@ M1

Iris L.

You have often mentioned that sleep fragmentation is a part of AD. As you may know, I don't have AD, but a diagnosis of cognitive impairment nos. Lately, I have been having worsening sleep fragmentation. I may sleep for one to three hours, or not at all during the night. Yet around 6 am, I will fall asleep for another five or more hours. I can sleep my mornings away, wakening at 1 or 2 pm in the afternoon, sometimes even later. At these times, I can sleep through, usually without wakening.

In past years I had been on many sleep aids, including Lunesta for about ten years. But I weaned myself off because I thought it might be impacting my cognition. Now I am using time release melatonin, which my neurologist suggested.

My cousin, who does not have dementia, tells me that she sleeps poorly too. I know older adults sleep poorly. My question to you is, does my sleep fragmentation sound normal for the older adults in your practice? Or do you think this could be related to cognitive impairment? I'm on Exelon patch and memantine, and I am 74. I also tried bright light therapy without noticing any improvement.

I'm not asking for medical advice, but for an impression. I've been reading about non-24 circadian rhythm disorder. It's uncommon, but I cannot find anything else that fits my issue. Do you have any suggestions? I have seen two sleep doctors but they only want to talk about sleep apnea and CPAP. I am still searching for a solution and for a better quality of life a more functional daytime life.

Iris

M1

Iris i wish i had an answer for you; i don't off the top of my head. It's a very interesting neurological question though. I think you'd have to look really really hard for a very sophisticated doc- neurology or otherwise- who would be interested enough to research it with you and try different combinations of things. Maybe a geriatric psych would be another possibility . let me think about it, i can always message you too....

Iris L.

Thank you for responding, M1. I spent more time reading about non-24, and I don't think I have that, because it is so connected to severe light deprivation. I think I have irregular sleep-wake circadian rhythm disorder. That's a mouthful, isn't it! It can be due to brain trauma. I know I have an abnormal MRI reading with scattered hyperintensities. I'm going to do more research. I found a registry of sleep doctors, I just have to find one that is interested in circadian rhythm disorders. But I'm still going to do my own research. A proprietary blend has been suggested by other members, I might try it.

Iris

MN Chickadee

Iris, how has the CPAP been going for you? Do you check the app each morning to see how many apnea events you had? Also check the machine to see the max pressure it used; if it is hitting the high end of the current setting you may need to increase pressure. I have a cpap myself, as does my father. I had to do A LOT of monkeying around with it to find the right therapy. I was surprised how much trouble shooting I had to do without help. I am guessing there are many senior citizens who give up on it because the tech is too much. My apnea is light to moderate, my father's was extreme (like 50 events per hour.) According to his Apple Watch he was getting zero deep or REM sleep until he got the cpap. Even though he thought he was sleeping he wasn't really, and it led to irregular heart rhythms and fatigue and an odd wake/sleep cycle all day. Even after he got the cpap, the pulmonologist had the settings way too low and he was still having like 20 events until we increased the maximum pressure and now he has zero or maybe 1 and is sleeping much better and on a schedule. Mask leak was also an issue until we found the right one. Had to invest in a few different styles. If you have pets make sure to change the filter on schedule too so the air is clean. Just throwing that out there in case it could help the situation.

Iris L.

Hello Chickadee. I suspended using the CPAP after the sleep doctor told me that there was not much apnea on my sleep study. However, when I read the written report, although there was one apnea episode, there were several hypopnea episodes with desaturations. Also, because the air blowing on my face while I lay in bed staring at the ceiling, unable to sleep was so disturbing, I just gave up on the CPAP. But, I just reviewed the sleep study report since you brought this up, and I see that the CPAP did resolve the hypopnea. So I probably will have to resume, at some point. But I have to be able to fall asleep consistently before I resume CPAP.

When I used the CPAP, had no feedback from the doctors as to adjusting the settings.

I posted on the Friends thread that last night, for the first time in many nights, I fell asleep and slept through the night, for eight hours, hallelujah! I used a combination of aromatherapy, suggested by Lane Simonian, and valerian, suggested by jfkoc, double strength chamomile tea and prayer. Everything worked to give me a good night's sleep. This morning I awoke, got out of bed, and I felt alert and ready to take on my day. I really noticed a difference from the other days! This is amazing!

Perhaps I should get an Apple Watch, then I could monitor my own sleep stages and REM sleep and deep sleep. I'll check that out. Chickadee, can you post a photo or information about the Apple Watch your DH uses? I'll look for it.

Iris

MN Chickadee

Hi Iris, you put a nickel in me with sleep apnea! 

