RLS and No Sleep

[Ephemera]

Hi, new to this. My husband has got severe RLS. So bad that since it started in March this year he has only been getting 1 to 2 hours sleep a night. We went for some weeks with no sleep at all. He does not catch it up in the day and has taken many different sleeping pills (none worked). We are in the UK and our GP has no idea how to treat RLS. Eventually saw a neurologist recently and have started Gabapentin. Not much change yet. Any ideas on how I can help him please

[SueJohnson]

When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight. He should have his test in the morning. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice. You have found a good neurologist as he knew enough to prescribe gabapentin. The beginning dose is usually 300 mg gabapentin . It will take 3 weeks to be fully effective. After that he should increase it by 100 mg every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[SueJohnson]

Has he tried ativan or ambien for sleep? Although I usually don't recommend clonazepam because it has a long half life of 40 hours and can cause daytime sleepiness, if nothing else works, he could try that.

[Hidden]

Just a guess here, but I bet something happened in March that provoked first time symptoms. My next guess is an SSRI or Melatonin or Covid happened in March. No one on here can advise you really until we know what medications and other conditions your husband has.

[Ephemera in reply to Hidden]

we think it started because 18 months ago he was put on a high dosage of Levodopa because they thought he had Parkinsons, then they slowly lowered the dose after a rethink and RLS started. Next they gave him Ropinerole and then Clonazepam - nothing worked things just got worse. Every prescribed sleeping pill was tried until eventually referral to Neuro and Gabapentin prescribed.

[SueJohnson in reply to Ephemera]

It sounds like he was suffering from DAWS (dopamine agonist withdrawal symptoms) from reducing the high dosage of Levodopa. Is he still on ropinirole? If they stopped that, he is definitely suffering from DAWS. I haven't really really heard of RLS being caused by taking levodopa but it just may have been a coincidence. In either case when the gabapentin kicks in and he finds a dose that works for him, he should be fine. Unless he is still on ropinirole.

Actually some of the symptoms of Parkinson's are similar to RLS which why they thought he had Parkinson's and he actually had RLS. That would make sense.

[Ephemera in reply to SueJohnson]

Thanks for the reply. No longer on Ropinerole so hopefully Gabapentin will work. GP reluctant to increase it too much.

[SueJohnson in reply to Ephemera]

Great! It will take awhile to work if he has come off ropinirole recently. If eventually he does find he needs to increase it more than the doctor wants to, print out the section on the Mayo Clinic on it and show it to him. And do get his ferritin checked.

[Ephemera in reply to SueJohnson]

Ferritin checked it is 112

[PoorRichard in reply to Ephemera]

My Ferritin was around 112 and I definitely improved with iron supplement (every other day 25mg iron bisglycinate aka Gentle Iron).

[Joolsg in reply to Ephemera]

If you're here in the UK, please consider getting legal advice. The misdiagnosis has now given your husband drug induced RLS.

They will have put him on a VERY high dose of levodopa and presumably a high dose of ropinirole. Stopping either of these drugs triggers RLS and can cause a serious condition called DAWS ( dopamine agonist withdrawal syndrome). These are dangerous, brain chemical altering drugs.

Any reduction of these brain chemical altering drugs should be done very, very slowly to avoid adverse reactions. If he didn't have symptoms of RLS before, the drugs have now caused it!

Is he still taking any ropinirole? If so, reduce by 0.25mg every 2 weeks and insist the doctors prescribe a low dose opioid like codeine or oxycodone to help with any withdrawal symptoms.

I am so sorry this has happened.

You really need to list all the drugs your husband is currently taking and the dose and times and we can then guide you on how to reduce and get back to how he was before the misdiagnosis. It is possible, but he may have to go through a pretty tough withdrawal to get there. That's why you may want to take legal action. Withdrawal can be really difficult and a stay in a rehab clinic , paid for by the doctors who misdiagnosed, would help.

