Dopamine withdrawls: I have posted here... - Restless Legs Syn...

Restless Legs Syndrome

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Dopamine withdrawls

skelley35 profile image
6 Replies

I have posted here earlier and finally gotten to the last dose of Ropinerole two days ago. I was at 3.5 mg when I began the taper. First two nights of no dopamine but on 300 mg of pregabalin have resulted in no sleep. The few weeks previously I was just getting 4 hours max without any deep sleep. I have been up to dose on the pregabalin for appoximately 3 weeks. I have read the UK-RLS suggestions for tapers both slow and fast. The bottom line for me is that I need more than 4 hours of 0 deep sleep to perform my job as a Pathologist at peak performance level. My questions are as follows:

-The withdrawal from Ropinerol really just seems to me to be an out of control expression of my RLS nothing more nothing less. Is that what everyone means by withdrawl? Seems more like rebound from lack of DA?

Why does pregabalin help during the days but not at night? As I tapered I lost the augmentation of the RLS during earlier periods of the day but the night time RLS was worse than before tapering and especially after last doses. Is this how most are experiencing things?

The UK-RLS also recommends a faster taper which I used. The long slow taper will just leave me with suboptimal work sharpness for too long of a period. So I chose to "get it over with". Do people still suspect that things will begin to improve with regards to the withdrawl symptoms (worsen of RLS) over the next few days to a week?

This forum is great and I thank all for the support brought about by sharing.

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skelley35
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6 Replies
SueJohnson profile image
SueJohnson

Pregabalin does not help during the day. RLS is only at night. You had it during the day because you were augmenting on ropinirole.

No sleep is normal especially since you did a fast withdrawal. Joolsg always says to take time off from work because of this.

300 mg of pregabalin is a lot and won't help you until your withdrawal symptoms settle. Once it works I suggest you reduce by 25 every 2 weeks so you get down to the lowest effective dose. Or you may need to increase it by 25 mg every couple of days. The maximum dose is 450 although you can go up to 600 but the usual effective dose according to the Mayo Algorithm us 200 to 300 mg

Madlegs1 profile image
Madlegs1

As Sue says.

If you want to keep to a short schedule, then you will need opioids to relieve the symptoms of withdrawal.

Codeine can help, but you may need stronger, depending on how severe the symptoms are.

This should be needed for a few weeks.

All the very best.

I know it's not the same, but it took me 18 months to get off Fentanyl after spinal reconstruction. I understand the frustration.

Insomniak profile image
Insomniak

Hi, I have no answers for you but they are great questions. I have been tapering slowly from 4mg of ropinerole and am currently down to .75mg per day after 6 months. I do get about 5h sleep every 24h. I say that because it usually comes as 3 x roughly 90 min sleeps at least one of which is during the day. I have had to give up my job as a trainer temporarily as I would not be reliable. My social life is limited, I cannot really stay in hotels as I need to walk about 5000 steps average each night. It sucks but I hope that it is only transient. I wish you all the best with your own journey and please keep posting to let us know how you fare.

Joolsg profile image
Joolsg

RLS withdrawals are purely severe, increased RLS 24/7 & leg jerks every 10 seconds as your D1 receptors scream out for their 'hit' of dopamine.RLS follows the dopamine cycle. Dopamine is highest between 6am and 6pm. That's why your RLS is better in the daytime.

In around a month's time, as your D1 dopamine receptors start to calm.down and the pregabalin starts to take effect- you should start to sleep more at night.

If you want to learn more about the mechanisms- just read some research papers on DAWS.

Pregabalin takes a month to be fully effective.

You may find it works. If it doesn't help after 2 months- you are likely to be a non responder.

Gabapentinoids often do not work for RLS after years of damage to dopamine receptors caused by DAs.

Have you increased your serum ferritin above 200ųg? A few people find they can be med free after DAs if they manage to get an iron infusion.

Otherwise, Opioids will then be needed.

Purpleyam profile image
Purpleyam

Hi Skelley35, my experience was quite similar to yours. I tapered rather quickly from Pramipexole though, and the daytime augmentation went away soon. But the nights were terrible for maybe 2 weeks while the Pregabalin started to work. I needed 25gm to 50gm of Tramadol to help me, as well as some cannabis oil to get to sleep. I didn't like the side-effects of Pregabalin so I switched to Gabapentin. Hang in there, it's too bad you've got to go to work every day through this difficult transition but YEAY you are off dopamine agonists!! 🔥🎈🎉🏆

skelley35 profile image
skelley35 in reply toPurpleyam

PurpleyamSo no issues with tramadol. Given its action both on opioid and Dopamine receptors I was worried it would interfere or even prolong the withdrawl symptoms. How did you know when ut was time to fly cold turkey? (other than with your gabapentin). I have been fine from a side effect profile of pregabalin at 300mg. I just went to that dose as the reboubd RLS leaves me having no idea if it is adequate or too much.

Thanks in advance

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