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Questions for my daughter - College Student - lac47 - 01-24-2017
Hello,
I haven't been on the boards in quite a while, as my CPAP journey is going very well, thankfully. I now have questions for my daughter who is away at college. I'll try to be brief.
My daughter has hypersomnia. Sought out a sleep doctor at U of M to look for circadian rhythm issues or nontypical narcolepsy. She can't stay awake nor drive in the morning; most awake times are mid-afternoon to late into the night. No insomnia. Can nap or sleep all day and is still tired. This has been going on for at least 6 - 7 years. Can't blame college...
After 1 PSG study with a Pes (to look for latent or obscure apneas) -- no apneas found. MSLT Daytime nap study done as well. Narcolepsy could not be determined at that time. She had 40% REM sleep overnight; normal is 20%.
Just completed 2nd PSG study, no Pes. Awaiting all the "official results" at Feb. appointment. However, my daughter texted that her dr. called and said she has OSA; 10/hour in 250 minutes sleeping on her back. Was told after first study (assumed the Pes study already determined) zero apnea episodes.
Per my daughter's texts - "dr said to try a CPAP before I see her. Did not meet narcolepsy strict criteria. I will get one (machine) that self
adjusts in a nearby city. She is prescribing one for insurance to approve."
I am awaiting the doctor to return my call.
It was not mentioned as yet, but wouldn't she need a titration sleep study? That was crucial, obviously in determining pressures properly, but also to deal with mask issues and claustrophobia, etc. Has anyone received a machine on their own without a titration sleep study? How are pressures determined without one? Also, I need to confirm she's getting one of the machines recommended here; specifically a data-capable machine with humidity.
Does self-adjusting machine mean Auto CPAP?
Any other pertinent questions to ask?
I appreciate your insight. I cannot imagine having to deal with all the issues we know can and do arise when starting on a CPAP, while at college. Luckily not in a dorm room, so that's a plus... Main goal is fixing this abnormal disruptive sleepiness!
Thank you,
Lynne
RE: Questions for my daughter - College Student - kwhenrykerr - 01-24-2017
I would try to be sure her doctor request one of the Auto CPAP with full data. If no pressures are set by the doctor I would start at 5 to 15. That seems to be a common setting. If she finds it is not enough air she could raise the lower setting. Be sure she gets the link to this forum so she can learn to setup her own machine.
It would do her good to read some of the post here.
Your a good mom to seek help for her.
RE: Questions for my daughter - College Student - lac47 - 01-24-2017
(01-24-2017, 05:01 PM)kwhenrykerr Wrote: I would try to be sure her doctor request one of the Auto CPAP with full data. If no pressures are set by the doctor I would start at 5 to 15. That seems to be a common setting. If she finds it is not enough air she could raise the lower setting. Be sure she gets the link to this forum so she can learn to setup her own machine.
It would do her good to read some of the post here.
Your a good mom to seek help for her.
Thank you for your help, kwhenrykerr, and kind words!
She is buried in reading right now, so she won't have time to read much here, but yes, it will be helpful to have access to set up her machine. I will pass along what I learn here.
RE: Questions for my daughter - College Student - Russatrice - 01-24-2017
Could she go through a DME who will lend her a machine while distance monitoring the therapy? They should also be able to let her try different masks until she finds one that works for her. I think that would be better than buy equipment right away and try on her own.
RE: Questions for my daughter - College Student - Beej - 01-24-2017
If there is any family history of autoimmune disease - ex rheumatoid arthritis, lupus, fibromyalgia, thyroid issues (levels were checked, right?), diabetes, etc. It could be worth doing some of the autoimmune tests, ex thyroid antibodies, antinuclear antibody, sedimentation rate, and so on.
Worth a discussion with the docs. Autoimmune illness may co-exist with sleep disorders, too.
RE: Questions for my daughter - College Student - lac47 - 01-25-2017
(01-24-2017, 09:29 PM)Russatrice Wrote: Could she go through a DME who will lend her a machine while distance monitoring the therapy? They should also be able to let her try different masks until she finds one that works for her. I think that would be better than buy equipment right away and try on her own.
I agree Russatrice.
Things are going better than I hoped. DME contacted her & me; their rep went to her college today (!) and set her all up with an Air Sense10 Auto Set and nasal pillows; trained her on usage, etc. Pressure range is 5 - 20 (20 is very high!). They will return to her school for a different mask or for any issues. Dr called me back and wants to see if it helps her sleepiness significantly or not; I get the impression it will be a trial run...? I didn't ask if we are buying the equipment...I should find out. I know our insurance covers at 100% though, thankfully. With the auto set, it was explained it will automatically adjust to the pressure she needs, not higher, so a titration study can be skipped. Happy with the plan at this point. We'll see how the first night goes for her! She just wants to feel better, so she's motivated. It helps that she has seen me do well with my CPAP and is at least familiar with it.
The DME is fantastic so far!
Thank you for your input!
RE: Questions for my daughter - College Student - lac47 - 01-25-2017
(01-24-2017, 10:48 PM)Beej Wrote: If there is any family history of autoimmune disease - ex rheumatoid arthritis, lupus, fibromyalgia, thyroid issues (levels were checked, right?), diabetes, etc. It could be worth doing some of the autoimmune tests, ex thyroid antibodies, antinuclear antibody, sedimentation rate, and so on.
Worth a discussion with the docs. Autoimmune illness may co-exist with sleep disorders, too.
Hi Beej,
This poor kid has had so many tests...plus has terrible anxiety over blood draws (as in needs meds for them). Have checked some things; she does not have RA and thyroid is fine. She is mildly hypoglycemic. She and I have fibromyalgia, so she has constant body, muscle and joint pain. ANA and sed rate...those are good to think about for the future. You almost want to find something (very minor!) to at least be able to treat it.
I appreciate your input!!
Lynne
RE: Questions for my daughter - College Student - PsychoMike - 01-25-2017
It may also be worth it to remind the Doc to look at the rest disruption index. She may not be having a lot of apneas, but if her RDI is really high, it could be something like upper airway resistive syndrome (UARS). UARS is like sleep apnea but with the body catching the blockages far faster so it doesn't register as sleep apnea....though with a 40% REM sleep rate, that's less likely.
Good luck to her in this journey and hopefully the PAP therapy helps.
RE: Questions for my daughter - College Student - kwhenrykerr - 01-25-2017
Thyroid problems ? Goiter ? I just posted a question about that. It may get some information.
This mass will compress the trachea (windpipe) and esophagus (swallowing tube) leading to symptoms, such as coughing, waking up from sleep feeling like you can't breathe.
RE: Questions for my daughter - College Student - Beej - 01-25-2017
I just responded to the goiter question on that thread.