1:06
Hey there, it's Emma Cooksey here and I'm your host.
So a couple of things before we dive into today's conversation and this week or yesterday, I was really excited because I got to host a little Facebook live story sharing and with Gary night.
1:26
So for those of you not familiar, I work with project sleep to raise awareness, It's about sleep Health, Sleep disorders and sleep equity.
And one of the things they do is train people to be Patient Advocates, telling their stories and through a program called Rising voices.
1:47
And I had encouraged Gary night who was one of my very early podcast gas and I really encouraged him to take the rising voices training and so he finished it and this Was him sharing his story on a Facebook live.
2:06
So I'm going to go ahead and put a link in the show notes of anybody missed that and you want to go back and listen to Gary sharing a bit about story.
Then I, you know, I think you did a great job and it was awesome.
So today I'm joined by Trent and Theresa Ted ball, there are married couple from Reno, Nevada, who have been battling trance so far, untreatable obstructive sleep apnea, Seven years, Trent had done several Surgical and traditional sleep apnea treatments, but he still hasn't find something to manage the severity of his daytime symptoms.
2:44
So I think that far too often we think that people with sleep apnea, to just get diagnosed and the first treatment they try works and that's it, right?
But that is not the case for a lot of people.
3:01
So I really appreciated And Teresa sharing a bit about what his journey has been like and and I hope that people listening to this will realize that we need more research.
We need access to all the treatment options and it would be really great if we could have more collaboration.
3:23
So that all of the healthcare professionals trying to solve this, we're working together.
One of the things I know is listening back to this episode was just how much Trenton trees are having to do all this work to research all of these different options with different providers, who aren't talking to each other, and it's really, really frustrating.
3:46
So, without further Ado, here's my conversation with Trent and Theresa Ted ball.
So thank you both for joining me for having us.
We're really excited.
Yeah, I'm really excited.
And so for I first came across you because Teresa was, you started an Instagram about kind of like LinkedIn with your blog talking about your husband's Journey with sleep apnea.
4:14
And so I was like, ooh, and I think like sometimes I'm a bit much when I come across people doing that because I just think so many.
More people need to share their stories to really, you know so people know like a lot more about what's going on with sleep apnea.
4:29
So do you want to start?
Maybe Trent, do you want to start with just when all started for you?
Like did you were you asleep?
You child.
Did it start as an adult?
What was going on?
Yeah, it definitely.
I was a sleepy child.
I think I was born with this.
4:47
I only say that because.
Yeah.
I mean my, my aunt and uncle's when you're around.
Family, they always said, I looked the retired and I took a lot of naps and it really only became evident to me when I was in high school that I was just a sleepy.
All the time.
5:02
Always had to take naps.
I was always tired.
It was a joke with my friends that I always have to take a power nap before we did anything and I actually had a sleep test in high school done.
And for some reason, I did the test and I never went back to the doctor for it.
I was like, nag, you know, that's not so you did a polysomnogram.
5:21
Test with the electrodes on your head and all that and you never got the results know.
So I don't know what I was thinking.
And I've asked myself in the head about it because I'm like, I could have gotten a huge jump start on this.
And so you know, when you're a teenager.
5:39
Yeah.
You think you know everything?
Yeah, I knew everything I was like, no, it's not my sleep, you know, there's no way and so it affected, you know, the other thing I'm really interested in.
In, did you know anything about Sleep Disorders or had?
5:56
You did you know anyone in your life?
Or did you heard anything?
Because I literally didn't even really know what was the thing.
Yeah, I yeah, same here.
I had no idea.
It was a thing.
And I think that's part of the problem is, I was like, what are we even testing for?
6:11
You know, I mean, I sleep all night, you know, there's, there's nothing wrong with me, sometimes people feel that they almost there like, I'm sleeping too much.
Yeah, there's Thing wrong with my sleep is just I need to sleep glass or something.
Yeah, but yeah, that was a gosh.
6:29
But that point what were your apart from the excessive daytime sleepiness?
Did you have other symptoms?
You know, not really.
And I don't want to say it was extremely severe in high school.
I just noticed I was tired.
I was still able to do things.
I still an athlete.
6:44
I still, yeah, it didn't have said, I know, we're honestly were a bunch of overachievers like When I talk to people, and they're just like, well, all the stuff I did in my early twenties, I did I do that.
And it's like, yeah.
You just did it through the tiredness?
Yeah.
7:00
And it kind of just it slowly kind of Rob's like your ability to try like that ambition still there.
Just kind of Rob's everything else from you.
Yeah.
Just terrible thing to live with yeah, but yeah, I didn't have a significant impact and when I was a teenager but it was there, it was there just just napping, you know.
7:21
So I didn't take it as seriously.
So then like, when was the next time that you actually saw help or went to a doctor about it?
So I want to say was was probably early twenties early to mid nineties.
7:39
Yeah, that I started going because I rapidly declined pretty quickly.
