Desperate for help

[rls-hostage]

I’m suffering really badly at the moment. I have almost constant rls symptoms 24 hours a day, in both my legs and arms. I am currently taking ropinorole on a high dosage. I don’t know where to go from here. Desperate for some advice, please can you help me.

[Hidden]

You need to do two things ASAP - you need to read here about augmentation and then get to your Dr and get your drugs changed.

AUGMENTATION:

healthunlocked.com/rlsuk/po....

It appears are experiencing augmentation from the high dose of drug and if so you MUST STOP the ropinorole and STOP SLOWLY moving on to another drug like Lyrica, Codeine, Tramadol, etc.

Pleases also look into taking gentle iron, (evening on empty stomach) and check that there are no other drugs exacerbating things - antihistamines and antidepressants are the two main culprits seen here.

Gentle Iron:

healthunlocked.com/search/g...

Hope this helps, take care.

[Hidden in reply to Hidden]

In addition, if you can, you might try some Clonazepam. it has been my emergency if all else fails medicine for some years. I take 1mg for a week, it usually calms things down.

[beady3 in reply to Hidden]

I think we shoul be very careful telling people to take drugs , clonazepam put me in A & E

[Hidden in reply to beady3]

Yes sorry, you're quite right. I should have added go see a doctor and get it prescribed and take it under their supervision. It is recognised as a short term treatment for RLS and it works immediately.

I'm not sure why you ended up in A&E, how much did you take and what happened.

rls hostage sounds desperate and weaning off ropinorole takes time.

[beady3 in reply to Hidden]

Hello I don’t know either all I know is I took them as told and they sent me queer that is queere than I am

[Hidden in reply to beady3]

I don't know if it was something you did or not. but you shouldn't take more than one tablet at a time, and you shouldn't take it more than one a day. It just might not suit you.

[Gazleebryan in reply to Hidden]

Tramodol works within 30 - 45 mins. I had RLS all over my body 24/7 and this worked for me. Also Lycia works but it can take a few weeks, also I could only take a small dose as it give my vertigo. ropinorole is useless, I am taking to come off tramodol and currently taking pramipexole, I still get RLS a bit, it is cope-able and I can sleep, only started two weeks a and coming off tramodol makes it worst anyway. Diet is a player as have, no caffine, reduce you sugar intake, don’t drink artificial sweeteners I went to see a specialist and he said try & cut them out. I did a bit a research and read this ‘artificial sweetener for soft drinks may cause human neurochemical changes that could have functional or behavioral consequence’ and this ‘artificial sweetener aspartame is a promising candidate to explain the recent increase in incidence and degree of malignancy of brain tumors. I try to drink just water or decaf tea which has enabled me to reduce my RLS which has completely gone during the day.

I hope this helps.

Gareth

[kel12345 in reply to beady3]

What's A & E?

[Kaarina Administrator in reply to kel12345]

A&E is Accident & Emergency department in a UK hospital.

[kel12345 in reply to Kaarina]

Thanks

[Joolsg]

Listen to Raffs- and follow his excellent advice.

Every day someone comes on here suffering Augmentation from dopamine agonists ( Ropinirole and pramipexole). Read the meds leaflet- there’s a section on Augmentation and show it to your doctors ( they seem oblivious to the problem!).

Let us know how you get on. It’s really difficult but lots of us have been through it.

[Lolly53]

Sounds like you are experiencing

Augmentation please take he advice of the others about weaning off slowly. It is hell to do but will be worth it in the end. Augmentation occurs when the medication you are on has maxed out and your body still craves it. But the medication is actually making it worse, thus the 24 hour symptoms. I’m so sorry you ar going through this. My prayers are with you that your withdrawal will be done in a manner that is not to hard on you. We are all empathetic to you and your plight as it is also the same story for many of us. Keep us posted on how you are doing. Blessings to you.

[Nonsleeper]

I was desperate too. I may still need help later on if the Neupro patch I am using begins to augment my RLS symptoms. But the main thing is that I’m able to get sleep......my iron levels were so low and apparently low iron augments RLS all by itself. My levels are better now and between the switch to Neupro from Pramipexole and the increase in iron, my symptoms are much much improved.

