OSA and Restless Legs

Does anyone else have obstructive sleep apnea and restless legs? RLS was diagnosed 10 years ago - before requip. I was prescribed chlonazepam and mirapex. Sleep study back then showed 69 plm in one hour. I was also snoring then too - but no apnea. Now 10 years later I have OSA and have been told that chlonazepam can make it worse. I've tried to stop taking it - tapered off for a period of weeks and actually went three days without it, but I felt horrible. I sunk deep into depression and had all kinds of bad side effects. I started taking it again - 1mg per night with requip and felt much better.

Anyone else out there with both sleep disorders?

Yup, I have both, including PLMD which is related to RLS, although my RLS has pretty much gone away since I began a regimen of Requip and got my ferritin level above 50 due to taking iron supplements.

Hi. I'm with Paul B, as I have RLS and PLMD. And I'm with you in that nearly 10 years ago, even though I had classic OSA symptoms, only the RLS and PLMD showed up on 3 different sleep studies over an eight year period. I am convinced that the OSA was always there, and that my limb movements, even with treatment, kept me awake so frequently I didn't often get a chance to sleep enough for them to catch it. With the number of movements you had during your study, I am surprised that you weren't diagnosed with PLMD also. Do you have a copy of your study?

I have taken Sinemet and then Mirapex through the years. About 2-3 months ago I went off my Mirapex due to finances. I was surprised at how many side effects I was having from the Mirapex. And going off of it gave me some problems, but now I don't think I could go back to that.

I know the commercials promote Requip for RLS, but I haven't heard them claim to help PLMD, so I'm trying to stay medicine free unless I know it will fix more problems than it can cause. Oddly, my PLMD after going off meds is better than it has been in years. I too took iron supplemements to bring up my ferritin level. Someone on here mentioned that while Mirapex helps for a few hours, the breakthru movements were more pronounced than ever. I found that to be true for me. Only a sleep study will tell how badly my sleep stages are disrupted now.

Let us know how the Requip does for you. A few people on here have mentioned using it and getting relief from RLS. Sorry to hear about your difficulty getting off the other med. I have not had experience with it.
Best wishes for a consistent good night's sleep.

Kathy

I was tired last night - I meant to say that I was diagnosed with PLMD and started on the various drugs right away. Boy - I would love to get off of all of these meds. I'm particularly concerned about the chlonazepam. My short term memory is horrible and i just feel groggy most of the time. Of course, now that I've been diagnosed with OSA - it could be that too.

I'm not crazy about requip. I don't think I have as many PLM's at night, but the RLS during the day has gotten worse. I wonder if I could stop taking both chlonazepam and requip if it would help?

Last night was night #2 with CPAP machine and I was able to wear the mask & sleep 8 hours. I don't have the numbers from my sleep study but I was told that I have mild apnea at 5. (avg 5 episodes hr?) My machine is set at 9cm.

cpapme2 wrote:Does anyone else have obstructive sleep apnea and restless legs? RLS was diagnosed 10 years ago - before requip. I was prescribed chlonazepam and mirapex. Sleep study back then showed 69 plm in one hour. I was also snoring then too - but no apnea. Now 10 years later I have OSA and have been told that chlonazepam can make it worse. I've tried to stop taking it - tapered off for a period of weeks and actually went three days without it, but I felt horrible. I sunk deep into depression and had all kinds of bad side effects. I started taking it again - 1mg per night with requip and felt much better.

I am told I have mild RLS and PLM and it stops me from getting a full nights sleep without waking. My Doc also put me on Clonazepam, partly becasue of the PLM and partly because of chronic pain. We still don't know what is the real culprit. I use to think the Clonazepam mad me groggy in the morning, but now I don't notice it anymore. I think I am just sleeping better, which helps a lot of things. I have been on Clonazepam for about a year and a half. During that time I have never gone completely off, but did at one point wean myself to 1/2mg, but then I blew some disks in my neck and ended up back at 1 1/2mg. I am interested if anyone else has had experience with giving it up. My Doc has warned me to reduce gradually, but he also told me it is non-addictive. That is not to say it won't have its side effects if I ever get off of it. He told me at my last appointment that he expected the clonazepam would let me slepp through my mild events, so he he has given me the option to run another sleep study in a few months if things don't get better, just to check to make sure they didn't miss something on the first study. He mentioned the senior tech was on vacation during my first study, so he is not real confident in my results. Funny, they didn't charge me any less with a rookie at the controls?!?

