin works well for me and also helps with my nerve pain and helps me sleep.

Here's a link to an article for more information, See the section on the alpha 2 delta ligands.

uptodate.com/contents/treat...

Sorry, but unless you deal with the augmentation, you're not really going to make any progress.

The iron's not really going to help unless you reduce and/or stop the ropinirole.

I understand that's really difficult, but I'm afraid that's the reality.

Loopylegs
Loopylegs in reply to Manerva

I'm not on ropinerole, it stopped working a year ago, I'm just taking tramadol at the moment, last night I took pramipexole another DA and it worked so I'm pretty sure it's lack of dopamine causing my rls if I stay on pramipexole it will augment too so I'll take your advice about the gabapentin, my doc gave me a dose of 100mg to take at night which is obviously not enough, so thank you again for your advice

Manerva
Manerva in reply to Loopylegs

Apologies for misunderstanding about the ropinirole.

If you suffered augmentation due to ropinirole, prampexole may only work for a short while as you realise.

Just to clarify, RLS is NOT due to a lack of dopamine, its often elevated. It's thought to be due to a lack of dopamine receptors. Taking a DA elevates dopamine even more which in turn may cause even less receptors to work, hence making the RLS worse - augmentation.

Loopylegs
Loopylegs in reply to Manerva

I don't know what to take tonight, would you recommend gabapentin? What would be a good starting dose? I don't want to go back on the DA after what you said as I'm probably going to ma one things worse

Manerva
Manerva in reply to Loopylegs

Th usual starting dose is 300mg.It just depends what strength capsules you have. but it can be increased by 100mg a day or 300mg every 3 days.

It may take from 3 to 4 weeks before it starts to work.

Loopylegs
Loopylegs in reply to Manerva

Thanks so much, I'll start 300mg tonight, really appreciate the advice

Loopylegs
Loopylegs in reply to Manerva

Looking for your advice again, I'm started the gabapentin and I'm hopeful that this helps, in the meantime I'm still not sleeping as I'm just crawling all over, as it's been a year since I've taken a DA I'm tempted to take them for a few nights just to help me sleep and until the gabapentin kicks in, is this a bad idea? And is it safe to take gabapentin with a DA? Thanks in advance

Manerva
Manerva in reply to Loopylegs

Firstly apologies.

When I first read your post, I thought you were taking ropinirole, but you later said you had stopped it.

You've also mentioned pramipexole and tramadol.

I'm not clear then if you stopped taking pramipexole regularly. If you did stop, the dose you were taking and when you stopped taking it are significant for your current situation.

You'll never really entirely get over DA withdrawal effects for at least 2 weeks after stopping prampexole altogether. If not longer. If you take the odd dose now and again or for 3 nights, you'll just be prolonging the withdrawals.

It may be that the sleeplessness you're experiencing now is still withdrawals.

Pramipexole isn't the sort of medicine ypu can really take as necessary off and on. e.g. like you would a painkiller if you had a headache.

I'd suggest you never take pramipexole ever again!

If you feel it's safe to take tramadol you could try that. You could also ask your doc for something for sleep temporarily.

Otherwise, it might be better to just stick it out.

Loopylegs
Loopylegs in reply to Manerva

Ok thanks again for the advice!

Joolsg
Joolsg in reply to Loopylegs

Manerva has given you excellent advice.

As he says, start taking the Gabapentin and build up to 900mg at night. The tramadol can also cause augmentation and I suspect it is more likely to do this if you’ve already augmented on pramipexole and Ropinirole.

As Manerva advises, Gabapentin takes 3 weeks to become effective. Avoid magnesium 3 hours before or after Gabapentin as it reduces its effectiveness.

Avoid sedating anti histamines as well.

If you haven’t slept for 3 nights ask for a benzodiazepine ( diazepam or clonazepam) until the Gabapentin becomes fully effective.

Withdrawal symptoms from Ropinirole and pramipexole can last months.

Loopylegs
Loopylegs in reply to Joolsg

Thanks for the advice, do you know if gabapentin causes weight gain?

Joolsg
Joolsg in reply to Loopylegs

It increases appetite so you have to keep an eye on your diet and avoid simple carbohydrates.

Loopylegs
Loopylegs in reply to Joolsg

Thank you, I'll keep an eye on it

sorry too hear your problems , all u say is just like me ...... we need help !

Hidden
Hidden

I'm so sorry to hear this! RLS is the devil incarnate, that's all there is to it. It sucks the life right out of you.

What you're experiencing does sound like augmentation. I'm so sorry!

