Uneducated Doctors!!

[LisztLover]

Wow! I’ve been weaning off Mirapex for a short while now from 2mg/day. I went from 1mg down to 0.5mg and have been sleeping really well. When I tried to go down to 0.25mg, I had the worst night of my life. The Psychiatrist prescribed 0.25mg tabs for only 1 month, expecting me to wean off the DA that quickly! I called the nurse this morning to request 0.5mg tabs and she told me that the Gabapentin that was prescribed was supposed to take the place of Mirapex and that she would ask, but not to expect it because that’s why I was started on Gabapentin. Can you believe that? Like Mirapex is some kind of narcotic or something! Their lack of knowledge is so frustrating for me! I just want to scream! You can’t wean off Mirapex in a month. That damn nurse is always grouchy and testy! Atlanta’s sleep center through Emory University is calling me...

[Graham3196]

Do you ONLY get RLS after eating Soy sauce?

Thats an easy one to fix.

You might try gluten free soy sauce but I think you must be eating lots of other gluten.

Some types of soy are not tolerated by some people.

[Graham3196]

Sorry this was meant to be a reply to Lash65 but I messed up somewhere?????

[LisztLover in reply to Graham3196]

Lol!! No problem!

[Brica in reply to LisztLover]

Several years past I stopped Mirapex because of the side effect of compulsive gambling. I stopped cold turkey and it was horrible, nights with zero sleep. It is not the same for everyone. Finally after years of trying most of the meds available, I found a Neurologist through the RLS Foundation site; am now on iron supplementation with excellent results. Hope you find someone who knows how to treat RL. Brica

[LisztLover in reply to Brica]

Thanks so much for replying! Thank God I’ve never had a compulsive gambling problem and I used to be on Abilify also. The withdrawal from Mirapex is horrible to say the least. I’m looking for somewhere to go and it will probably be Atlanta, Georgia which is around 3-4 hours away from me. I could also look into Charlotte, NC which is closer to me. RLS is the worst issue in my life right now and I will find some appropriate treatment if it freaking kills me...

[Brica in reply to LisztLover]

I understand what you are experiencing, I told my husband I thought I was going to die. I was planning to go to Johns Hopkins, but was fortunate to connect with a Neurologist recommended by the RLS Foundation an hour away. He was truly a lifesaver; the first Dr. who “listened” to me. Do not give up. Brica

[LisztLover in reply to Brica]

Thank you ❤️

[Joolsg]

That’s very frustrating. DAWS is very, very real & the medical profession need to realise how hard it can be.

I hope you can find a doctor who will support you properly by prescribing opioids during the withdrawal period.

[Mona23]

Actually, it is possible to wean off .2mg’s of Mirapex in a month. Your experience could be because Gabapentin may not be the right replacement for it, for your system. It didn’t work for me a few years ago when I tried to go off Mirapex. It was horrible. The last bit of of Mirapex seems to be the hardest, and I can't imagine doing it without a good replacement. I’d suggest talking to your dr again - in person if possible. I’d also suggest you talk weith a neurologist or a PCP instead of your psychiatrist - no matter how people including dr’s misread the DSM, RLS is not a psychological condition. Find an internist or PCP who will work with you on this, and let your psychiatrist help you with whatever else you need her/him for. Some people consider Mirapex lightly addictive, but mostly I think your psychiatrits’s nurse said that because it’s counter to your goal of being off Mirapex, to raise the dose again.

[LisztLover in reply to Mona23]

0.5mg isn’t raising my dose as I started the weaning process at 2mg. I’m stuck at 0.5mg and experienced hell when I went down to 0.25mg. I work full time and cannot survive nights like that when I go any less than 0.5mg. My GP doesn’t get it at all and my Psychiatrist has been more helpful. I’m not fond of the Neurologists in my area or the internists, either. I’m going to hold out for treatment in a bigger city than the one I live in. I’m looking for a specialist... I’m quite frustrated!

[Dougg]

I had difficulty in weaning off pramipexole (generic Mirapex), with horrible insomnia as I downshifted the dose. Based on my experience and postings here, I don't think that doctors generally understand how difficult it is to get off that med once you're on it. I started taking kratom and was able to drop my last pramipexole dose entirely with no side effects, and the kratom mitigated my RLS symptoms better than the pramipexole.

Best of luck in your healing journey.

Doug

[LisztLover in reply to Dougg]

Yes! Kratom is helping, but am now terribly afraid of dropping my dosage without something better to help the withdrawal symptoms. I just don’t think I can make it through any more nights like that! I felt so desperate that I would have done or taken anything I was offered! Thank you for replying...

[Dougg in reply to LisztLover]

Hi LisztLover.

I hear you. Sometimes the pain and despair can be so overwhelming, especially in the middle of the night when we so desperately want to sleep. My experience of this, which sounds similar to yours, has really helped me understand why sleep deprivation has historically been used as a torture method.

I have a few suggestions:

(1) Take it slowly. If you've stabilized with kratom and some level of Mirapex, I suggest staying at that level while you get some needed nights of sleep to feel stronger, if you can. Then, when you feel ready, drop the Mirapex by the smallest amount you can - maybe just part of a pill - and then see if you can stabilize at that new level for a week or so before reducing the dose further.

(2) If you're being rushed through this by an unresponsive doctor or nurse, seek another, more enlightened, practitioner. Based on my experience and that of other contributors to this site, Mirapex is not an easy med to withdraw from. Also, as you've probably read on this site, the level of understanding of physicians about RLS and the associated meds varies all over the map. If your current practitioner isn't serving you, find another one. It may take some trial and error, and you may have to educate the doc somewhat, but there are understanding and caring practitioners out there.

(3) Know that you are not alone. Many of the people contributing to this site know the kind of middle-of-the-night desperation that you're experiencing, and we are here to support you.

You can do this.

Sending you warm and healing thoughts.

Doug

[Yakester]

My doctor had me wean off pramipexole in 2-3 weeks. The result was disastrous!!! I went into a tailspin including depression and anxiety which completely derailed me. I have since gone to a sleep specialist and he does not believe that my symptoms were a result of stopping the pramipexole. I have sent him links to read about this. Don’t know if he has read them. Seven years ago I was abruptly taken off pramipexole and had the same disastrous symptoms but was not as educated about RLS and meds and side effects. I didn’t know what was going on. It was life changing and not for the better. I’m now scared to death about all the meds for RLS. Currently my internist has prescribed OxyContin. I also use some marijuana cream that has both cbd and thc. I rub it on the bottom of my feet. This has worked for over a week. I’m praying that it will continue to work for me.

[LisztLover in reply to Yakester]

Yes! Do what works! 🙂