Restless Legs and Sleeping Tablets?

[Springfiel1]

Tried the usual meds, Ropinirole, Amtriphyline, Pregabalin and Gabapentin - all useless. Having to stop one and gradually increase of the other has been tortuous. Hell. My mental health is suffering with the nightly and now early evening frequent, wired, compulsive urge to move. Also affecting my arm. Only remedy is walking. So why don’t we just give up the battle and prescribe sleeping tablets? I’m 67, the symptoms have gone on for 2 years, they are only going to get worse. Why not throw in the towel and let me have a blessed night’s sleep? Any thoughts?

[ChrisColumbus]

You're probably aware that ropinirole is no longer a first line treatment amongst experts for RLS, and that both amitriptyline and citalopram which you've mentioned before can make RLS worse for many.How long did you try gabapentin and pregabalin for? Will your doctor consider a low dose opioid?

[SueJohnson]

Did you decided to wean yourself off the ropinirole as I previously advised. If so, go back up to your previous dose and buy a jewelry scale that measures .01 gram ($11.00 in the US) and then shave off a small amount of your tablet and measure it so you know how much and reduce by this amount every 2 weeks. If this is not the problem, have you stopped taking the Citalopram? If so this may be the problem. You should wean off that one too. As far as a sleeping tablet you could ask your doctor for Zolpidem or zopiclone. There are OTC ones but I haven't found them very effective. Don't take melatonin as it makes RLS worse.

[Joolsg]

You say RLS started 3 years ago when you were 64. What triggered it? Did you start anti depressants then? Anti depressants trigger and worsen RLS. Did you become anaemic, as low blood iron also triggers RLS. It's so frustrating that you were put on Ropinirole, as it has been known for at least 15 years that these drugs worsen RLS dramatically. It's why experts no longer prescribe them.

Sadly, getting off Ropinirole is hell. But the RLS will never lessen in severity unless and until you get off it.Amitriptyline, like other anti depressants, makes RLS 1000 times worse.

I suggest you follow SueJohnson advice and slowly reduce the Ropinirole and try to raise your brain iron.

The gabapentin only helps properly 3 weeks after your last dose of Ropinirole.

You have managed to get off alcohol in the past. Getting off Ropinirole is possible, but experts say it's harder than getting off heroin. UK doctors are completely ignorant of how difficult and hellish the withdrawal is, so please make sure you tell your doctor that the withdrawal is worse than from heroin or crystal meth.

Usually, low dose opioids or medical cannabis are used to settle the withdrawal symptoms ( which are very, very severe, constant RLS everywhere) but in your case, due to addiction issues, they are best avoided.

Sleeping pills do NOT stop RLS. It is torture to be on them during withdrawal because they make you extremely groggy, but RLS still breaks through and wakes you up. Then you fall over as you try to walk it off.

I wish you the strength to get through the withdrawal.

UK doctors should stop prescribing these dangerous drugs. They aren't taught about RLS and are completely unaware of how serious Ropinirole and Pramipexole are. Drug induced worsening of symptoms only happens with dopamine agonists.

If you are near a sleep clinic or addiction clinic, the medical staff have more knowledge of RLS and withdrawal from dopamine agonists, so try to get a referral to a sleep clinic.

[Strike26]

hi - I am a year younger than you and your description fits my experience almost exactly. I started Gabapentin 4 weeks ago and it seemed to work until the last few days, then the RLS returned, although I’m still hoping for the miracle (done this before with all the other meds). My only word of caution about your question on sleeping pills is that they didn’t work for me. I had 2 nights of sleep (and groggy mornings), and then they stopped working- it might be my body was just resistant to them, and they may work for others- which is the “story” of RLS. Try a hundred different things- and hope to find the one that works. Like you, and many others, I’m still looking!!!

[Tom919]

Part of my regimen is melatonin. From what I understand, it's safe, natural, and not addictive. I also "power walk" at a nearby gym with an indoor track...gentle, flat surface. And I include lots of stretching then and at bedtime. I also take 2× 300 gabapentin in the evening. I'm 61 and it's taken me a long time to find a combination that works for me. I understand the very real frustration leading to desperation. Keep trying to learn what works for you.

[SueJohnson in reply to Tom919]

Melatonin makes RLS worse for most. You are lucky.

[67Waterman]

As Jools says below, sleeping pills do NOT stop RLS - it still breaks through and wakes you up, and all the ones I have tried just amplify the RLS sky high.

[Chiby-azul]

I know what difficult is to live with RLS in my case the treatment had been a nightmare I still taking gabapentin not because they are working is because the withdrawal is so horrible that I just was able to lower the dosage in half of what I was taking no more medication I was taking and antidepressant and also Benadryl I am out of them but the problem continued someone said something about sugar and Splenda and since I am not longer taking it my RLS has lower the intensity and duration and someone also recommended to sip a little bit the water that came with pickles or rubbed apple cider vinegar with a little bit water in the legs for me worked sometimes but the sugar and Splenda has been the best advice. I hope this also could help you and good luck and forget about medication most of them work just for a while

[SueJohnson in reply to Chiby-azul]

Benadryl is known to make RLS worse. Claritin (loratadine), zyrtec or allegra are safe for RLS. As far as the withdrawal from gabapentin, if you do it very slowly like 100 mg every couple of weeks, you will have no withdrawal effects. You say it didn't work. How much were you on?