And I was starting to spend more and more and more time in bed.
And I had a lot of brain fog and I was just having a really hard time.
7:54
I thought, you know, I'm going to add some type of medical condition and it took a long time to get the diagnosis of sleep apnea because I was young, I was fit, it was healthy everywhere else and I was told at the time that, yeah, there's there's no way you have sleep apnea sigh medical professionals.
8:13
Yes, yeah, yeah.
For a couple years.
Yeah, that was really difficult and really difficult.
And they didn't.
And so I think sometimes when that happens to people you, well, for me, I don't know if it's the same for you but like that happened to me basically for 10 years.
8:32
Like I was going to doctors saying I mean, I don't know anything about sleep apnea but I was basically telling them that had all of these different symptoms of sleep apnea and they were saying that like I think I heard like Sleep Disorders are really rare and I don't think it could be.
8:51
Sleep apnea because that's only for older overweight men and you don't fit that criteria.
So I think that when you're hearing that from medical professionals, it kind of well for me, it definitely did a number on my mental health because I'm thinking like, well, is it all in my head or like what's going on?
9:11
Because I know I feel like this but if a medical professional is basically saying there's nothing wrong.
Then maybe the problems me, almost it.
Was there any of that going on?
God.
Yeah there.
Yeah, there was that and I was also really stubborn because it started to get so severe to a point that I'm like, something's killing me, you know?
9:32
Like yeah, well like, I always thought I was dying.
I'm, and yeah.
And yeah, at first, I did have that.
I'm like, okay, it's in my head.
It's something I'm doing something wrong and I need to change my diet.
Maybe I need to do this.
Maybe I'll do this is something I'm doing wrong in my life until it.
9:48
I literally felt like I was dying and there was something Yes, and I'm like this, there's something serious going on.
I have to dig deeper, so we're going to come back to that point of the story.
But Teresa, do you want to just kind of share like you're nodding along like you were absolutely bear for all of this.
10:05
So do you want to kind of?
Let us know a little bit about your background as a couple and light.
When you came on the scene, like, obviously Trent was already sleepy when you first met him.
So, tell me all about that sleepy guy, I just think it's weird.
10:21
Did like a, we've been together 10 years, so I'm 30, he's 32 32.
So we've been together.
You're exactly like me.
I'm like, I'm 45 my husband's like a junior in college and we've been together ever since.
10:43
So, we belong between Nevada Reno, and which is like, close to Tahoe and then the Bay Area like or for it.
A half hours away like two and a half years.
So when he would travel or I would travel, we were both in school.
10:58
So it like in retrospect we did a lot of really chill activities.
But yeah pain side.
It's like, oh, like we did a lot of really chill activities because he was really tired.
So what you're saying is you were kind of blaming that on the fact that you were traveling like long distances to see each other.
11:18
Yeah.
All the things like didn't really think about Yeah, when we started going to the doctor like more and more, we just really were in that vein of like though, it's got to be depression because he had some chronic pain stuff at the time as well with its neck.
11:35
And so you know, they were really open to prescribing oxycodone, so that happened a lot that can mess such a common story Parable, right?
Yeah, I feel like a level of guilt as well.
Because at the time he was in school, we were So broke.
11:52
I was like a first or second year teacher we were living in this basement.
We had no money and I was like you've got to be depression.
Like we're both, you know, we're just having a really hard time.
So I think Them saying like, oh you're you know, the amount of Pat's on the shoulder and like all you're not a candidate for sleep apnea and then that coupled with like, oh yeah it's probably depression and then us feeding into that narrative to because we don't know.
12:18
Yeah.
And you have no reason to question, right?
Yeah, yeah, hmm.
Then then, you know, he starts spending more and more time in bed to the point that I'm eating dinner by myself every single night, were Not going anywhere on the weekends and then we did.
12:36
We've literally, we tested for a last.
We've tested for Park like Parkinson's crazy stuff.
That's just so unfrozen was never a suggestion of another sleep study basically because the doctors were saying you know, you don't meet the criteria or whatever.
12:54
That's so frustrating.
So you're testing for all that stuff and that none of that was happening.
And so I say that I got really really bad.
So is that Like were you working Trend or yeah, I was just, I was barely hanging on, I was barely hanging on but luckily, I had found a job that wasn't very rigorous.
13:16
You know, it was it was a desk job wasn't stressful and it was it was really easy on me but it wasn't full time.
It was only 32 hours a week.
Yeah.
I was barely making it.
I was almost falling asleep on my way home.
13:32
Yeah.
Fall asleep at my desk.
Several times and it was just, it just miserable.
I would just wake up.
Go to work, and I couldn't wait to get home and I just go straight to bed every single day.
And I don't know if you can relate to this, but I know for me and sometimes I actually had quite a lot of grief around this.
13:50
When I got my diagnosis because I feel like for 10 years, I was choosing jobs that I was like, you know, were you know, like well below what I was qualified to do.
