Going to my first "sleep doctor" -- any advice?

[FloridaRon]

To all:

I've been suffering with RLS for more than 10 years, but in the past year, the RLS has gotten horrible. The pain on some nights is almost sharp, and I feel like my muscles are tightening so hard that I can't stretch my legs.

More than 10 years ago, a doctor put me on Clonezepan, and that worked for a while. Now, it does nothing.

Believe it or not, I get my best sleep when I have to go see the dentist for my ongoing root canals. Invariably, I'm given Percocet (the only narcotic I can stomach). Just two a night of those, and I sleep like a baby.

I even had my previous doctor (a non-sleep doctor) allow me to try mixing Lunesta (freaky expensive) and Percocet. I would use Lunesta on the nights when I had just pure insomnia and Percocet on the nights when I had bad RLS. The Lunesta worked for a few weeks until I needed to take 3 or more for them to be effective. And a horrible side effect of Lunesta is that you lose all your taste.

But my doctor got cold feet and said he wouldn't prescribe Percocet anymore and that I should simply take my Clonezapam throughout the day.

I have since switched doctors.

During all of this, my marriage has been hurt as I have to lie on the couch virtually every night because I kick a lot. My wife, bless her soul, even thinks she could be the problem. At work, where I am a manager, I have to bring a pillow and literally lock my door and put a sign up not to wake me for two hours. It's embarrassing but I have no other outlet.

Socially, the worst part about RLS is that few people understand it. You get the usual comments -- stop caffeine, work out and, my favorite, just turn your mind off when you sleep.

I've tried it all -- no caffeine, working out, cutting back on any food after 7 p.m.

Okay, now to my point. Next week, I meet with a sleep doctor/psychiatrist. This will be my first visit.

I regularly don't sleep for two days straight. My first impulse is to tell the doctor, "Give me Percocet and end my suffering." But I don't want to sound like a drug junkie.

So help me out. This will be my first visit. What should I emphasize?

-- Ron

[mackjergens]

Welcome Ron,
The very best suggestion would be for you to read everything you can find about RLS. Educate yourself, because most Drs know very little about RLS. You will find on www.rlshelp.org a long list of meds known to help RLS and pain meds are listed. also list of meds that can make rls worse. print those out.. keep with you at all times.

I am always surprised when Drs recommend Clonezepan but yet refuse pain meds, from what I have read and heard from others clonezepan can be just as addictive as pain meds. You might wish to research that also.

Of course most Drs are now recommending the Parkinson meds such as requip, as it has been approved for RLS and many are helped by taking requip, you need to research this also, because most drs again are not educated in how much requip for RLS, and from what I have read on message boards they seem to start you out taking same amounts as for Parkinson, with RLS you require alot less. I am sure there are several on the board that can recommend and inform you about requip and other Parkinson meds. I have never taken them.

I am one of the lucky ones, as my Drs lets me take hydrcodone and Ultram (pain meds) for my nightly RLS. Ultram is suppose to be non addictive pain med you might discuss that one with your Dr and try it. I have had great luck with both hydrocodone and Ultram, I rotate them so I will not have to increase my doseage. By doing that I have decreased my Hydrocodone from 90 per month to 30 per month.

To be honest with you, you will probably have to go thru a period of trial and error, trying several meds before you hit upon the one that helps you or a combination of meds .

You also need to have a ferritin iron level run. Be sure to read about that also, as most drs again know very little about ferritin levels and RLS, for those of us dealing with RLS it needs to be at min. 50-100, and Drs do not understand that.

Here are a few great RLS web sites that are full of info. READ as much as you can before your appt.
www.rls.org
www.rlshelp.org
www.mayoclinic.com (usually Drs will read something from Mayo Clinic web site, so you might try printing off material from that site to take with you to your appt. Be prepared that alot of Drs do NOT wish to read materials you bring. But you can save yourself alot of pain and trying wrong meds by reading and knowing all the ins/outs of RLS.

There is also a long list of OTC meds and prescription meds that you do NOT want to take if you have rls as they will make your rls so much worse. So much to read and KNOW about RLS.

Good luck and keep us postes as to what happens with you.

[Hos]

This Mayo Clinic algorithm is a must read for you and your dr:
http://www.mayoclinicproceedings.com/in ... ef=7907crc

Have you ever tried the dopamine agonists like Mirapex or Requip? They work for a majority of people for at least a while.

Hopefully he'll work with you and will be flexible since, like Mack said, RLS patients tend to be "high maintainance" patients at first since it may take a lot of different approaches before finding the right cocktail.