[Chiby-azul in reply to SueJohnson]

I already tried those medication and they gave me side effects like dizziness and sleepiness and I did lower the gabapentin dosage from 3,000mg to 1,500mg per day it took me like 6 months and it was a horrible experience worse than the antidepressant. I have a complicated health issues after having COVID and developing long COVID symptoms and with no help from anyone, my immune system is very low also suffering from digestive problems, fatigue, anxiety and insomnia and more. I developed a lot of allergies or sensitivities to a lot of things external or internal and I know what are my problems and I need to prioritize them if I want to feel better I am in constant search for any dr or institutions who can help deal with this problems

[SueJohnson in reply to Chiby-azul]

I am so sorry! You have really suffered. Have you tried trazodone which can help anxiety and insomnia?

Also have you had your ferritin checked? Improving it to 100 or more helps 60% of those of us with RLS an in some cases even eliminates the RLS. If you haven't 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%. If they are not, post them here and we can give you some advice.

[Chiby-azul in reply to SueJohnson]

I had tried trazodone a while ago and like everything else including any antidepressant the sides effects are bad the only one that doesn’t give me side effects is lorazepam and the reduced the milligrams because now they found out that is a bad medication which I’ve been taking for more than 20 years, mu dr did asked for the ferritin level and this is the results EGFR higher than 90, ferritin 107.0 and iron and TIBC transferring saturation 92. If you understand let me know she just said they were normal right now my RLS are more calm probably because I change my diet completely because of high histamine but I am not sure either and thank you advice to help deal with my current health issues

[SueJohnson in reply to Chiby-azul]

Lorazepam is not a bad drug. If you have been taking it for 20 years and it is helping you I see no reason to come off it. You can become dependent on it and it can become hard to come off it but so what. You say your transferrin saturation is 92. That can't be. That wouldn't be normal for anyone. I suspect you picked up the wrong number.

[Chiby-azul in reply to SueJohnson]

Here in USA like 5 years ago they “discovered “ that lorazepam can cause memory loss and no dr want to prescribe since that time I am in a small dosage because the psychiatrist knows is the only medication I don’t have bad side effects and I had to leave other psychiatrist because he was harassing me because I couldn’t take another medication (I tried and none worked) and started withdrawing the amount of pills so quickly and never thinking about my 20 years taking it without any problem. Now I checked the blood test for iron and ferritin and here it goes Iron level 92, Ferritin 10, Iron binding capacity total 334, UIBC 242, Tranferring saturation 28, if you can explained I will appreciate my dr just told me that was normal and thank you again

[SueJohnson in reply to Chiby-azul]

You want your ferritin to be over 100 and some suggest over 200. What is normal for others is not normal for those of us with RLS. take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you live in the US ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 8 weeks

[Springfiel1]

Thank you to everyone for their comments and support here. Amazing to find a place where acceptance and understanding go hand in hand! Hugely grateful.

So seeing GP tomorrow having had a near melt down titrating yet another med. Pregabalin after a useless attempt with Gabapentin. Only after this misery my doctor will believe all else has failed and l hope will prescribe a micro dose of buprenorphine. Meanwhile to tide me over the weekend an emergency appt with a Doctor at the surgery prescribed 3 tabs of zoplicone which has given me a 24 hour recovery sleep- a night and a day, plus a 4 hr nap of blessed stillness today! Not felt in ages.

So l don’t know what tomorrow will bring. To be honest if l could have coped with starting from scratch another med it might have worked. But l was told to stop completely Ropinirole ( l was one 4 mgs a night) before starting Amtriphyline, -which l didn’t due to the advise on this site and then l began Gabapentin. I successfully reduced my Ropinirole to 1 mg with the Gabapentine but then when l ran out my RLS was back with a vengeance. This could just have been withdrawal. It was unsustainably awful. l carried on with the Gabapentin nonetheless but it didn’t relieve my RLS. Then it was suggested l stop the Gabapentine and start a low dose of Pregabalin, but by then l had lost my mind -at the very limit of my endurance, and in the early hours walked 2 miles to the local hospital. I’m the first to admit A&E is no place for RLS but the walk helped and l was relieved to find a kind, accepting triage nurse at the other end.

As l mentioned before my symptoms have gradually escalated over about a two/three year period and are now severe, affecting my lower limbs, hips and right arm, occurring anytime from about late afternoon onwards and are persistent despite ALL suggested non medical interventions. Having to walk 2/3 times around the houses at night is not uncommon. Foxes are no longer alarmed by my presence!

I think l have been badly mismanaged. I’ve copied the Mayo algorithm and given the link to this site to the surgery. I think it’s really important to have a single GP, one you can trust and not get thrown from pillar to post with this condition. That way is madness.

Wishing you all a good night’s sleep.

[Danni54]

Hi. I really sympathise with you. I have only just seen your post but I wanted to tell you that I sympathise with you so much. My RLS happened every now and then , year's ago but when my Opioid painkiller's were suddenly stopped 6 week's ago, the RLS has been horrific, like yours. No sleep, can't lie down, can't sit down and I have been walking round the house and in the garden, dead heading roses at 3 a.m. ! I spoke to my Dr. today and ranted !Bad enough that I have had no help or support with withdrawal from the Opioid's which they had prescribed when I had lung cancer and the RLS makes our leg's so tight and sore. He is coming to see me tomorrow ! Wow ! I was SO shocked when he asked me where my pain was because I have had multiple health problems and operation's and also have 2 fractured vertebrae and Osteoporosis! He actually prescribed Tramadol today so, hopefully, they will help with the pain and possibly the RLS. Constantly changing medication is torture and I'm so, so sorry that you are going through this too and am sending you a big hug! Please take care. Thank goodness for this forum and the help and support from everybody....please remember that we are all here for you and for each other. All the best,

Danni