Time for a change

[Want2sleep]

I am a 42 year old woman and I have been dealing with rls for almost 20 years now. I was on requip for about 5 years then noticed it was getting worse so my dr took me off for a couple years and they only bothered me at night so he put me back on it and started to happen again in couple years Switched me to morales and that did good for years then it started making it worse. I would have it for days on end. Changed me back to requip and it calmed down. About a year ago I was having it so bad that my arms would move and jump because of the rls Or that’s what I assume Dr took me off requip and put me on gabapentin which was the worse mistake. I walked around jumpy and constantly moving my legs and arms and didn’t sleep for 3 nights. He took me off that and back to the requip and upped it to 4 mg every night. Then looks at me and tells me he was sorry that there was nothing else he could do. It’s starting Tom interfered with day to day living. Any suggestions on what to do next.

[Madlegs1]

Please check out Augmentation.

There should be links somewhere on this page, depending on how you are reading this post.

Google ' Mark Buchfuhrer and Augmentation' if the above doesn't work. You could print his management protocol to give your new doctor.

Basically, you need to get off Requip and any other DAs, and go on to a new medication.

Gabapentin/ Pregabalin are the usual ones. They can take 3 weeks to kick in, so don't give up.

All new meds can take time for your body to adjust, so again, be patient. You don't have many options with rls medications.

Your experience with Gabapentin was not due to the Gaba, rather it was withdrawal from the DA. So there should not be an issue returning to it.

Your journey will not be easy, but is one travelled by many here. Reference' Nicktheturk' posts as classic.

Good luck.

[Secretpassword]

Pramipexole and Neu-Pro are alternatives. The latter is ridiculously expensive, but works. Pramipexole is just a different dopamine agonist (DA) but worked for me.

Madlegs1 is probably correct about augmentation. See hopkinsmedicine.org/neurolo...

Detoxing from the DA’s can take 8 to 12 weeks.

Best of luck.

[Hidden in reply to Secretpassword]

Requip, Ropinirole, is a Dopamine Agonist (DA) and it's good to be aware that DAs commonly cause Augmentation.

Pramipexole and Rotigotine (Neupro) are also DAs and also cause augmentation. Of the three, Pramipexole is the worst for this.

It's also good to realise that if someone is suffering from augmentation as a result of taking one of these DAs, taking another DA is NOT an alternative. Augmentation will occur again. Sooner, rather than later.

Having suffered augmentation myself due to taking Pramipexole, I would never suggest that anyone switch from one DA to another.

The alternative "first line" medications for RLS are the alpha2delta ligands, e.g. Gabapentin or Pregabalin, which do not cause augmentation.

[Secretpassword in reply to Hidden]

The neurologist said that augmentation mostly occurs in people who suffered from RLS early in life, that is, for a long time. Used pramipexole for a dozen years. Dosage went up of course but augmentation didn’t occur until ten years in. Did self diagnosis then finally found a neurologist who knew something about RLS.

Neurologist recommended going completely off any meds. Then start using a different DA, in my case NeuPro. As you would be aware the detox is brutal.

Have used Gabapentin in dosages up to 1500 mg and it did not provide relief. Any other suggestions ?

Want2sleep, its might be a long process but hang in there a solution will come.

[Hidden in reply to Secretpassword]

If Gabapentin doesn't work, then some people try Pregabalin. If that doesn't work either then you're getting into the realm of "refractory" RLS.

I imagine an RLS expert, such as Dr Buckfuhrer, would advise using an opiate. You could ask him.

As an alternative, some people go back on a low dose of Pramipexole for a while, but then take a break.

I have also read a study that said extended release Pramipexole can relieve augmentation, the theory being that augmentation occurs when the DA is released too quickly. Only one study though.and a very small sample.

sciencedirect.com/science/a...

Sorry, that's all I can suggest.

[Secretpassword in reply to Hidden]

Thanks for the response. Pregabalin does not agree with my system. Do not know what refractory RLS is. Do not want to get into opiates. Will look into extended release Pramipexole.

[Hidden in reply to Secretpassword]

"Refractory" just means it doesn't respond to first line treatments i.e. DAs and A2D Ligands

[Dina77]

What prompted This? Did you have any

Epidurals or

Spinals

As they can provoke Arachnoiditis

[Hidden]

Just to say I agree with Madlegs.

Dopamine Agonists, (DAs) such as Ropinirole (Requip) are known to cause Augmentation which is typically as you describe when the drug starts to make symptoms worse rather than better.

The solution to augmentation is not to increase the dose, paradoxically, the solution is to stop taking the DA.

Any DA, that includes Pramipexole and Rotigotine.

Gabapentin, as Madlegs writes does not cause RLS. When you stop taking a DA, you will get withdrawal symptoms which can be quite severe. The more suddenly you stop, the worse the withdrawals will be. So it's best to gradually reduce the dose before stopping completely.

In the meantime, it is OK to start taking the Gabapentin before stopping the DA. It takes a few weeks to start working.

So, start taking the Gabapentin

Then gradually reduce the dose of Requip

When you stop taking Requip completely, you will most probably get withdrawal symptoms. It is NOT the Gabapentin causing these symptoms.

Some people take an opiate to help while the withdrawal symptoms last. e.g. Tramadol. They're not easy to get a prescription for. Co codamol might help, but it's worth persevering in stopping the Requip.

[Eryl]

You could try changing your diet to see if it makes a difference. I cut out all sources of sugar (including biscuits, cakes and fruit juices) except whole fruit, and now rls is a rare problem for me, occuring mostly when I've had a high GI meal close to bedtime.

If the diet doesn't work there will be no harm done and you may loose weight, which is desirable for most people.

[Parminter]

Did he wean you off the dopamine agonist while starting gabapentin? Or did you just jump from one to another? If so, you would have bad withdrawal symptoms such as you describe.

The 'what else' he can do is to add an opioid of some sort to your regimen.

There are three well-recognised classes of meds for RLS, which you can take alone or together - dopamine agonists, gabapentin and similar drugs, and opioids.

Careful, supported withdrawal is very important. It can take a long time to clear the brain.

ncbi.nlm.nih.gov/pmc/articl...

This is a journal article which makes it clear how important it is to treat changes seriously. Take it to your doctor.

[Jumpey]

Good luck with the withdrawal.Hang on in there.

Get your ferritin level checked and aim to get it to around 100 which often improves symptoms. I manage on alternating opiods.Tramadol and codeine.

.Good luck.x

[Sara_2611]

Hi

Personally I use Super Balneum Cream although it's for skin complaints. It relieves it for me so I can sleep at night

Maybe try that you can buy it over the counter. I have to point out though that by doing so you are taking a risk as everyone's skin is different

[jjyankee]

I have horrible RLS- have tried many different meds for it (ones you mentioned and others) they just didn't work for me and had terrible side effects. I now take 50 mg tramadol once a day and it completely gets rid of my RLS. Because it keeps me awake (not everyone, some get very sleepy), I take it around 6PM. Tramadol is an addictive drug but I figure one small dose a day is not a big deal- It is also the only drug that has helped with my ongoing depression, which is a miracle for me as I've been on countless drugs for that as well which mostly all exacerbate RLS.

[byrnzy4 in reply to jjyankee]

I take one small dose of morphine each day at 7 PM, and that completely eliminated refractory RLS. I look back on the trials and frustration on many different methods to resolve this and be able to sleep, and I can't believe how simple this is FINALLY. I spent a lot of money, time, and emotions on a LOT of dead ends, raising my hope each time, then dashing it. I still cry when I think about how difficult it all was. I'm glad you found help that works for you. Now if we could all find something that works!