Just to backtrack a little, when my RLS and PLMD were at their worst when first diagnosed, I would have done whatever it took and would have endured just about any side effects to get some relief. Mild cases may not interfere with sleep or with life, but severe cases can be absolute torture. We do what we have to do. I am not advocating going off meds that are helpful. If sleep must be bought with a price, so be it. I do think we need to help ourselves by considering reasonable things shown to be helpful to other sufferers (not snake oils promoted by those with a vested interest). Making sure your Ferritin level is above 50 or 60 is recommended by medical professionals, and is the first thing Cleveland Clinic checked on me (mine was 26).

One sleep doc prescribed for me a pain pill to take when I awakened after the Mirapex wore off, he said to help me sleep thru the movements. I did take a few, but it left me with unanswered questions. Since this med did not stop the movements, were my sleep stages still disrupted and I just wasn't as aware? Also, while I may not have felt the movements as they happened, the resultant ever-present joint and muscle pain was not helped by this "treatment". Fortunately, during the early years I had a doctor who believed in repeat testing to verify effectiveness of medication, and I had the insurance to cover it.

Treatment of dual sleep disorders is more complex than treating OSA alone, as it clouds the subjective "how you feel" standard. Just increasing one's pressure may be barking up the wrong tree. It saddens me to read of people's frustration with what they feel is ineffective cpap treatment all the while getting no followup on their diagnosed RLS or PLMD. Personally, I believe having a machine that monitors the effectiveness of one's OSA treatment should be the cornerstone for those with multiple sleep disorders. It's like methodically working a puzzle - corner pieces are evident, edges still quite obvious, then the rest is not so difficult to fill in. But how many patients are left to play the guessing game while their health continues to deteriorate due to sleep stage disruptions!? Shame on those sleep professionals who prematurely abandon their patients before confirming that all their issues are therapeutically treated, and for not taking the initiative to give them the best tools to help them succeed.

Okay, I'm off my soapbox now. Didn't mean to go there, but this subject is very touchy for me.

Kathy

I definitely feel that chlonazepam has helped me too. My sleep doctor told me though that it can make apneas worse and she would prefer that I take just requip with the CPAP. That's why I tried to taper off - but after nearly 10 years of taking this med, I had some serious withdrawal symptoms. I've been blaming this drug for my fatigue and bad memory - but now I realize that my prior undiagnosed OSA must be playing a part in all of this.

You have an excellent point about treating multiple sleep disorders. We do need to be advocates for ourselves and make sure treatments are effective. Do you use an APAP? It sounds like it's difficult to get insurance carriers to cover this.

Thanks for your insight.

cpapme2 wrote:Does anyone else have obstructive sleep apnea and restless legs?

Yes. I do.

My Sleep Doc seemed to poo-poo the idea about my RLS symptoms saying, "They'll work out after more CPAP therapy, don't worry". I hope he is right, but I betcha $1000 (price of a sleep study outta pocket) that I'll need a retest to find that out, right?

Dang dude.

Here's my numbers:

PLMS Index: 125.8 per hour
PLM w/ Arousal Index: 14.42 per hour

Leg movements did not resolve during CPAP treatment.
AHI was 99.8 per hour
With CPAP AHI was 0 per hour.

Looks like I may need a second opinion on the RLS? I get it kinda bad at night. Today I got on the treadmill, I hope it will help it subside.

I've recovered from RLS!

Mine was bad enough that I took Requip and then Mirapex nightly for about 4 years. In retrospect, I think both those drugs caused rebound.

What seemed to help me:

A neurologist told me that leg pain was the number 1 precipitator of RLS sensations. And a friend with severe RLS (he tries to sleep standing up!) told me that people with achilles tendonitis tend to have RLS, that the two go together.

I'd had Achilles tendonitis for 20 years. Stretching helped a bit but not much. Physical therapy ditto. So while casting about for Achilles tendonitis treatments, I finally tried Z-coil shoes. Within the next 6 months wearing Z-coils daily my Achilles tendonitis pain was history. And then my RLS improved gradually.

Finally one day I lost my prescription for Mirapex and had to sleep without it: Noticed the RLS was no worse, so did that for a second night and had no RLS at all! Since that time I've taken no drugs for RLS and have had extremely little problem with it.

The other thing that seemed to stimulate it was taking mineral supplements of any kind. Weird. But I think that problem, whatever it was, has straightened out because now I can take mineral supplements without any RLS problems.

My RLS now is limited to maybe 5 minutes of very mild discomfort from time to time, maybe twice a month.

(I don't own stock in Z-Coil.)

