RLS medication options: Hi all. I’ve... - Restless Legs Syn...

Restless Legs Syndrome

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RLS medication options

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Hi all. I’ve had RLS since I was ~15 and I believe that it is the root cause of my depression due to the sleep disruption and the inability to ever feel totally relaxed. I’ve been given multiple medications for RLS/sleep including zopiclone, amitryptiline, quinine (!?), and most recently gabapentin.

I started treatment with sertraline for my depression recently which has made my RLS a lot worse, and I now take 900 mg gabapentin for the RLS on top of my sertraline. It doesn’t really work very well though.

I’m at the end of my tether with the sleep loss and depression and I really want to find something that works for me.

Are there any medications/treatments that people have found that help with RLS? I’d like to try as many things as possible until I find what works

Thanks in advance!

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I'm sorry to hear of your situation.

You may well be right that your RLS is causing you depression. RLS and depression are associated.

Antidperessants aren't appropriate for RLS. this is both because they don't make RLS any better and they actually make it worse.

Amitriptyline is not a RLS medicine, it's an antidperessant and it makes RLS worse, hence may just deepen depression.

Sertraline also makes RLS worse.

If it really is the RLS causing your depression then it would be better to get effective medicine for it and to stop taking medicines that make it worse.

Zopiclone will have little effect of RLS sym;ptyoms, it is a sedative.

Quinine used to be used for RLS long ago, but it is was probably used because Night Cramps were confused with RLS.

The two first line treatments now prescribed for RLS which are more or less equally effective are either an alpha 2 delta ligand (A2D) or a Dopamine Agonist (DA).

Gabapentin is an A2D and is a good first choice for RLS as DAs have a greater risk of major complications.

There are a couple of things ablout gabapentin ablout which you may not be aware.

One is that it can take several weeks for it to work. So if you;ve only recently started it, you need to give it a chance.

Two is that it may not be very effective while you're still taking an antidpressant.

Three is that it can make depression worse in some poeplel, BUT it can help promote sleep.

These drugs only relive the symptoms of RLS, they will not cure it or even treat the causes.

The first thing that your doctor should have considered is that iron deficiency is a major causative factor in RLS. Correcting any iron deficiency can treat symptoms.

Hence blood tests for serum iron, ferritin and transferrin would be a good idea. A transferrin level of less than 20% indicates a possible iron deficiency.

Ferritin is considered "OK" if it's more than 12, but for somebody with RLS this is way too low and ideally it should be above 200. The rule is, if it's less than 75 you may find taking an oral iron supplment helpful.

Here's a link to some information about RLS and iron.

sciencedirect.com/science/a...

The other thing a doctor should do is to look if there are any mediations you're taking that may be making your RLS worse. Antidepressants and sedating antihistamines are possibly the worst but there are many others as well.

Here is a link to the UK National guidance publlshed for GPs and other primary health professionals on how to manage RLS. This is one page but it is part of quite a large site with a lot lof information. If your GP disagrees with anything I've written so far you can refer them to this link as well as the previous one.,

cks.nice.org.uk/topics/rest...

Lastly RLS is also made worse by quite a few other things. The connection is often inflammation.

It's mainly foods then that can cause problems.

Alcohol and anything with sugar in it can trigger symptoms.

Other people find various diets can help relieve symptoms. This varies between people becasue you may have some sensitivity to something.

There are several ways you can explore this.

1) Keep a food diary, some food elements can trigger symptoms within a day or two.

2) Sensitivity testing e.g. for gluten or lactose.

3) TRY a diet, this could take some time to have any effect but one of the following may help, low carbohydrate, gluten free, lactose free, low oxalate or anti-inflammatory.

4) Cut out all things you think may be an issue then reintroduce them one by one.

There are a few other things that may help, this includes vitamin B12, vitamin D, magnesium and celery juice (tablets). You may find other suggestions in other posts in the forum.

Medicines aren't the sole answer.

It would be better if you could decide what your priority is, RLS and bad sleep or depression. Sorry but what fits one, doesn't fit the other.

I hope you've found this of some use.

Madlegs1 profile image
Madlegs1 in reply to

If you are going to take magnesium, then take it at least 2 hrs apart from the gabapentin.Brilliant answer from Manerva.

