I feel desperate! Tonight is day 6 coming off Mirapexin and I just can’t take the aggressive shakes at night. I was on 0.54mg and I reduced it gradually as I started taking Lyrica and increasing this one at the same time.
I too the decision of stopping completely Mirapexin when my partner was going to be away just in case it was going to be bad. Well, it is bad! Very bad! Unfortunately I still need to go to work and look after my young children and I am not the same person during the day either. I feel so exhausted and very irritable.
I am taking now 300mg of Lyrica and still suffering like crazy. Tonight I have taken also a Valium 5mg that seems to be helping at the moment.
I would like to ask about your experience of coming off Mirapexin or equivalent and what can I do, please? I desperately need help
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RoMB
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I came off ropinirole in 2016 and know exactly what you are going through. The leg jerks every 10 seconds and the lack of sleep are horrible. I notice from your previous post that you live in Dublin but travel to Spain for work.
Madlegs sent you some info on meds to help during withdrawal and someone suggested you contact Involuntary Dancer who has a very helpful, knowledgeable GP in Dublin. Did you contact her?
In the meantime, you are 6 days into full withdrawal and you will need help, particularly if you are on your own with small children. Do you have anyone you can call upon to help look after the children? Call friends, family, anyone who can step in as you will get little or no sleep for 10 - 14 days after the last dose of pramipexole. In the UK we can buy Solpadeine max ( codeine and paracetamol) over the counter in pharmacies and if you can get hold of some of that, do so until you can see a GP to help.
The usual way to get through withdrawal is as madlegs mentioned, a strong opioid based painkiller like tramadol or Oxycontin. Klonidine has been mentioned as useful during withdrawal as well but I have no experience of it.
I took tramadol and it helped but not as much as cannabis. My adult children got hold of some illegally and I took it at night and it allowed me an hour's sleep.
Other methods to help during this stage are the hottest bath you can endure, compression socks, sitting with your legs up against the wall and any distraction technique you can find.
The Lyrica will make no difference at all until about 3 weeks after the last dose of pramipexole. It should then start to help and you can take the doses at night only as the RLS in the daytime should settle.
However, I promise it does settle down so DO NOT be tempted to take another pramipexole - you will just prolong the agony. You will see a difference in 4 days so hang in there and get help tomorrow from your GP and friends.
Withdrawal is bloody difficult and you need support and time off to see it through.
If at any stage you can't cope, head to the Emergency Room at a hospital and explain everything I've just written. You can show them the video on Augmentation on the main page of the RLS UK website.
Thank you so much for your reply! I felt tempted actually last night to take Mirapexin again but I didn’t . Thank god Valium helped. I am actually a pharmacist and as the comments were so bad about knowledgeable professionals I decided to do this by myself. I never thought it was going to be so hard though. I tried to smoke cannabis but I am terrible making a joint, I need to practice hahhahhah. I took tramadol the first night but it made me really sick until midday the following day. I guess Valium and cannabis should be the way for now. I really appreciate your words, it has made me feel better and bringing me a bit of strength to continue. 🤗
I was worried about you last night. I know how long and black and frightening those nights of withdrawal can be.
The valium will really help and I know what you mean about rolling joints. I’m not even a smoker so I would choke a lot !!
I’m so glad you didn’t go back to pramipexole- it is so tempting when your body won’t keep still. Withdrawal is apparently harder than coming off Heroin- I think that’s true because it lasts longer.
I meant to say get your bloods taken and ask what the actual figure for serum ferritin is. Getting levels above 100 really helps for RLS and makes withdrawal easier.
Get sleep whenever and wherever you can during the day as the withdrawal is worse at night.
Well done for getting through another night- only a few more and you’ll start to feel things settle .
Life after dopamine agonists is just so much better- the daytime RLS should disappear .
