StillupAGAIN: So tonight I have no meds... - Restless Legs Syn...

Restless Legs Syndrome
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StillupAGAIN

Simo90
Simo90

So tonight I have no meds left and have so far taken 4 30/500 cocodamol and a 7.5 mg zopiclone still awake in pain , one day I fee I won’t even wake up after the concoction of meds I take in shear desperation

50 Replies
oldestnewest
Hidden
Hidden

I'm so sorry to hear this! Can you give me some more info.? Is it that you have no more meds period or are you waiting for a refill?

In the meantime, try these gentle exercises from Healthline:

healthline.com/health/restl...

Also, warm showers help me.

I have lots more advice if you would like; just let me know!🙂

Simo90
Simo90
in reply to Hidden

Waiting for drs to make a decision on my meds as I’m taking 20x 0.088 mg of pramipexole for any relief

Hidden
Hidden
in reply to Simo90

Can you repeat that dosage? I'm assuming you mean 2×0 088mg.

Simo90
Simo90
in reply to Hidden

No I mean 20

Joolsg
Joolsg
in reply to Simo90

Oh my god. Please tell me you haven’t really been taking 20 pramipexole tablets a day?? You will be in a terrible state with augmentation. Have they just stopped giving you these? You will go straight into appalling cold turkey withdrawal and will need to get urgent help.

That is the worst case of negligence I’ve come across on this site.

Lapsedrunner
Lapsedrunner
in reply to Joolsg

Also be very careful with the cocodamol...only 2 every 4hrs as you will otherwise overdose on the paracetamol component, causing irreversible liver damage. Please read all the information carefully, you are on so much medication.

Simo90
Simo90
in reply to Joolsg

I wa told to stop them

Joolsg
Joolsg
in reply to Hidden

Well done Jess for picking up on the 20 pills a day. I assumed it was a typo and that the dose was 2 pills. You spotted the problem straight away.

Hidden
Hidden
in reply to Joolsg

And I assumed I had finally lost it due to exhaustion...🙃

Joolsg
Joolsg
in reply to Hidden

You were the only one to pick up on it. Clearly still sharp!

Hidden
Hidden
in reply to Joolsg

Thanks for that! 😊

Xarasho
Xarasho
in reply to Simo90

Hi,

I can fill you pain and sympathise I shall go through hell if I don't take my drug. However in my 25 years of RLS i learnt to ease your RLS take a hot shower just before bed, and where very thick ski socks.

Take a small vitamin B complex tablet and a multi vitamin + minerals tablet.

2 hours before bed drink a glass of warm water mixed with a tab spoon of Apple cider vinegar ( if you don’t have any stomach and digestive problem,). Must exercise or run every other day. These are the things that used to help me a lot, so try it

Abookwriter2
Abookwriter2
in reply to Hidden

I'd like more advice on physical remedies like warm shower, hot pad (?) or jumping jacks...whatever gets us back to sleep!

Hidden
Hidden
in reply to Abookwriter2

Sure! I'm just about to leave for the evening, but I will save this so I know to come back to it. Cool with that?

Be back in a few hours. Thanks for the "shout out"!

Abookwriter2
Abookwriter2
in reply to Hidden

Yes! I get notifications :) Using fodmap for diet exclusion of sugars, high fodmap foods and only taking .25 ropinole, but back to one or even two 100 mg gabapentin as it's been acting up worse :(

Hidden
Hidden
in reply to Abookwriter2

Oh, I'm sorry to hear that. I'll try to be of help.

Now that I know you're cool, I'll leave the house now.

See you!😊

Hidden
Hidden
in reply to Abookwriter2

Ok, I'm back. It was nice. I was with my husband, then he walked home and I spent the last hour walking my former landlord's dog. It had been several months since she had seen me. Her reaction when I took my mask off was priceless!!

Ok...so, tips. These might benefit Simo90 too.

It is my hope that you can find something helpful in this list:

-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.

-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.

I'm also part of a gym and do their cardio and strength classes. One of the things learned at a conference for RLS was that any exercise you can do to build up the muscles (strength exercises) is helpful due to the muscle mass that is built. More muscle mass, more dopamine can be stored.

I will let you know if I've forgotten anything on my list.

Abookwriter2
Abookwriter2
in reply to Hidden

Thanks, Doggymom1! I have compression socks but will try knee highs. I hadn't tried a hot shower or bath with salts before bed but it sounds like a good time to do it anyhow. I run a couple or three days a week and work out the others but turn it up in evening if an attack occurs. Sometimes I can jump around enough to move through it. Still going to try cibinetide for three months for nerve regrowth, there's NIH studies on this peptide and here's a podcast on it.

facebook.com/SuperHumanRadi...

