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NightWare™ Review Part Three

NB: My psychiatrists (and all of the medical people I have dealt with) our obsessed with knowing how much sleep I am getting. How many hours? It doesn’t matter! Not if you go to sleep three or four times a day and have rotten, disturbing sleep each time. Never refreshing, never feel good sleep. The quality of sleep is what’s most important but they don’t want to assess that because there is nothing they can do about it and because they don’t want to admit that.

NightWare Review – Part One (internal link)

NightWare Review – Part Two (internal link)

NightWare Review – Part Four (internal link)

NightWare Review – Part Five – Final (internal link)

My first suicide attempt (internal link)

ROUGH, UNEDITED TRANSCRIPT BELOW

Hi, this is Thomas Farley again about talking about the new NightWare™ system. This is the third video — we are at November 10, 2021. I’m I am seeing less visual disturbances, less crippling, violent imagery.

[00:00:26.390]
It’s difficult for me to tell because if this is a reduction because sometimes I’ll have two or three nightmares in a night, sometimes only two or three in a week, and then they disappear for a while. They always come back. I’m still waking up scared, though, from things I can’t recall. I check my heart rate. It doesn’t register as anything but normal.

[00:00:52.970]
I continue to get sound offs that are from either going to the bathroom, moving around in bed or actually just lying in bed, staring ahead, thinking about things. I’m still getting alerting. I think it’s not learning yet on many things, and for all I know, some of this is spontaneous remission or whatever they call it. I continue to go forward. On Friday, I have a psychiatrist meeting.

[00:01:21.950]
She’s going to try to go through the data. I’m averaging 6.4 hours of sleep, so at least it’s keeping track of that. So I will continue with this. I’m just disturbed that it’s not learning.

[00:01:40.850]
It shows these interventions on a graph, but with the number of false alerts, I don’t have the confidence to say what is happening right now.

[00:01:56.130]
So we’ll proceed and at least I’m working on something right. And if you’re having sufferers again, this is my send off to you. I really hope that you have a good night and that you sleep well. I really hope that for you and that you find some peace. Good luck.

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NightWare Review Part Two

NightWare™ review. A review of NightWare.™

Transcript delayed due to the death of a friend.

NightWare Review – Part One (internal link)

NightWare Review – Part Three (internal link)

NightWare Review – Part Four (internal link)

NightWare Review – Part Five – Final (internal link)

My first suicide attempt (internal link)

ROUGH TRANSCRIPT FOLLOWS

[00:00:06.890]
Hi, this is Thomas Farley. This is my second video on the Night Ware system. I hope hope you’re doing well or at least coping. I wish the best for you.

[00:00:32.670]
There’s so much information. I’m not sure how to present this. I’m just going to go in and pull out what I think are the most important points from my point of view. When I’m working, I am a professional writer and editor. Perhaps I take offense at this material more than I should.

[00:01:01.930]
I got the watch.

[00:01:09.350]
I have an Apple watch already, so I’m familiar with this, but at least several times I stopped the recording of the device and I thought I pressed the stop button, but it continued to run and record and eventually essentially timed out very puzzling. If the wrist strap isn’t tight enough, it will stop recording your heart rate. You’ll get a message saying there’s been no heart rate detected for ten minutes and it will stop and I don’t have the screenshots, but several times at least three or four didn’t work as they should.

[00:02:06.710]
And I wanted it to get right because there’s this initial calibration period that they talk about. I wanted to make sure the watch was working correctly and didn’t know if it was working correctly, and that’s a problem with the tech support not being available at night when us nightmare suffers are up at night, and of course, nothing on the weekend.

[00:02:27.350]
So rather than getting this resolved in real time, it has to wait. And anyway, so the watch seems to be working now correctly. It stops when it should stop, starts when it should stop or start.

[00:02:56.910]
When I was having those events, what I did was started a dream diary. So if something like that went wrong, I noted the time so that I thought we could go back to the charts and correct them. Similarly, when it was sounding off incorrectly, like once I pulled up on the sheets too hard and it marked this thing they call an acceleration when in fact just pulling up the sheets too hard. So I had this idea that I would make all these notes on these false positives.

[00:03:32.430]
Such an ugly phrase, but false positives.

[00:03:35.670]
And then somebody at night where we would go back correct the record so that the algorithm could learn. Because how else can the algorithm learn about an event like pulling up the sheets too hard if that only occurs every five, six days? Similarly, the literature says you can use the restroom, just take a short break, come back and it won’t affect the record. But each time I did a short break, it would sound off. So again noted that in my sleep Vlog because this is the first couple of days and I actually keep a sleep blog for your own records, but there’s nobody at night where that’s going to go back and reconcile this the algorithm is running on its own, which I found out later.

[00:04:35.190]
It’s a lot of stress before I found that out for, like, bathroom behavior. The Apple watch has a gyroscopic function, which you may be aware of, and so it can track movement, get out of the bed, move toward the bathroom and back. So it is probably recording that event as an activity, logging it and then over time, maybe dismissing it. But this initial calibration that I read about apparently finally got an email on this.

[00:05:20.210]
You’ll get no interventions. The initial calibration period lasts one to three nights. After the system collected 1000 samples.

[00:05:32.210]
I thought with such a wide variety of activity possible at night that it would take a long time to dial in. And tech support is saying it actually happens in one to three nights. So problem is, you’re new to the watch. You’re turning it on and off. You may have really ragged sleep like I do.

[00:05:58.190]
And because of that, I was turning the watch off repeatedly when I would get up for a couple of hours, because I have my insomnia.