Does your doctor know that you are on your 3rd night of no sleep due to your symptoms?

Loopylegs
Loopylegs in reply to Hidden

I'm waiting for a call back from my Doctor, they won't see any one at the moment so it's only phone consultations, I'll need to get more gabapentin, thanks for replying

Hidden
Hidden in reply to Loopylegs

You're welcome.😊

I augmented on Pramipexole 5 years ago and it was hell on Earth.

Emotional-wise: I unfortunately remember feeling 100% despaired over my sleepless nights. I saw no light at the end of the tunnel. Now I pray you don't ever get this emotion, but, if you do, I wanted to give you encouragement that you will get through this! Lots of us here have gone through the dreaded A word and are here to give encouragement to those going through it.

We are rooting for you!

I have a list of natural remedies that I can give you. Mind you, augmentation is relentless and a lot of these might not work at all (they didn't for me), but it might make you feel better/safer to have these around. Would you like them?

Loopylegs
Loopylegs in reply to Hidden

Thanks so much, I'd love the list please, how do you manage your rls now?

Hidden
Hidden in reply to Loopylegs

Here you go. Just don't get discouraged if you find that very few (or none) of these works. This list came about only after my augmentation period ended, so I can't provide any insight into how effective they would be while augmenting

-knee high compression stockings. The tightness these give are what sometimes calms my leg movements. Since I have movements in my right arm as well, sleeve compressions come in handy as well. These need to be handwashed so they can maintain their tightness.

-heated massage device

-massaging magnesium oil onto your legs, arms, etc. This can be itchy, which is a sign of the mg being absorbed. This can also dry out the skin.

-if you have a bathtub, a soak in Epsom salts is nice and calming. Since this is just another form of mg it can be itchy. I've read that 12 minutes is the recommended max soak time because of this.

-there is something called Relaxing Leg Cream by Magnilife that feels nice and calming on the legs. This can be ordered from Amazon.

-I have tried a freeze gel in the past, but, while helpful to the legs, this made it hard to sleep due to freezing the rest of my body.

-Lidocaine Pain Liquid. This is supposed to "soften" the nerves.

-if you have a jet sprayer on your showerhead, pounding that up against ever inch of the legs feels so good!! I got this idea from going to my nearby pool's hottub a few years back and absolutely loving what it did for my legs!!

-I have tried kinesio tape ( helps with bloodflow), but unfortunately to limited help.

-magnesium tablets

-foot bath with bubbles. Mixed successes here. While it helps some nights, the vibrations are enough to trigger an attack other nights.

-good old-fashioned HARD hand massage.

-massage ball with rubber spikes

-"pumping" the legs with a stretch band

-my latest thing has been to take a hot shower right before bed, which I've been having lots of success with.

-anaerobic exercise. Building muscle mass builds dopamine (I think that's it). Anyway...any strengthening exercises are good

How I deal with RLS today:

4mg Neupro and 50mg Lyrica (I am on my way off of this -- it makes me too aggressive in my thinking). I am doing well on the Neupro.

I hope at least one of these things help!🙂

Loopylegs
Loopylegs in reply to Hidden

Thank you so much, this is so helpful

Hidden
Hidden in reply to Loopylegs

You are most welcome!🙂

Wow- your post screams Augmentation. You were on pramipexole, upped the dose, switched to Ropinirole, upped the dose.

No other drugs will help if you’re augmenting. You have to get off all DAs very slowly ( at least 3 months) and also off all sedating anti histamines ( they worsen RLS).

What dose of Ropinirole are you now taking? Tramadol is the only opioid that also causes augmentation so you should slowly reduce that as well.

Once off DAs and tramadol you could try Gabapentin or pregabalin again as they work well on their own for RLS.

It would be helpful if you told us all the meds you’re currently taking, the dose and for how long.

Where are you? UK or USA?

Loopylegs
Loopylegs in reply to Joolsg

I'm in ireland, thanks for the reply, I stopped taking DAs a year ago I was on 2mg of ropinerole when I stopped because I knew I had to keep upping my dose, I'm on tramadol 50mg twice a day but the effects don't last it is also suppressing my breathing, I didn't realise tramadol causes augmentation, I have 60mg of codeine but it doesn't work, I have tapentadol 50mg but I'm afraid to take it because of breathing supression too, also pregablin makes me depressed, is gabapentin the same as it?

Joolsg
Joolsg in reply to Loopylegs

Gabapentin is a similar class of drugs but they do have different side effects for different people- you’ll have to try it to see. Tramadol can also cause depression so bear that in mind.