The Mayo guidelines are below but not really relevant to your husband as his RLS seems to have been caused by mistreatment and if you can slowly get off all the drugs he's taking, his RLS should disappear, but he may have a tough few months before he gets back to how he was before his misdiagnosis.

mayoclinicproceedings.org/a...

[Joolsg]

RLS isn't taught at any stage in medical training in the UK and even most neurologists don't have basic knowledge.

It's encouraging that the neurologist started your husband on gabapentin rather than a dopamine agonist like ropinirole or pramipexole. Hopefully, he told you how to take it correctly for RLS. Start with 100mg and increase up to 1200mg taken in 2 split doses of 600mg in the evening 2 hours apart. Average dose is between 1800- 2400mg. There is no need to take it in the day as RLS follows the dopamine cycle and is worse in the evening and night. gabapentin takes 3 weeks to become fully effective and the side effects of dizziness, weight gain, leg swelling etc should settle after 2 or 3 months.

However, as Sue points out, he should have ordered full panel blood tests as raising serum ferritin resolves the majority of cases. And as SalemLake points out, the neurologist should also have investigated why RLS started in March and screened all existing meds as there are many that cause or worsen RLS like anti histamines, anti depressants, statins, beta blockers, PPI meds, melatonin.

Perhaps you could list ALL meds, including OTC, that your husband takes and members will advise if there are any that are problematic.

It's best to learn all you can about RLS as the more you know, the better the treatment you'll receive. start with the Mayo algorithm, written by the world's top RLS experts.

[Ephemera in reply to Joolsg]

Do you have a link to the Mayo algorithm?

[SueJohnson in reply to Ephemera]

Https://mayoclinicproceedings.org/a...

[Goldy700]

All the above good advice and I would like to add that I have personally found vaping cannabis flower prescribed by a cannabis doctor that is knowledgeable about varieties that promote sleep and relaxation a life saver. The level of relaxation it affords my body and mind is wonderful and as an insomniac I am so grateful to have found this wonderfully herb which I only came across in my 70's. What I like about cannabis is the addiction is very low and I certainly do not feel any symptoms the next day, apart from a feeling of relaxation when I wake up. As I only take it for my RLS and sleep which is once a night, I would consider myself a light user. I try to take a few days break and I find hot baths, Chi machine a good substitute for those days. Everyone has their own way of treating this really difficult condition and I get it in my legs, arms and body. I have chosen to not take any drug that causes augmentation or addiction but each to their own. I also practice a non inflammatory diet, avoid sugar and regular exercise. Good luck with your journey.

[Dmca518748]

Gabapentin really helped me. I’ve been on them 4 years. If you take an iron supplement called Spatone that will really help. My iron levels were normal but my doctor says it’s quite common to have normal iron serum levels but have low iron in the brain therefore supplementation is recommended. The other thing that helps is having a lower carb higher protein diet. If I eat carb heavy during the day my RLS is terrible!

The only thing about Gabapentin is that it does have side effects and the withdrawal is pretty bad. I take 900mg (3tablets) right before bed. I’m trying to lower the dose at the minute to 600mg but finding the withdrawal noticeable. Will eventually try and live with 300mg and taking the spatone. The Spatone with vitamin has been a game changer for me. I have much more energy and sleep deeper.

[Hidden in reply to Dmca518748]

Hi DMca. I have a suggestion. When you run out of spatone give ferrous bisglycinate a try - 25mg to 50mg. Has to be taken on an empty stomach and about an hour before bed, at least for me. By doing this the RLS is gone in one hour, for one night. I truly believe this may help you lower the amount of Gabapentin

[SueJohnson in reply to Dmca518748]

You should take 600 mg 1 to 2 hours before bed and then 300 mg 2 hours before that as it isn't well absorbed above 600 mg. You might then find you only need 800 mg. And yes, if you don't withdraw very slowly you will have withdrawal effects. If you withdraw slowly enough you won't have any. If the side effects bother you, you might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

[SueJohnson in reply to Dmca518748]

You say your iron levels were normal. Did you have your ferritin tested, because the usual test for iron does not test for ferritin. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice. Spatone won't raise your ferritin as it only has 5 mg of elemental iron.

