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Not sleep apnea, so what is it?


#1

I had my sleep study done and did not have sleep apnea. But i had decreased stage 3 sleep and leg movements. I had 74 arousal’s, 55 spontaneous and 17 due to PLM. I had 188 leg movements with a limb movement index of 20.6/hr and PLM index of 7.2/hr. Is any of this pointing to why i dont feel like i have had a refreshing sleep?


#2

Hi olamancini - Please take a look at Web MD under PLMD… It discusses in depth the causes and potential causes of the condition, and the fact that poor sleep and daytime sleepiness are side effects of it. It also talks about treatments.

If you had the sleep study but it was negative for apnea and positive to PLMD, what are they doing to help you? You might also have RLS. Web MD talks about somewhere around 80% of those with PLMD have RLS, although the reverse is not true - I, for example, have RLS, but NOT PLMD… Web MD indicates that the same medication used for RLS is used to treat PLMD. I would just ask that you be careful with whatever they give you. Many of the medications can lead to augmentation, be extremely difficult to get off of, and one of my big issues, cause massive weight gain. Please let us know what they are doing for you?


#3

Hi Caerly,

Thank you for that i will have a look at the website. Is my results under the threshold to be diagnosed with PLMD though? I have just got the results but yet to see the doctor, it took me long enough just to get him to send me for a sleep study. He hasn’t really taken much interest in my sleeping problems and the fact that i am tired all of the time. Just going to the shops causes me to have a sleep when i get back. I am only 22 so this may be why he doesn’t take me seriously.


#4

Hi @olamancini - Have your leg movements been treated? If so, with what?


#5

I suffer from both obstructive sleep apnea and restless leg syndrome. My OSA has finally been successfully treated after 32 years with a new remedy.

That said, my RLS is still an issue I struggle with daily. I am taking Requip (generic name Ropinarole) for it.

I am not sure if this is the same issue you’re dealing with, but if it is RLS I can honestly say that without Ropinarole I wouldn’t be getting any sleep.


#6

I have only just got my results and have yet to see a doctor. I didn’t even know that it was the leg movements causing me to sleep so poorly. Which is why i did this sleeping test to sleep if it was something like sleep apnea. But as i said before i was negative for that it just showed up about the leg movements. Do you think i should be treated for them? And if so which would be the best medication?


#7


#8

I hear you - I will get up feeling sort of “ready to carpe diem” - ha ha. Then my DH (dear hubby) and I will go to BJs, Costco, Wal-Mart and a couple of other stores and I’m beat for two days… Sheesh.

One thing I recommend to people when a doc either won’t listen or take them seriously… Start keeping a diary every day. Record how long you slept, how refreshing it was or was not, how many times you woke up, how well you functioned the next day, etc. The next time you go to your doc, take the journal with you to show him / her. I also usually do a synopsis of the period of time since the last time I saw them and given them that first with the journal pages as a back up… Even if you are under the level (I’m not sure what the PLMD levels are), the journal should get their attention.

The other thing I recommend when all of this fails is of course, find another doctor…


#9

Are there any methods of measuring for Restless Leg Syndrome or other non-OSA sleep disorders at home?


#10

Not that I know of… I argued with my GP for about 4 years that I have RLS and she kept telling me she didn’t think so. When I had my sleep study, I actually called back to ask if they recorded the awake periods to (since I was awake 4 out of the six hours, and that is when they came back to confirm it. It seems silly to me that we can’t self report on this. I could tell them exactly what it felt like and how long it lasted. Good luck with your search for answers…


#11

I continue to suffer headaches and light headedness despite acceptable AHI and mask leakage from my CPAP. I remain discouraged about this.

I’m going to ask for another sleep lab study on my next routine appointment with the sleep doc. We’ll see where that goes.

-John


#12

I’m sorry to hear about your headaches, @jsaltenb and also @Caeryl for the struggles with RLS.

Keep strong and always continue to be your own best advocate!


#13

Thanks Mother T - RLS is one of those mystery diseases like most of the autoimmune stuff seems to be…


#14

Best of luck getting that straight. I have been having headaches for the last 14 months or so with no idea why. It is just one more thing about of many that happen every day.


#15

Thanks, MotherT.

How’ve you been?


#16

Hi there, @ jsaltenb ! Thanks for reaching out! I am well, hope you are too :slight_smile:
I just came back from an amazing conference of the American Association of Sleep Technologists (AAST). I learned so much and heard some very good lectures on sleep. It really was obvious that this group of professionals has the right goals and values for helping patients.

Hope to talk to you soon!!


#17

re: Restless Leg Syndrome

I was diagnosed with RLS more than 4 years ago. My sleep doctor suggested checking my Ferritin level. (Ferritin is the iron stores in your body) Well, interestingly enough, mine was 4.6. Doc said it should be at least 50! It took almost 2 years of taking iron 1-2 times a day, but I got it up above the minimum now. No more RLS. Still taking iron.


#18

Thanks @KimR. Happy to hear the iron has worked for you.

Has anyone else had this experience?