Do because I was like, well, you know, sitting down and like you know, like I can do do the job when I'm really tired, because it's not that demanding and I think that that's that's difficult when you think about that, like how much more you could have been doing, you know, if you weren't like feeling that way?
14:25
Absolutely, yeah, yeah, it seems so.
So then when did it get to the point that you were actually what was the Breakthrough that you finally got a sleep test.
So I think we had a GP.
Say you have a deviated septum.
14:42
Go get that checked out, okay?
This ENT here was just like let's do all the stuff because you said you're tired.
So he did the you triple p and O an admin septoplasty turbinate reduction.
14:57
They did all that without doing a sleep test.
Yeah.
All that at once it It alleviated.
Some of his symptoms for exactly four weeks.
And like, so let's go back.
So they did a you triple p on you and a septoplasty and what else I can select me, they removed my adenoids and they did a turbinate reduction all at the same time all at the same time and I would say this is the most I've done several other surgeries as well but that is the most pain I've ever experienced that.
15:29
So I've never heard of anybody.
Having all of that done at Because even like I had my tonsils removed and that by itself is a really painful recovery.
And then since then I actually had Craig Baker, he's one of my guest on the podcast.
15:48
He came on like before he had his procedure and then he had a tonsillectomy, a septoplasty and turbine toxin or I mean, I can't remember but a law at the same time and I was That's way too much to have it the same time but you got to do you triple p as well.
16:08
Yeah that was an experience that yeah.
Yeah.
To me that they.
So you're going to them and explaining that you're tired all the time and they're looking at your anatomy and saying we should do these procedures but they didn't test you for sleep apnea.
16:29
You just don't like let's let's try that and see if that helps but you probably don't have Sleep apnea and ya.
Still at that point, they weren't quite combative but they still did it which was naive knowing what you know, do you not think that that's like kind of crazy like, yeah, yeah, absolutely, yeah, usually given the recovery of that surgery.
16:49
So you went through the recovery of that and then and then you said it did help a little bit to begin with.
It could have been Placebo, just because I was trying to convince myself like it has to work, right?
Right doctor.
The surgeon is saying, this is going to help and I, yeah, I was trying to convince Vince myself that it helped and then eventually you know, just yeah.
17:08
Just comes crashing down.
And then we finally were able to do an in lab.
Sleep a sleep test.
Yeah.
Okay.
I'm so how did that come about?
Did you have to kind of push to say there's something wrong with translate?
17:24
We need to have a lab study?
Yeah, I think so.
I think every time they ask you, they ask if he snores he doesn't snore.
Right.
And he does have the the treatment emergent write the code.
Yes.
But it's not even the central like with the obstruction, he rarely snores, he's really hypopnea heavy, okay, got it.
17:46
Yeah, so then we finally just went and did the in lab and like lo and behold.
It was like, moderate obstructive sleep apnea.
I so did that show Central at me is to or no, not not until okay.
Like a titration study with like trying to Treatment right?
18:04
Got it.
Yeah.
Okay.
So they said obstructive sleep apnea and what did you say when you got that diagnosis at last so excited?
Excited and it made sense because we were doing a lot of research.
We like, when I got to the sleep test, I'm like doing all this research.
18:20
I'm like, this has to be it.
Yeah.
So it was really half the time.
It was a breath of fresh air and it was like, oh my gosh, finally, we can treat this.
Oh yeah, I'm so you saw.
Did you see Board certified sleep specialist at that time.
18:36
Okay.
And they went, they went over the diagnosis with you.
Well, I'm sorry.
No, it was my GP and then once I got diagnosed with it, then they sent me to God.
I was okay.
And so then what did what did they say?
Like you need to go and CPAP or what did they say?
18:53
Yeah.
They yes she did and then I think we did you know where I think during the first study we just did discover I think got we've done so Many things, it's been.
I know you've hurt you literally forget, like, I tell people stuff and then I'm like, let me go back and look at the actual records from the can't remember.
19:13
We had to have known you had treatment emergent Central because they started him on the ASV machine because CPAP and BiPAP don't work for him because when he puts treatment on, then his brains just like, no I'm not.
And yeah.
So I think we must have known.
Is it Ashley treatment emergent though?
19:29
Because he wasn't on CPAP so know it's so It.
I met the split night protocol.
We're halfway through the night at like midnight or one that came in and did the titration experiment me on CPAP.
It got rid of all my obstructions but my central age, I was a 44 with CPAP saw them and I got switched ASV which was able to get my obstructive in Central's down.
19:56
Got it.
21:27
And so then you went home and you started you using the SB?
Yes.
And then tell me it was.
So first of all tell me about your experience of did you go to a DME Company who tested Macon you and did the sap or what happened?
21:45
Yes.
Yeah so I went we tested some Mass, I started with a full face mask and that's just what I started on.
It felt really comfortable.
I forgot what it?
Which mask it.