Johncjnr profile image
Johncjnr in reply to

This is a great and helpful response, I have been suffering since I was a child and to add to the RLS i suffer quite badly with tinnitus, sleep deprivation has kept me at my wits end for years and everytime I read another report about how bad sleep deprivation is to your mind and body it just mad me feel depressed it compressed my anxiety about not being able to get a good nights sleep! My doctors had given me a few different antidepressants but again that just gave me more anxiety I would keep asking myself why the hell am I being given antidepressants I’m not going mad there’s nothing wrong with my brain I just want a good nights sleep! I decided to stop taking the clonezapam which I only ever took occasionally anyway because it stops working after a few days and never really knocked me out for more than an hour or two I’m now fasting I started the 16-8 and after a month I’m doing a low carb version warrior type diet 4 hours eating 20 hours fasting I’ve lost 14 kilos in 7 weeks and I’ve stopped drinking my RLS so much better the weight loss I think has helped hugely and the diet is anti inflammatory to sum up I’m sleeping slightly better which is more than I have for some time my mood has improved incredibly and I feel amazing, I do think this will have to be a major life change for me permanently, I’m enjoying being more active and the weight loss strategy I’ll continue with for at least another 10 kilos tinnitus will still keep me awake however I’m not suffering with the anxiety I used too about pills or sleep, I’ve started taking an iron supplement doing as many natural things I can to try and resolve it myself this has helped and I also believe helps with my mental health, the diet low carb intermittent fasting I believe also helps because the science now points to Autography (cell regeneration) and the also promotes an anti inflammatory response so I’m focusing on that 100%

in reply to Johncjnr

It's great that you're actively being proactive in trying to manage your RLS rather than just accept (inappropriate) medications.

Best wishes.

Johncjnr profile image
Johncjnr in reply to

Thank you

fishinphil1946 profile image
fishinphil1946 in reply to Johncjnr

Could you please provide additional detail on the weight loss diet? I gained 50 lbs and am slowly reducing pramipexole. I don't understand the 4 hours eating. I will try to eliminate alcohol and sweets. I will need to check on my ferritin number; the GP may not be aware of the newest thresh hold for RLS.

Johncjnr profile image
Johncjnr in reply to fishinphil1946

Hi Yes, I’m combing IF with some calorie control with amazing weight loss in a short period of 7 weeks I’ve lost 14 kilos, you have to be strict, I follow Dr Jason Fung and also Dr Michael Mosley who is the author of the 5-2 diet, I’ve followed both these guys religiously this past several weeks for both fact and inspiration the science and data behind the diet is for me perfect, and I know many other people that are really finding intermittent fasting really easy to follow with good results, Autography is key for me as cell regeneration and the potential it has with improving your overall health in so many area’s really excites me! Also I’am taking the usual multivitamin’s and an iron supplement,

fishinphil1946 profile image
fishinphil1946 in reply to Johncjnr

Thanks! I will look up the technique. I used South Beach about 20 years ago and had very good results. It is a good recipe "pardon the pun" for life. In the US this means staying away from the middle of the grocery store. However, I need to overcome the compulsiveness and insomnia of pramipexole with strong will power and fasting might get me started. I found a good article on the 5:2 dietverywellfit.com/5-2-diet-pr...

by Amanda Capritto, ACE-CPT, INHC

Bairnie profile image
Bairnie in reply to Johncjnr

I’ve been on one (small) meal a day, no alcohol, no carbs ( sugar is a big no-no and I’m very gluten intolerant) and I’m losing weight but very slowly. About 1lb a week. No alcohol is definitely helping wit RLS. I’m going to keep going but it’s joyless.

Johncjnr profile image
Johncjnr in reply to Bairnie

Hi Bairnie, I’m fasting too amd I’m losing weight too, I’ve still got at least 10 kilos (22lb)to lose and I’m hoping it will help when I get closer to my ideal weight

Chunkystubbs profile image
Chunkystubbs in reply to

Hi I'm new to this forum, asking on behalf of my partner who has suffered from RLS for the past 10 years. It has got much worse in the last year and he was prescribed miraprexin by GP. Increased the dose very rapidly initially to find a level that worked,but 10 months on I'm worried he is augmenting. We are in rural Ireland and really need information to give to GP. There is realistically no hope of referral to neurologist as on a medical card so this fantastic site is so helpful. The CKS link you posted is only available to people in the UK, do you know of any other way of accessing it or sharing it? Thanks for all your expertise it is so helpful.

DicCarlson profile image
DicCarlson in reply to Chunkystubbs

You might try starting a new thread with your questions - and it would get more specific responses. This was posted in response to another question.

in reply to Chunkystubbs

Hello, I'm afraid that personally I only know of one way of accessing the information directly. That is to use a VPN and set your virtual IPS to a UK URL.

There are a couple of Irish members of the forum who may know another way.

Unfortunately, there is no way of downloading any of the content. However, it can be printed out if you know anybody in the North.

What you say about your partner does sound ominous. Pramipexole is the worst for augmentation and it sounds like he may be on quite a dose.

The signs of augmentation are

Symptoms become more intense.

They spread from the legs to other parts of the body

They happen earlier in the day.

They happen more quickly when sitting or lying down.

