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Restless Legs Syndrome

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Mirapex pramipexole withdrawal symptom question

tagaxel profile image
36 Replies

Has anyone who has had terrible Mirapex pramipexole withdrawal symptoms ever reinstated to their last dose in order to get rid of the withdrawal symptoms?

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tagaxel
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36 Replies
Dina1234 profile image
Dina1234

Hallo tagaxel, I was tapering pramipexol (sifrol) since last year.start dosis 0.18mg. I got even to the dose of 0.03mg in January 2021. I tried to get off in January and Mai this year, and both times my restless legs was going better but daws stayed.I tuk my last dosis 103 days ago and my restless legs ist almost completely gone, I still have burning feet and legs but I can handle it. My biggest problem ist DAWS, I'm still suffering from anxiety, depression, no stress tolerance at all, anhedonia... but it's getting better day by day. But very very slowly.

Important to say that my rls came when I was tapering my antidepressant (eszitalopram)

Elffindoe profile image
Elffindoe in reply to Dina1234

Sorry to hear about the DAWS. It sounds if you're doing well despite this.

Luckily not everbody gets DAWS.

I'm a little confused about the antidepressant.

It is widely accepted that ADs make RLS worse. Tapering an AD then should improve RLS not cause it.

Can you clarify?

Dina1234 profile image
Dina1234 in reply to Elffindoe

Hi Elffindoe, i don't know how that happened, I was taking eszitalopram and it didn't worked for me so well, so my doctor gave me elontril. I got very bad restless legs it was hell. Elontril didn't help me at all for rls or depression. Made me very very aggressive. So I started eszitalopram again and because of bad rls my doctor gave me first levodopa then 4 years ago sifrol because levodopa was not eneugh anymore. I wanted to get of eszitalopram so many times and every time I started my rls was worse. In the end I stopped eszitalopram two years ago (slowly) and during this time sifrol was eneugh to help me. I decided to stop sifrol because I'm 100%sure,in my case, that rls was withdrawal symptom from ad. And a got augmentation too, in my arms.

BAK524 profile image
BAK524 in reply to Dina1234

Hi Dina1234 I tried recently to wean myself gradually off of escitalopram as well. My RLS seemed to get worse as I lowered the dose. I got down to 3 mg and that was hit by horrible anxiety. Now back up to 10 mg. I've been experiencing more daytime RLS, but it seems to be diminishing. I'm having less anxiety and not reacting to the RLS as much. Seems kind of odd, but in a way I think the SSRI is helping me deal with all this a little more. I do find it interesting that reducing the SSRI seemed to make the RLS worse, not better.

Nettles68 profile image
Nettles68 in reply to Dina1234

Hi Dina,I am so sorry to hear you are still suffering! You are not alone...

I am in the same boat. 11 weeks since I took my last ropinirole and my anxiety and depression are extreme, like I've never suffered before especially the anxiety!

Just waiting for an assessment from the mental health team, hoping they can help me learn some strategies to cope.

It is good to hear you are very gradually beginning to see a little improvement. Light at the end of the tunnel is so important!

Stay strong X

Dina1234 profile image
Dina1234 in reply to Nettles68

Hi Nettles, thank you for your compassion. I really hope for you that it's going to be better. I feel better now than a few weeks ago. You replied to my post then. You have to stay stroge it's really getting better, believe me I'm in the same hell. It's very slow process but it is going better ❤️❤️❤️

Nettles68 profile image
Nettles68 in reply to Dina1234

Thankyou Dina that is so encouraging to hear and I am genuinely pleased for you that things are beginning to improve.It is true what you say, it is hell!

I wake early and I am so anxious I physically shake. I cry all day. It's dreadful! I am like a startled rabbit 24/7.

Just started prozac (I know an SSRI bad idea) but no suitable alternatives for me and feeling suicidal. Hoping my opioid dose will cancel out any RLS. If not I'll just have to come off it.

Thankyou again Dina your example is so amazingly encouraging and gives me strength 🤗

Dina1234 profile image
Dina1234 in reply to Nettles68

Hi Nettles, I'm so sorry for you that you are suffering so much. I just want to tell you that I did psychological therapy and what really help me was acceptance and commitment therapy (act) and mindfulness meditation. But in those weeks and days of horrible Panik and anxiety i was not able to make anything,anything at all. I lost 10kg in few weeks. The only thing was that I was always thinking my nervesystem is trying to heel himself and I just have to wait.that is something what I know from this page and I'm so grateful for all people who wrote the experiences what they are going thru.and I tuk also some clonazepam for the panic attacks. Whenever you need someone to talk just write me anytime ❤️

Munroist profile image
Munroist in reply to Dina1234

I’m so pleased ACT and Mindfulness have helped. Changing the way you respond to something can be very powerful. I also believe your body continually tries to heal as you say, although it sometimes needs help as well. I’m not familiar with ACT but will look it up. All the best.

Nettles68 profile image
Nettles68 in reply to Dina1234

Thankyou so much Dina your kindness means alot! 🤗

Aeonkontiki profile image
Aeonkontiki in reply to Nettles68

Nettles and Dina, thank you for your posts! It’s been about 2 months since my last mirapex dose and I keep wondering, when am I actually going to feel better?!