Was, but it was really comfortable.
I started with that and I had a really hard time with a full face mask and I think not too long and I actually switched to the nasal one.
22:06
Okay.
And it took me, I would say about three months to get used to it before it.
You know, I wasn't waking up with it just on the ground because I would just tear it off.
Yeah, I'd wake up to the ASV machine.
Just ramping up to these really high pressures and all these things and yeah, so it definitely Took three months before.
22:28
I slept an entire night through just with that, but you kept going with it every night for three months.
Yes.
Yes.
Which is, yeah, he's hard.
Yeah.
Talented at getting used to treatment.
He's pretty resilient.
22:44
I will ya.
Heart is just not taking it off in the middle of a nice.
Yeah.
And also not know like I think often some of the problem with that it's just you're not fully awake, but you just kind of take off.
Off.
And then when you wake up, you're like, oh, when I do that and like you know, the so that part can be really annoying because you're trying your best, but it's just tough.
23:06
So then what happened to three months?
So at three months, I started sleeping with it.
Every night, all night, totally compliant.
You know, I'm sleeping the whole night, I'm not even waking up, but I have no change in my symptoms at all.
23:21
I actually worse in off of it and and A bit there.
I know that it doesn't really mean that much but is, is the machine giving you green, smiley faces, yeah, .5 or, yeah, but ever, when he's waking up and we were like, okay.
23:42
And so if you're not feeling better though, so we're still not feeling better.
And so, it's just a bunch of doctors, appointments titration, studies testing it getting tested for narcolepsy.
And keep telling us, we need to wait.
You have to To give it time.
23:57
We went in at three months, she said, y'all do?
We let's give it 60.
We gave it 6 and went back at 6 and we were like exchange so you did.
So you didn't MSL t-test for narcolepsy.
Where you do the naps during the day.
24:13
Yes.
And it showed you didn't have narcolepsy narcolepsy.
Okay, no narcolepsy.
Yeah, and you know, they basically just ended up after kind of going back.
Oh wait, go back.
Wait, you know, we're like a year and a half into Seeing and I'm worried.
Yeah.
So sick at this?
24:30
Yeah.
And are you still working at that point or no barely hear.
I still know how you're doing it.
I didn't either.
It was.
I mean, I would just, I would cry on my way to work.
Yeah.
Right.
It was just the most miserable point of my life and I shouldn't leave Teresa.
24:48
I serve it because I know like being the spice of somebody that's dealing with this, that's a law.
It's a lot for both of us.
It's all the time.
It's like that aspect is not talked about a lot either know which is why I'm so glad you're doing your blog and we will talk about a bunch but yeah.
25:06
Like I think that I don't know.
I think it's tough for the person going through it but being like the partner of somebody when there's you feel quite helpless I think like there's not much she can really do like you can support but yeah, really terrible.
25:26
Well yeah, so so then so you keep on going back to the Sleep specialist and they're really not giving you any other options.
They're just saying, like, keep on going with the ASV even though you're not feeling better.
And so then what was the next thing?
I feel like there's more things you tried.
25:44
Yeah, that's why I'm trying to Skip Along because I know like for some people.
Interview.
It's like I yeah I went undiagnosed for six months and then I had a test and then I got so badly and now I must leave and everything's fine but I know what you guys like.
25:59
There's a bit more to cover.
26:11
You guys don't know.
We don't know, tried everything we can for this.
You know what about?
What about other surgery?
I've looked at Max The mandibular advancement, they move the Jaws forward open up the airway and he said, yeah, you know, honestly, I think someone in your case, that's something we can look at.
26:27
Because we just, we don't know what to do for you.
We don't know why you're right.
Yeah.
And what I didn't realize until just like, actually kind of are sufficiently.
I looked back at my old at my sleep test and gosh, if I knew then what I know, now, my arousal index was like, 23 24, an hour on the SV machine with a, got my hands right now.
26:46
So I'm like, I traded one thing for another.
So That's why I went and I'm very sensitive when I sleep.
So the arouses the same.
Yeah, that was probably why it wasn't working yet but I went to Stanford to get more opinion, more opinions looking at surgery, my Airway was very very small is about 5 millimeters in width and so yeah you're a candidate for them a couple jaw surgery so we did it.
27:17
That was in 2020.
Okay, so for people listening, like, we've done a bunch of episodes on people that have had MMA surgery.
But so there's quite a lot involved with that.
So you had to start I with.
Did you do like Orthodontics to make?
27:32
No, I didn't know.
I didn't need any because I had Orthodontics as like a kid and my bite was really good and stable.
They didn't need to make space for the incisions though.
No, no.
I don't know.
Maybe I'll maybe Have been missed and I don't want to speak to that but we are in a position now where we're doing revision MMA.
27:54
So I think it's do it again possible to speculate how you would on on.
Yeah there's definitely I mean there's different surgeons who do use different protocols to certainly.