I discovered my apnea by checking 02 levels. You can do this either with a smart watch (more on that below) or even a very simple gadget - I started out with this item - it's a bluetooth oxygen sensor that runs all night and you get a report on your phone in the morning. If it falls off just put it back on, you just get multiple reports then. Cheap but more cumbersome. I could see my oxygen was getting down to 86%.  I later learned I had just a handful of apnea events in the sleep study, but I know from my gadgetry that my 02 was dropping to 86% while I slept. Even if it's not often it doesn't seem good for a body to do that every night! I put that finger gizmo on my father and discovered just how wacky his 02 and heart rate were at night.  Both of us then did formal sleep studies and got cpaps after that. I now can keep my 02 over 96% at night (I use apple watch now which checks it at random times during the night.)  For what it's worth I had zero other symptoms of sleep apnea (fatigue, snoring etc) and would never have known had I not checked my own 02 when my pulmonologist was leaving no stone unturned on my lung issues. But once I got used to the cpap I knew then how poorly I had been sleeping when I had something to compare to. 

Regarding air blowing on your face, that means you don't have a good fit or the right mask. My friend uses a cloth eye mask to deal with the blowing but I decided to just get a different cpap nasal mask because air escaping means the whole thing is less effective.  The ones that simply cradle your nose with just a hole to breathe in will always blow in your face. Other styles get better seals. I like the Resmed Airfit N20 (or Resmed AirTouch N20 which is the same but with memory foam instead of silicon on your face) or the Fisher & Paykel Brevida with different headgear from the same company. The Brevida is kind of a hybrid of styles and probably the most minimalist without blowing in your eyes. I think the Airfit/Airtouch are the most user friendly and require the least messing around, though they do have magnets if you have a pacemaker. I think the AirTouch N20 is what I would recommend to anyone starting out, and once you are used to sleeping with something on your face you can try out other styles. I have found the bigger the head gear the better they stay put. Everyone goes for the minimalist stuff at first, but I found it all moved around too much which woke me up.  Those 3 models I mentioned do not blow on your eyes, you can get a good seal even without making it too tight especially the memory foam one.  I spent a bunch of money on like 5 different kinds of masks befores settling on one, but it was worth it for good sleep. It took a couple weeks to get used to the cpap. At first I only wore it to watch TV to get used to the sensation. Then started a few hours at night. It was horrible the first few nights, but after about a week I started to adjust and after a month I couldn't sleep without it. I am prone to  chronic sinusitis and lung issues and the humidified and filtered air the CPAP provides has been really good for that too. I could go into more detail about settings and adjusting if you go down that road. There are a few tricks that will make adjusting easier.  The medical supply place where you purchased it in theory should be able to help, though my experience is they weren't great, I just had to do a ton of reading on Reddit. 

On Apple Watch - I am a big proponent of them, especially for older people or people who live alone. In addition to tracking your sleep and other things, they have fall detection and can call an ambulance if you go down. My father had a fall and it worked as intended. It called 911 and me as his emergency contact. It also told him on another occasion when he had an irregular heart rhythm. The one problem is that Apple got sued about their oxygen saturation tech a while ago (patent related)  so newer models do not do 02. I got an older model because I wanted 02 readings. So options are to get the Series 7 which I am very happy with (click here to view) and it does 02 readings, or get a newer model and get that $20 gizmo listed above to read oxygen while you sort out the apnea stuff. Or there are many other gadgets to take 02. Amazon has many options. Another "smart" option is the Oura which is a ring you wear, and it also does sleep patterns, oxygen etc like Apple Watch.  Pretty similar, but a bit more expensive and some people don't want to wear a watch. For someone who also wants to track their sleep cycles I highly recommend some kind of product.  You get a graph each morning and break down of how long you tossed and turned, length of REM etc. 

Iris L.

Wow, Chickadee, you have told me more about solving my sleep issues than my two sleep doctors have told me over the past two years! Thank you, thank you, thank you!!!

I purchased a pulse oximeter after my pulmonary doctor refused to check my pulmonary functions and oxygen saturation after exertion. A pulse oximeter that can monitor overnight would be very beneficial. I would have to figure out how to use Bluetooth.

The Oura ring is amazing!

I have a full face mask to use with plastic touching the face. I asked about something to help with the facial rash I was developing, and was sold 30 cloth covers for $60. They never said anything about memory foam. In fact, they act as if there is only this one economy model for me to use. After what you have told me, I am even more disappointed.

During the pandemic my prior sleep doctor retired and it took a long time before I felt comfortable to resume going to medical offices. These new doctors and suppliers are disappointing. I will check out what you are telling me and give you an update. Right now, I am focusing on getting my circadian rhythm back to a more normal, more functional schedule. I have to be able to get to sleep before I can use the CPAP.

Thank you again, Chickadee!

Iris