Gracie

Telly - you do need a second opinion on the RLS/PLM. Your PLMS index is higher than any I've heard of. Exercise does seem to help - I've been doing 30 minutes daily on the elliptical which seems to decrease my RLS symptoms.

I have experienced the rebound that Gracie mentioned too. My internist switched me from mirapex to requip last year. Requip causes me to have more late afternoon & evening RLS problems. It's horrible to try to sit still long enough to take an evening class or watch tv. I have to get up & move. Car rides are horrid too.

I do need to check my ferritin levels again. Lab work isn't back yet - but four years ago it was around 25. Taking iron killed my stomach though.

Tonight will be my 3rd night on CPAP. I usually toss and turn quite a bit - but last night I didn't roll over much at all. Maybe the PLM's are decreasing???

One more thing. Does anyone know of someone who was able to get off CPAP after loosing weight or other lifestyle changes? I'm hoping the possibility is there.

Cpapme2 - I use an apap. Occasionally I download my data but usually I just check my numbers on the screen in the morning. Some cpaps have that capability also.

Telly - According to your results, you have PLMD. Short of that thousand dollar sleep study, a video camera aimed at your bed while you sleep will give you an idea if leg movements are still an issue. But only the sleep study will tell how much they disrupt your sleep stages. Wonder what the price of a Ferritin level is...

Gracie97 - Your experience with achilles tendonitis is interesting to me because the backs of my heels are so tight and uncomfortable, especially when I first stand up and start to walk. I always attributed it to my heel spurs, but I am going to investigate this possibility.

kteague,

The tech @ the sleep clinic just gave me my machine and let me choose a mask. My insurance pays 80%. She said if I don't like the machine or mask I can change it out. I've already called to request the humidifier (for some reason insurance doesn't cover that initially - you have to request it after using the machine). Now, I'm wondering if I should get a different machine as well?

As you pointed out earlier, with two sleep disorders it is more difficult to rate how one is doing. Also - I have lost 20 pounds since Thanksgiving and am continuing the weight loss. Originally - I planned to not use the CPAP machine as my doctor prescribed - thinking that if I just take off the weight I will be fine. My brother convinced me to try CPAP since I'm so tired and his friend loves his machine. Sooo - now that I've spent some time reading posts in this forum - I think I've been in a bit of denial on the OSA.

At any rate - IF I ask for another machine - what would you recommend? What brands are best?

So tired - sorry if I'm not making sense. Off to bed for me.

Cpapme2 - Gosh, my machine experience and knowledge are so very limited. Even among those with lots of experience, some things are individual, like which type they breath most naturally with. I'll have to defer to others on this.

What I can say is if I was just picking preferred features I'd want a new machine to have, they would be:
1) Autopap (can also be used as a cpap if preferred, but I'd want the option for auto available to me)
2) Exhalation relief feature (with the option to use the exhalation relief feature while in auto mode)
3) Data recorded would include more than just compliance data, and I would want to have access to that data
4) At least recognize and report central events

Seek a machine that has the most important features for you. For me, data would be the deal breaker. Don't know your personal situation, but if there are limitations to what features you can get, don't let that dampen your enthusiasm for your OSA treatment.

I drive a vehicle that is entirely no frills with roll-up window handles, manual door locks, etc., and it gets me everywhere I need to go just fine. One day I'd like to upgrade, but even then I will have to prioritize and probably compromise.

Sorry if it seems I copped out on your question. I just wouldn't want to, however well intentioned, steer you wrong.

Kathy

No problem. The features you listed will help. I know I need to do further research to better know whats available. I want to get the best machine for me while I'm at this point in therapy. Thanks!

kteague wrote:Telly - According to your results, you have PLMD. Short of that thousand dollar sleep study, a video camera aimed at your bed while you sleep will give you an idea if leg movements are still an issue. But only the sleep study will tell how much they disrupt your sleep stages. Wonder what the price of a Ferritin level is...

kt,
Thank you so much for that. I think I will have to take charge of this situation. I will look into a Ferritin level screening. If your level is corrected, does it correct the RLS? Well, as I understand it, RLS is a total mystery.

I am a TOTAL video geek, (a video editor by trade) so I welcome the challenge of video taping my RLS. Since the longest DV tapes are 60 minutes, I think I will need to find a way to video tape my while after I am in REM or Delta Phase sleep. I can set a timer for the camcorder set up on a tripod to record my "Hour of Solid Gold RLS Hits".

GOT IT.

Then I bring the footage into Apple Final Cut Pro and will have a look.

I will try to incorporate the footage for my reel. .