Weaning off dopamine agonist a nightmare - Restless Legs Syn...

Restless Legs Syndrome
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Weaning off dopamine agonist a nightmare

Moonpen
Moonpen

I would like to thank everyone for posting on here. I realize how certain treatments can help some but not others so the more information we can get to try really helps. I am in the process of weaning off Mirapex.....what a nightmare! Last night was my first night with not taking any. I have very slowly weaned down and with the help of my doctor prescribing different meds I have been able to get to this point though believe me I am very sleep deprived. I have tried clonazepam, tramadol, hydrocodone and Neurontin. Because I have strange paradoxical reactions to a lot of meds none of these helping. Anyone have any other suggestions? Also after last dose of Mirapex anyone experience not needing any medicine and how long did it take to get to that point?

11 Replies
oldestnewest

Well done!

After I weaned off pramipexole, and stopped completely it took around 3 weeks to settle in to a better sleep pattern.

I had also increased iron intake and started 100mg of gabapentin.

That was back in January.

Nowadays I’m still on this small dose of gabapentin and gentle iron. My usual night now is sleeping soundly until about 2am, woken with achy/wriggly legs which settle with a few gulps of coffee I take to bed in a flask (I’m one of the exceptions to the “no caffeine” rule) occasionally I need to take a single paracetamol/codeine, especially if I have exercised during the evening.

I can honestly say I feel I get enough sleep now, although it always has a short interruption! I’m starting to consider a trial without gabapentin.

Best of luck, I know how hard it is, and I can remember thinking “this is how life is now “ but it does get better. Make sure to get your ferritin checked, I’m sure iron made the difference to me.

Thank you for the reply and support. I’m glad to hear I could possibly stay on no meds at all. I will try the coffee at night to see if it works for me though I am used to very little sleep anyway. I do take iron and other supplements and have been for the past year or so. My ferritin level is actually good at 400. Again thank you so glad I found this site it is good to know I am not alone in this suffering.

Mjm012
Mjm012
in reply to Moonpen

How much iron do you take? What is “gentle” iron that people refer to?

Joolsg
Joolsg
in reply to Mjm012

Ferrous bisglycinate. You can buy online or from Holland & Barrett in UK or in patch from PatchMD in USA

patchmd.com/

They post topical iron patch which contains ferrous bisglycinate quickly and cheaply from USA to Europe.

I take 2x 28mg pills and wear one 40mg patch every other night- studies have shown iron is absorbed better if taken this way. Also gentle iron doesn’t cause constipation like other forms of iron.

It increases iron levels slowly but if IV infusions are not available it’s the best way to get levels up.

Hope that helps.

Well done for getting off mirapex. The withdrawal symptoms will last for at least another 2-3 weeks so don’t be discouraged if symptoms still persist.

If you can manage without meds that is wonderful. I see your ferritin is 400 which is a plus- higher ferritin levels have been shown to help during withdrawal from DAs.

You may be one of the lucky people whose RLS settles to a point you can manage without meds. Fingers crossed.

If you’re still getting disruptive sleep after a month you may have to consider a small dose of one of the other 3 classes of meds that help.

Or maybe diet/ magnesium/niacin supplements will be enough to calm the jumpy legs.

Moonpen
Moonpen
in reply to Joolsg

Thanks for the encouragement. I am determined to stay off meds if at all possible.

I weaned off Pramipexole 6 months ago and now take 200mgs of Gabapentin and Gentle Iron every day. I get about 7 hours sleep a night with one or two short breaks but always manage to get back to sleep. I am happy with this routine currently but will try less Gabapentin in the Summer. I have had the odd sign of RLS but nothing I cannot cope with. It is all worth it in the end.

Thought I would post an update. I am 3 months off mirapex. Started 900mg gabapentin before bedtime, which didn’t help much. Started seeing a functional medicine doctor approx 4 weeks ago. After lots of testing so far I am on hormones and supplements, weaning off gabapentin down to 600mg nightly, also on Paleo diet. I am sleeping soundly but do wake up 2-3 times a night with mild RLS though the sleep I am getting in between makes me feel very rested in the morning. Tomorrow I get results of 1 more test am hoping it will be more good news and answers. I have discovered drinking 1/2 cup of coffee when I wake with RLS allows me to go back to sleep within 10-15 min. Strange but do know that coffee helps to release dopamine so I guess makes sense. The doctor I am seeing is hoping to detox me and get me back to a normal lift with no medications if possible. So far he is the only doctor I have seen that wants to find the cause of my RLS.

Hidden
Hidden
in reply to Moonpen

I’m on the same journey...finding the cause instead of throwing meds at it alone. Seems for me food and gut health are key.

Completely with you re the coffee! Interestingly the coffee plant is related to kratom.

A cup of coffee also helps me. My understanding is that there is a scientific basis - coffee affects the adenosine receptors which are implicated in rls and that is the reason it can help with symptoms.

I hope you continue to get the refreshing sleep. Thanks for the update.

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