Hi Dopeamine -00

It sounds like you need to discuss meds with your GP.

Have you tried Gabapentin or pregabalin? Are you taking any anti histamines or anti depressants or cough and cold meds? Have you had a full blood count test?

Simo90
Simo90
in reply to Joolsg

I’ve tryed Ropinerole in the past pramipexole

Drs I’ve last few weeks have asked me to try 400 mg of pregablin to no avail and he’s spoke to a neurologist who now suggests codeine 🤦🏻‍♀️ Il end up taking so many I won’t wake up

Simo90
Simo90
in reply to Joolsg

I am taking 40 mg of citalopram due to panic disorder

Joolsg
Joolsg
in reply to Simo90

Sadly, citalopram will cause RLS or make it a lot worse. If you are suffering panic disorder, could you try adding in a benzodiazepine like diazepam or clonazepam, both of which will help panic attacks and anxiety and will also help the RLS.

I've just seen that you are STILL taking 2 x 0.88 pramipexole. That is double the maximum drug company recommended dose.

You need to read all the links and the pinned post ( at the top of the page) about augmentation. If you came off ropinirole, presumably it was because it stopped working? Did your RLS become more severe and start earlier? If so, you should not have been put on pramipexole. Your doctors should also know that citalopram makes RLS worse. Did they mention this?

I suggest you see a new doctor or ask for a referral to a sleep clinic where they know at least the basics of how to treat RLS.

Pregabalin max dose for RLS is 300mg but you should only take at night and it takes at least 3 weeks to be fully effective. You should give it some time. Also, it won't help your RLS if you're still on pramipexole. You are clearly suffering and that's because your doctor has no idea how to deal with your RLS. Please read every post on here you can find on Augmentation and as I suspect you are in severe Augmentation, you will need to reduce the Pramipexole very, very slowly over months and , at that same time slowly reduce the citalopram and start taking another anti anxiety med in the Benzodiazepine group.

Are you in the UK?

Simo90
Simo90
in reply to Joolsg

Yes UK x

Hidden
Hidden

I want to suggest something else if I may. It got to the point where my doctors were causing me so much headache that I wrote down my dire situation and showed it to them. It helped to incite positive change in how I was treated, that's for sure! Since you deserve to feel so much better than what it sounds like you do here, I would suggest doing something like I suggest to get your doctor's attention (if that is indeed one of your issues here...)

As Joolsg suggests, you should discuss your meds. with your GP (and then with any other doctors you might have).

I am on meds for depression, which makes my case complex. Therefore, I understand the complexities involved in having an illness that is hard to treat alongside RLS.

If you take anything away from this please let it be this: please, please, please tell someone in charge (doctors, emergency, etc) what you write here about not waking up with what you take out of desperation. To me, this a big cry for help.

Please take care of yourself!!🙂

I try to but I just can’t handle it anymore x

I ask for sleep studies but just get told there no point and now he thinks I don’t need meds as he thinks it’s down to emotional stress

Joolsg
Joolsg
in reply to Simo90

Do not let them tell you that crap. Your doctors caused this - through their negligence and failure to warn you about Ropinirole and pramipexole. It is not caused by emotional stress - rather your doctors’ negligence has caused you emotional stress. I’m furious on your behalf.

I suggest you spend a few hours reading all the posts and responses by Manerva. He has included all the links that you will need. Have a look at the main RLS UK website.

Intense RLS caused by augmentation and lack of sleep cause stress, anxiety and depression. DAWS ( dopamine agonist withdrawal Syndrome) is very real and very serious and you therefore need help reducing Pramipexole very slowly ( min 3 months, up to a year).

If you’re near London you should ask for an urgent referral to King’s College Hospital ( Prof Ray Chaudhuri) or to Dr Guy Leschziner at Guy’s Hospital or the Movement Disorder Clinic at Queen’s Square.

I’ve added a link so you can read about Augmentation as discussed by Dr Buchfuhrer. He sees thousands of patients with RLS so is an expert. Most UK neurologists will only see one or two people with RLS and will not have studied it at medical school so will really have little or no knowledge of how to treat it. How disgraceful that your doctors are suggesting it’s caused by your emotional stress!

Any idiot doctor can use a computer and will see that citalopram should NOT be given to RLS patients.

Joolsg
Joolsg
in reply to Joolsg

neurologylive.com/clinical-...

This is the article on Augmentation. Print it off and suggest your idiot GP reads it.

mayoclinic.org/diseases-con...

This also talks about augmentation and the drugs that worsen RLS ( most anti depressants including Citalopram).