Tapentadol can cause serious respiratory problems. Is your doctor aware of your breathing issues? I think you need a full meds review to discuss tapering off tramadol and slowly increasing Gabapentin, but keep an eye on mental health issues.

Anti depressants also cause RLS so be wary of those.

As Manerva has advised, you should ask for a full blood count and ensure serum ferritin is above 100, preferably 300. Raising serum ferritin resolves RLS for about 50% of sufferers.

Loopylegs
Loopylegs in reply to Joolsg

Thanks so much for your advice I really appreciate it

Pramipexol works best for me and I can sleep. However at some point I would have to increase dosage and augmentation starts. That's when I have to reduce it and take Restex for a while. Pramipexol is not known for causing depressions.

Loopylegs
Loopylegs in reply to silkyreg

What is restex? I've never heard of it? Thanks for replying

Why are you taking antihistamines?

Loopylegs
Loopylegs in reply to silkyreg

Antihistamines always helped me sleepwhen I was younger but I know it makes my rls worse😕

silkyreg
silkyreg in reply to Loopylegs

you take antihistamines just for the sake of better sleep?

Elisse2
Elisse2 in reply to Loopylegs

Are you saying taking antihistamines lets you sleep at night, without making your RLS worse at night..? But they make your RLS worse. I am confused..

Loopylegs
Loopylegs in reply to Elisse2

No I used to use antihistamines to help me sleep as I've always been an insomniac but can't take them now as they make rls worse.

Elisse2
Elisse2 in reply to Loopylegs

Ahhh right , i understand now what you meant. it sounded like you were still taking antihistamines. :)

Personally speaking I use Balneum Cream super plus & it works for me -but I have to say that it wont be for everyone -& anyone who uses it who has never used it could have negative effects & make matters worse but it works for me & Ive had it put on my repeat prescription

Loopylegs
Loopylegs in reply to Sara_2611

What is balneum cream? Thanks for replying

Sara_2611
Sara_2611 in reply to Loopylegs

Well really its for skin conditions , but as I said it works well for me & feel obliged to re iterate that its not for everyone & anyone who hasnt used it before run the risk of negative side effects on their skin - so I cant recommend it

Loopylegs
Loopylegs in reply to Sara_2611

Ok thank you

Sara_2611
Sara_2611 in reply to Loopylegs

You're welcome

A couple of thoughts which may/may not be helpful:

1. I have had RLS for many years which, usually, I have just about managed to keep within manageable levels. I have resisted any form of medication and have tried all the usual things: magnesium, slow release iron, pressure, giving up alcohol, cannabis oil....but none of these have worked. Recently, I thought that I would attempt to give up caffeine (my main fix is in tea of which I drink copious amounts - I already have decaf coffee). So, over the course of about 14 days I gradually reduced my caffeine intake. Strangely, my RLS and particularly my insomnia, just got worse & worse. After about 4 nights of nil sleep I decided I just couldn't cope any longer and returned to the caffeine. Almost immediately my RLS symptoms reduced (but haven't gone completely) and my insomnia improved markedly. I have known for some time that by having a cup of tea in the middle of the night things could improve my RLS, but thought maybe it was just the act of getting up and walking around to make the tea which helped. Obviously not! So......not sure if you have cut out caffeine, but , like me, its just possible that you are one of the RLS sufferers whose symptoms are improved by it., perhaps you could try it again. (It defies logic!)

2. This is a link to a learned article about RLS & insomnia. It may be of interest/use to you: hopkinsmedicine.org/news/me... . It seems as though if you are willing to take medication, Gabapentine may be the drug which helps those who also have insomnia.

Loopylegs
Loopylegs in reply to Bdunwithit

Thank you, I drink tea during the night when I'm awake with rls it actually does help but the symptoms come back after an hr or so, I've heard caffeine can actually help yet doctors say to cut back, like you my symptoms at worse if I cut out caffeine! I love my tea!

Bdunwithit
Bdunwithit in reply to Loopylegs

Something I forgot: I have found that using a stick called 'Head Soothe' on my legs when they start to feel creepy and twitchy really helps in the short term. I have previously read on this forum that some people have found it helpful to bathe their legs with a solution of menthol. This stick contains menthol, so I assume the same process is at work-but its much easier & less messy than a solution. Its definitely worth a try as 'Head Soothe' is as cheap as chips & available in budget Pound Shops (or the Irish equivalent, no doubt). There are also other products which are similar but which have different names.

