Can’t sleep

[Mommalicious]

I have been dealing with RLS for 15 years and have been taking Ropinirole. I had to increase the dose because it wasn’t working. I saw my doctor and he recommended taking extended release. I haven’t slept more than 2 hours a night for over a week. I’m so exhausted and depressed. I’ve even tried medical marijuana and that isn’t working either. Wish someone could help.

[Hidden]

I am sorry to hear this. You hear it so much in this forum.

So many people who are taking a dopamine agonist (DA) and it stops working so their doctor increases the dose without mentioning augmentation.

It sounds as if you're on the verge of suffering augmentation if you haven't yet started with it.

I hear that the extended release is less likely to cause augmentation, but only less likely and it is still a DA Additionally, one of the side effects of a DA is restlessness. This restlessness can exacerbate early waking. It might help you fall asleep by relieving symptoms, but staying asleep is then a problem. You could try the extended release, but it might be a frying pan and fire scenario.

In the past I have also been prescribed a benzodiazepine, Clonazepam, specifically to hellp sleep. It had a marginal effect and left me feeling groggy the next day, so not entirely recommended.

There is a kind of checklist you can go through tlo see if anythings contributing to your RLS getting worse if you haven't already done some checks.

Are you taking any anti-histamines, anti-depressants or antacids

Have you been checked for anaemia or even if this OK your Ferritin levels. Do you have diabetes, thryoid problems or any neuropathy.

I suggest you read up on augmentation and if you think it describes your experience, you ought to stop taking any DA. This needs to be done carefully so you need to come back here for further suggestions. There are alternatives.

here's a couple of links for information about augmentation.

rls-uk.org/augmentation-reb...

rls-uk.org/augmentation-reb...

[Joolsg]

I'm sorry to hear that. Manerva has given you excellent advice. Follow the links and your intuition will tell you whether you're suffering augmentation. The longer you've been taking Ropinirole and the higher the dose, the more risk of augmentation. The only solution to it is to reduce slowly with the help of strong painkillers like tramadol or oxycontin.

[blueeyes5262]

Tramodol ( ultram)

[blueeyes5262]

I'm on ropenerol and mine is getting worse 😔

I'm getting it all over now and I'm in misery 😫

[Joolsg in reply to blueeyes5262]

Then follow Manerva’s advice, read the links and start slowly reducing the dose. It’ll be the best thing you ever do but it will be tough. Lots of us have done it and are now in a better position with minimal daytime RLS and our nighttime symptoms 80-95% under control on different meds like pregabalin or opioids. Read everything you can on here and print off the relevant info. Go to your doctor and discuss a withdrawal programme.

[Hidden in reply to blueeyes5262]

As Jools says, you need to reduce slowly and then stop the Ropinirole. What you describe is augmentation.

As Jools also says, there are alternatives to Ropinirole.

Some people use opiates, e.g. Tramadol to help withdrawal from Ropinirole, if you're already taking it, it might not work for you as your system is used to it. You might need something else.

[Parminter]

Chronic, severe insomnia can be a side-effect of dopamine agonists - it was for me, so I know exactly how you feel.

Also, insomnia is part and parcel of the condition due to the fact that we have brains swimming in glutamate, which is an excitatory chemical.

You need to move away from dopamine agonists to gabapentin, pregabalin and/or an opioid.

DAs are magic for a while for many people, but there is a big sting in the tail for at least 70% of us. And augmentation can happen within a year.

[Sara_2611]

Oh dear I feel sorry for you since I've joined people are using drugs I've never heard of some it going OK some not

I won't try drugs I don't know because they would probably have serious negative consequences with regards to clashes with my current medication so I use cream that works for me

Hope you manage to sort it out soon

[Dogdoo]

What do you do when your dr won't even entertain the thought of any type of opiate.

I'm so desperate for relief and think methadone will help me.

Just saw dr today and switched from requip that wasnt working to mirapex!!

I DO NOT want to take another DA.

Then he said neupro patch.

I said how about methadone? He said no. I left with the mirapex.

I just want to bash my face against a wall.

[involuntarydancer in reply to Dogdoo]

Have you tried the a2d ligands such as pregabalin or gabapentin? They work well for some sufferers and doctors tend to be less anxious about them than about opioids. Also has your doctor checked your serum ferritin? Increasing iron intake helps a lot of sufferers. In your shoes I would purchase the medical textbook on rls by doctors Allen, Buchfuhrer, Henning and Lee available on Amazon and also download some scientific articles on the current treatment of rls and go back to my GP with them. Emphasize to him that you are willing to work through all possible treatment options (ie that it is improved rls you want and not access to opioids per se) except more dopamine agonists which are going to cause you suffering and worsen your rls - according to the textbook and all recent research. Keep badgering him/her until they take you seriously. It is disgraceful that you are being treated like this. You clearly know more about rls than your GP.

[Dogdoo in reply to involuntarydancer]

Thank you for your reply.

I am on a truckload of gabapentin.

I actually started it for nerve pain. My job changed so pain is better but then my psychiatrist took over the prescription to use for treating my anxiety.

