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Husband diagnosed with serious apnea (when on back only) and bad PLMD

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renrenbri +0 points · 6 months ago Original Poster

My husband has had apnea for years, but has just developed PLMD over the past year or so. He just had a recent sleep study, which showed him having 40 apnea episodes per hour while on his back, but NONE while on his side. He also had 0% time in deep sleep. His dr is recommending sewing tennis balls into a shirt to stop him from sleeping on his back. He is hoping this stops his PLMD as well. He has 20 jerking movements per hour. I actually haven't noticed the apnea lately (although he does have awful snoring). However, the jerking is AWFUL! He jerks whether he is on his back, side, or stomach, so I am hesitant to believe that it is being caused by the apnea, since he rarely sleeps on his back at home. Right now, he is taking .25 mg Pramipexole, and has been for about 6 months. He is now starting to have some nights where he jerks even when taking it (Augmentation, even at this low dose?)..... has anyone had successful NON-MEDICATION fixes for this? If not, any suggestions for spouses to be able to sleep with this? He is skipping the medication 2-3 days a week in order to not build up a tolerance, but on those nights, we have to sleep in separate rooms. If this sleeping on his back doesn't help, I think the next step is getting 2 beds that we can pull apart before we go to sleep :(.

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Sierra +0 points · 6 months ago Sleep Innovater

I am not a medical professional and I have no personal experience with PLMD. With respect to the apnea it is fairly normal to have more events when sleeping on the back. It is just a gravity thing with the tissue that is blocking the airway. However, the difference between 40 back and 0 side seems extreme. I have heard of the tennis ball trick, but it sounds like torture to me. Has he tried a CPAP? If nothing else a CPAP will almost always stop all snoring.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

I think the tennis ball was the very first CPAP machine but it fell out of favour because it was too hard to change the settings while it was in use. Which is a shame because it is now available in a "for her" version which is ..... You guessed it! Flouro Pink!

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

Hi renrenbri

I probably do have PLMD and I definately have REM sleep movement disorder and I have always had RLS so I'm sure my poor wife would sympathise with your predicament.

We eventually bought a king ensemble and treat it much of the time as separate beds. Its also good for disposing of grandchildren down the gap in the middle. :)

As with PLMD I may well end up with a mattress on the floor in the middle of an empty room.

I don't believe there is any direct connection to apnea but CPAP is quite problematic because of the risk to the machine from the violent movements and because it's not advisable to take some medications that might hinder our ability to manage the machine and equipment.

I have recently been using melatonin which is supposed to help but so far it has had entirely the wrong effect.

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renrenbri +0 points · 6 months ago Original Poster

What exactly is the king ensemble? 2 XL twin beds pushed together?

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

Sorry renrenbri.

I was just using a term that for me meant that the mattress comes with a simple base but not a traditional bed. What we actually bought was a king size base and mattress set that is in four pieces. (split) The mattresses actually are intended to be zipped together when it is being used as a king bed.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

As per usual there are too many tangled threads here.

Until i became involved with this forum i had naively considered apnea to be a solo venture.

Its obviously a long way from that.

I would like to believe that most sufferers would address the issue far sooner if they were really aware of the impact on their partners.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

There are numerous small steps that could be helpful for your husband many of which he has most likely figured out already like training himself to sleep on his side and on the edge of the bed.

One advantage of detatchable beds is being able to get oversized sheets and loosely tuck them in, effectively restraining excessive leg movements and keeping him in the bed. Unfortunately this does not effectively restrain upper body movement.

Most things that cause loss of sleep are themselves made worse by loss of sleep so anything that impacts adversely on sleep needs avoidance (alcohol, caffeine etc) and problems like congestion and allergies need urgent intervention.

As far as apnea is concerned it is likely that he will need a CPAP machine eventually but if you work together and he is lucky that day could still be a few years down the track.

Although I do have some experience with these problems I can't claim to have found any real solutions so I feel that this is a classic case of the blind leading the blind.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

I am very lucky that the woman I married 38 years ago has extreme patience and is incredibly calm and tolerant.

