Introduction and a question or two

[mfisher1967]

My name is Mark and I live in South Houston, Texas. I work at one of the large oil refineries as a supervisor in the Operations department. I am not an Urban Cowboy, but it was a decent movie and some of it was filmed just a few minutes from my house.

I just turned 41 and about 8-12 months ago I started having RLS symptoms in the early evening, but mostly at night. I found myself jumping out of bed so frequently that my wife wondered if I ever slept at night. She would often get frustrated and end up sleeping on the couch in our living room. My sleep patterns suffered and I would go for days with only 1-2 hours of sleep at night, eventually passing out from exhaustion and then the cycle would repeat. Needless to say this was not a healthy existence.

My mother visited earlier this month and I mentioned that I thought I may have RLS. To my surprise, both she and my aunt told me that they were taking Requip for RLS and that my great uncle had RLS as well. This was news to me, but it was clear that RLS was present in my mother's side of the family.

I visited my doctor last Friday and told him that I had RLS. I also described my sleep patterns and family history. He acted as thought RLS was a made up condition and basically told me to try an OTC sleep remedy. I told him that I would like to try Mirapex and asked for a prescription. He gave me a sermon about how drugs like Mirapex alter the brain's chemistry and begrudgingly gave me a prescription. The dosage is .125 mg at bedtime for the first 5 days, after which I am to take .250 mg for as long as needed. I can up the dosage from there, but only under the direction of my doctor.

Mirapex is working, but I feel like I am walking around in a drug-induced haze. Mirapex knocks me out cold at night and I am sleepy all day long. There was a severe thunderstorm last night and I don't remember any of it! I am tempted to reduce the dosage by 1/2 to see if that helps, but am wondering if these symptoms will pass if given more time. I am concerned that Mirapex is not the right drug for me, but wanted to ask for help here before attempting to change course.

I should mention that I was addicted to Xanax and Klonopin a few years ago. My addiction nearly destroyed my marriage and almost cost me my job as well. I was able to end my addiction to Benzo's, but can't take them anymore out of concern that I may relapse. I am also a recovering alcoholic and will hit 18 years of sobriety (alcohol only of course) in July this year.

Any help or suggestions will be greatly appreciated.

[Aiken]

Greetings, Mark...

First and foremost, find a different doctor. Yours is not sufficiently on your side in this matter, probably due to being very poorly informed. If it's your family doctor, that's not unusual. When it comes to RLS, an ignorant doctor can cost you significant quality of life. It's great that you're a strong advocate for yourself, and got treatment from him in spite of his reluctance, but there's no reason you should have to be struggling that way. Find a sleep specialist (usually a neurologist) who treats RLS regularly, and I think you'll find it'll be an entirely different experience. Given that you're in a large city, there's bound to be someone who knows what they're doing. Someone here might be able to suggest a name if you ask around.

As for your dosing... it's certainly common for certain initial side effects of many drugs, including Mirapex, to fade over the first few weeks as your body and brain adjust. You could also, as you said, go back to the starter dose of .125mg. Some people do say they can get away with the starter dose. If you're that strongly affected by .250mg, you may be one of them. There's no reason to take more than you need. Just know that if you do step back down, you may experience some temporary rebound after having taken the higher dose for a while. It'll pass, though.

If it were me, and I'm just a layman who's read a lot of stories here about Mirapex and Requip, I'd definitely try the lowest dose until I was absolutely sure it wasn't adequate. The worst that happens is that you suffer a little longer before getting relief.

That's about all I can offer in the short term. I'm sure someone with more of a clue will come along soon with more complete and accurate information about drugs like Mirapex and Requip.

[Neco]

Sounds like you have a delicate situation on your hands. I can relate somewhat, being a recovering narcotic addict. The one thing that may be most important for you is to possibly find a doctor who is more receptive to your condition.

It's a hard choice to make for some folks, but you're not the bad guy here.. Mirapex can cause those side effects in a lot of people (my first dose made my RLS 2x worse for 24+ hours) and you are right that it may not be the correct medecine for you..

You might want to give Requip a try, but be warned that they are also from the same family of drugs and could have similar effects, or even different undesired effects.. It all comes down to giving it a shot though, to know for certain..

Unfortunately if neither of these works for you, your options may be severely limited.. As someone with a substance abuse problem you are going to have to try hard to find any doctor willing to even try (let alone regularly prescribe) a narcotic medication.. It is unfortunate as narcotics are widely regarded as the best effective treatment when medications like Requip and Mirapex have failed.

Your only option would likely be to look for methadone if you had to go down that route. You might also be able to get Tramadol as it is not a controlled substance (but take it from me, you can risk addiction to it). I take methadone for my RLS and have been on it for 7 months now.

For all the trouble I've been through with Vicodin, Oxycodone, Tramadol, and even Codeine (tylenol #3) methadone has been a god send, and I wish I had pushed my doctor for it sooner.. I got real lucky with my doctor as he has put up with some serious abuse on my part. Unfortunately most doctors see red when it comes to painkillers of any kind these days, let alone for "this made up RLS thing"..

You could also try Neurontin or Lyrica.. but they both can produce similar brain fog / severe drowsiness as well..

If you do try lowering your dose I hope it works out for you though and you can continue out.. Please be careful and watch out for augmentation.. It is a serious side effect and can result in permanent increase in your symptoms if gone untreated.. If you start noticing your symptoms coming on earlier and earlier than usual, and they become more severe (you need considerably more medication than before) get off Mirapex immediately.. It will be hard, but your best bet will be finding a doctor who will listen and is willing to try other medications as well.

Hopefully it won't come to that.. Hope I haven't scared you any, as I just wanted to give you info.. It's going to be especially hard dealing with doctors, if they know you had benzo addiction, but I urge you to be honest no matter who you talk to about prescriptions.