Please let us know what he ends up doing.

[Sojourner]

FR, Another welcome. Become familiar with the "Mayo ClinicAlgorithm." It's certainly a good road map for discussing a pharmacological approach to treating your rls. The last Nightwalker mailing also contained a piece of literature called "Diagnosis & Treatment in Primary Care 2008." While it is described as information for health care providers--which it is--I think it is a great piece of information to have for yourself. Your can order one through the RLS Foundation or download one through their site: rls.org Click on the medical and scientific information link and then publications and brochures. Also, as a personal but blatant sales pitch, I would ask that you and others who are not already members to consider joining the foundation as they provide lots of good things for the rls community. Anyway, I also think you need to evaluate your meeting with your providers--sort of a post-mortum. Do, they seem knowledgeable. If not, do they seem willing to learn and partner with you. If you do take in a copy of the brochure, how did they react? If you are both comfortable with each other then you are ahead of the game. If not, then you may want/need to try to find providers who meet that criteria. I know others will have more to add. Again, welcome and glad you chose to post. Best wishes.

M.

[FloridaRon]

Hello:

Thank you all for your great advice. I have visited all the Websites mentioned and am "cramming" for my visit next week. I did print out the Mayo algorithm and will show that to my doctor.

Interestingly, my doctor had me answer a 12-page questionnaire that took me three hours to complete. I was joking that the questionnaire could have solved my RLS that night.

My doctor must be really preparing for me -- my first visit is scheduled to take three hours. I gotta admit -- I'm not nervous but I'm certainly curious as this will be my first visit to a doctor/psychiatrist.

If he asks me to lie down on a couch, I will assure him that there's no way I'll be able to fall asleep. (RLS humor.)

By the way, for those of you who asked, I did try Requip. Man, that was an experience. I took the lowest dose the first night and went to bed. About two hours later, I woke up sweating, shaking and with NO IDEA where I was. Thank goodness my wife was there.

I needed about 30 seconds to calm down and figure out where I was. And that happened with just the lowest dose.

I went back to my doctor the next day and gave him the remaining pills.

I'm hoping Mirapex has a much better effect on me.

Even if it doesn't, things looks brighter just because of this discussion board alone. I'm glad to see there are so many options out there.

-- Ron

[Sojourner]

FR, It's great that you are doing your homework and that the dr. is getting input from you. Just don't let em tell you it's all in your head. It's also great that you have support at home. Let us know how it goes. Best of luck.

M.

[FloridaRon]

Well, I just got back from my first visit with a sleep specialist psychiatrist/doctor. I was supposed to have a 3-hour appointment. Instead, it lasted 25 minutes.

The first thing he told me is that he's not that familiar with RLS but would try to help me.

After the usual questions (age, wife's name, how many kids, etc.), he asked me what I thought I should be taking -- and I told him. And that's what he prescribed. I kid you not. I self-prescribed myself.

I'm going to be taking Mirapex (lowest dose to begin with), along with continuing to take my 1-2 mg of Clonzepam each night.

He gave me a whole bunch of free samples of Lunesta as my "back-up" sleep aid for really bad nights.

He did not seem to understand, by the way, that pain comes with RLS.

I told him that in the past, a combination of Percocet and Clonezepam and/or Lunesta worked beautifully.

He immediately jolted back and said he's never heard of Percocet being used as a sleep aid. He said that if anything, Percocet would keep me awake. I told him that I was not alone, and I pointed him to this very board and told him many people have been prescribed a combination of Percocet and something else for RLS.

Interestingly, he wouldn't even consider Percocet as a possibility -- not because it was a narcotic but because he felt it was the wrong narcotic.

But I don't have to worry about that for now. I'll be trying the Mirapex, along with the Clonezepam.

By the way, the advice you all gave me on this board was right on the mark. I was educating my doctor, even having to sit there in silence in his office while he leafed through the Mayo Clinic Algorithm.

Had I not visited this board first, I likely would have walked out of there was big prescription of Lunesta and being told to take some Tylenol.

Believe it or not, I was actually excited for my office visit today. But I left a whole lot less naive and more cognizant that until the medical world catches up, I'm going to have help my doctor be my doctor.

