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Restless Legs Syndrome

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help sleep and rls

kirks2092 profile image
39 Replies

hello my mum posts on here a lot about her rls. she is currently withdrawing from mirapexin and is going through hell

she has today been prescribed butran patches and has just started the today

she is in a dreadful state hasnt slept for 2 weeks and today has started to loose her memory over things, she is really not with it :(

i am so worried, is there anything i can get her that won’t make her rls worse to help her sleep?

many thanks

kirsty

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kirks2092
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39 Replies
SueJohnson profile image
SueJohnson

What is your mothers username so we can see what she has posted and what we have replied?

kirks2092 profile image
kirks2092 in reply to SueJohnson

its keiralee

kirks2092 profile image
kirks2092 in reply to SueJohnson

just on the way to a hospital appointment, is there anything i can ask them to give her that will make her sleep but won’t make the rls worse?

i rang 111 as shes had some memory issues today which she very uncharacteristic for her x

SueJohnson profile image
SueJohnson in reply to kirks2092

For sleep zopiclone although any are good. I wouldn't advise clonazepam as it has a long half life and could make her sleepy the next day nor melatonin as it makes RLS worse.

The Butrans patch should help her soon. Coming off mirapex like she did is miserable but should calm down soon.

kirks2092 profile image
kirks2092 in reply to SueJohnson

thank you. i’m just worried about this confusion and memory loss. her legs are also swolen and sore from walking

SueJohnson profile image
SueJohnson in reply to kirks2092

DesertOasis is right. Tramadol can cause memory loss. But it should be switched, not just stopped. Ask her doctor or the pharmacist for the equivalent amount.

Dotmowatee profile image
Dotmowatee in reply to SueJohnson

Hi, I think you are in the UK. I am on Targinact which is an opioid prescribed in this country for RLS . I find it hugely effective. Unfortunately Diazepam made my legs worse.

SueJohnson profile image
SueJohnson in reply to Dotmowatee

I am in the US. What country are you in?

Dotmowatee profile image
Dotmowatee in reply to SueJohnson

England. The South west.

DesertOasis profile image
DesertOasis in reply to kirks2092

Maybe think about switching out the Tramadol for Codeine. Make sure your mom is not taking hormone replacement therapy, or an antidepressant, or calcium channel blocker.

kirks2092 profile image
kirks2092 in reply to DesertOasis

can you swap tramadol for codeine ? she takes 2 tramadol can she just stop

DesertOasis profile image
DesertOasis in reply to kirks2092

Yes. Too hard to explain, but Tramadol loses its effectiveness. Codeine will likely be better for her at this point.

DesertOasis profile image
DesertOasis in reply to kirks2092

See this person’s experience healthunlocked.com/rlsuk/po...

kirks2092 profile image
kirks2092 in reply to DesertOasis

thank you

DesertOasis profile image
DesertOasis in reply to kirks2092

Make sure your mom is not on hormones or calcium channel blockers. Those two, along with SSRIs/SNRIs tend to really make the “symptoms” of RLS worse than they have to be. Something drove your mom to DAs 18 years ago and I’m willing to bet it was either HRT or an antidepressant

kirks2092 profile image
kirks2092 in reply to DesertOasis

the hospital have given her codene to take instead of tramadol

they have also given diazepam for sleep, can she take this , could it make rls worse

she is so desperate to sleep

DesertOasis profile image
DesertOasis in reply to kirks2092

No

DesertOasis profile image
DesertOasis in reply to kirks2092

when your mom is asleep please check her other meds and share on here

kirks2092 profile image
kirks2092 in reply to DesertOasis

she can’t sleep unfortunately

shes just got the patch today and takes 2 tramadol

DesertOasis profile image
DesertOasis in reply to kirks2092

What time did they give her the Codeine and diazepam? It’s always difficult to sleep in the hospital.

kirks2092 profile image
kirks2092 in reply to DesertOasis

hi sorry shes not in hospital we coming home

shes not had the codeine yet but gonna take it when she gets home

she hasn’t taken the diazepam yet as scared it will make her legs worse

DesertOasis profile image
DesertOasis in reply to kirks2092

Perfect! The codeine (hopefully at least 60mg) should be switched out for the Tramadol. No more Tramadol for her, in my opinion. She will sleep tonight. Prone position helps relieve a little of the RLS when going to bed. Take the meds, turn on the TV and I have a feeling your mom will nod off and sleep the night.

funnyfennel profile image
funnyfennel in reply to kirks2092

I have found diazepam relaxes me so would take it if necessary in the early evening to prepare myself to sleep and the other medication. I am still on pramipraxol but I also take oxycodone which doesn't give me a whole night's sleep but it's better than it used to be without

DesertOasis profile image
DesertOasis in reply to kirks2092

No, neither will make her RLS worse

DesertOasis profile image
DesertOasis in reply to kirks2092

She’s on Butrans now, that should help. The faster the tramadol leaves her system the better. I do not think the memory loss is from Tramadol, but rather lack of sleep and anxiety.

