getting a doctor to understand

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ViewsAskew
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Re: getting a doctor to understand

Post by ViewsAskew »

wabbit wrote:Ann,

I am currently taking Mirapex. In August it will be a year and I am aware of the possibility of augumentation and heart failure. What names of opioids work for use for WED. I would like to have an idea of what mediciations work for WED in case I have to eventually change. So far Mirapex is working well. Whatever I take will be up to my neurologist due to the epilepsy.


It's really tough for many of us. The dopamine agonists fail in enough cases that we have to have alternatives. In Polar Bear's signature, there is a link to a document that has a treatment algorithm and shows the progression to try.

The best book you can buy - that details ALL meds used - is The Clinical Management of Restless Legs Syndrome, by Hening, Buchfuhrer (the Dr B we mention) and Lee. It's being rewritten, but not sure when it's due to come out. Amazon usually has used copies at a reasonable price.

In it, they outline all opioids, from codeine through morphine. They rank them - low, moderate and high potency. You use different ones based on the reason you use them. To treat augmentation, you usually need a high potency, such as methadone. To treat regular moderate symptoms, you might be able to use a moderate opioid, such as tramadol or hydrocodone. For severe symptoms, you are almost always looking at the high potency ones. Most doctors that will use them have favorites. A lot of doctors like methadone because it is long lasting, well-studied, safe for pregnancy, and so on.

These are not without concerns! If you have other breathing disorders, they may be contraindicated. They can cause dependence (usually do). And, in rare cases, they can cause addiction. We've heard of very few addiction cases, thankfully. I got dependent on tramadol VERY quickly, but took methadone for a few years and stopped it cold turkey, so you never know what will happen when you stop. They can cause lethargy and daytime fatigue. For some of us, they energize us instead of putting us to sleep (boy, I don't like that!).
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.

badnights
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Re: getting a doctor to understand

Post by badnights »

Like Ann, I get energized by the opioids - I started with low-potency codience, but it
it's just as bad with high-potentcy hydromorph contin (an extended-release version of hydromorphone). Since the disease itself is also comonly association with hyperalertness, I had to add a mild sleeping aid to counteract the opioid awakeness.

The problems with opioids that I am aware of, in order,
1. are doctors not wanting to prescribe them,
2. side-effects (a wide variaety, any of which is possible in a given patient), and then I suppose
3. addiction, which is less common among WED/RLS patients than in the general population.

The benefits are an almost-guaranteed relief from pain and the obnoxious assault of this disease. Pretty good.

The meds are discussed in detail in that book Ann mentioned. Doctors love it too, it's succinct and well-organized. They list the various opioids, and classifiy them as low, medium, and high potency, plus give the equi-analgesic dose for each as compared to a set amount of morphine (equal amount of pain-relief). They give the chemical names and comomn US brandnames, and point out mixtures (that are NOT recommended for WED/RLS) of opioid plus acetominophen or opioid plus iboprofen.

As long as you're taking Mirapex, be observant for changes in your behaviour - in increase in impulsive shopping, (or gambling, or sex, or eating) - that could indicate onset of Impulse Control disorder, and

be alert for signs of augmentation (more in my signature link). Some people go for years on Mirapex.... but at least 75% end up leaving it eventually, becuase of augmentation. Another 75: 75% of visits to RLS/WED specialists are about augmentation. Clearly the message is not getting out to GPs - watch out for people on Mirapex and other dopamine drugs, and warn them of the signs .
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.

jakesmom
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Re: getting a doctor to understand

Post by jakesmom »

What can you do when you are adamant about getting off Mirapex and your doctor is equally adamant about keeping you on it? Aside from doctor shopping, as I am about to try doc #4.

ViewsAskew
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Re: getting a doctor to understand

Post by ViewsAskew »

I had to doctor shop. Took me several tries. And, it's ridiculous that it is like this!

What is her reason - I'm curious.
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.

badnights
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Re: getting a doctor to understand

Post by badnights »

jakesmom, from all I've seen of your posts, you need in a desperate way to get off the Mirapex. I can't recall if there was something she was waiting for first? your shoulder? I might be mixing your story up with someone else's/ as Ann said, what is her reason? and in answer to your question: doctor shop. If she is not acknowledging the seriousness of the impulse control issues and the heart problems, you need someone who does. HAve you written a succinct summary of your situation to Dr B? Some GPs and specialists are open to reading his responses and considering his advice.
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.

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: getting a doctor to understand

Post by jakesmom »

Badnights,

You are correct about the shoulder. Only, as time in physical therapy progresses, I am learning its my neck and spine more than my shoulder.

The neuro doesn't think 3mg of Mirapex is a lot. She feels if it is working, keep with it, if it stops working, up the dose. She has let me try Neupro and Horizant to try to get me off Mirapex, but I couldn't handle being constantly nauseous or falling asleep at work, so it was back to Mirapex at a higher dose. I have been on klonopin and Sinemet for well over 5 years and have been told to stay on those along with other meds.

Thank you for reading. I know I probably write way too much.

I have written Dr. B. I have the emails he sent me along with a copy of his personal notes regarding WED treatment. Getting someone who is willing to read it, well, therein lies the problem. I don't know if he would be willing to specifically address my drug issues and doses in an email that I could take to a new doctor. I feel strange about asking him since he has never met not seen me.

rthom
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Re: getting a doctor to understand

Post by rthom »

That is the problem with our dr'ing systems as they are--the dr's are woring for themselves in their own businesses and that means they are only as moivated as they wish to be to get it right. Of all the proffessions to not have much in the way of safeties--our health and life, the gvnts pik to fall down on the job, geesh. :( Around here there was a large study done recently and the results were published in the newspaper paper, so ours was rated a C (apparently it was the lowest rating you could get) because of how bad they do---our death rate is 10% higher than average here in our hospital. For those of you who remember I've complained quite a bit myself about problems here--bad life and death problems that ended in death in our family and hard times for me a lot. So I personally get it--the frustration of dr's that would rather you just keep on what you are taking then deal with the harder task of finding something else and supporting you through the transition.
P.s. Example---we currently have a young lad in our family (nephew) who has a cofirmed tumor in his brain that is causing , bad headache that won't subside, sight problems, dizziness, sickness etc. and it's going to be over a month before he can get his MRI in order for them to see if they think it is malignant or not.
Really--a month???? If it's bad won't he likely be dead--or have much more damage??? Well this is our new healthcare system it seems. Also because he just turned 18 the childrens hospital that was nearby would not even see him in the emerg the night he was brought in. So he went to another hospital got an exray--took forever and they told his parents yup, he's got a brain tumor and sent him home---is this normal now? Sorry for the rant. But back on the point--feel free to be frustrated and feel hopeless --but just keep bugging somewhere someone had to get it, you'd think.

P.s.s. About the kid, we have a history of brain bleeds and literally about a week ago had a guy die of brain cancer, so it's in the family and that you would think would motivate the dr's. Sad really--no empathy it seems, these days for the people they are working on.

jakesmom
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Joined: Sat Feb 09, 2013 11:01 am

Re: getting a doctor to understand

Post by jakesmom »

Rthom,

That's horrible treatment. Are you in the US?

I would think telling someone they have a brain tumor and it will be a month before we treat it would border on malpractice.

rthom
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Re: getting a doctor to understand

Post by rthom »

No, I'm in canada--ontario

badnights
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Re: getting a doctor to understand

Post by badnights »

toronto isn't canada

jk :D

really, that's horrible.
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.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: getting a doctor to understand

Post by rthom »

Yah, I'd be much better off in Toronto....

What's horrible is that our mp's are patting themselves on the back about it....

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