FloridaRon

[Sojourner]

FR, Don't know what to say but there may be perhaps both good and not so good to take away from your appt. I guess my initial reaction is for you to find someone who is more familiar with rls. That may be a bit of a knee jerk reaction. Too bad he did not appreciate the pain aspects of rls. Too bad you did not get the time you thought you would be getting or deserved (but sometime less is better). I guess the important question is whether YOU are comfortable and confident in having this person as your rls provider. How did it feel? Sounds like he was willing to at least read the algorithm, not be offended by it, and willing to "try." That's good. I'm guessing that the Mirapex was your idea and, if so, at least he took your knowledge and suggestion into consideration. That can also be a plus. I think that he has at least given you some idea of his position of "narcotics." I guess it's not unusual for most docs to initially not use Percocet in favor of Vicodin, Ultram or something like that.... at least initially if at all. That probably is also good. Maybe that's what he/she meant by "not the right narcotic." That thinking may also be a plus particularly if he is flexible and not adverse to working through the continuum and algorithm should that be necessary at some point in the future. That may be a good question to tactfully ask or discern at the right time but perhaps before it is needed. It may be that you have the opportunity to help your doc learn and, in time, will have a more knowledgeable provider. If you feel so inclined, you might think of getting him an additional brochure from the foundation (mentioned in a previous post). You could say you appreciate his willingness to partner and learn with you and that the material might be something he would enjoy reading or perhaps just having in the office as it represents the latest rls research etc. Timing and wording are everything.

Again, if you are not comfortable and confident go elsewhere if you can. But, if you think it is worth staying, there may be an upside particularly if he is willing to learn and partner with you in your treatment.

I think the last paragraph of your post is the most important. Continue to educate and advocate for yourself, and don't assume that the medical community knows all it should about rls.

Thanks for helping us with the "mission."

Best wishes that the Mirapex and/or coctail works.

M.

[SquirmingSusan]

Hey Ron, it's great that you could go and educate your doctor like that. Hopefully he'll study the Mayo Clinic Algorithm and get over his issues with oxycodone. Hopefully the Mirapex will work for you and you won't need to address the painkiller issue anytime soon. He is right that hydrocodone and oxycodone can have a bit of a stimulant effect once you're used to them and that it can be hard to sleep when taking them.

It's really hard to find a doctor who knows enough about RLS, but it's a good start to have a doctor who is willing to learn.

[FloridaRon]

Thank you to everybody for all your advice after visiting a "sleep therapist" for the first time.

This is certainly a learning experience for me.

I did take Mirapex last night for the first time and it had some funky effects on me. I started a new topic on the subject to see if anybody else has had similar problems. The topic is called "Just Start Mirapex -- Have Questions."

[ViewsAskew]

Well, I just got back from my first visit with a sleep specialist psychiatrist/doctor. I was supposed to have a 3-hour appointment. Instead, it lasted 25 minutes.

The first thing he told me is that he's not that familiar with RLS but would try to help me.

I am not surprised to hear this, but I can't wait for the day that it doesn't happen anymore. My visit to a neuro was surprisingly similar. The office assured me that any of their people could handle it.....sure.

After the usual questions (age, wife's name, how many kids, etc.), he asked me what I thought I should be taking -- and I told him. And that's what he prescribed. I kid you not. I self-prescribed myself.

I'm going to be taking Mirapex (lowest dose to begin with), along with continuing to take my 1-2 mg of Clonzepam each night.

He gave me a whole bunch of free samples of Lunesta as my "back-up" sleep aid for really bad nights.

He did not seem to understand, by the way, that pain comes with RLS.

I told him that in the past, a combination of Percocet and Clonezepam and/or Lunesta worked beautifully.

He immediately jolted back and said he's never heard of Percocet being used as a sleep aid. He said that if anything, Percocet would keep me awake. I told him that I was not alone, and I pointed him to this very board and told him many people have been prescribed a combination of Percocet and something else for RLS.

Interestingly, he wouldn't even consider Percocet as a possibility -- not because it was a narcotic but because he felt it was the wrong narcotic.

But I don't have to worry about that for now. I'll be trying the Mirapex, along with the Clonezepam.

By the way, the advice you all gave me on this board was right on the mark. I was educating my doctor, even having to sit there in silence in his office while he leafed through the Mayo Clinic Algorithm.

Had I not visited this board first, I likely would have walked out of there was big prescription of Lunesta and being told to take some Tylenol.

Believe it or not, I was actually excited for my office visit today. But I left a whole lot less naive and more cognizant that until the medical world catches up, I'm going to have help my doctor be my doctor.

FloridaRon

You deserve a big pat on the back! It is so hard to take all of this in - that the doctors often do not know best, that we have to advocate for ourselves, and in some cases, even self-prescribe. Many of us have a very hard time doing that. But, you did it. Congratulations, even though it probably doesn't feel all that good, if you know what I mean - it just shouldn't be that way.