Hello Dopeamine-00

Please can you confirm exactly what dose of pramipexole you are now taking.

It appears above that you are taking 20 88ug tablets. If this is true then it is very worrying.

There also seems to be some suggestion that you may have been told to stop taking them suddenly. This would be even more worrying. Do you have a supply?

Can you please respond, we are quite worried about your safety.

Simo90
Simo90
in reply to Manerva

I have 2 pack now do 60 tables they will last 3?nights

Simo90
Simo90
in reply to Simo90

I’ve had zopiclone 7.5 mg and 20 pramipexole and I’m still in pain

Manerva
Manerva
in reply to Simo90

I need to warn you that the RLS maximum recommended daily dose for pramipexole is 0.25mg that is 2. TWO 88ug tablets.

The "official" max dose is 6 SIX 88ug tablets. Nobody should prescribe any more than that for RLS.

20 TWENTY is a dose that is only prescribed for Parkinson's disease and is TEN times over the recommended dose for RLS.

Here's a link to the UK national prescribing guidelines for pramipexole.

bnf.nice.org.uk/drug/pramip...

It's probably because of this massive dose that you are now struggling so much.

Under no circumstances should you stop taking pramipexole suddenly, so I hope you can get more tablets and don't run out in 3 days.

If anybody should suggest you do stop suddenly, it is very dangerous. It is unlikely, but possible you could suffer a condition called neuroleptic malignant syndrome. You would have to be admitted to hospital and it could be fatal.

It's a little more likely that you could suffer DAWS i.e. Dopamine Agonist Withdrawal Syndrome. This is also serious and can cause severe mental health problems.

You WOULD suffer very severe withdrawal effects of extreme RLS symptoms. It would be horrendous.

Do you have a repeat prescription? Can you get more OK?

I also worry about the Zopiclone. Are you taking it every night? How long have you been taking it and does it have any effect?

You mustn't take more than 2 TWO cocodamol tablets at the same time. They should be 4 if not 6 hours apart, no more than 8 a day. The danger is liver failure from the paracetamol.

You now already know about the SSRI Citalopram. You mustn't stop this suddenly either. It would be better for your RLS of you did wean off it.

It's difficult to know what to suggest to you.

Do you have symptoms during the day? Does it affect your arms as well as your legs?

It might sound the wrong way round, but it I believe you need to reduce the pramipexole if nothing else.

It's a dilemma, but you need a doctors help and the doctor who's put you in this situation is doing you more harm than good. It would be best perhaps if you were to see another doctor rather than to confront this doctor. Are there several doctors at your GP surgery?

Really, the GP should have referred you to a neurologist long ago. They could still do that, If you can get a referral to London, as Jools says, that would be great.

I believe your case meets the national criteria for a referral.

See this link

cks.nice.org.uk/restless-le...

Look for the heading "When should I refer - - - "

If your doctor doesn't agree you should be referred then point these criteria out to the doctor. Tell them these are the National Institute for Health and Care Excellence (NICE) guidelines for RLS.

Any UK NHS doctor who fails to take note of these guidelines could potentially be guilty of medical negligence. So please note that the guidelines state you should have been made aware of the complications of taking a dopamine agonist. They also say the dose should have been kept to a mimimum, it wasn't. The dose you have been prescribed exceeds the maximum identified by NICE.

As regards weaning off pramipexole. I'm zfraid its better to do it slowly. If you do it too fast, withdrawal effects will be unbearable, worse than you're experiencing now.

I weaned off less than a third of what you're taking, the equivalent of six 88ug tablets. It took me 10 months.

You may possobly be able to do ot faster than that, but certainly, as Jools says mo less than 3 months.

Since your case is so unusual it's going to be a matter of trial and error. I'd suggest you reduce from.20 tablets down to 10 initially by taking ONE less tablet every TWO weeks. If your symptoms get worse and don't settle again in 2 weeks, you might have to do it slower. If they settle in less than 2 weeks, you can do it faster.

You could then try reducing from 10 to 6 tabkets the same way. This might be the same. When you're on 6 tablets I suggest cutting down by a half a tablet every two weeks. This is because the lower the dose gets, the harder it is to reduce it.

At the same time, you could try and get your doctor to replace the Citalopram.with a benzodiazepine, but you can't take one of these AND Zopiclone. You'd have to wean off the Zopliclone

I think you'll need a lot of support with this and for quite a while. I hope you have family/ friends to support you. It's going to be difficult and I appreciate it's difficult.with lockdown.

You could also ask your doctor for a referral to mental health services. This could help.

This is a lot to take in, I'm sorry. You have reading to do so that you can sort your doctors out.

