Ok sleep experts, help a sister out

[Night Elf]

I've suffered from insomnia for a long time. It started where I couldn't get to sleep. I'd be up all night sometimes then sleep all morning. I started meds and was able to fall asleep more easily. After a while on meds, I started waking up early. Since I loved the quiet of the morning, I wasn't bothered by this. I was getting 7-8 hours sleep and was find all day. That went on for quite a while, then it got to where I was waking earlier and earlier. We changed my meds to something that was supposed to help me stay asleep. Nothing has worked. Then it got to be where I was waking up 2-3 times a time a night, staying up 2-3 hours each time. I was still getting 8-9 hours sleep, so I just accepted things as they were while my doctor tried to figure out how to get me back to sleep. Then my restrictive eating disorder changed and I started binging at night. I've put on 20 lbs. in 2.5 months. Now *I'm* the one freaking out. My doctor is still trying to change my meds. My dietitian and therapist are trying to help me with the binging which grew into a daytime thing too. I was sometimes binging twice a day. So my therapist diagnosed me with binge eating disorder. Great. 

So I was unable to leave the bedroom. I had a pallet on the bathroom floor. I'd stay in bed and if I couldn't fall asleep in 30 minutes, I would go to the bathroom and read, going back to bed after 2-3 hours awake. The binging at night slowed down but the daytime binging stayed the same. So with a strong will and coping skills, I've gotten better and binge must less frequently.

BUT sleep is still a problem. I schedule a sleep study. Meanwhile, I'm no longer getting enough sleep. I sleep a total of 3-6 hours a night. If I'm lucky, I can take a morning nap for an hour but that's it. My days are not going well. I'm sleepy and groggy until about 12:00 - 12:30 pm. I changed my work hours to work 12:00 - 5:00 pm, finally quit that job, and now work 1:00 - 6:30 pm at a preschool. I literally am unable to do much of anything in the mornings because I can't concentrate and I feel lethargic. 

My sleep study is in mid-October. It's a take-home study where I sleep with a CPAP machine for 3 nights. How will this help me? My youngest son had a problem of sleeping too much all day and all night, and his sleep study was an overnight clinic where they monitored his sleep with electrodes on his head. Then he had a day study where he had to take a nap for 20 minutes and was forced to wake up for 4 hours then take another 20 minute nap, all day. They diagnosed him with a form of narcolepsy. He takes a med in the morning to help him wake up for the day but has instructions to take 20 - 30 minute naps periodically through the day. Even as a graduate student, he's able to do this. He was hired on as an assistant to his advisor to do research so he got his own office because his professor pulled strings to give it to him. He has a sleep mat, blanket and pillow in his office for naps. He just locks his door and no one messes with him. 

What is going to happen to me? My quality of life is getting poorer because I'm so tired all of the time. At least by lunch, I'm able to drive my car and function. I'm still tired but things are manageable, but this is not how I want to continue living. I have an opportunity to either increase my job to full time hours or begin school while still working beginning in January. It will make for a long day but I think I can handle either one, but it means I have to be doing stuff in the morning! If I'm still doing then how I'm doing now, it will be impossible. I'm so disappointed.

What are they looking for with the CPAP machine? Why are they not doing an overnight study with me?

Let me add that when left alone in the mornings, I can sleep more sometimes and get a total of 11-12 hours and finally wake up feeling rested. But I rarely have the opportunity to get this much sleep.

Edited September 1, 2021 by Night Elf

[sbgrace]

It seems a lot of places are doing home studies now instead of in hospital ones. I suspect it's both cheaper and preferred by many people who want to sleep in their own beds.

I wouldn't want that either in your case. I have had 2 hospital overnight studies and one daytime study like your son.

It seems to me you do need to rule out both apnea or restless leg--either of which could cause wakening--and narcolepsy or sleep phase issues. That latter seems important given both your description and your son's diagnosis. 

What doctor ordered this home test? I wonder if they have an option to do a hospital overnight. Or, perhaps the study they ordered is really just as good. Is it possible they have you start without or go without the cpap the first night and then use it the second for example? Do they monitor restless leg with the home study? I'd want to know. Can you call and speak to a nurse there?

I believe an overnight study will pick up a sleep phase shift, but you would need the day to rule in or out narcolepsy. In my case, they did the overnight first and, then, decided they needed a daytime. 

 

Edited September 1, 2021 by sbgrace

[Night Elf]

1 minute ago, sbgrace said:

It seems a lot of places are doing home studies now instead of in hospital ones. I suspect it's both cheaper and preferred by many people who want to sleep in their own beds.