Most people I mean I think everybody I've interviewed so far has done you know they do Orthodontics to make room for the incisions and then they do His afterwards to straighten the teeth again.
28:21
Interesting.
And so they just did it in one go.
So so and what was the recovery like for that.
So that was, you know, I don't want to say, Obviously the pain compared to like the utopian tonsillectomies.
Not even quote.
Yeah, like his last bad less fat significantly less bad.
28:42
The problem is, it's the length.
It's a marathon of recovery because I'm closed shut yeah.
Two months, liquid diet, and everything really hard.
And then after that, when you get the band's off and everything, it's not like I can go back to eating and I'm still basically on a liquid diet even though I'm clear.
29:01
So it was mostly just being hungry learning to use my jaws.
Again dealing with the swelling and the breathing problems because of the swelling.
It was mostly they happy do.
Did they have you do my affection or therapy or anything?
Or no?
Not before that.
29:17
Nah.
No, nothing before that.
We can do any math function.
Okay.
So then you have.
So you got, you went through that whole thing and God came out the other side of the recovery.
Yeah.
And then, how are you feeling, how are you sleeping?
29:33
And like, why were you feeling at that point?
So we still trying to use the ASP or you given up at that point, because it for it hurt.
My jaws to put it on so it was, it was painful.
Yeah, I'm so I can use it and I was just Scared of regression regression.
29:51
Oh yeah.
And he sort of pressure this way.
Yeah.
And so I was just sleeping fully untreated.
And it actually got worse and got significantly worse after the double doll surgery.
Yeah, get a sleep test.
And my original sleep apnea was my age.
30:09
I was a 16, you know, positionally whatever backside it was just a 16 and after the jaw surgery, my age, I was 28 or 29 and there was a 53 on my back, and it just got significantly worse.
30:26
I'm the central apnea is, were the same as they been.
Yeah.
They were gone.
And then, yeah, so we went back on the machine and that was even worse than the first time.
So I was like, okay, I'm done with the machine.
I've given it, you know, two and a half years.
Yeah yeah Collective and it's just make things worse.
30:45
So at that point, you know, That's when the lot of depression kicked in because I'm like, well what else can I do?
I've tried everything that you've literally done.
Like give me done both those huge surgeries.
Yeah, right.
And I'm sleeping untreated every night and I feel miserable and I'm just like what am I supposed to do?
31:04
Do they expect me to live the next 60 years of my life?
Well it just gets worse.
Like yeah and it was a really dark time at that point because we were just we were stuck.
Yeah and sorry.
Oh my gosh.
No.
31:20
I mean, like, I'm famous.
I'm famous for like, crying, like through things crying's.
A okay, on my podcast, you're not the first person.
And so that was obviously, it goes without saying really hard for you to Risa it was he suffers obviously from, you know, pretty severe depression like when this has an uptick but like the other side of it is so so do I, you know?
31:46
Hmm, it just sucks.
I don't know how else to say that something it's so scary, because they don't think people understand like You know, you say sleep apnea and I don't I don't know why the stigma is that.
It's like no big deal.
Yeah.
And it's certainly not no big deal like it's this constant fear of like he's like a walking breathing heart attack or not breathing is and it's just terrifying, it's so scary.
32:18
I I think like so I think that that you and I kind of talked about that to begin with when I when you were first post.
I'm but to me there's this huge disconnect between.
People think that if they know anything about sleep apnea, they think of it as being something.
32:35
Well there's a treatment for that.
There's a CPAP get a CPAP and then you'll be fine.
Just like my uncle Trevor or whatever.
And I think that that the problem is those of us who, you know, like either you CPAP like me, right?
32:54
So I've you see pipe every night for 15 years and feel significantly better than I did.
Like I'm not falling asleep at the wheel and I don't wake up with really bad headaches and I'm able to function but I'm still definitely living with a sleep disorder every day.
I still have to nap.
33:11
I sell probably couldn't work full time.
So I think that there's this this issue where some people do, you know, it does go great and they, you know, or treat.
Especially older overweight man, who the whole system is geared up for that have higher age eyes, but they hardly ever wake up and those people go on CPAP and they sleep just fine.
33:34
And they're like, no problem.
But I just think that the experiences are so much more diverse.
And there's such a range that it's like, there are lots of people that just haven't find something that will work for them.
Yeah, so the more we talk about it, the better I think just too cute.
33:52
Reminding people that we need more research.
We need more treatments.
Yeah.
It's so validating I started at page on a whim just because my therapist told me it would be cathartic.
You start a blog.
Yeah, I need to read it, right?
But it has not only been obviously really cathartic for me to get my thoughts out and speak to this because it is so consuming, it's all that we think about.
34:15
So I like to talk about it.
Yeah.
Same and the validation, right that we have found that there are other People do feel this way.
Has been huge.
Yeah, huge, yeah, I'm really glad you did.
I think sometimes doing something creative can really just kind of help to kind of move it out of just constantly thinking about it, you know.