Get your iron levels tested right now! I’m taking an over the counter iron supplement with drs. Approval. It has made a huge difference.

Good luck.

[knoXj in reply to Nonsleeper]

On the flip side, my iron was too high...

Reducing iron via blood donation (definitely more than one for me!) stopped my RLS.

Do not accept lab ranges for beneficial because they are not. I've been donating almost every 56 days since Aug 2016, and still not optimal, but feeling soooooo much better.

June 2018:

Iron 138 ug/dl (Opt=100)

TIBC 385 (Opt=285)

Transferrin 300 (Opt=300) !!!

Sat % 36 (Opt=25-30)

Ferritin 31 (Opt=~20)

Ceruloplasmin 34.4 mg/dl

(Opt-35-40)

Zinc 68 ug/dL (Optimal=100mcg)

Copper 132 ug/dl (Opt=100mcg)

RBC Mag 4.4 mg/dl (Opt=6.5mg/dL)

(Iron chews up magnesium and lowers zinc, so hope this improves by end of the year as iron is lowered.)

ncbi.nlm.nih.gov/m/pubmed/1...

[macewan13]

I agree with Bodziu. I have come off all the DAs finally. I was on them for several years, with varying degrees of effectiveness and side effects. Augmentation was vile as was withdrawal but I feel so much better now. I take opioids as needed and have sworn that I will never take a DA again. RlS is only during evenings and nights and not always terrible. The big difference is that I have retired, so can sleep during the day if I have a bad night.

Good luck to you.

[Kells22]

Go to the gp and ask for co codamol or Dihydrocodeine. I was on co codamol for 2 years until they stopped working,now I’m on Dihydrocodeine. They do come with other unwanted side effects but they do work. Hope you get things sorted soon. X

[Legsbohn]

Don’t bother with a GP, go to a Pain clinic and ask about Tramadol. Good luck!

[knoXj]

Just in case, I have to mention B6 toxicity. After I finally got a diagnosis, Nov 2015, the elevated B6 lab test explained why I had numb/burning/sometimes frozen and sometimes hot feet for four years was explained. Grrrrr. Yes, I was thinking it safe to use these supposed water-soluble vitamins, but it actually stores in muscle. B6 toxicity can abuse all kinds of symptoms, so it can be confusing. BTW, toxicity symptoms mimic deficiency symptoms. A blood test will show what's really happening. If supps are stopped, know that levels can fall in a week or so and the test will look inconclusive. BUT, the symptoms can definitely continue. Three years later for me and while better, not 100%. The damage can be permanent. Time will yell.

drgutierrezauthor.blogspot....

[Beffie98]

I feel your pain. Here lately I’ve been doing some stretching and walking and they feel much better. I keep having episodes of my body legs feeling wobbly n my arms too, it only comes in spurts. Comes n goes. Do u get tht feeling?

[Bganim1947]

The members of this forum will give you all the info you need to titrate off Ropinerole. That’s the first thing you’ll have to do. I was on 12 mg of Extended Release Ropinerole last summer thanks to an uninformed neurologist. The folks here told me exactly what to do to get off it.

The overdosing causes augmentation—that’s what you are going through, it’s hell, I know. It took me a several months to very slowly get off Ropinerole and begin taking 100 mgs of Lyrica (Pregabalin) and 100 mgs of Tramadol 3 X a day. I recommend you read my past posts from March 2016 through to the present —they should still be available.

With this titration regimen and this medication taken religiously every day, I have been RLS free for nearly a year now. I can’t say enough about Lyrica. And yes it will cause a little weight gain in the beginning,

But once your body acclimates to the medication, it will subside. My past posts are under Bganim1947.

[darena]

I totally understand your desperation. I spent many such days. I tried many drugs and some worked for a while. The best for me was Neupro 6 mg but had no more areas of skin to patch it on. I was particularly despondent one day and ordered a Relaxis pad. It was expensive and I nearly cancelled my order but luckily didn't. It worked!!!! I have not had an episode in 5 months. The pain still lingers from time to time but not enough to even use the pad. The pad can be rented and I think every RLS sufferer should give it a try!! Good luck!!!

Daren