I feel for you. I've had some horrendous times when I could not sleep nor sit in a chair to read. I've tried huge amounts of magnesium, gluten free and dairy free diet which gave some relief for a while. I dont drink alcohol but do drink coffee. I've even tried the bar of soap under your bed sheet with no success.

My doctor talked to me about Ropinirole but I didn't want to take it. Sometimes in the middle of the night I questioned that! I have had success with codeine but it is not recommended for long term use plus the dose needs increased to keep it effective.

Recently I have been using CBD oil and also have CBD balm. These work really well for me although sometimes I feel a bit tired in the mornings. Not sure if you can get hold of it in Ireland. May be worth a try.

Loopylegs
Loopylegs in reply to kirash

Yes I've tried cbd oil I didn't notice an effect but then I didn't take it for long as I didn't like the taste, perhaps I should try it again!

The first lot I got was in hemp oil but current one is coconut oil. I dont like the taste much but I put the drops under my tongue and wait for it to be absorbed and I don't really taste it at all.

Loopylegs
Loopylegs in reply to kirash

Thank you, what brand do you use? I'll order it and give it a try, the hemp oil is awful but coconut oil wouldn't bother me at all!

kirash
kirash in reply to Loopylegs

The coconut one was made by a guy who makes and sells it here in nz. It cant be bought in a shop here. I see that it is illegal in Ireland so maybe not the same as you had before.

I found having an orgasm releases dopamine in your brain before sleep, allowing me to get relief long enough to fall asleep.Perhaps a sleeping pill along side with this may help? Just a suggestion

I tried that too lol, didn't work unfortunately! Sleeping pills don't help either, I've a double problem as I have had bad bouts of insomnia since I was a child and rls for the past 25 years which is just getting worse as I age.

I’m sorry , I know that torchure your experiencing , it’s debilitating, I hope you find a miracle .

Fingers crossed!

Hi,

I may looks weird what I am about to tell. After some 50 years of Rls/maybe UARS issue, medication and supplements of ALL sorts, I am currently doing well taming my Rls with EFT, baths of self loving energy, and maybe some outcomes From systematic meditation, no medication at ALL.

Wish work for you as well.

MP

I am so sorry you're going through this very special kind of hell. I can tell you what works for me only. I take oxycodone and trazodone (for sleep). When the oxy stops working I take a drug holiday from it and take mirapex and trazodone Only for 2-3 weeks. So far this is working. I hope this helps you. Good luck and god bless.

Thanks for the advice, I'll look into the oxycodone but I doubt my doctor will prescribe it😕

Hidden
Hidden

Hi Loopylegs,

You say that your symptoms have gotten worse. Is there anything different that is going on in your life. Whilst the cause of RLS isn't known, it has been suggested that it is linked to stress and genetic.

If there has been a change in your day to day life, or you have been even more stressed of recent it could be the cause of your rls being worse.

I've worked with a few clients who have rls as one of their symptoms and it often improves once the past trauma or stress have been cleared.

Also to think about what was going on in your life when you did start having rls.

If this makes sense, let me know and I can give you some ideas on what you can do.

Thanks for replying. I have restless leg syndrome since my teens, my grandfather & father had it, all my siblings have it but I have it worst out of them, I'm 47 now and a few years back I was under a great deal of stress and starting drinking heavily, previously iron therapy had helped but it doesn't work now, I've augmented on most meds the doctor prescribed, codeine, tramadol, ropinerole, pramipexole, pregablin didn't agree with me and I'm currently trying to get a prescription for gabapentin as the first time I tried it the dose was too low and I thought out was no good, so I'm going cold turkey at the moment, I've headaches and fatigue, I'm awake all day and night as my body feels like it's crawling, I doze of for half an hour here and there until I can't bear the crawling sensation anymore, I have rls in both arms, legs, shoulders and neck, I have a good diet, I'm not overweight, I walk a lot, take iron & magnesium supplements but lately I'm eating a lot of sugar for energy, I'd love to find a cure as I feel my life is a constant battle to try & sleep, I feel sorry for everyone who suffers this annoying illness

Hidden
Hidden

Hi Loopylegs, it's me again! In recreating my list for someone else, I realize I forgot one.

Try the three exercises halfway down this site:

healthline.com/health/restl...

I can say that, while I didn't have any of my other methods to try out while augmenting, I did have this one. It did help some.

Loopylegs
Loopylegs in reply to Hidden

Thanks so much for all your advice you've been so helpful

Hidden
Hidden in reply to Loopylegs

You're welcome!😊

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