You have got some great advice from Jools on dealing with the withdrawals. I just noticed you say the Tramadol made you really sick, that happened to me when i tried to take two , a few years ago now, One of the doctors at my surgery mentioned taking a anti-nausea med, something i never thought of before. Most anti-nausea meds can make RLS worse, there is one here in the UK which i have taken many times which is RLS friendly called Domperidone but your doctor has to prescribe it these days. Some thing to think about if your wanted to try Tramadol again.
Thanks Elisse, I have some at home actually. If I try again Tramadol, I will start with one tablet only and taking domperidone. Thanks for the advice 🙏
That’s why bongs & pipes are wonderful inventions! Amazon & Etsy have some inexpensive ones. I’m on Day 30 of Mirapex withdrawal & medical pot has really helped me get through this. I also made my own capsules with a strong indica oil (knock out sleep oil) & coconut oil. I used to ave 0-5 max hours of fitful sleep but since starting on withdrawal I’ve taken an oil capsule, Melatonin & an Oxycodone I’ve been sleeping 8-10 hours a night!😲 i think the sleep has been a main factor in this withdrawal not being worse than it is. Good luck & best wishes for peaceful zzz’s. 😴😴😴
Kudos to you Joolsg. You have so much knowledge & the way you share it & help fellow sufferers is stellar. You are very appreciated. I wish I had known you the last 15 years.
Thanks so much for that Zbirth1, I see you have also given excellent advice- hypno birthing techniques helped me through second labour and withdrawal from Ropinirole but I didn’t know how to explain it !!
So pleased you are also off Mirapex- I really hope your RLS and DAWS settles down.
I know I had a form of PTSD for months afterwards.
Yay for using hypno-birthing❣️ May I ask what country you are in? It’s still rare in The US but I used it with hundreds of clients. The hospital epidural rate was 74% but with “my” Moms it was just 4%. Did you have RLS when you were pregnant?
I’ve just replied to your other post about panic attacks.
I’m in the UK ( London).
I had RLS during third trimester and it never went. I’m sure it was linked to anaemia and even though I increased iron it still didn’t improve.
Hypno birthing I learned from a wonderful woman who taught me breathing techniques etc and my second labour was actually wonderful- no pain relief at all and no noise.
Caesarean rates are increasing over here as well as epidurals. No one was going to stick a long needle in my spinal cord!
Hi Joolsg, I have done now 15 nights. Symptoms have improved but I still wake up a couple of times at night and waking up in the morning with the movement and the tension in my whole body. I find that the cannabis effect does not last the night and I can only do 2 puffs otherwise I get hallucinations and that’s not pleasant. I am just waiting for the 3rd week as you said when Lyrica should work. But I am having doubts now, does it really start to work and there is no need for other drugs?
I agree on the cannabis- it only gave me about an hour's relief during withdrawal but that allowed me to get a much needed hour's sleep. I had panic attacks on the cannabis after a week and suspect that was because i had never used it before and it was "street" weed with a very high THC content.
I kept a very detailed diary during withdrawal ( I still do 2 years later) and I can see that my symptoms were still very erratic for at least 2/3 months after the last dose of Ropinirole. I had used tramadol during the withdrawal period and continued to use it for 3 months with 900mg of Gabapentin. I was, like you, only managing about 4 hours sleep with 2 or 3 RLS episodes at night.
I visited a chiropracter who taught me some very useful pilates leg exercises using a theraband. I still use them today when the RLS wakes me at night and I can usually get back to sleep within 10 minutes.
I had side effects on gabapentin ( severe diarrhoea) and the tramadol didn't seem to be helping, so I switched to Oxycontin 10mg ,twice a day.
That worked almost immediately BUT, after a week, I developed severe panic attacks. I added diazepam which stopped the attacks and a week later, on the advice of Dr Buchfuhrer, added Lyrica ( 150mg) and 5mg of oxycontin at 2am.
I am still on this combination and it gives me 80% cover. I still have periods where I have RLS 2 or 3 times a night for 3 or 4 days a week but the RLS is mild and I can usually get back to sleep within a short time.
So... it can take months for the withdrawal symptoms to stop and to find the right combination of meds that gives you the best coverage.
