I am infuriated. I am experiencing augmentation after 4 years on ropinirole. I experience severe RLS at least every other night and consequently do not get any sleep at all. The RLS has even spread beyond my legs. I finally discovered (after some research on the RLS foundation website) that if I take two or three of my husband's tramadol each evening, my RLS disappears! I've gone from absolute suffering to a miracle remedy. But... I've run out (my husband needs them too), and during a conversation with my physician today, he refuses to prescribe me opioids. His suggestion is to switch me to another dopamine agonist. I tried to explain augmentation to him, but apparently, he wasn't listening.
Here is my history: I was prescribed barbiturates and oxycodone beginning in the late '90s for migraines, and after about 10 years, I did begin to abuse them. I suffered with addiction for a few years subsequent to this, but have fully recovered, and I haven't abused any drug in over 4 years. I'm actually, generally speaking, pretty responsible with my medications. (I've taken gabapentin, methylphenidate, and clonazepam without any issues.) My doctor is condemning me to a life of suffering because of his own fears. I need a doctor, not a parent.
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cjouelle
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It's particularly awful to see your doctor (PCP?) is not listening about augmentation.
I'm sure others will give you more specific information, but the USA is blessed with several renowned RLS experts and Centres. Depending where you live, one these may be accessible to you. You are more likely to get an opiate prescription.
In the current "opioid crisis" I can understand a PCP's reluctance to prescribe an opiate in any event. It's unfortunate that you have a record of opiate abuse. In addition, I can appreciate your reason for doing it, but taking an opiate that's not prescribed for you, tramadol, might also be interpreted as abuse.
This shouldn't exclude an opiate prescription for you, but you would require supervision and I can understand your doctor's reluctance.
As regards your augmentation, the cause of this is, as you know, is the ropinirole.
I'm afraid this creates a dilemma for you.
The most effective way to relieve augmentation is to stop taking any dopamine agonist. I imagine you're aware that this is difficult and you realise the need to wean off the drug slowly.
The problems are that you may need additional help in weaning off ropinirole and you may need a replacement. Hence, possibly the need for an opiate prescription.
I would say however that the RLS symptoms you might suffer without taking any medication may be less than what you're experiencing now with augmentation. Pregabalin, as a replacement for ropinirole might be worth thinking about.
Withdrawal effects are lessened the slower the rate at which you wean off the dopamine agonist.
An additional factor may be iron deficiency and it may be worth you looking into iron therapy for your RLS.
Having suffered augmentation myself, for years, you do have my sympathy and I hope this helps a little.
Thank you so much for your reply. I have stopped taking ropinirole, and I don't notice any withdrawal effects. I am on gabapentin and have been for many years because of my migraines. My iron levels have been checked and they are fine. I understand that taking tramadol that I am not prescribed could be interpreted as abuse. But goodness, I am certainly not abusing it. I take the same amount each evening in order to lead a normal life. I'm not getting any high off of it (does anyone with tramadol?), and I don't even want to take any drugs that get me high. My substance abuse occurred when I was at low point in my life. Right now I am happily married and love the life I have. I take the tramadol simply to end my misery. Who wouldn't do that if they could? My husband gives it to me because he sees the suffering I go through. If I need to be monitored, fine. But honestly, I will not return to the hell that addiction creates.
I live near boston, and if I cannot get any additional help through my PCP (he gave me a referral to a local sleep disorder center), I will go to the sleep disorders unit at Mass General Hospital.
I understand what you're saying and didn't realise you had stopped the ropinirole or were still taking gabapentin. This is great.
You did say you were experiencing augmentation and hence believed you were still taking ropinirole. If you have stopped then you wouldn't be experiencing augmentation.
If you stopped recently, especially if you stopped suddenly then what you're currently experiencing may be withdrawal effects.
It is highly unusual for anyone to withdraw from ropinirole without experiencing withdrawals. Perhaps the tramadol has masked them.
Apologies if you thought I was implying you are abusing tramadol, I meant to say that, to a doctor, it might appear that way.
As I wrote, it's clear your PCP is not going to be much help and I hope you can consult one of the excellent RLS experts in the US. They commonly support the use of opiates for RLS. Buprenorphine is becoming quite popular.
I am 80 and a life time with RLS suffering and know a good RLS DOC. He has RLS and is a PhD and an Md. He understands Patients come from Europe to get his advice.
You’re clearly in a difficult position as Manerva explains because the best treatment for refractory RLS after augmentation is low dose opioids- particularly Methadone or Buprenorphine but a history of opioid abuse is a red flag and you will need to find an RLS expert who can supervise you.
It’s more likely you would be prescribed pregabalin or Gabapentin but these drugs have been reclassified here in the UK ( because of abuse issues) and they may also be more controlled in the USA.
If you’re near a Centre of Excellence you should try to see a specialist.
If you doctor is suggesting another dopamine agonist to treat your RLS, then you need to change doctors, as this one has no idea what they are doing.
Otherwise you can try and educate your doctor, but often this does not go down too well.
I know I felt like I was hitting my head against a brick wall with my doctor, until I did a lot of research and went to my appointments with up to date information to show my doctor.
SO many of us have this experience. I have now had to find a private consultant in the North of England who is actually prepared to see me. SO many have now suspended appointments because of COVID.
It will cost me a fortune I don't have but my GP DOES know what I am going through .. A friend video'd it and the GP was completely shocked. He had no idea how bad things get.
He is pushing the consultant now to see me very urgently.
It's all so very wrong and there are so many got stuck with various medications that caused us to experience augmentation OUTRAGEOUS is more like the descriptor! I also ask if any of these doctors actually took their Hypocratic Oath when they qualified?? If so why do they behaved in this manner.
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