[00:06:10.010]
Actually, that’s probably not a good idea. Probably keep it on at all times, because what happens is there’s this 30 minutes window when you hit the pillow and between that? Well, actually, when you go to sleep, when it first registers that you’re sleeping, it will provide none of these interventions. None of these tap on the wrist for 30 minutes. You’re on your own for that 30 minutes.

[00:06:35.210]
And some of my worst nightmares hit me as soon as I put my head on the pillow. And there’s nothing to be done about that. Tech support repeatedly claims that an improvement in that area would require FDA approval. I don’t see why that would be such a problem. Perhaps it is what we have is adaptive technology within limitations undisclosed so that it doesn’t adapt, for example, to that 30 minutes window.

[00:07:15.110]
It’s not going to lower it, and it also won’t adapt to if you have anything outside the criteria or the settings of what they deem a nightmare, that is your stress level, measuring your heart rate, your movement in bed, some other factors that I’m still not aware of. If that criteria isn’t reached, then it’s not going to be considered a nightmare. You will not get an alert, you will not get one of their so called interventions. And again, without reconciling your chart with your sleep log, it’s going to be saying, maybe happily, that we provided five interventions when, in fact, they could have been false readings, false alerts.

[00:08:14.210]
But again, the bottom line, nobody is going to reconcile your sleep record with your actual chart.

[00:08:26.910]
What else? Yeah, I thought I was going to flip through some of this, but actually trying to think if there’s anything important, a lot of us have nightmares. That may not be the classic you’re killing somebody or somebody’s killing you, but you just might be having to watch. I don’t know, a loved one being tortured or suffering, and it may go beyond going. I had a nightmare the other night where I had lost my cat in a retail store.

[00:09:07.490]
Fremont is an indoor cat and had a huge store running all over the place. Can’t contain them, can’t collect them. And this goes on and on and you would say, well, so what? It’s a cat. You’re running out of a cat.

[00:09:21.110]
But the anxiety and the stress which just goes on and on is just one of these what I would call stress dreams. And people dismiss them because they don’t have the same level of anxiety that I do. Or maybe they’ve never had a cat on the loose and they can’t find it. It’s lost. You can’t get it back.

[00:09:45.170]
That’s incredibly stressful. It doesn’t have to be chopping up people for me to constitute an extremely difficult to deal with situation. And a lot of this is a background to my sleep. And I’m really bothered by the fact that that stuff. They just keep going.

[00:10:06.290]
Now, at this point, this guy just would probably like to put down praise in which has never worked for me before. One of the few dreams that are actually prescribed for nightmares. I’m sure most of you have used it and know that it really doesn’t work for most people because otherwise VA hospitals would be cleared of PTSD victims in a hurry. But the other thing introducing other medicines. I don’t know how you’re going to tell what’s working or what’s not.

[00:10:42.050]
Maybe three of them can clear up the lower level stuff and the night where system can clean up the more violent stuff. It’s just an experiment right now. I’m going to end the video with those random thoughts, and I hope something helps you. My email is Thomasfarley at Fastmail. Com.

[00:11:02.030]
Thomasfarley at Fastmail. Com. And you’re free to email me and we can commiserate with this. And I’m really hoping for the best for this product. I really hope tonight that you don’t have any nightmares.

[00:11:16.130]
I really hope tonight is a good night for you. And let’s hope that for everybody. So thank you.

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Mental Status Update

It’s getting harder to write. The last three weeks have been difficult for me, with bouts of nightmares and extremely distressing dreams once again becoming common. Medicine hasn’t helped, prayer hasn’t yet, and talk therapy never has. This situation is not tolerable. After thirty years of off and on misery I am not prepared to continue with another thirty. When my breaking point comes I cannot say. I get better when these images lessen; two or three days of no dreams brings me back to a positive world.

I’ve called the suicide hotline twice now, just to see what they had to offer. I had no present plan to kill myself when I called but I wanted to talk to people who had experienced suicidal thoughts or possibly suicidal attempts. Unfortunately, the people manning the phones are not allowed to talk about their own personal experiences. This gets to something that has always bothered me about the medical profession.

A doctor or health care professional cannot be tasked with experiencing all the ills any patient may face. There is also a distance that must be maintained from the patient in order to make objective decisions. But a psychaitrist or psychologist who has not experienced thirty years of nightmares cannot possibly understand the patient who has. There is, therefore, an overwhelming and impossible gulf in understanding what the patient is going through. For the patient, repeating the same problem over and over simply becomes frustrating and depressing, as their experience cannot be conveyed to any degree.

A horror film might be described in print or talked about to another person but that description can’t compare to viewing it. My worst nightmares end with me startled awake, heart rate racing, adrenaline coursing through my body, gasping as I try to breathe normally. How do you relate that? For my part, I have taken up running every other day, four miles at a time. It makes me happy. I thought it would help my sleep but no physical regime has ever helped my mental health. Nor has giving up alcohol through the years. At this point, though, I am a non-drinker for life, for other health reasons. Again, no effect.

Over the decades, many people have suggested approaches that have worked for them. I have tried all of them. Often repeatedly. These same people sometimes get mad when I say their method doesn’t work for me. I am sure it has worked for them, just not for me. As I don’t doubt their experience, I hope they don’t doubt mine. It is a terrible thing to tell someone in crisis that they’ve left avenues unexplored, or that they’re not trying enough, or that they don’t want to succeed.

All of us have our own troubles, many of them life-long and chronic. I wish you relief in whatever you have. You have my thoughts and prayers. And, I sincerely hope, some understanding.

National Suicide Prevention Lifeline

1-800-273-8255