Nettles68 profile image
Nettles68 in reply to Aeonkontiki

Really hope you start to feel much better soon Aeonkontiki. Stay strong! 🤗

Aeonkontiki profile image
Aeonkontiki in reply to Nettles68

Thanks! I’ve started taking my gabapentin much earlier in the evening as others have suggested and it’s helping!

Nettles68 profile image
Nettles68 in reply to Aeonkontiki

That's brilliant to hear so glad you are getting some relief 👏

Boldgirl45 profile image
Boldgirl45 in reply to Dina1234

So sorry as I feel I should know this - could you remind me what DAWS is? THanks!

Dina1234 profile image
Dina1234 in reply to Boldgirl45

Daws is dopamine agonist withdrawal syndrome.Here is some info:

jnnp.bmj.com/content/84/2/1...

rxisk.org/sos-dopamine-agon...

I found this information online and here on this page because here we have lot of good people who are very helpful and they know very much. Much more then lot of doctors. Thank you all!!

Boldgirl45 profile image
Boldgirl45 in reply to Dina1234

Ah OK ! thanks very much for this (and agree, an incredibly helpful site!)

Madlegs1 profile image
Madlegs1

Tagaxel- welcome. To answer your question about resetting during tapering down.Yes - absolutely! There is no law to say you have to keep putting yourself through hell.

Just listen to your body and respect it.

If you've been tapering too fast, then it is only too sensible to go back a step, and have a breather and start again.

Just go a bit slower.

It took me 18 months to get off Fentanyl, with plenty of rests along the way.

Think of it as doing a Marathon for the first time. You would actually plan on plenty of breaks ( and breakdowns 😰) before reaching the end.

You can do this.

You will do this.

You will be so thrilled at the end!

Be hearing from you sometime- no specific date!!!!!!

Cheers.

in reply to Madlegs1

Wow, just wow. You’re more calming than Valium. Makes me want to run a marathon, sort of.

Madlegs1 profile image
Madlegs1 in reply to

I'll just have to patent myself!

Thank you!

in reply to Madlegs1

And go public. I’ll buy shares.

Madlegs1 profile image
Madlegs1 in reply to

Oooh- my first fan!😎

tagaxel profile image
tagaxel in reply to Madlegs1

Thanks Madlegs - did you actually do it - I'm afraid it may not help then I'd be back at a higher dose with no relief.

Madlegs1 profile image
Madlegs1 in reply to tagaxel

See reply below!👍

BAK524 profile image
BAK524 in reply to Madlegs1

HI Madlegs, just curious - why were you prescribed fentanyl?

Madlegs1 profile image
Madlegs1 in reply to BAK524

I had fentanyl as pain killer after major spinal surgery. I eventually got off it, but after a year my rls was so bad, I ended up on Oxycontin ,which I have been on for about 6 years.

Merny5 profile image
Merny5

Hello tagaxel, To answer your question, yes. I often had to bump up my dosage during my 15 month withdrawal from a DA due to the severity of the depression and anxiety. I’m sure that you are very anxious to be off of the Mirapex, but TAKE IT SLOWLY. I thought that I would never be myself again, but I have more days now that I feel like my old self. It is going to be a real struggle, but it really is worth it. I wish you the best!🙂

tagaxel profile image
tagaxel in reply to Merny5

So, by going up for a while your withdrawal symptoms went away?

Merny5 profile image
Merny5 in reply to tagaxel

Yes, it was my body signaling that I was tapering too quickly. When I increased, it was no less than 2 weeks.

tagaxel profile image
tagaxel in reply to Merny5

So after you went back up, you stabilized and then went back down? My first decrease went from 0.5 mg to 0.375 mg. I only had a few very bad days. Then, after five weeks I dropped from 0.375 mg to 0.25 mg and I have been in hell for the last two weeks. I am thinking of going back to 0.375 tonight because I can't stand this anymore.

Merny5 profile image
Merny5 in reply to tagaxel

I’m so sorry to read about your torture! Yes, that is the way I did it. It may seem counter productive to keep increasing but you have to listen to your body. Many times I thought that I would never recover. I am so much better now. I still have DAWS Days but they are few and far between. You WILL recover from this.

tagaxel profile image
tagaxel in reply to Merny5

That is great to hear. Yesterday afternoon I went back to 0.375 mg of pramipexole. Around seven hours later the DAWS finally subsided and I was able to sleep for the first time in weeks. This morning I feel very weak and somewhat anxious. I wish there was a way we could communicate on a regular basis.

Merny5 profile image
Merny5 in reply to tagaxel

Check your messages

tagaxel profile image
tagaxel in reply to Merny5

What messages? Is there a message section on this forum? I'm realatiely new here.

tagaxel profile image
tagaxel in reply to Merny5

How long did it take before you felt relief from the withdrawal symptoms?

Merny5 profile image
Merny5 in reply to tagaxel

For me, it wasn’t until I was completely off of the DA that I felt more like myself. My last dose was about 6 months ago. It has taken a total of about 21 months

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