34:40
Right.
It was good.
So then so then you're really depressed because of you and then but there's more.
Right so so what what, who The next door to you went to.
So we have to do a drug induced sleep endoscopy, okay, TJ's the like why, what's going on, what's Happening, while trying to sleep needed, you know, whatever, so do that.
35:14
It's his tongue and what they did tell us was that like the tongue was the entire issue, which is how we Landed on the Inspire stimulator.
But it took you a solid maybe year because they said the Inspire was like the only that hypoglossal nerve stimulator.
35:33
The only thing left to try and we were like, oh man, like just so wary of that.
So it took a solid.
So they said that even though they so from the sleep studies that there were Central at me is two so that I didn't have Have any Central's without the machine at all?
35:54
So they were basing it off that base.
Oh yeah.
So I only have the centrioles under the machine, so it really was treatment emerging Santo at Mia's, okay.
So sorry Teresa, I'm all like trying to tell you like, no, you mean, this is mr.
36:11
So so when you weren't on so when you weren't on the machine, it was purely obstructive and they were saying that it was mainly your tongue that was the issue.
And so that's why you would be a good candidate for inspire, okay?
36:26
I'm with you.
Yes, it was tongue base obstruction.
And because it just for people listening, like I have done an episode on Inspire, and I've got another one coming soon, but there are a lot of different criteria for people who are good candidates for that.
36:44
And one of the things is that your tongue has to be, like that has to be a big part of why, right off.
Obviously, like if people just have an airway, this collapsing in on itself, then moving their tongue forward isn't going to help that but you were told after the dice procedure that your tongue was the biggest issue so it could be a good option.
37:06
Yes, yes, exactly.
Yeah.
Everywhere else they said that it wasn't really having any collapse or anything like that so in really the biggest thing is like what she said is I was the youngest patient at the time that Stanford had put this in and I was just I really got into my head about relying on a device again, and putting something into my body and I'm just like, oh, man, every 10 years, I have to have surgery to change the cowbell understandably.
37:33
Yeah.
It just took a while for me to get convinced and then one thing that convinced me is I was just getting so much worse.
Yeah, I mean, I couldn't even I could barely take a shower, you know.
Standing up in the shower.
My knees were buckling.
37:49
I'm like, I'm so I'm like basically dead at this point.
Point I felt like so I'm like okay whatever let's just try anything and everything so you're not working at that point.
No he's working working barely but like I said my job is was really easy about as easy as it can get.
38:09
And I got I've I'm very thankful that I was able to find that job.
Did you feel like that's pretty much all you were doing though, like you were just doing the job and then sitting and then yeah, so I didn't have any like no.
Life.
I didn't do anything.
I know how it was.
38:24
It was in bed.
If I was not at work, I was in bed 7 days a week, 16 hours a day, you know, on the weekends the entire time, I didn't leave India just stuck.
Yeah.
And so at that point it's like, well, what do we have to lose at this point?
38:41
Just trying this.
So so Theresa how did you feel about going through another procedure and another thing or are you doing all the research?
This Whole time like was this next thing?
Yeah.
Yeah.
We got inspiring and in June of 22 and it was activated in August of 22.
39:03
So okay not that old but I've been super skeptical the whole time.
Everything else you kind of feel this like semblance of like oh whoa this is you know because the research looks react and you're Googling certain things.
39:19
Yeah IMA help sleep apnea sounds really great.
Yeah, what you don't look at is like house far of an advancement.
Do you need an order for it to actually help sleep apnea and that's a piece of limiting and also so sorry to interrupt you, but and the other thing, I always find with any surgical procedure is, people don't know to ask the right questions of their surgeon.
39:46
So, surgeons will vaguely say, I think this could help you.
And patients, don't say, what does that mean?
What does surgical success mean to you?
Because a lot of Surgeons are will think of like they have this kind of weird way to work it out where their light will if you half the hiii that's a successful surgery but if somebody has 80 events an hour and then you half it to 40, they're still on CPAP like you know and it's like telling a patient.
40:22
This is a successful surgery, most patients think of successful as being I no longer need to use CPAP or do anything else.
It's just fix my problem.
So I think that there's a lot of issues with the way that we talk about any of the surgeries.
40:39
Yeah, yes.
So subject.
Yeah, yeah, yeah.
So when you know, when we did Inspire I've been I was skeptical going in.
I was skeptical afterwards and Just because you felt like it was a newer procedure or you just weren't sure it's new.
41:00
We've been burned so many times.
Yeah.
You know, we re it yes.
And at that point it's been so many years that it's just like you almost.
Don't want to let yourself go there either because you'd rather be prepared to be let down and be pleasantly surprised.
41:19
Yeah, it's just too hard to like feel.
Those things the hope and then like the pain again.
Yeah.
Immense sadness when your left down every every time you know and then just can your partner go through that as well.
Like so many surgeries.
