Dopamine withdrawal timing

[Margaret122maryL]

I have been on pramipexole for a decade, with symptoms markedly worse within the last year. My GP strongly recommended going from .50 mg to 1.0 mg. I knew that was wrong, so didn’t do it. Instead, I requested..and received…Tramadol and stuck with the o.5 mg. That kept me semi-stable for a short time until I realized I was deep into augmentation. I tapered as best I could…it was awful…and received MDs approval for Tramadol 100 mg. Still have some withdrawl symptoms…extreme fatigue, fogginess, night time wakening with legs twitching. I think it may be over soon. It has been 6 weeks of taper, and I have survived two nights without any pramipexole. Is this about the right timing? I have read some take a year.

Does Tramadol cause augmentation? I have read that it does not and I have read elsewhere that it does.

With so little really known about RLS, is it worth my time and effort to travel to a sleep center? There is a center close to me, but it seems to focus on sleep apnea.

And while I am here…let’s talk about SIBO. I was diagnosed with it last year and when I asked the GI doctor about reports of a link between SIBO and RLS, he wasn’t aware. Is there any sleep consultant who would consider looking at both these diagnoses, since research shows a link? When I called a clinic about the possibility of a consult, they wanted to know which disrder i wanted to focus on.

[Rustsmith]

Your pramipexole taper with the use of 100 mg of tramadol sounds about right. The catch is that you will probably need to stay on the tramadol to manage your RLS, sort of like switching it for the pramipexole. If not tramadol, then you may need a different opioid.

Has your doctor done blood tests to check your iron and ferritin levels? Some people have low ferritin levels and their RLS is much better if they go through iron therapy. This can involve taking an iron supplement (which is slow to work) or an iron IV-treatment.

You asked about augmenting on tramadol, the answer is that it can happen, but is no where near as common as augmentation is with the dopamine agonists. Tramadol is the only non-dopamine med that has been observed to cause augmentation.

There are several things about tramadol that your doctor probably didn't tell you and may not know him/herself. The first is that there is an extended release version that you can take once/day rather than worrying about timing to take it in the evening. More important in the future is that tramadol is sort of a combination med. It is usually used as a weak opioid, which is fine for RLS. It is also a pretty strong anti-depressant, although it isn't FDA approved for this use. On several occasions, the FDA has refused to approve meds that are effective anti-depressants and also are opioids. The anti-depressant properties are important when it comes time to get off of tramadol. You need to taper it much more slowly than you would an opioid. Failure to do so can lead to a condition that is sometimes called SNRI Withdrawal Syndrome, which causes PTSD-like symptoms.

As for visiting a sleep center, you may or may not benefit from a visit. IF the center has a doctor who is very familiar with treating RLS, then it would be beneficial. If not, then it would be a waste of money. Your best bet at this point would probably be to call and ask to speak with a nurse. Ask the nurse if the doctor has experience treating RLS and patients who have been through augmentation. The answer (or lack thereof) should be rather telling.

There are two other options available to you. If you are close enough to one of the RLS Foundation's Quality Care Centers, then that is your best option. They are all RLS specialists and provide the latest treatments for RLS. Some of us travel great distances to see doctors at these centers. However, if that isn't a realistic option for you and your doctor would be willing to learn, then you might share this paper from the July Mayo Clinic Proceedings. This is the latest treatment protocol for RLS and was prepared by the leading experts in the US and Europe. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Margaret122maryL]

Thanks for your advice. I was unaware or the ER tramadol. The Mayo Clinic seems to favor it and it sounds like a possible answer. I have appointment to discuss this with my GP, who is open to suggestions and ideas and has no fear of prescribing opiods for me.
Now my concern. For a month I have been taking 50 mg. in late afternoon to prevent the start of symptoms at 5:00. Then 50 mg. at bedtime…the two doses do not always prevent symptoms from waking me after five hours. So if 100 mg doesn’t totally hold out for eight hours, how effective will it be for 24? I read that blood levels take a few days to stabilize. Will this be another miserable transition? Any comments or experiences appreciated.

I am especially concerned as my son also has RLS (my mother did, too) and I want him to benefit from my experiences with these drugs. He is currently on mirapex and I expect he will augment at some time.