I wouldn't want that either in your case. I have had 2 hospital overnight studies and one daytime study like your son.

It seems to me you do need to rule out both apnea or restless leg--either of which could cause wakening--and narcolepsy or sleep phase issues. That latter seems important given both your description and your son's diagnosis. 

What doctor ordered this home test? I wonder if they have an option to do a hospital overnight. Can you call and speak to a nurse there?

I believe an overnight study will pick up a sleep phase shift, but you would need the day to rule in or out narcolepsy. In my case, they did the overnight first and, then, decided they needed a daytime. 

 

My regular doctor did the referral but I don't know to what department. I have Kaiser insurance. My son is away at college at the Kaiser facility near him doesn't do sleep studies. He was referred to an in-network affiliated provider which was a sleep specialist in a clinic.

I'm closed to several Kaiser facilities. I've got an appointment with a respiratory therapist but they say it's a class appointment, not a one-on-one visit. The woman who made the appointment for me said everyone is instructed on how to use the machine during the class. Then I get a second appointment where I discuss the results. 

My son's first overnight stay was to rule out sleep apnea. His daytime study was to find out more and that's when they determined it was a form of narcolepsy.

[Harriet Vane]

Just posting to say you’re asking the right questions. Good for you researching and chasing this down. 

[fraidycat]

Maybe they start with the at home test, then refer for further in-center testing depending on the home-test results. It's probably more cost effective to start ruling out the more common issues and progress further when indicated.

My DH just recently (May, I believe) did an at home sleep study. But it wasn't with a CPAP machine. It was another contraption that had electrode things that he had to connect to his chest, his finger, and he had a nasal cannula thingy. The machine was strapped around his chest with everything plugged into it.
 

From the results of that study (mild apnea), he then was given a CPAP loaner machine for 3 weeks to try and make sure it worked for him. It was connected to the sleep center so they could monitor his usage and results before moving forward with a prescribed and purchased machine.

Because his issue was apnea, he didn't need to progress further for more testing. But even with just mild apnea, he slept horribly and woke up constantly for years. 
 

I hope you are able to get some answers and results and get all the tests you need to figure this out.

[Laura Corin]

While you are waiting for more medical advice, is it possible to gradually reduce the length of the periods awake at night? Are you reading a book during that time or are you on screens?

[Tap]

They are trying the CPAP most likely to just see if that solves the issue on its own. If you don't find a benefit from the CPAP they will likely order an at home sleep study or an in-hospital one. In our area, it depends on the insurance if they cover a hospital test or not. I guess they are crazy expensive compared to the at home ones. My daughters have had a few in-hospital ones. My xh had an at home one, and it worked fine to diagnose his apnea. 

[Night Elf]

18 hours ago, Laura Corin said:

While you are waiting for more medical advice, is it possible to gradually reduce the length of the periods awake at night? Are you reading a book during that time or are you on screens?

Definitely reading, and it's always a book I've read many times so there is no way I can get excited by it. I already know what is going to happen so I can put it down anytime I want, even in the middle of a chapter. I used to get on the computer and watch sermons but then fought sleep because I wanted to finish watching.

[Laura Corin]

4 hours ago, Night Elf said:

Definitely reading, and it's always a book I've read many times so there is no way I can get excited by it. I already know what is going to happen so I can put it down anytime I want, even in the middle of a chapter. I used to get on the computer and watch sermons but then fought sleep because I wanted to finish watching.

That sounds good.  I find that an hour is my shortest time reading that allows me to usually fall back asleep. 

[Farrar]

The CPAP is to see if breathing issues are likely the cause of your sleep problems. They're the most common physiological cause for sleep problems. Agreeing with others that they want to rule that out easily and cheaply before doing more - especially with the hospitals so crowded and the risk so high with Covid.

Adding that my kid had sleep issues and got sleep specific therapy for it which helped a ton. Like, they didn't fix his sleep problems entirely, but the therapy massively improved his quality of life and helped him form better habits. Of course, he was young and impressionable, but just saying that therapy specific to sleep can end up being part of your treatment and don't dismiss it out of hand - even though I know you've been through a lot with therapy for other issues and seem to have done a good bit for your sleep already.

[Night Elf]

We have dedicated sleep clinics here that do these tests that aren't attached to a hospital. My ds went to one and I know of one near my home that I will ask about. Our insurance is really good so the expense out of pocket is small.