Here's what the NICE CKS says about augmentation

"It is a long-term consequence of treatment that may develop months or years after treatment is initiated.

Augmentation is characterized by worsening symptoms of RLS, in particular their earlier onset in the day, increased intensity, or spread to the arms or trunk.

Augmentation should be considered when any:

Maintained increase in symptom severity develops despite appropriate treatment.

Maintained increase in symptom severity develops following a dose increase, particularly if a dose reduction leads to an improvement in symptoms.

Earlier onset of symptoms that develop in the afternoon/evening.

Spreading of symptoms to previously unaffected body parts.

Shorter latency to symptom onset during the day when at rest.

Rates of augmentation appear to be greater the higher the dose of any given drug, and the longer the duration of treatment. "

And treatment

"If apparent augmentation develops:

Measure the person's serum ferritin. If the concentration is less than 50 to 75 micrograms/mL, investigate potential causes of iron deficiency anaemia and if appropriate offer oral iron supplements.

Ask the person about any lifestyle factors (such as sleep deprivation, alcohol use, decreased mobility) or recent medicine use (such as dopamine antagonists, antihistamines, or antidepressants), in addition to any recent opioid discontinuation or blood loss that could cause symptoms mimicking augmentation.

If there are no apparent exacerbating factors, and symptoms are severe, stop the causative drug. An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand,"

Chunkystubbs profile image
Chunkystubbs in reply to

Thank you for taking the time to respond with so much information. I will try to get family in the UK to print out the info for us. Good luck to you all.

in reply to

In the USA they did autopsy on a male RSL patient who had committed suicid although his blood had above normal iron parts of his brain was severely low i take iron every day It dos take a while for iron to get Ito your system so be patient

Reb0013 profile image
Reb0013 in reply to

Your reply is so spot on and thorough! Very well summed up!

Jphickory profile image
Jphickory

Hang in there. Keep trying new things (diet, exercise, supplements and/or meds) and I think eventually you will find some relief. I’m 57 and have had RLS since I was in my teens. I have gone through long periods of relentless RLS that got me very down and even clinically depressed in 2010. In recent years I have gone through several long periods (months) where I have had no RLS. I haven’t been able to identify why these welcomed breaks from RLS have occurred. I say this to encourage you.... never give up hope and keep trying new things. I truly believe eventually you will find some relief.

Andyroo66 profile image
Andyroo66

I found Gabapentin to worsen depression so in my case it was best avoided, I CT'd off 300 mg which was a big mistake but have largely recovered. Most antidepressants can make RLS worse, get your ferritin levels checked and try a clean diet avoid sugar, gluten, processed foods, alcohol etc. Selenium supplements may help as it is thought it can help with the dopaminergic pathway. Not a quick fix need to supplement for a year or so and even then it depends on the individual. Hope this helps

9642birss profile image
9642birss

Hey...Sounds sort of like my problem. When my doctor wanted me to taper off/quit my long time use of Xanax (small dose .25mg up to three times daily as needed) he first prescribed sertraline. It was terrible! Made my RLS much worse. Quit that and went to gabapentin. Had side effects like swollen eyes, muscle aches. Now what? Different things work for different people of course; but what IS WORKING for me is an iron supplement 28mg daily and a magnesium supplement 500 mg daily plus an OTC that I found on the internet: "Rested Legs" (RestedLegs.com) , two capsules prior to bedtime. I'm not a spokesman for any drug company - But this one works for me. I am just finishing up my first months supply and am getting ready to order more. Not a 100% cure but at least I can sleep now. You might want to try it.

Aaanon profile image
Aaanon

All meds and stress make rls worse. Lack of sleep will have impact on your physical and mental health. Pregablin and cannabis work. Do your own research on pregablin. I find it works but there are side effects and risk of augmentation. I also take prozac but the lowest dose as that also makes rls worse.Good luck

GcrewDirector profile image
GcrewDirector

This sounds to good to be true, but I cured my RLS with Magnesium, Potassium, and Sea Salt. Mg and K had worked for a while, however became less effective over time. My functional medicine doc had me add 1/4 tsp of Real sea salt into my water throughout the day. It worked!

kicker2 profile image
kicker2 in reply to GcrewDirector

You use 1/4 tsp sea salt each day? (Not 1/4 tsp several times per day.) How much potassium?

GcrewDirector profile image
GcrewDirector in reply to kicker2

400 mg potassium every day; 1/4 tsp sea salt in each glass of water I drink throughout the day. I try to drink 1/2 my body weight (in ounces) of water each day.

kicker2 profile image
kicker2 in reply to GcrewDirector

Thank you for the extra details. Can you please update us on this "remedy" over time? I honestly pray this works for you and am curious if this helps you long term.

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