introducing myself. very much in crisis

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sford0202
Posts: 2
Joined: Sat Dec 29, 2018 8:49 pm

introducing myself. very much in crisis

Postby sford0202 » Sat Dec 29, 2018 11:11 pm

Hi all,
I have had RLS all of my life, as has my father, as did his mother. In previous years, I have had to take a medical leave of absence from work because of spending over 25 days without ever getting deep sleep. Recently, I traveled for work and forgot my medications, and went 68 hours without sleep before checking myself into a hospital. Right now, however, my RLS is pretty well controlled and I am getting quality sleep. I take Mirapex, Gabapentin, and Tamezepam. I have iron infusions regularly, and those help a great deal. We keep my ferretin levels quite high. That's all working.

The problem is that I have developed a very severe case of compulsive shopping, and my family is in financial jeopardy. II don't have compulsive or impulsive behaviors with gambling, food, sex, or anything else, but the shopping is out of control. I even do it unconsciously in my sleep, so that packages arrive that I have no memory of ordering. I am extremely vulnerable to targeted advertising.

I don't know how to navigate this. I've written to my wonderful sleep doctor to let him know how bad the situation is, but I wanted to reach out here, too, in case there are people out there who can help point me in the right direction.

Is there a relatively normal life and adulthood after Mirapex, or am I looking at a profound disability? Does cognitive therapy help with compulsive/impulsive disorders when they are caused by dopamine agonists?

Thanks for being here.
sford0202

stjohnh
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Location: Palo Alto, California

Re: introducing myself. very much in crisis

Postby stjohnh » Sun Dec 30, 2018 12:16 am

Sford, welcome to the RLS community. You will find here lots of people who have had problems similar to yours, even more importantly, they "get it." Most people without RLS just don't really understand how devastating this illness can be.

The compulsive shopping is due to the Mirapex. It is well known, but unfortunately can be a devastating complication of treatment. I have a bit of it, I order stuff on Amazon that I don't really need. Happily, Amazon has a good return policy and I don't spend much money on it. Certainly you need to get off the Mirapex. What dose are you currently taking? If it is a low dose it can be stopped abruptly, if higher it will need to be tapered.

Once off the Mirapex, there are a number of options, but most likely you will need to change your primary treatment to an opioid. Several are used, but Methadone is probably the most commonly prescribed. And YES! there is a life after Mirapex. Opioids have their own set of problems, but the one most bothersome to RLS patients is the difficulty getting a doctor to prescribe them. You may need to see an RLS specialist if that ends up being the way you need to go.

Be aware that tolerance and addiction are much less of a problem for people with RLS taking opioids than for those using them to get high or for chronic pain. Additionally, the dose needed for most RLS patients is much lower than the doses used to treat chronic pain.

Cognitive Behavior Therapy (CBT) is not what you need. You need to get off the Mirapex.

Again, what dose are you currently taking?

Stopping the Mirapex is likely to be very difficult. It can be easier if your doctor will at least prescribe a temporary dose of an opioid to help you through a miserable week to several weeks while you get off the Mirapex.

Temporarily, maybe you can give your phone and credit cards to a relative so that you don't get into a worse financial situation than you already have.
Blessings,
Holland

Rustsmith
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Re: introducing myself. very much in crisis

Postby Rustsmith » Sun Dec 30, 2018 1:01 am

As Holland has said, your impulse control issues are almost certainly due to the Mirapex. Impulse control is one of the serious side effects that is listed for Mirapex and is a reason to get off of it ASAP. Call your doctor's office first thing Monday and ask for the first available appointment, even if it means having to accept an emergency walkin appointment. Do NOT let them put you off. Explain that you are experiencing a serious side effect of the Mirapex and need to speak with the doctor ASAP. Although this is not a matter of life or death, it is one that risks both your life savings as well as the integrity of your family.

Also, patients on any dopamine agonist (the others are Requip, Neupro and Carbodopa/Levodopa) who experience impulse issues are also at risk for DAWS (dopamine agonist withdrawal syndrome). This causes permanent neurological damage that cannot be treated, so do not stop taking the Mirapex on your own and do not let your doctor tell you to stop taking it cold turkey. You need careful, doctor supervised guidance for stopping. If your doctor does not have experience in this area, politely demand that (s)he either get instructions from an expert or that you are referred to someone familiar with treating a patient at risk of DAWS.

As Holland said, you will probably need an opioid either to treat your RLS post Mirapex or temporarily to help you with the Mirapex withdrawal. Your doctor may be hesitant to provide you with an opioid. Therefore, make a copy of this paper that was published last January at the Mayo Clinic by most of the RLS experts from around the US. Take the paper with you to your appointment, but only give it to the doctor if (s)he tells you that opioids are not appropriate for the treatment of RLS. https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: introducing myself. very much in crisis

Postby badnights » Sun Dec 30, 2018 6:37 am

I don't know how to navigate this.....Is there a relatively normal life and adulthood after Mirapex, or am I looking at a profound disability? Does cognitive therapy help with compulsive/impulsive disorders when they are caused by dopamine agonists?

