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Jen, Alumna Mentor (@sandytoes14)

How is your Sleep Hygiene?

Sleep Health | Last Active: Oct 26, 2021 | Replies (29)

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Hi @mxyzptlk32, welcome back. Your valuable comment was posted to the whole group and is visible to all. Since it was a reply to JK, she received a notification that you had responded to her post. Does that make sense?

I thank you and @amlak for reanimating this discussion. I'm particularly interested in hearing what you learn as you review the settings of your CPAP. I, too, have questioned the accuracy of sleep monitoring through wearables like FitBit. Mine seems to imply I get more sleep than I think I do.

What has the neuropsychologist suggested for you to improve your sleep?

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Replies to "Hi @mxyzptlk32, welcome back. Your valuable comment was posted to the whole group and is visible..."

@collenyoung Hi Colleen, the problem I have with this app is it isn't clear who the response is to. I hit the "Reply" button and the system assumed I was replying to JK and in the comment listed that. I agree JK should be notified but there are better ways to do that than state I am replying to her\him when I clearly wasn't. The app could leave that info off the message and notify JK separately.

I will grant you the message was pretty clear who I was responding to but once the full message was posted with the system generated info it is possible I would have deleted it and reposted with the specific names of who I was responding to. The NextDoor app, another social networking app, has the option of replying to the original message or a responder to the original message which is a bit more clear.

To the accuracy of devices…I am an app developer and fully understand the pitfalls of assuming what a device is tracking. Unless I have the code (app developers make mistakes) to review it is not likely I am going to assume any device is accurately capturing what I or the person who wrote the manual says it is capturing.

I do have a natural curiosity though so I paid attention for awhile then compared what I thought was being captured to the VEEG and Neuropsychologist said. It turns out it may have been more accurate than I first thought. I don't use the fitbit app any longer so there is nothing to compare now.

The Neuropsychologist agreed with the Epileptologist and I, a sleep study was the next step. My Neurologist and I had tried to do one several months back but it was a dismal failure. I couldn't get to sleep and then the guy that read it said I didn't need CPAP because there were no incidents. I guess someone had to graduate last in their class. I reminded him of his diagnosis when he seen me for a seizure in the hospital. He had asked me if I was on CPAP. I don't generally need an invitation to speak but he did walk into that one a bit. He went back to his notes and modified the diagnosis. It was OK though I never quit using CPAP and the seizure was stopped with an injection of Lorazepam.

My CPAP settings are set for 5-14 on a RESMED machine but I don't think it ever ramps up. I don't know if the machine is broke or if I am not having incidents. I could be wrong about it ramping up too. A number of reasons to do a sleep study.

I found a 2005 research paper on a website tying sleep to Epilepsy. It made it sound like this was a new thing. To me it makes so much sense I can't hardly believe they needed a research paper. I mentioned it to my Neurologist and Epileptologist. I think they were both aware of the paper. My Epileptologist was new at the time. I told him the history of the paper said medical professionals back in the day considered people with Epilepsy to be prophets. He told me a few years later people with Epilepsy were considered to be the Devil. I knew he had read the paper. The paper essentially said sleep issues needed to be aggressively pursued as a treatment for Epilepsy.