I'm sure that she has been disturbed endlessly through the years and sported a bruise or two from time to time that I was unaware of, to such an extent that it was only after launching myself out of bed a number of times and breaking things within range of the bed that I started taking precautions, and even then it was mostly because we often had a small grandchild in the bed with us.

Once I saw the dangers I started sleeping on the floor when there were toddlers around and then improvised a bunk for myself in an enclave and eventually we switched to the split king bed and moved the kids out of our room.

Even so I think my restlessness and the regular kicking as well as the more violent movements and the added distraction of the CPAP and the occasions when I am calling out in my sleep are becoming a significant deterrent even for her, with the outcome that she is reluctant to settle down to sleep until most of the night has expired.

It is not sustainable and I'm not sure that any part of it is fixable. Where it goes from here depends on me getting a handle on some of these sleep disorders but it's not looking good at this stage.

I am very reluctant to venture into using dopamine agonists like pramipexole so I guess that I too am desperately looking for alternatives.

If anyone out there can help in any way PLEASE let us know.

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renrenbri +0 points · 6 months ago Original Poster

I guess I should have given some background as well. My husband has probably tried every CPAP mask known to man, but he becomes claustrophobic within a few hours and rips it off while sleeping. He has also had numerous surgeries on his nose, tongue, etc....all unsuccessful (one actually made it worse). It was VERY strange to me that they didn't think it was incredibly odd that there was SUCH a difference in back to side. However, my husband was so thrilled by the tennis ball suggestion vs another CPAP that he gladly took it.

His PLMD and my proneness to major insomnia are just getting to be so difficult. I have heard of the king sized boxed spring with 2 XL twin mattresses. I am guessing separate sheet sets? Has anyone tried this? Does it work? I hate to go to separate rooms, especially in our 40s, but sleep really is important, and I dislike him a whole lot less when he isn't causing earthquake tremors and snoring like a madman all night long lol. I can't see pramipexole as a long term solution to the PLMD, but I'm afraid the dr's next step will be a benzo. Has anyone had their PLMD go away once their apnea was treated? I'm hopeful of this, but as I said, I'm hesitant because he jerks just as much on his side, when he apparently has 0% apnea.

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Biguglygremlin +0 points · 6 months ago Sleep Commentator

I doubt that they usually test for apnea on the side because the first time is so uncomfortable and the patient has such a sense of awareness that sleeping on the back is virtually the only option.

Most snoring is dramatically worse on the back and virtually none existent on the side so I doubt that your husbands numbers are that unusual.

It is important to do all you can to help him but you also need to attend to your own needs because insomnia is a real struggle even without all the other complications.

We bought the bed you seem to be describing and yes we use separate sheets and bedding but keep them together most of the time.

The bedding is still whatever we have, single, double, queen because they still adapt and we hate to waste them but the beds are effectively extra long single which are not easy to find affordable linen for.

If our present room was a bit bigger we would have bought two king singles instead because the linen is easier to find.

They are freestanding and on wheels so if I get restless the wife just edges her bed away a few inches so it isn't getting shaken and life goes on.

I don't want to be the one to say it but there seems to be no real connection between apnea and these other sleep disorders excepting that they make each other worse. There seems to be little evidence that removing one will remove the other although we all desperately wish it were otherwise.

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Sierra +0 points · 6 months ago Sleep Innovater

Other options you might want to try for your husband is a chin strap and/or mouth taping. But if he is claustrophobic that might not work either. The Breathewear Halo is the best chin strap I have found.

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Sierra +0 points · 6 months ago Sleep Innovater

Another option for your husband may be a dental appliance. I have no personal experience with them, but I understand they can deal with mild to moderate sleep apnea. If they can do that, then perhaps the also deal with snoring. You may want to start a new thread asking about it. There are a couple of sleep dentists that check in here, and would probably give you their comments on whether not it may be an option.

As for beds, we just upgraded for a king size. It turned out to be a major problem in getting it up the stairs to our bedroom. In retrospect it probably would have been better to buy two mattresses. If they are the right size I believe you can use king size sheets with them.

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