It's so dangerous.
41:35
Yeah.
Yeah.
What are worried?
So but you did end up doing it and then what happened when.
So the actual surgery itself is not that big of a surgery, right?
Compared compared to double jaw surgery and all the stuff you had with your.
Yeah.
Yeah.
41:52
You know, you're not supposed to lift your arm up, shoulder height, at the end of the first week, you know, I'd almost forget and let sit up like, oh no, you know, I ruined it because it's really bad.
Pain is minimal.
Recovery animal very, very easy, so that's good.
42:08
But and then what happened when they turned on are activated it.
Oh man, we were on cloud nine.
We were so excited because you're like this has to be it.
It's just my tongue, right?
It's just a tongue, right?
Like, there's nowhere that song.
We're gonna treat it may be so great.
42:24
Yeah, we were like we were planning our lives out over gonna die.
I'm feeling the Hope.
Yeah, we just planned out everything.
On my gosh, we can get our lives back.
I can get a different job and do all these different things.
He wants to get another degree, you know, all the things.
Yeah.
Yeah.
42:39
And the first two nights, we're actually pretty.
Dang good.
Yeah.
But a couple really good.
Yeah.
And then ever since then it hasn't been good and then it was like frightening like some of the The worst days we've had where we even started to question like did we miss something something else wrong with you just be sleeping powder.
43:02
Just be sleep apnea, right?
But what you don't realize is that thing, is jolting your tongue forward with an electrical stimuli like your arousal index and fragmentation is also probably going to be pretty high as your body is getting used to something.
43:17
That's that invasive, I guess is the, right?
It's in, All do, you know, every single night.
So that was an August.
And here we are in April again with the compliance and were you able to do another sleep test with?
43:34
Yes.
So with it and what did that show?
Do?
The first one in lab it didn't really change much.
I think it brought my hid, my overall down to a 23 and then my HR my back was a 37 and at that point they were just trying to tell me.
43:51
Oh, this is You know, this might be the best you're going to get and I like, you gotta be kidding me because when I went on a higher level, the higher I went the worst that was going to be my next question.
So because my understanding of the inspiring plan is there's a certain like you have a little remote control and so it can be adjusted up.
44:16
Yeah.
And so those adjustments were making me worse and I think part of the fact was After I had that original MMA surgery, my tongue resting on the roof of my mouth actually like closes off my Airway.
I can't push my tongue up.
44:32
It actually closes off Airways really uncomfortable so I'm like hold my tongue down but the Inspire kind of pushes my tongue up and for.
So when I go on these higher voltages it's putting my tongue up more.
Hmm.
That's why we didn't really see much of a reduction in hi and that's a speculating just because Right.
44:52
That's what the doctor said.
That's right.
Yes station and and it took us until very recently, as we're still, you know, doing Inspire he goes up point one volts every week, we've been doing it and he's reached to point.
45:08
He got all the way up to two point, nine volts of stimuli every night but that is like quite high and it was waking him up a lot.
So I think he's been 2.64 like I don't know what the couple months now but It took us until now to kind of call time out and say we never actually looked at why he got worse after that initial MMA back in 2020, what happened?
45:33
Yeah, so that's kind of where we're at now and we started seeking out these private doctor's and really trying to type in the right Search terms at this point because now we know more.
Yeah.
And I think there's so much to know.
45:50
Yeah.
And if he was using this Us Inspire at a 16.
Like when he started all this way back.
When I know, I know we would be working.
Yeah.
Because yeah, those numbers down.
It's just bringing down.
No, I'm not versus a 53, big difference, right?
46:09
And yeah.
And there's a lot to the Inspire as far as, you know, getting used to it and over time, it is working a little better now and it today's day it's got my numbers.
So, like the gradual, it's It's like you instead of kind of like ramping up, you kind of a gradually, you've been building.
46:28
So that's probably a good plan is high.
As I can be right now is 2.6.
I can't go higher soon as I try to go one notch higher, my sleep, just completely derails.
You just wake up too much.
Yeah, yeah and I have a lot of really interesting.
It's really interesting.
46:44
I wish there was a way for me to try it even though, like, like I don't really need to have it but like I kind of wish I could try it just didn't know what it feels like.
If I just having I can hear it.
Like I can hear it like the movement of the tongue.
47:02
Yeah his tongue but I can also if I just kind of come a bit closer because there's a lead in his throat it's like did this it's I can hear it at night.
It's pretty wild like that food.
Yeah.
It's really it's really cool.
And I'm like always okay turned into mine.
47:20
Yeah, it's actually I mean for all So he's still alive which I know I shouldn't laugh about it but it's like that.
Yeah yeah yeah you know we're seeing some private doctor's and we're looking you know I've done my mouth functional therapy as well.
47:37
Yeah.
And you know also there's speculation that the Inspire can actually strengthen the tongue itself just from that stimulation.
That's really interesting party that has why I've been able to get better numbers with.