I won't beat it to death, since Steve and Holland have covered the bases, but the only way to navigate it is to stop the Mirapex. Cognitive therapy won't help, as I understand. But the good news is that the problem should resolve completely once the Mirapex is out of your system. The sooner you get rid of it, the better.

I can talk for a long time on how to navigate the withdrawal but I will just say, for now, that you need to do it.

I agree with Steve that you have to treat your situation almost as an emergency, don't downplay it at all; your behavior is being profoundly altered by a drug you;re taking, and you need to get off it ASAP. I differ from Steve in his attitude towards DAWS, which as I understand it is unlikely unless you;re on a very high dose (what dose are you on??). I don;t think anyone fully understands how to avoid DAWS, although tapering from high doses seems to help.

Do be careful not to directly ask your doctor for opioids; that could easily be miscontrued. First, learn as much as you can about withdrawal from DAs (From these places:
do some searches on this board,
check out the Foundation's publications at https://www.rls.org/member-portal/publications (you have to be a member to get at most of them, but it;s worth it), especially download their Medical Bulletin for healthcare providers; and
check out the paper by Buchfuhrer in the link below my name under every one of my posts.)

Then bring some of that material to your appointment, with the relevant parts highlighted
(1) highlight something about combination therapy (combining a medication like gabapentin with an opioid or a dopamine agonist) for after the withdrawal, and
(2) highlight the parts about how to manage withdrawal.
Ask him/her to please check those bits and tell you what he thinks of them, and what should you do. Make sure you ask for his opinion of the stuff. He is likely to say it;s legit, since it is. As Steve has said, don;t present the paper he linked to (on appropriate use of opioids for WED/RLS) unless he' outright refuses... you might not get to that point in one appointment.

Your best friend is going to be knowledge (and patience as the doctor learns about something that is probably very different from anything he has worked with before).

Keep in touch on this journey! And don't be reluctant to talk about this horrible problem that your medication is causing. Nor about how horrible your symptoms will be when you stop it, and how much you will need help.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

sford0202
Posts: 2
Joined: Sat Dec 29, 2018 8:49 pm

Re: introducing myself. very much in crisis

Postby sford0202 » Mon Dec 31, 2018 2:12 am

Thank you, Holland, Steve, and Beth,
Your responses are tremendously helpful. I have cut the mirapex down to .5 mg per night, but I'm not able to cut it any further. So hopefully tomorrow my doctor can set up a plan to get me off of it entirely. In the meantime, my family is working to cut me off from access to accounts so that we can stop the bleeding. Thanks so very much for being here.
Sara

legsbestill
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Location: Dublin Ireland

Re: introducing myself. very much in crisis

Postby legsbestill » Mon Dec 31, 2018 6:18 pm

I had this exact problem and it resolved completely the day after I took the last mirapexin. 0.5mg is a high dose of mirapexin - twice the current recommended upper limit for rls as I understand it. You will likely need opioids to help withdraw from the drug and will need to be strategic as to how to get your medical carers to prescribe them - as the others have said. Good luck.

sleepdancer2
Posts: 207
Joined: Sun Jun 29, 2014 7:46 am

Re: introducing myself. very much in crisis

Postby sleepdancer2 » Tue Jan 01, 2019 4:20 am

I commend you for being open with your family and allowing them to intervene. Usually those with addictions prefer to keep their secrets so as to be able to continue the behavior. I had a simlar side effect on Mirapex. Once I got off the med it resolved. Unfortunately I stopped the med abruptly and developed neuro issues from it. It wasn't DAWS though. Just because of my experience I recommend better being safe than sorry. Getting off the meds was probably the second hardest thing I've had to survive. More difficult would have been continuing in augmentation. I went off Mirapex cold turkey before I had the benefit of the collective wisdom here, and probably suffered needlessly. I wish I would have sought some other med to help me through it. Getting off turned out to be the best thing I could have done for myself, because once I was on the other side of it, I found my baseline symptoms with my RLS and PLMD plaguing my legs were able to be managed with a TENS Unit. Turned out the severity of my symptoms was greatly caused by augementation on the med. Hopefully you'll find something that works for you.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: introducing myself. very much in crisis

Postby ViewsAskew » Tue Jan 01, 2019 10:11 pm

I can only imagine just how difficult this has been for you and your family.

So much great advice so far. I hope you've found it helpful. Please let us know if you have any questions or need any other information.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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