This forum can help. Keep in touch

Simo90
Simo90
in reply to Manerva

Thanks for your message

Yes I do have symptoms in day depending on how long I’m still also get it in my left arm

16 years I’ve never had a referral and I’m not happy about it at all x

Joolsg
Joolsg
in reply to Simo90

You can’t just go from 20 tablets a day to nothing. I will research urgently tonight to find out how you can deal with this really bad situation. The doctors cannot allow cold turkey from such a criminally high dose of pramipexole.

Simo90
Simo90
in reply to Joolsg

I was told to stop taking them and had to beg for a small script

Manerva
Manerva
in reply to Simo90

Thst's really good information from Jools.

If you can't get a prescription from the doctor, I agree you must go to A&E.

I would also request that you report this doctors conduct. I believe you have come to harm because of this doctors conduct and this could be seen as negligence.

You can report him/her to the British Medical Council by following this link.

gmc-uk.org/concerns

For other people safety, please do this

Manerva has , as usual, given you excellent advice and included great info to put to your GP. You should start to reduce the pramipexole NOW, slowly, as Manerva advises and tell your GP that is what you are now going to do.

If your GP refuses to fill a repeat prescription for more pramipexole then please consider sending an urgent email or making a phone call to the Movement Disorder Clinic at King's College Hospital tomorrow. Also tell the GP you will have no choice but to attend A&E as it is a potentially life threatening matter to be left to go cold turkey. This will cost your surgery at least £160.

The email and phone numbers for King's are:

kch-tr.neurologysecretaries@nhs.net

Phone numbers: 0203 299 8343 or 8336.

Explain that this is urgent- you have severe RLS and have been put on 20 times the maximum dose of Pramipexole for RLS and your GP will not prescribe more which means you will start cold turkey and potentially life threatening withdrawal in days. If you send an email, attach a copy to your GP surgery and to the neurologist (If you know the name of the neurologist your GP spoke to).

Please let us know tomorrow what your GP says.

Jools

Hi Dopeamine - you have my sympathy. Your doses are off the scale as others above have said and so much more than I am taking that I am not sure what advice I can add. All I know is that when all else fails I jump into a “hot as I can bear” Epsom salts bath and I get relief from the RLS very quickly. I hope you get some decent neurological support soon.

My dear Dopeamine-00, I have read a LOT on this site but NEVER have I heard a story like yours and I'm flabbergasted! I really cannot tell you how sorry I am that you're going through this and I'm positive that anyone who suffers from RLS will be TOTALLY in sympathy with you and sending you love! DO NOT GIVE UP. There is a way out of this jungle you're in and with the help of people who actually know what they're doing, and the support of people on this site- who really understand the horrors of constant RL symptoms, you can do it.

Follow the advice you've been given by the wonderful people here, and keep coming back to us to vent and ask for support. you'll find us SO willing to help you in whatever way we can. I am horrified that any doctor could mis-treat you so dramatically and hope you never go back, but find a doctor who knows more about the condition. You're already on the road to finding support by asking on here for help. Hang in there and please keep posting whenever you need support. You'll find that there may be people to respond any time of the night (in UK) as there are sufferers who live in all parts of the world. I'm in Australia. Thinking of you. xxx

Thank you all so much I will be calling my dr today and discussing what’s been said , and wean off the pramipexole will take a while but fingers crossed it helps , currently at work I’m a Carer in the community 🤦🏻‍♀️ I look after people for a living and can’t look after myself , 16 years I’ve dealt with this now and I’ll be demanding a referral, feel so Poorly today though from all the meds x

Joolsg
Joolsg
in reply to Simo90

You are a key worker and doing a wonderful job. Please put everything we’ve said in writing addressed to your GP with a copy by email to the General Medical Council using the link Manerva gave you. It’s essential you do this so your GP realises how serious this is and that he or she is on very shaky ground legally.

As you reduce the pramipexole by the amount Manerva recommended ( very, very slowly) your RLS may become very intense so you may need time off work. For that you may need a doctor’s note at some point and, as yours is so appalling, try to see another doctor at the practice who realises what a serious situation you are in and that the GP who has been treating you is in a very difficult position professionally.

I cannot stress enough that you need to put EVERYTHING in writing so the GP realises they need to help you NOW.

Do write/ring King’s College Hospital anyway and copy your GP surgery.

You need a detailed meds review and plan to get you safely off the Citalopram slowly and onto a benzodiazepine alternative, a written plan to get you safely off Pramipexole and off the zoplicone ( it will interact with the benzo).

You also need that full blood count test to ensure your serum ferritin is above 100, preferably above 300.