To make a long story, short, Tramadol is a combination opiate (very similar to Codeine) combined with a small amount of an antidepressant called an SNRI. The opiate part relieves the symptoms of RLS while the SNRI part will make the “symptoms” somewhat worse, but it’s ok because the opiate part is able to overcome it. Once a person becomes tolerant to the opiate part, they’re left with the SNRI part, which makes their legs go crazy. SNRIs do NOT down-regulate the dopamine receptors the way DAs do. Just the opposite, SNRIs up-regulate them. It’s just too painful a process. I truly believe once the Tramadol/SNRI is out of your mother’s system and the Butrans kicks in she will feel a lot better.

In the post I gave you, RestlessInLondon went from DAs to Tramadol, to Tramadol not working, to Codeine and sleeping well. The Tramadol took a day or two to leave her system.

kirks2092 profile image
kirks2092 in reply to SueJohnson

thank you i wanted to update you all that mum slept a few hours last night, we are all so relieved. shes not feeling too great today but at least she slept.

thank you so much to everyone on here for all your help we really appreciate it :)

SueJohnson profile image
SueJohnson in reply to kirks2092

That's good. Hope it continues.

funnyfennel profile image
funnyfennel in reply to kirks2092

I think we all feel so sympathetic towards your mum and even you that the good vibrations will reach her.

Joolsg profile image
Joolsg

Hopefully the butrans patch will start to work tonight.She can then continue to reduce Mirapex. Withdrawal is hell and the memory loss will be due to severe sleep deprivation. Perfectly normal when withdrawing from Mirapex.

What dose patch have they given?

kirks2092 profile image
kirks2092 in reply to Joolsg

hi shes been off mirapexin 3 weeks now so has had nothing only tramadol

we put the butrans patch on this afternoon but so far its not done anything

we are going to swap the tramadol for codeine just incase it will make it worse

the hospital have given us diazapam tonight but she is scared to take incase it makes it worse

she just needs to sleep but can’t sleep until the rls goes, her feet and ankles are so swolen

SueJohnson profile image
SueJohnson in reply to kirks2092

Diazepam won't make her RLS worse. Another name for it is Valium. It will help her anxiety.

DesertOasis profile image
DesertOasis in reply to kirks2092

Ask mom what other meds she’s on. I’m telling you, there are so many that will make the RLS worse and keep her awake. So we need to know what they are.

Joolsg profile image
Joolsg in reply to kirks2092

Yes, the patch takes a few days to kick in. Buprenorphine pills are better as they start to work instantly.Hopefully they will have started her on the 10mcg pill, because the lower 5mcg pill won't be strong enough to cover the severe Mirapex withdrawals, which can last weeks/months.

The diazepam definitely won't make it worse.

Buprenorphine can cause severe nausea for 7 to 10 days. I used cannabis to help stop it.

The butrans patch should start to help the severe RLS in about 48 hours. If it doesn't, contact the prescribing doctor and ask for sub lingual pills. Most people on here do very well on between 0.4 and 0.8mg.

Withdrawal is so awful. Doctors do NOT understand. If they could see it, they would STOP prescribing Mirapex.

kirks2092 profile image
kirks2092 in reply to Joolsg

hi joolsg

they have given her 5mg patches, the doctor said he would write to her gp suggesting she may need 10mg in future. at the minute the patch is not helping, she is tempted to put another patch on so will be 10mg, what do you think?

LotteM profile image
LotteM in reply to kirks2092

The patch takes at least 8-12h to start working and reaches full strength (at first time use) after 2-3 days. So do wait at least one full day but preferably two to evaluate effectiveness of that first patch. And yes, then add a second if it still doesn’t work. However difficult dor her, do give it time.

Building up doses a bit slowly may also help to reduce possible side effects. I hope the buprenorphine will kick in soon.

When it is time after 7d to replace the patch, I always leave the old one on the one extra day. This way I never experience a dip after the change.

kirks2092 profile image
kirks2092 in reply to LotteM

thank you for this

SueJohnson profile image
SueJohnson in reply to kirks2092

And the patch often doesn't last the full 7 days and needs to be replaced after around 5 days, so be aware of that.

Bantamdyno profile image
Bantamdyno in reply to kirks2092

Hi, have you tried Boots tubular support bandages at night not during the day, I find it might get a sensation but not as bad as rls so you can get to sleep🤔

funnyfennel profile image
funnyfennel

As well as my meds I do use a magnesium spray on my lower legs if they're really playing up at night and it seems quite effective sometimes. The sensitive one isn't so sticky and does not sting it's in a spray so you don't have to put much on and just rub one leg against the other. It helps

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