Periodic limb movement

[Missingsleep]

Hello,

I have been working on "improving my sleep" for over 3 years now.  The first time I had a sleep study it was discovered I had mild sleep obstruction. I had my deviated septum fixed and unfortunately, that was not the solution.  I had a second study after the surgery with minimal change.  I have lots of "awakenings".  I was sent to CPAP world, where I have stampeded around in a most hostile state of mind.  I do not like wearing the mask and have tried many.  I had a sleep study--so 3 total --with the mask on...and had the same results as without the mask. BUT it was discovered my limbs moved 198 times.  SO I am now on mirapex-.25 mg to help.  I am still awaking up many times. I do not have trouble following asleep and even when I wake up many, many times in the night-with my CPAP mask ON, I still fall back asleep.  I am not sure what is waking me up. I am now on reflux meds, as well.  Finally getting to my question--sorry, I am just so frustrated.....I am wondering if anyone has had PLM and how they knew it?  What is the proper dose of meds?  I know sometimes it is the rest of an iron deficiently but I just had my iron tested and it was 119.  My doctor says only a sleep study will tell if my PML has improved.  Is it worth it to see what is going on?  Also, if I am not waking up due to my limb movements...what else could be waking me up?  

[HalfAsleep]

Hello,

I have been working on "improving my sleep" for over 3 years now.  The first time I had a sleep study it was discovered I had mild sleep obstruction. I had my deviated septum fixed and unfortunately, that was not the solution.  I had a second study after the surgery with minimal change.  I have lots of "awakenings".  I was sent to CPAP world, where I have stampeded around in a most hostile state of mind.  I do not like wearing the mask and have tried many.  I had a sleep study--so 3 total --with the mask on...and had the same results as without the mask. BUT it was discovered my limbs moved 198 times.  SO I am now on mirapex-.25 mg to help.  I am still awaking up many times. I do not have trouble following asleep and even when I wake up many, many times in the night-with my CPAP mask ON, I still fall back asleep.  I am not sure what is waking me up. I am now on reflux meds, as well.  Finally getting to my question--sorry, I am just so frustrated.....I am wondering if anyone has had PLM and how they knew it?  What is the proper dose of meds?  I know sometimes it is the rest of an iron deficiently but I just had my iron tested and it was 119.  My doctor says only a sleep study will tell if my PML has improved.  Is it worth it to see what is going on?  Also, if I am not waking up due to my limb movements...what else could be waking me up?  

Just curious, 'cos I don't know anything about this stuff.... How did the sleep study describe the movements? "Periodic limb movements"?

I'm partly wondering because I had exactly 0 periodic limbs movements. That would presumably make me a corpse...

[Ockrocket]

I don't know about PLM...

Do you sleep in a dark room? [ as in totally dark ]

I have found that both joint pain/back pain, and light or noise tends to wake me up [ my bedroom is not very dark due to pale coloured blinds and street lighting ].

The issue of the lights has been solved by wearing a good quality eye mask that blocks light very effectively, and is adjustable to fit over the top of the frame of my F&P Eson nose mask.

Noise is something I can't control, but most of the time our street is fairly quiet [ I tried ear plugs, but I suffer tinnitus in one ear, the plugs just make it sound even louder ]. 

The chronic pain is another of those things I "just live with".. but if it is really bad I find a couple of glasses of red wine, or strong pain killers [ as a last resort ] will help me get a fairly good night's sleep. 

Getting good sleep is a combination of managing health and medical issues, and of training the mind to go in to "full sleep mode" for six to eight hours at a time. 

The other thing I had to train my mind to do was to go straight back to sleep if I got woken up when I didn't need to be.
It always used to take me 30 minutes to an hour to fall asleep when I went to bed, and the same again if I awoke during the night... now I can fall asleep in under 5 minutes unless something is really stressing me badly. 

I wish you well in finding the solutions that will eventually lead you to peaceful sleep. 

[Walla Walla]

You mentioned you've had 3 sleep studies. What were the results as far as your Apnea Index Number? It sounds like your suffering from Sleep Apnea. Do you have a copy of your sleep studies? Limb movements are caused many times by the body gasping for air.

[Missingsleep]

Yes....It is labeled Periodic limb movement.  You are not a corpse..."Periodic" refers to the fact that the movements are repetitive and rhythmic, occurring about every 20-40 seconds. Therefore, you may have moved, you just didn't fit the definition.

[Missingsleep]

It was 6.4 --before surgery.  4.2 after surgery and the joke is 6.2 when I was wearing a CPAP mask.  That is what gets me....to wear this uncomfortable mask -that hurts my neck and I attribute waking up from discomfort and STILL having the same number of apneas doesn't make it worth it for me.  Frustrating!  I feel the numbers are way off...I wake up many more times than that grasping for breath. I check the machine sometimes when I wake up and it is saying 5 episodes. I know they think that is OK but if someone poked you awake 5 times in one hour all night long, you would be grumpy too. Then the machine says 1.0 as average for the night.  That is why I am going tomorrow to get a SD card reader so I can use my sleepyhead data from machine to see if there is useful information that may help me.

[chill]

If the mask makes your neck hurt then it is on too tight or you have the wrong mask.  I often have to touch my face to see if I have mine on.

[Walla Walla]

Is it possible that they gave you too low a pressure on your CPAP causing you to wake up grasping for air?

[trish6hundred]

Hi Missingsleep,
WELCOME! to the forum.!
I’m sorry you are having such a rough time with CPAP therapy but I want to encourage you to just hang in there with it. When you ar able to read your #sleepyhead data, feel free to post it here so you can get ideas on where to go next with the therapy.
Good luck to you on your CPAP journey.

[TASmart]

I had PLMD detected in my sleep study, and in the titration study. I am taking 0.5 mg mirapex, which seems to at least reduce my RLS, but as you said, you cannot tell if the dose of Mirapex is helping the PLMD without another sleep study. As far as waking, it is normal to wake briefly several times a night, and the best thing to do is go back to sleep and not worry about it. Easier said than done. IF I recall, my PLMs were causing about three arousals per hour, so it was borderline on treatment, but because I also have RLS at times I thought it was worth a try to see if it helps me feel more rested, but its taken a month or so to start feeling more rather then less rested.