Help please

Hi cpaptalk.com! I am a CPAP user of over one week. I am using a self-procured Autoset 10 without medical supervision because the relevant healthcare wait times are long where I live. I am hopeful that I can for now receive some guidance from the good people on this forum. To this end I will present diagnostic information in this post.

My concerns when writing this post are two-fold:

• I would appreciate help in adjusting the settings of my CPAP machine to suit my personal needs, whatever they may be.

• I have yet to sleep a full night with the device because I wake up at night, every night, and take the mask off. I think the biggest reason for my choosing to take the mask off after waking up is because of an unpleasant phenomenon I experience where the CPAP machine causes my ears to feel full, as if on an airplane. This effect is barely noticeable on pressure level 4, but the higher the level the more noticeable and off-putting it is. I have seen these symptoms discussed in a worrying light on another forum with reference being made to a study that apparently touts CPAP pressure as potentially harmful to the ears: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4896658/ . Is there anything I can do about this ear fullness I experience? Is it harmful?

Diagnostic information presented in this post:

• Linked here https://imgur.com/a/EHuf5OP you will find a few sets of OSCAR data from my CPAP treatment so far.

• Below you will find medical journaling that came out of my lab sleep study. This sleep study served as the basis for a doctor diagnosing me with sleep apnea and advising me to try CPAP treatment. I have translated the medical journaling from my mother tongue as best I could. Additional information pertaining to my sleep study, in the form of graphical representations and additional in-depth statistics, is available upon request.

Sleep study journal 19 april 2023:

Good quality for EEG and respiration.
Patient goes to bed at 22.20 and rises at 6.
Sleep latency 21 minutes.
Total sleep time 6h 15m.
Sleep effectiveness 88,9 %.
Wake after sleep onset, 26 minutes.

Sleep stage division:
Superficial sleep (N1) 2 %
Mid-depth sleep(N2) 46 %
Deep sleep (N3) 35 %
REM-sleep 17 %.

Respiration:
AHI 9,6
ODI 5,3
Mean saturation 95 % and lowest saturation 88 %
AHI (sleeping on his back): 23. Sleeping on his back he gets long apneas, 20-30 seconds, and some are central apneas.
AHI (not sleeping on his back): 3,9
PLM-index 9,9

--N.B. cpaptalk.com: additional information pertaining to this sleep study, in the form of graphical representations and additional in-depth statistics, is available upon request --
- Masenko


Doctor's diagnosis (translated):

The patient has signs of mild sleep apnea, but gets long-lasting central/mixed apneas when sleeping on his back. He usually sleeps on his side, but may have a tendency to shift to sleeping on his back during sleep. The question is whether or not his apneas contribute to the daytime tiredness he experiences. The tiredness may be multifactorial. Considering the nature of his apnea I nonetheless want him to try CPAP treatment. Other than the apnea his sleep is good. He's young and not overweight, with tonsils of normal size.


Thank you for reading. I hope you can help me with my concerns!

Just noting your PLM index of 9.9 and wondering how informed you are on what this COULD mean. Periodic limb movements When a patient has both sleep apnea and periodic limb movements, a sleep study can give an incomplete picture of one's issues as these disorders can mask each other. Both of these cause arousals, and as they vie for prominence, whichever sensation (the breathing obstruction or the limb movements) is the strongest at any given moment during the night will beat the other to causing arousal. Hence, a count of breathing disruptions could have been higher if the movements had not pre-empted some apnea events. And the limb movement count could have been higher if the breathing arousals hadn't pre-empted some movements. The hard part is one of the disorders must be controlled to get a more full picture of the other disorder.

It is not uncommon for people with PLMD to also have RLS. For me, I had a heightened sensitivity to touch, and the simplest things irritated the heck out of me. Much of my struggle wearing the CPAP mask actually had little to do with the mask. I just didn't want anything touching me. It may turn out that that you'll have some investigating to do to achieve your personal best sleep. I just wouldn't want you to become discouraged with CPAP when it may not be to blame for all your problems. I would suggest you continue to seek help fine tuning your CPAP treatment. You can address the movements as you go along.

While sleep apnea can cause random limb movements with the struggle to breathe, it is not usual for periodic limb movements to be caused by respiratory efforts. On the long shot you are an outlier, maybe using CPAP will resolve your limb movements. That would be your best case scenario. If not, you might want to get another sleep study while using the CPAP to see what your legs are doing. Or you could set up a camera to film your feet and legs while you sleep to get an idea if a problem is evident. Till then, a few general things... Make sure you are nutritionally sound in those things that support nerve and muscle function, such as magnesium, Vit D, calcium, B vitamins. Get and keep your ferritin level up near 100. A much lower number is considered normal, but people with movement disorders are thought to need a higher level within the normal range. There are meds commonly used to treat PLMD but please do your own research before choosing to take them. They are not to be taken lightly. Best wishes going forward.

Hi kteague, thanks for your reply! The doctor who reviewed my sleep study hadn't brought up my limb movements. It would be unusual to omit that my limb movements are a cause for concern. In case they are I'll be sure to bring it up with a public healthcare sleep doctor as soon as the healthcare system allows me to. Thank you for bringing my attention to this. Do you think you could help me with my CPAP settings too?

Masenko wrote: ↑

Sun May 28, 2023 11:05 am

The doctor who reviewed my sleep study hadn't brought up my limb movements. It would be unusual to omit that my limb movements are a cause for concern... Do you think you could help me with my CPAP settings too?

Unless times have changed, having a doctor fail to recognize the possible significance of limb movements in conjunction with sleep apnea is sadly not unusual. Some sleep clinics are sleep apnea focused and outlier cases get overlooked. I had four sleep doctors and 2 neurologists over the years, and even the last one whose curiosity led to answers was learning through my case. You may have to be your own advocate and not accept one doctor's dismissiveness as your final answer.

As far as CPAP, I am a user with a bit more than basic knowledge but I count on the astute core group here for therapy guidance. You'll get much better help from them.

Good luck going forward.