Help desperately needed !

[Muftah36]

I’ve had RLS for years and I’ve tried a myriad of treatments. I have not a full nights sleep in years. Twice a night had been the norm until lately but now for some reason its worsened. I have been taking Gabapentin, Trazadone, and Dilaudid. I had been trying to reduce the amt of Gabapentin due to the awful side effects which render me unable to function. I had reduced from 1800 to 1000 with no marked issues until now. I’m up last thing in the night a, first thing in the morning and 3-4 times in between. I’ve had to increase it unfortunately and now I’m taking 200 mg afternoon, and 1200 at night. But it has not eased. I have again further restricted my diet to salads and fruit with decaf coffee and oatmeal. I don’t know what else I can do but I know I can’t go on like this. I’m hoping someone in this wonderfully helpful group will have some advice.

Thankyou

[m1946]

Just to let you know that I take 3 x 50mg Tramadol and sleep 6 to 8 hours each night. I started with 2 x 50mg capsules and after several years increased it to 3 capsules. I have been advised that 400mg above should be avoided. Hope this helps

[Jenkins1414 in reply to m1946]

Can you tell me what time you take your 3 tablets of tramadol. Thanks

[m1946 in reply to Jenkins1414]

HiI generally take 2 capsules about 8pm and the third about 10pm. As mentioned by others it is important to assess your iron levels. There is quite a lot on this site regarding the information required from a blood test

And remember we are all different!!!!

[Jenkins1414 in reply to m1946]

Thank you. I already take two but don't sleep well so I might try another to see if it helps.

[Webbkaz]

omg I know what you mean, I was diagnosed in 2000 and like you tried so many different drugs, gabapentin, pregabalin, duloxitine. I started on ropinerol in 2008 and got the first 12 months it was great, I took it at night 2 hrs before bed and only woke up once during the night until augmentation set in and I refused to increase the dose. I now suffer with insomnia and don’t sleep during the night, I don’t even try to go to bed at night anymore because I know what’s coming ( night time is my worse time) I tend to get into bed at 6am and sleep till 10am but shattered all day. I have now been referred to sleep clinic and had a full Iron blood test apparently I may need an iron infusion as people with rls need more iron currently Just waiting on the results. I’ve tried the unperfumed soap in the bed did nothing, I’ve tried soaking my feet in Epsom salts for 10 minutes before bedtime, like you nothing works. I’ve tried weighted blanket but got to hot.

How are you during the day? Is it worse for you at night,? Do you get any support? X

[Joolsg in reply to Webbkaz]

Are you off Ropinirole? Iron infusions can reduce augmentation symptoms, but they can't stop them.

[SueJohnson in reply to Webbkaz]

How much pregabalin did you take?

[Webbkaz in reply to SueJohnson]

300mg

[SueJohnson in reply to Webbkaz]

Did you take the pregabalin while you were still on ropinirole?

[Eryl]

Part of your problems are probably the oats and fruit as they contain a large amount of carbohydrate which metabolies into blood sugar which causes inflammation in the body and iflamed nerves are hypersensitive which causes RLS. Tere ae lists on the internet of foods that cause inflammation and lists of foods and vitamins that fight inflammation, I've completely eliminated my RLS by concentrating on reducing my inflammation without taking any medication at all.

[Muftah36 in reply to Eryl]

Thankyou. I’ve put myself on an anti inflammatory diet several years. I have never had a reduction in symptoms, but avoiding gluten,dairy processed foods makes eating a challenge.

[Eryl in reply to Muftah36]

Why did you give up the anti inflammatory diet?

[Muftah36 in reply to Eryl]

I never gave it up completely but I fell off the wagon a few times and I got discouraged when I did not feel like I was getting anywhere, so I’m still following it to a degree. I’ll have to renew my acquainted with it. I’ve looked at it again and I see that oats and a lot of the fruit I’m eating are actually part of it, so I’m doing better than I thought.

[Joolsg]

Did you ever get your iron infusion? Raising serum ferritin above 200ųg/L can dramatically improve the majority of cases.Dr Buchfuhrer and other experts often state that gabapentinoids do not work for many RLS patients who have been taking dopamine agonists.

I wasted 5 years on pregabalin and Oxycontin. My RLS was still very severe.

I'm now RLS free on low dose Buprenorphine.

Methadone and Buprenorphine are highly effective for Refractory RLS.

Will your doctors prescribe them??

[Muftah36 in reply to Joolsg]

I have had an iron infusion . It was over 100 but I can’t remember exactly. It was a couple of years ago now. It was not up to 200, No relief .

[Muftah36 in reply to Joolsg]

No she won’t prescribe those at this point.

[Greenbeltlady]

I had to reduce the Gabapentin due to side effects. I’m very limited as to what I can take due to other medication. A strict diet definitely helps me (low sugar,wheat,no alcohol). I currently take promethazine 50mg to get me off to sleep and it helps.

[Muftah36 in reply to Greenbeltlady]

So what are you taking now for RLS relief?

[SueJohnson]

You might want to try switching to pregabalin. Although it is 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. Take it all in one dose 1 to 2 hours before bedtime. After you are sure you aren't getting the same side effects you can increase it by 25 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." The maximum dose is usually 450 mg but you can take up to 600 mg.

If you need to come off either gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg pregabalin or 100 - 200 mg gabapentin every 2 weeks. If you do so you will have no withdrawal effects.

[Muftah36 in reply to SueJohnson]

I spoke to my doctor today and she is switching me to Pregabalin . I’m hoping the side effects will be less and I’ll get a nights sleep. Thankyou for your advice . I guess there’s no where else to go if the pregabalin doesn’t work for me since she won’t prescribe buprenorpine or Methsdone.

[SueJohnson in reply to Muftah36]

There is another one you can try if pregabalin doesn't work.

[Muftah36 in reply to SueJohnson]

Thankyou for responding to me.

I’d be interested in knowing the other way if I need it.

[SueJohnson in reply to Muftah36]

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

[Muftah36 in reply to SueJohnson]

A question re. Dipyridamole. Would that be added to Pregabalin or would you wean off it before beginning the Dipyridamole.

[McClintok]

I only used it a couple of weeks and had halluciations .

[Muftah36 in reply to McClintok]

I had weakness in my legs in the daytime and shaking in my hands. I felt so sick in the day time with no energy but fatigue.