If the RLS is still not allowing you good night's after another month, I would see your GP and consider adding another med. Two meds at lower doses often work better that one med at the maximum dose.
I would also recommend sleep during the day if at all possible ( easy for me to say as I am retired) but I know that is very difficult if you are still working.
Hey RoMB! You’ve found the right place for support. This forum is a sanity saver & you’ve gotten great info from others. 😀
I am on Day 30 of my Mirapex withdrawal. It sucks, it isn’t fair to anyone suffering agonizing withdrawal symptoms but I’m proof positive you DO make it through this. The Oxycodone is a lifesaver for me as is medical pot. Are you withdrawing under a Dr’s care? Be very careful taking Valium. It can cause its own problems.
I haven’t had any severe leg or full body episodes in 3 days. (YAY ME!!!). Unfortunately the psych garbage is starting but that’s another story 😱😩. You definitely need help. Do you have a good support network? It’s so hard to ask for help but it’s critically important. You & your family are in a crisis & you need support. Use any distraction you can. Have you had your ferritin & Vitamin D levels checked? I taught birthing classes for 17 years so I use the relaxation techniques I used in class, I highly recommend listening to the cd “Return to Pooh Corner by Kenny Loggins, it’s gotten Hundreds of my clients thru labor lol. Close your eyes & pay close attention to keeping your breathing as slow & deep as you can while trying to relax your forehead arms, shoulders,back & bottom & as much of your legs as possible. Make sure your hands are open & relaxed. If your legs keep screaming at you focus back on the breathing as soon as you are able. It’s not magic & takes practice but it helps me take the edge off. Sending positive thoughts & healing hugs your way. Please let us know how you are doing.
Hi Zbirth! Thank you for your advice. I will definitely try that technique for relaxation, I am open to everything!
I am not doing this under any GP care as it’s very difficult to get to someone with knowledge. As I am a pharmacist I have access to the meds and I am doing it by myself. Last night was my day 7 and I had a good sleep after smoking cannabis, 300mg of Lyrica and 5mg Valium. I am quite aware of the dangers of taking Valium in a regular basis but I hope within 2 weeks as Lyrica starts working that I won’t have to take it any more and o my continue with the smoking if I need to.
I decided to go though withdrawal by myself as I wanted to spare my partner seeing me like that. Maybe it wasn’t the best decision but now it’s too late for regrets. He should be back by the weekend and together he will support me to get to the other side of Mirapexin.
I thank everyone in this forum taking the time to help others like me. Without you it would be even more difficult and I actually don’t feel alone going through this ❤️
Hi RoMG, first of all congrats for getting off mirapex. My last pill was February 3rd. I am on 300 mg of Lyrica also, However my backup pill is 5mg of Oxycodone. I take it as need it. I won't take it during the day only at night to sleep. Usually during the day I can keep busy and walk our exercise.
From what I've read on the Forum it takes 2 to 4 weeks after you stopped mirapex to actually get it all out of your system. Some have even said it takes longer then that.
I have an appointment next Thursday with a neurologist that I've seen before but only once and it wasn't for RLS. I'm anxious to talk with her and see what she advises as far as something different to be on it until I'm actually over the withdrawal period.
I have had some pretty rough times as I'm sure you'd have too. I don't work so I can sleep through the day and catch up that way.
Good luck with your battle. God bless and take care. Keep us posted how you're doing.
Hi Tennwalker1, I see we are in the same boat. Going through withdrawal at the moment. I haven’t gone to a GP and so I can’t have Oxycodone but I seem to be working it out with the help of weed and Valium. Last night I have to say was the first one that was ok. But I just take every night as it comes. I am going to look into buying a pipe for the weed and smoke it at night. The feeling that I had last night was like having a massage in my legs, and I woke up naturally just after 6am. I am still feeling tired during the day but I have hopes to be able to manage the symptoms now. Let me know what your neurologist say. God bless
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More details about "slow release mirapexin" please.
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