I realise your home situation is very difficult if you’re still living with your divorced other half but I hope they can understand your situation ( show them this thread) and hopefully they will support you at this really difficult time.

Keep us updated as you will need this site for medical info- as , sadly, your GP has no knowledge at all about RLS.

Just a thought- how were you diagnosed with RLS? And when? Did your symptoms start suddenly or did something trigger them? Sometimes anti depressants can cause or trigger RLS so if you give us some background we may be able to guide you further.

You may be someone who will eventually be able to stop all RLS meds if the original trigger was low iron or the Citalopram or other anti anxiety meds.

Thinking of you.

Simo90
Simo90
in reply to Joolsg

I was diagnosed when I was 16 during pregnancy me and my partner we arnt devorced babe it stands for something else as per my ferritin last time it was checked was 2016 and was 77.0ng/ml

Joolsg
Joolsg
in reply to Simo90

Sorry for misunderstanding. RLS is common during pregnancy and for some people it never goes away.

Your ferritin is acceptable for someone without RLS but it could possibly help you to raise it above 100. It’s possible to do this by taking ferrous bisglycinate tablets ( gentle iron - available from Amazon or Holland and Barrett) every other night. It can also reduce augmentation symptoms for some people.

Simo90
Simo90
in reply to Joolsg

No need to apologise

HiddenThis reply has been deleted
Joolsg
Joolsg
in reply to Hidden

Your doctor is wrong. RLS is not caused by your mental health. Instead your mental health and stress has been worsened by your GP. Stress can make RLS worse but it’s so clear here that your GP has let you down very, very badly.

Please do let us know where you are in the UK as someone on here may know of a good GP surgery or specialist nearby.

Hidden
Hidden
in reply to Hidden

I hated it when my doctors did that! It infuriated me!!!!

I used to have a team of medical professionals ("Used to" is the operative phrase here). My psychiatrist used the word "psychosomatic" to refer to my RLS. To make matters worse, he seemed to infiltrate my entire team since I started getting psychological advice from everyone on my team.

This is where my earlier reply suggesting you write down your situation comes from. I was Suffering (capital S), being Tortured (capital T) by my RLS symptoms, and to make matters worse I was getting psychological crap from the very people I needed on my side! I had lost control of my medical team and it did not feel good.

My essay consisted of 3 parts: 1. my physical sitauation, 2. my emotional suffering as a direct result of my physical situation and 3. how I was being made to feel due to the direction everyone but me had decided to take. I showed it to the one who was hurting me most and referred to it when talking to the others.

This led to positive change! I cut my team in half and re-gained control of those remaining in my treatment. I feel so much better.

My team had taken it too far; I needed to do something to save my sanity.

I have read most of the comments to your post, i am SOOOOOO sorry you are going through all this and very angry that your doctor has been treating you so badly,. You have been given the best advice possible from Jools and Manerva. Do you have other doctors in your surgery that you could see..? As the one you are seeing is absolutely useless, know nothing about RLS how to treat it.

Simo90
Simo90
in reply to Elisse2

There are other drs but he’s the practice owner I have told him today I will try pregabs again but will reduce my pramipexole slowly not just stop and he has now agreed to refer me to neurologist I said to him I wanted to do a sleep clinic I said give me placebo meds and pramipexole and 1 hr and I’ll show you the fake pills I stated this is not in my head at all

Manerva
Manerva
in reply to Simo90

That seems a positive step.

Just be aware that pregabalin takes 3 - 4 weeks to work and you should start on 75mg only and build up the dose. This will reduce side effects. Really you are on eneough meds already without adding complications from yet another.

The symptoms of RLS, its treatment and the complications of that treatment are well documented. RLS is identifed in the Internationa Classification of Diseases (ICD 11) as a sleep - movement neurological disorder.

Hence even if your doctor is ignorant about RLS, dismissing it as a mental health issue seems to demonstrate inompetence.

I'm sorry to cause any additional stress for you, but I think this important.

The last GP I saw about my RLS said she knew little about it, asked me what augmentation was and promised to read up on it. She asked me to send her some information about ferritin levels. She was a GOOD doctor. She did not ignore the NICE RLS guidelines or ignore NICE guidance on maximum doses. This is the difference.

Your doctor is not merely ignorant, it doesn't appear to me that they are safe and hence not "fit to practice." DRs who are not fit to practice can be struck off the register and can no longer work as a doctor in the UK. his is for the protectiin of the general public nd to uphold the reputation of he profession.

please do as Jools suggests.

Thank you for your work as a care worker. Please also look after yourself.

one decloran and 0.5 ropinirole. it effects. for restless leg sendrome

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