Again, thank you and
Good night?

[Rustsmith]

There are several possible issues going on here that your doctor will need to decide between. Tramadol is a weak opioid, so your dose might not be strong enough to control your RLS. Tramadol itself isn't even an opioid. It is metabolized in the liver and one of the metabolites produced is the opioid and another is the anti-depressant. So there are two questions, would switching to the ER form at your current dose be enough to control your symptoms or do you need a higher dose. The max dose for tramadol is 400mg and I found that I needed 200mg to control my RLS. Maybe a daily total of 100mg is enough for you, maybe not. That is a decision that your doctor needs to make based upon the rest of your medical history.

[Margaret122maryL]

Thanks so much for your prompt replies. It certainly helps to know someone is out there for you. I especially appreciate you sharing your own treatment. It makes me less apprehensive about increasing my dose of Tramadol. I spoke to my doctor this AM…she does not have in-depth knowledge of the syndrome but is very willing to prescribe what the Mayo Clinic document recommends—possibly because she is past usual age of retirement and doesn’t need to worry about being chided for prescribing controlled substances. I will pick up the Tramadol ER later today. She says it is fine for me to supplement with a regular release pill while I transition. She is also willing to increase to 200 mg of the ER if needed.

Again, many thanks for your time and concern.

[Polar Bear]

How wonderful to have a GP who is willing to work with you and to take on board the guidance from the Mayo Clinic documents. Such cooperation is not always easily found. Good luck with your Tramadol ER. I hope it works and you have the safety net of knowing your doctor is willing to increase if necessary.

[Todge]

I am tapering my Ropinirole and actually see a neurologist at Mayo. I am going to message him and see if I can get on Tramadol. I was wary at first because augmenting the Ropinirole has pretty much destroyed me these past few months and this withdrawal is NO JOKE, so I immediately thought no way to the Tramadol. He did prescribe me Cannabis which maybe would work once the Ropinirole is out of my system, but aside from the munchies and a few laughing spurts, it doesn't seem to help with the ants crawling and the constant electric shocks. I am going to cite their own literature as evidence for the opioid.

Thank you for sharing your struggles. It definitely helps on these horrible lonely nights!

[Margaret122maryL]

I, too, am wary of the Tramadol. The thought of getting used to it and then having to withdraw for some reason is terrifying. Withdrawal from pramipexole was AWFUL. I am, however, starting to sleep and enjoy some daytime activities using Tramadol ER 100 mg at 5:00 PM, regular Tramadol 50 mg at 10:00 and ambien 5 mg. I’m embarrassed to list these drugs! In aa day or two, when I am feeling stronger, I will try to taper the 10:00 PM meds.


The Mayo Clinic website suggests telling friends about your diagnosis and difficulties, so they can understand your need to move. But ‘restless’ sounds so innocuous. Like you’re a spoiled child who needs to be disciplined. I admitted some of it to a friend today. She sympathized and agreed that lack of sleep makes life difficult—then suggested I try benadryl rather than start opioids. No one who hasn’t been in this situation can understand it.

[Rustsmith]

If I am opening the topic of my RLS with someone who isn't a close friend, I will often start the conversation with "I have a neurological condition that is known as Willis-Ekbom Disease, but is more commonly referred to as Restless Legs Syndrome". I then continue with the fact that most of us initially contact our doctor about the insomnia side of RLS and that the restless part of the name is only a major issue for those of us with the severe cases.

As for tramadol withdrawal, if you taper off of tramadol correctly and are switching to a different opioid for your RLS, then "withdrawal" is far, far easier than getting off of pramipexole. I switched from tramadol to methadone over two weeks in June and didn't have any issues. There is a stigma of how difficult opioid withdrawal is. I have been through opioid withdrawal with both methadone and tramadol (done too abruptly) and in both cases found that my untreated RLS was more of an issue than the withdrawal and that pramipexole withdrawal was an even greater issue than untreated RLS.

[Yankiwi]

"I have a neurological condition that is known as Willis-Ekbom Disease, but is more commonly referred to as Restless Legs Syndrome".

That's an excellent way to phrase it. All my close friends know I can't sit down for very long and need to stand up at dinner or a movie. They understand or at least are aware of my plight.