2nd Sleep Study shows RLS

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NJDav
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2nd Sleep Study shows RLS

Post by NJDav » Mon Jun 08, 2015 10:32 am

Well CPAP had being quite well for me and had even sorted my Restless Leg Syndrome too. That was till about 10 moths ago when out 9f nowhere I started pulling mask off in the night and getting as little as 0.2hrs a night on the CPAP.

After pushing GP and the CPAP clinic who want to just keeping giving me different masks to try I finally managed to get them to do another sleep study.

Went Saturday night and managed 6.8hrs, which I haven't done for a long till. Couldn't believe it, thought they would come back saying no problem. Luckily the camera saw me kicking the living daylights out the sheets and the bed.

So now just waiting for letter to see my consultant, who will discuss the next course of action, ie. Medication for RLS.

Anybody have any experience of this and what kinda meds I may be given.

Thanks for reading

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Sonnyboy
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Re: 2nd Sleep Study shows RLS

Post by Sonnyboy » Mon Jun 08, 2015 11:15 am

Hi,
Do you have RLS alone or do you also have PLMD [periodic limb movement disorder]?
I have both but can not help you with medications because I am still learning and searching.
kteague, on this forum, knows a lot about both. Also do a search on this forum.

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NJDav
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Re: 2nd Sleep Study shows RLS

Post by NJDav » Mon Jun 08, 2015 11:29 am

That's a good point, just quickly over the phone they said I had restless sleep so could be either or both.

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Re: 2nd Sleep Study shows RLS

Post by SewTired » Mon Jun 08, 2015 11:47 am

Without a bunch a details, if you have just RLS they will likely start with doing blood tests to see if you are low on iron or magnesium or simply have an imbalance. I have been taking 325 mg of iron daily, even though the anemia is resolved and now I'm going on a combo of magnesium, zinc and some other mineral. I have to hold off until I see my GP next week because he took me off zinc for something in the past.

I can't tell you much about current meds as most have not been out for very long. There's an old one, but it was found not to be effective over the long term. Just good for those going on a plane trip, really.

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Re: 2nd Sleep Study shows RLS

Post by kteague » Mon Jun 08, 2015 3:48 pm

You are getting some good input. I can only strongly encourage you to try to avoid meds until you've done all you can to address any possible contributors. BTW, the recommended treatments for RLS and PLMD run parallel. First, get your ferritin level checked. The current thinking on ferritin levels for people with such movement issues is it should be in the upper range of what is considered normal. I've had 2 docs recommend mine to be close to 100. Yes, dopamine agonist meds tend to have decreasing effectiveness, with increasing dosages becoming problematic with side effects and/or augmentation. Having a lower level of ferritin is thought to increase the risk of the meds becoming problematic. That's why I think getting the ferritin level right first just makes good sense. Other iron levels can play a role, but I'm not informed on those. While you're getting your blood drawn, it wouldn't hurt to make sure some other levels are healthy too, particularly magnesium and vitamin D. And the B vitamins are important to nerve function too. You'll also want to try to figure out if there are triggers you can eliminate or reduce, and what self-help efforts might make a difference for you. Not everyone with PLMD needs pharmaceutical treatment - depends on the severity and how much they disrupt sleep stages, and if the above steps provide any relief.

It would be no surprise if using CPAP is hard for someone with untreated limb movement issues. When I first started on CPAP my nerves were in such a frazzled state, even the touch of the headgear felt maddening. And I didn't realize that for some, once CPAP treatment is working and we can sleep without the constant arousal of apneas, it can give other sleep disorders the freedom to more fully manifest. If your study was without CPAP, there's a chance whatever numbers it gives you about limb movements is not telling the full story of what happens when on CPAP. Good luck going forward.

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Re: 2nd Sleep Study shows RLS

Post by NJDav » Wed Jun 17, 2015 12:05 pm

So I finally got a letter from the hospital today, was hoping it would be my appointment to see the doc.

Turns out it's just a brief explanation of my sleep study and tells me little more than I got over the phone.

It does say RLS but also that later in the night I snore even with my mask on. They suggest that turn one of the facilities on my machine OFF may help with this. I'm at a loss as to which feature this may be and the letter does not expand on this, just saying that this will be sorted when I see the doc.

Anybody got any idea what feature they might mean, I have a F&P Icon ASAP with built in humidifier.

Thanks

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Re: 2nd Sleep Study shows RLS

Post by sleepwiggler » Wed Jun 17, 2015 1:00 pm

I have RLS and PLMD and I was diagnosed with this years before OSA.I would be so tired and pace the floors until 3 or 4 AM before I could sleep only to get up 2 hours later, this went on for about 5 years before I sought help from my doctor. I take more medications (dosage) than I have seen recommended but I seem to have some control at night. I would follow Kteauge's advise eliminate other causes before seeking medication. My primary doctor eliminated most of the causes and then had my sleep doctor evaluate me and he ran a few more test and they cannot figure out what causes my RLS and PLMD. I still do not feel rested and get very tired and sleepy shortly after being up and it took years for me to address this with my doctor but we are working on that now. Hang in there and hopefully it get better.