Currently take 600mg 2x day then 1800mg at bed. I know, it a large dose. It controls my anxiety better than anything else and my doc likes to stay away from benzos. And I'm fine with that.

I actually had a physical today so I'll know my iron level. The neuro doc said it was 'normal so taking iron wont help'.

But i know mine could need to be 3x normal to help my rls so i blew him off on that one.

All that said, the mirapex is working wonderfully.

I've had 100% refief from my rls at the very lowest dose

Thus far i haven't experienced too much insomnia, which can be a problem with DA's.

Requip kept me up. Mirapex does not.

I still wake up in the middle of the night which is normal for me.

Generally i am able to get back to sleep.

I can get about 7 hours now but anything after that i wake with anxiety and have to get up.

I think by morning my gabapentin is wearing off so i have to get up and take my morning dose.

Should the mirapex stop we working, i told my doc i will NOT increase the dose.

I guess I'd try the patch after that and then see about an appointment in boston with dr w.

[involuntarydancer in reply to Dogdoo]

I am a returnee to mirapex (after a traumatic post-augmentation withdrawal a few years ago). So far it is working well for me though I live in fear of augmentation. I keep my dose at .088mg (will never increase that dose) and top up with kratom if I need some extra coverage - also magnesium rub and a cup of coffee which sometimes work quite well. I take occasional breaks in the hope of deferring augmentation and I keep my iron as high as I can (I understand it is particularly important to keep iron levels high while on a dopamine agonist as there has been a link between augmentation and low iron).

[blueeyes5262 in reply to Dogdoo]

Get another Dr

[Hidden]

Hi - this must be so tiring and frustrating. Additional remedies for restless leg syndrome might be magnesium carbonate, with calcium. If your iron or ferritin levels are low then may be taking floradix tablets supplement may help with restless legs as well as vitamin d found in gels and easy to swallow pills in cod liver oil. I find muscle cramps and restless legs can be helped by drinking tonic water, which contains quinine, which is prescribed in tablet form. Also eating a banana can help the symptoms as this contains magnesium and potassium. Other ideas are to lessen the pressure of your body, by putting a duvet on top of the mattress to sleep on. Raising the feet with a pillow underneath might help as well.

Drinking water may help during the hot weather, and milky drinks contain natural opioids so a warm cocoa with milk might help. If you haven't had a range of vitamin tests such as B12 and vitamin D with iron and ferritin it might be helpful to get a print out of your results. Metabolic disorders might be indicated such as diabetes or thyroid problems.

I have found eating some banana and drinking tonic water gives quick results within a few minutes so it might be worth a try. As for the drug you are on, then you should go back to your doctor as the dopamine levels are being affected by the drug. If you have too high calcium in the blood from tests, then this could mean that your vitamin D levels are being influenced as well as signs of thyroid problems or even parathyroid. Hope you can get some further tests. A sleeping tablet taken before bedtime, keeping awake until at least 11pm before going to bed, may help you sleep. Zinc supplements might help with muscle function too. It is found with copper in dark chocolate, so a few squares a day might help your zinc and copper levels. Hope you get a better night sleep tonight.

[Lisalou12]

Hi mommalicious. I do sympathise with you 100% I’m also on ropinerole 4mgs at night my doctor says this is the max dosage for rls so I’m wondering what the dosage was/is that your prescribed?! I understand that right now you probably feel like your never going to feel normal again as I do!! But I’m hoping that somewhere out there, there is some help for us sufferers.. Hope u finally have a decent sleep soon..

[blueeyes5262 in reply to Lisalou12]

No Dr ever told me about augmentation?

I even asked a Dr recently about augmentation, they looked at me and said they didn't know?

I don't think the government is doing enough for our problem with this horrible torture.

I would never want to become dependent on a home like a nursing home because I would be afraid they wouldn't take care of the restless leg problem.

Sometimes, it's as bad ass severe depression

[troopdad]

Troop dad here again I am not a Physician.I have had RLs for 81 of my 85 years. Presently I am Ropinrole one tablet at 3pm. It seems to help.. If you are hoping that Ropinirole is going to be an antibiotic that is not good..Ropinirole is not antibiotic but a preparedness prescription. My Neuro asked me when did the RLS start, I told him about 9-10PM. He told me to drop back 6hours and then take the med at 3Pm.That way the med is in your system prepared for RLS and not for catching up. Blessings on your suffering.. I also try Lidocaine on my limbs..

[blueeyes5262]

I find if I can remember to take the ropenerol early, I don't have the restless leg, but I wake up, very early with not as long to be able to sleep because I have insomnia along with everything else!

I have 14 medical problems no one sees, except my family, because they happen at home or after starting a new medicine that doesn't agree with my body .

The restless legs I suffer,at times can be quite discouraging, makes me wonder, what is ahead of me, and is it worth living long enough to experience, OR should I just give up and let nature take it's course.

I've lost my faith in any medical people,at this time.

They have too much power and they don't listen to the patient.

Everyone is at the mercy of the government and Drs

People are suffering and it's very unfair to be compared to drug addicts because you need something to help with the pain, you didn't ask for.

But they treat you like a criminal