[Ephemera]

Thank you for all the replies and advice, I have explained the cause and meds in a reply to SalemLake I will keep an eye on this forum as we really need the help and advice. Merry Xmas everyone

[Hidden]

Greetings, Ephemera. Another option (not crackpot) is non-medical. While going through Dopamine Agonist Withdrawal Syndrome (DAWS) earlier this year, I was wracked with horrific RLS discomfort. No medicine (tramadol; Vicodin; pregabalin; Horizant) brought any semblance of relief. One night, as I lied in a fetal position on my loveseat, I draped my legs over the top of the loveseat's high arm. Immediate relief!

Initially, I thought that the relief was owing to the cut-off in blood circulation to my legs: both were "asleep" when I later awoke. But further research instead suggested that, by elevating one's legs ~45 degrees, temporary relief from RLS may be had due to facilitation of blood flow in the case of circulatory issues. Such very well be the case for me.

To be sure, as much as I fancied my beautiful, Italian-made love-seats (I have two), I preferred the comfort of my own bed. Whereupon, I went to a local shop (shoppe) and purchased a sufficiently dimensioned pillow for me to rest my feet upon each night. The pillow is firm so as not to compress; it is placed under my feet rather than under my calves so as to enhance the angle of elevation.

And, with apologies for any perceived vulgarity, I gain a further modicum of relief following the elevation of my legs, by next using the pillow in a capacity favored by my former wife: as a "crotch pillow." I place between my legs, keeping them parallel, while I sleep on my side.

Hope this helps. Be well now and in the years to come.

[Bieler]

if he is drinking anything with Sucralose in it; that is a huge trigger. I’m addition, the only mesyhat takes away all RLS symptoms (and I’ve has severe RLA since i was young) is Tramadol. My Dr prescribes it to me knowing how much I’ve suffered. It works. It’s a weak painkiller for anything else IMO. Cannot help a bad back pain or TMJ but RLS goes away. I take 50 mg 4x a day. Max dose is 400. If you search this forum you’ll find many others saying it’s a Godsend. I’ve never had to increase my dosage. Actually lowered it myself because 400 made me tired. Please look into this. Best of luck and merry Christmas

[Ephemera in reply to Bieler]

Thank you for this advice but our doctor here in the UK will not prescribe Tramadol. Merry Xmas

[Joolsg in reply to Ephemera]

Can you see a neurologist privately? Professor Matthew Walker at UCL Queen Sq will review & will prescribe low dose opioids. Many UK GPs will prescribe tramadol, Oxycontin and Buprenorphine for RLS, especially if you ask them to read up on the disease and print off research articles.There are NICE guidance articles on Targinact (Oxycontin with Naloxone) but plain Oxycontin or oxycodone are cheaper for the NHS and work just as well.

The Massachussetts Hospital Opioid study confirms low dose opioids are safe and effective for RLS and do not lead to addiction unless there is a history of abuse. Tolerance doesn't seem to happen either, with most patients staying on the same low dose for decades.

massgeneral.org/rls-registry

nice.org.uk/advice/esnm67/c...

[Ephemera]

Its 4.30am and my husband is still pacing around the house. How much longer can we cope with this. The lack of sleep and no enjoyment in life is killing us both. Docs dont seem to take it seriously. I know the gabapentin takes time to work but its hard.

[Joolsg in reply to Ephemera]

You still haven't let us know whether your husband is still on Ropinirole or any anti depressants or anti histamines.

There are solutions but no one will be able to guide you until you list ALL the medications your husband is taking and at what time.

[Summer220]

Medical marijuana is the best solution to sleeping when you have RLS. Hopefully you are in a participating state. The government only wants you taking prescription drugs and the doctors offer zero natural solutions to anything. Big pharma controls the medical industry and they have seemed to have captured 99% of the doctors.