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Re: 2nd Sleep Study shows RLS

Post by StuUnderPressure » Wed Jun 17, 2015 1:46 pm

Have been on RLS medication since when I first started CPAP in December 1998
I currently am on Mirapex 0.5 Mg.

Works like a charm IF I take it about 3 hours before bedtime.

Have NEVER had daytime augmentation

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Re: 2nd Sleep Study shows RLS

Post by kteague » Wed Jun 17, 2015 2:21 pm

NJDav wrote: Turns out it's just a brief explanation of my sleep study and tells me little more than I got over the phone.
You really do need the detailed copy of your report.

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Re: 2nd Sleep Study shows RLS

Post by NJDav » Wed Jun 17, 2015 2:43 pm

Thanks for your replies guys
I'm finding the thought of the meds a bit worrying as one of the side effects can be excessive daytime sleepiness.

Have you had any issues with this, it's worrying as I drive a truck for a living and an issue like this I could be saying good bye to my lively hood.

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Re: 2nd Sleep Study shows RLS

Post by StuUnderPressure » Wed Jun 17, 2015 2:56 pm

NJDav wrote:Thanks for your replies guys
I'm finding the thought of the meds a bit worrying as one of the side effects can be excessive daytime sleepiness.

Have you had any issues with this, it's worrying as I drive a truck for a living and an issue like this I could be saying good bye to my lively hood.
Excessive daytime sleepiness will be much worse if you can't sleep because of your RLS

I think that your employer & industry would much rather have you control your RLS and they would react negatively if you did not follow the therapy to do just that.

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Re: 2nd Sleep Study shows RLS

Post by SewTired » Wed Jun 17, 2015 5:20 pm

My RLS has worsened and it showed that during the titration, I was waking up (yeah, no kidding). My problems are worse during warm weather until we turn a/c on. Already did the iron thing. That isn't enough this year. I am now trying a combo supplement of magnesium, zinc and calcium in addition to regular vitamin. If it doesn't improve by my appointment next month, he'll start me on a med. Since the RLS starts by about 8:30 pm, I can actually take before bedtime and any residual sleepiness caused by the pill will be gone. The thing is, there are multiple causes and trial and error is really the only thing that works.

Just an FYI. He said there is a percentage of those who are overweight or obese whose RLS mostly goes away as they lose weight. I'm hopeful of that, but not counting on it since it seems to hereditary in my family.

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Re: 2nd Sleep Study shows RLS

Post by kteague » Mon Jun 22, 2015 1:19 am

NJDav wrote:I'm finding the thought of the meds a bit worrying as one of the side effects can be excessive daytime sleepiness. Have you had any issues with this, it's worrying as I drive a truck for a living and an issue like this I could be saying good bye to my lively hood.
YES! When taking Mirapex I started having sleep attacks, even at the very low starting dose, that came on without warning and rendered me helpless to fight them off. Very scary stuff. I had to quit driving till things improved. Not everyone has that response. I suggest you be diligent in your CPAP use, and do all the things you can to help your RLS regarding testing and nutritional support. I have been very successful in treating my legs with a TENS Unit. No side effects. May not work for you but is worth a try.

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Re: 2nd Sleep Study shows RLS

Post by NJDav » Fri Jul 03, 2015 8:56 am

Finally saw my consultant today.

He said my sleep study showed that my machine F&P Icon auto with humidifier was causing some of my apena due to the sensa wake feature where it lowers the pressure to allow you to fall back to sleep. Well this was having the opposite effect on me.

Secondly the RLS, he has instructed full bloods, be seeing as I only had them done 4 months ago he said he was going be those results to prescribe ROPINIROLE 0.25MG this will build to a daily dose of 2mg over the next fortnight. If bloods come back any different and means these drugs are a no no he will call me, if they show a lack of vit d zinc or magnesium he will get my gp to prescribe.

I'm hoping this will be the start of some good sleep at last.

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Re: 2nd Sleep Study shows RLS

Post by kteague » Fri Jul 03, 2015 3:41 pm

Hope so too. Be mindful that a normal ferritin is not good enough. Needs to be near 100 even though much lower is considered in the normal range. Not all docs are in tune to that. Good luck, and let us know. There is a forum on the RLS Foundation's web site that discusses the current thinking on acceptable levels of Ropinerole. When I took it, higher doses were thought to be ok. Not so much these days. I'd be leery of any increases before knowing that your ferritin level is where it should be. Maybe you'll be a lucky one and the small dose is enough to improve your symptoms. Do let us know. Always interested in what works for others. Good luck.

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