There are lots of helpful people here who will be able to answer questions though, so don't be afraid to ask our opinions.

[SquirmingSusan]

Hi Mark, and welcome to the forum. I have to agree with Aiken about your doctor. He doesn't sound knowledgeable about RLS nor does he sound like he's interested in learning about it. You'll probably need to find a different doctor sooner or later.

The doc is right about one thing though. These meds DO mess with brain chemistry. Of course they do because it's our brain chemistry that's the problem in RLS. Mirapex is a "dopamine agonist," which means that it acts like dopamine in the brain. But it is much longer acting than the dopamine that our own bodies make.

As Aiken said, do be careful about sticking to the lowest possible dosage. I don't know if you're on the starting dose of .125 or if you've worked up to the .25, but it sounds like it's working well enough that you could try cutting the dosage in half. These drugs are very powerful and have historically been used to treat Parkinson's disease. Now they're being used to treat RLS, but it seems like the doctors don't quite know how to dose the meds for RLS yet. It seems like often we're given too much, and that can have some bad consequences. But if you monitor the dosage and take the smallest effective dose, it could be a good medication for you for a long time.

One of the problems with the dopamine agonists is that they can cause "rebound," which is a worsening of RLS when the drug wears off, and also a condition called "augmentation." Augmentation is a worsening of the RLS that occurs relatively quickly. The symptoms come on earlier in the day and are more intense. Take if from those of us who have had augmentation that you don't want to go through it. For me, I'm sure it was caused by the doctor raising my dosage beyond what I needed to control my symptoms.

If you look in the "New to RLS" section of the message board, there is a sticky post at the top that has all kinds of information. One thing that's good to find is the link to the Mayo Clinic Algorithm for the Treatment of RLS." It talks about a variety of possible treatments, including benzos (probably not a good option for you), the dopamine agonists like Mirapex and Requip, anticonvulsants like Neurontin and Lyrica, opioids, and some others.

We also have a section of the message board that's devoted to non-pharmaceutical treatments. There are a lot of good ideas in there as well. You'll probably want to get you ferritin levels tested, which is a measurement of iron stores in the body. Men don't usually have as much trouble with low ferritin levels as women, but it's possible and low ferritin is linked with worsening of RLS in many people. You might also want to take a look at other things that might be making it worse, such as medications (antihistamines, antinauseants, antidepressants are notable) or foods. For some reason ice cream seems to set off RLS in a lot of people. Also caffeine.

Well, I've written you a short novel already, so I'll stop. Feel free to ask all the questions you'd like.

[mfisher1967]

Wow, thanks for the fast responses to my post!

I am currently taking .250 mg of Mirapex and am considering cutting back to .125 mg. Mirapex knocks me out cold, much like a large dose of Benzo's used to. This initially made me concerned about getting addicted to Mirapex. I feel no compulsion to abuse Mirapex, however, so that concern may be unfounded. I like the way Mirapex settles down my legs, and am enjoying sleeping like a log, but don't want to be tired all of the time. I may try to maintain a dose of .250 mg for a few more days and then cut back to .125 mg if the tiredness persists. I will reevaluate if the symptoms continue even after I cut back my dose to .125 mg. In the mean time, I will try to locate a doctor that is more sympathetic to my condition. I should have changed doctors years ago, as this was the same doctor that used to write me prescriptions for huge amounts of Klonopin. I will keep everyone updated no matter what I decide.

Thanks again!

[ViewsAskew]

Congratulations on the 18 years...and on today. Each day is all that counts.

Mirapex isn't addictive in the sense of the other drugs. Neither are any of the drugs in its class. So, no worries there. The one thing to worry about is that this class can cause some addictive behavior. It doesn't happen in a high percentage, but just be on the lookout. If you start wanting to do things - eat, have sex, gamble, etc. - in ways you don't normally do, then immediatly raise the red flag.

As someone whose doc told me to take more than I needed, I heartily add my agreement that I'd cut the dose regardless of whether it's making you sleepy. You just don't need more than whatever it takes. And, for some of us, it doesn't take much. I could have controlled mine with 1/2 of a .125 tablet, but the doc had me take more. Taking more that you need may increase the risk of the medicine causing the augmentation and rebound that others mentioned.

If you are still sleepy, but the legs are under control, give it about two weeks or so. It takes awhile to adjust. If you're still sleepy after two to three weeks, then consider REquip. While it's in the same class, it's a different drug and often people experience them differently. There is also a patch, Neupro, you can try. It is hoped that it will not cause the rebound/augmentation issues, but it's new, so no one really knows yet. Because it's new, it's expensive and isn't approved for RLS yet, though that should happen within the next year.

By the way, I'll guess that the doc wasn't up on RLS so he didn't test your ferritin levels. I think someone recommended reading the sticky post about managing your RLS (in the New to RLS section) already, but if not, please do. From changing your diet to adding iron, there are many things you can do that could take the RLS down a notch so it wouldn't bother you nightly. If it bothered you 4 or less nights a week, you could also try Sinemet. It works in 20 minutes and it great if you don't need it regularly.

Welcome. Hope you find what you need here.

[maddielouise1]

Hi Mark,

I'm amazed that a doctor would actually say that, although I don't know why. How can he ignore valid research and data? Obviously, he's never looked at the results of his patients' sleep studies or listened when they described the pain they were in.

Anyway, I now take 1.5 mg. of Mirapex (along with a small dose of Klonopin), both only at night, which controls my RLS/PLMD enough to allow sleep. My movement during the day has decreased significantly as well. I do recall being tired during the day when I first started the Mirapex and the Klonopin, and it lasted a week or so, so maybe things will look up for you with a little more time.

Good luck!

Maddie