RLS

[Ischmael]

Really bad night. Up til 4am . Did everything I needed to , roprinolol, magnesium, melatonin, also took extra roprinolol, did not work. Had to stand most of night. Even standing I can feel it. HELP!!

[Heatherlss]

I'm sorry to hear that ! :(Melatonin is known to make RLS worse.

[Ischmael in reply to Heatherlss]

I’m talking with my Dr tomorrow. Thanks for the info.

[Hidden]

If you've been taking ropinirole for some time, that may be the the most likely cause of your problem.

You are probably suffering from dopaminergic augmentation, a ver common major complication of dopamine agonists such as ropinirole.

What dose are you taking and how long have you been taking it?

The worst thing you could do is take extra ropinirole. That will probably make things worse, not better.

Please be aware that most doctors have never heard of augmentation.

I suggest you read this first

healthunlocked.com/rlsuk/po......

[Ischmael in reply to Hidden]

Thanks so much!! It sounds just like me. I’ve been on roprinolol 0.5mg for 10 years , now on 1mg for 1 year. I don’t always experience symptoms of RLS but when I do they are severe like last night- horrible. I am having more frequent bouts for sure. I have a video chat with my Dr. tomorrow. What should I be taking if it’s not roprinolol?

[Hidden in reply to Ischmael]

As you've been taking ropinirole for 10 years and have increased the dose at least once then you will probably be suffering dopaminergic augmentation which is where, instead of relieving your RLS it will make it worse.

There are 3 things you can do to remedy this.

1). Have a blood test for ferritin. If it's less than 75 then start taking an oral iron supplement.

You could incidentally have blood tests for vitamin B12 and vitamin D deficiency and if you are deficient, take supplements.

The ferritin is most important.

2). If you're taking any other medications check that they aren't ones known to make RLS worse.

3). SLOWLY reduce the dose of ropinirole over about 3 months and replace it with an alternative.

Be aware that each time you reduce the dose you may have withdrawal effects which can be nasty.

You can start the alternative before stopping the ropinirole.

The first recommended alternative is an alpha 2 felta ligand, pregabalin or gabapentin.

If you live in the UK I can give you a link to some authoritative information supporting what I've written. Unfortunately it's not accessible from other countries.

[Ischmael in reply to Hidden]

Thank you so much! I will explain this to my Dr.

[Bumble34 in reply to Hidden]

Augmentation obviously a suspect, but puzzling surely if its not every night, can it really be intermittent?

[Hidden in reply to Bumble34]

Hi Bumble, sorry I don'tunderstand what you have written.

Who wrote somethings not every night?

Intermittent means now and again hence not every night.

Which post are you replying to?

[Bumble34 in reply to Hidden]

Hello Manerva, well have I misunderstood then, but does`nt Ischmael above write " I don`t always experience the symptoms of RLS " which I took to mean not troubling every night.

[Hidden in reply to Bumble34]

Ah yes, thank you, so it does.

Apologies.

[Munroist]

I don’t know if it helps but I find you have to move to get relief, just standing doesn’t help for me. I normally empty the dishwasher and use the stairs a couple of time which usually gives enough relief to get back to sleep.

[MFNS]

I took Ropinerole for several years 4 mg daily. My symptoms began in late morning and continued through the day. This went on the last few years. I never went anywhere without my pills. I have been off this drug just 4 months and now on methadone.I tried two other medications that did not work. .Like you I was on my feet constantly. I could not sit down more than a few minutes and would stand up watching TV at night til bedtime

when the torture began. Hot baths were the only relief I could get and some times would dose off for small periods of time. It was hell and a wonder I did not drown.. I knew nothing about augmentation and just stopped taking it cold turkey. Two trips to hospital emergency rooms,intense physical pain, and the embarrassment of dealing with ignorant medical personnel that treated me like a crazy woman as I begged for relief. i began thinking of ways to end my life. I think this is a dangerous drug and should not be used.

[Ischmael in reply to MFNS]

I’m on it 2mg, and doing better but wonder for how long? Are you on anything now?

[MFNS in reply to Ischmael]

Are you on Ropinerole ? I took it for many years and it worked. Never left home without pills....I was taking up to 4 mg daily and gradually it no longer worked. 'I just tossed the pills in frustration. Look f

[Tahirah1987 in reply to MFNS]

I feel exactly the same today I want to end my life

[MFNS in reply to Tahirah1987]

Hello, you can get through this. I do know how you feel and I am here to chat with you. I dont know what medication you are on. Can you tell me ? Please know you can get relief once you find a medication that will work. Hopefully you did not throw away your medicine like I did. I knew nothing about augmentation. Today I do. What helped me the most was contacting the RLS Foundation. They reached out to me by phone.....sent me lots of publications to read and UNDERSTOOD ! The ignorance surrounding our disease is very hurtful. No one knows what its like until they experience it. PLEASE ....dont give up ....get motivated ! There is help. I finally found a physician trained at Mayo Clinic.....she prescribed Methadone alone with iron, magnesium, B12, etc....and is willing to work with me. I am on a very low dose and it works. I hope to hear back from you.... Jan

[Tahirah1987 in reply to MFNS]

Thank you so much jan for so much hope and ur message. I have really given up. Iv had this rls for 4/5 years now, I’m 33 also have lupus. I’m taking ropinirol 3.5mg. Started with 0.25mg over a year ago. I have very low iron so I have iron infusions every month from hospital too. It’s been 2 days now my whole body is restless, I’m struggling to sleep and when I fall sleep I wake up and I’m so restless even my arms and hands are. I can’t take it no more I’m drained. No one around me understand either. These 2 days has been hell for me and 2 nights so I had to find help online to talk to other ppl who are suffering and Mayb can help me. Tahirah

[MFNS in reply to Tahirah1987]

Call the RLS Foundation ....there is Doctor who is an expert they recommend who will do phone consultations. The problem may be augmentation. I just happened to find a wonderful Doctor in Arizona who I am seeing. I went off

ropinerole cold turkey and it took about 12 days....after that I took some pain medication a friend gave me for a week of so and begin a regimen of magnesium. calcium , b vitamins etc....then tried a few other medications my primary doctor prescribed ( did not work) until I was able to see an expert.

Now I am pretty much symptom free. Dont give up. Get that consultation

Very few Doctors are competent to treat ..

[Tahirah1987 in reply to MFNS]

Really happy to know your feeling better hun. How do I get in touch with them?

[Stdorn]

I avoid melatonin like the plague. It was one of the first otc things I tried when my rls progressed to giving me insomnia. After taking the recomended dosage I my rls became many times worse than it have ever been moving from my legs only to my legs, back, shoulders, and arms. It left me wiggling my whole body for many hours instill it finely wore off. I would say if a doctor recomended it for rls he isnt very well informed on the subject. I would find a different doctor.