It wasn't me.
Yeah.
Yeah, yeah.
47:53
I mean like I think just my approach to therapy it just depends on the person but like I've heard a number of people have really great results just from being really consistent with that.
And you know, like even if it's not their only way that they're treating their sleep at me.
48:10
I just kind of like, really helps.
Yeah, whatever else they're doing, whether it's like an oral Appliance or a different thing.
So just so you're planning on on looking at revising, the No, double jaw surgery.
Oh yeah, yeah, we're in that now.
48:26
Actually, I'm a surgeon to get the hardware removed first, okay?
Then every Vision double jaw surgery?
Yes, crazy.
So, do we have a time frame on when that will happen?
This, my Hardware is getting removed at the end of this month.
April, okay.
48:42
Now it's supposed to be not the worst surgery in the world, you know, they're still very well, not for you.
Yeah, yeah.
And then We're hoping like august-september.
We can delete a revision.
Wait.
48:58
Six months from the heart of removal but we're trying to push him a little bit because that's it's hard to.
It's hard to wait.
I know.
Yeah you know and I think you know actually at this point given we did two recent watch, Pat one test with our private sleep doctor, who all of these people at this it's like this like a boutique Health Care.
49:23
Which is not around that we've entered before it.
And it's, we're starting to learn.
They don't do insurance at all, right, which is scary.
But I just don't see how we validate taking him to anybody.
That's not the absolute best possible option for us to, to treat this.
49:41
Yeah, even looking to cure it.
Like we just want this treatable so that yes, we can.
Yes on how.
But all that to say, you know, the two most recent watch Pat tests, Did yield some pretty interesting results over a overall, aah.
50:00
I was down quite a bit like 78 already.
I was still like, in the moderate range like 15:15, which I think we place so much emphasis on the h.
I but I really do think like, yeah, which is just don't that that's an entire like, I mean I could literally have a, for our panel discussion on, aha, I am and how it's not, it's not the be all and end all yes.
50:28
Yeah and it shouldn't be but looking at those things and then like his REM sleep has increased with you know the level and being consistent.
Yeah, Inspire first time in like 10 15 years ago.
That's amazing.
Yeah.
So I just feel like, you know, the surgeon that we're working with said that the MMA was deficient the first one that we did, they didn't bring him out far enough.
50:50
He has concern over that He said, revision MMA is an option that coupled with the fact that the Inspire is doing something gives me actual hope that's based in something that I'm quite hopeful, like week, if we really can optimize his Airway.
51:13
And then, real old onl this down, like I actually think we might be able to do something.
Yeah, huge breasts.
Yeah, huge.
Yeah.
And a long.
Are you still doing the myofunctional therapy or you just did it for a while?
Yeah, I do it a little bit.
51:28
I just I just have to be careful with with getting.
I don't want to get used to having my tongue to squish to the roof of my mouth because that causes problems for me.
So I and that's like the whole thing.
They're telling you to do those things in my personal therapy.
So that's a problem because of the surgery you'd already had.
51:47
So I never had that before was after the surgery and just something weirds going on.
He's hung went awry and else.
Yeah, that my function, I think it does help but I can tell the stimulator.
I almost feel like my tongue is a little stronger for a little more like that's great.
52:07
So I think it is actually making it stronger.
Yeah, they're used to it.
I still can't go up in levels and I think I'm at a much better.
I think this is the best place I've been in the past seven years.
It's coming on.
It's a great it's like what you were saying to Point of like you're treating it and you're okay, you very clearly, still have a sleep disorder.
52:28
Yeah, I think that's sort of where we're at and then there are still kind of those dips like today.
Yeah, so so days today though Trent like you're you're feeling more kind of functional than you were getting bad days, kind of thing.
52:43
Yes, it sound you kind of always term it where when I have those extremely bad days and I'm in bed and just showering is almost too hard.
We call it like being Sick task.
Not sick.
Yeah, I heard and I haven't had one of those sick days and did it.
52:58
Has anybody ever talked about chronic fatigue?
Syndrome are not realistic.
They have that in.
Don't really think I have it because I don't have any post-exertional malaise.
And right, I have any type of decent sleep.
53:14
I mean, I'm a changed person night and day and we the next.
Yeah, it's astonishing like, how your sleep just Completely facts everything.
Yeah.
Almost doesn't matter what you eat, how you exercise, what you do this up if your sleeps not there.
53:29
Yeah, yeah.
I like I've definitely just talked to a lot of people with with the sort of and they've gone on diagnosed with sleep apnea and they've been diagnosed with chronic fatigue syndrome.
But then, you know, and then like, I know, Graham still need who, I interviewed on the podcast, like, he only find out that he had.
53:49
Severe sleep apnea because he wanted to To go to the specific and chronic fatigue doctor, and that doctor won't see anyone unless they've had a sleep study.
And so Graham was like, well it's not that and then he was like, oh, I have severe sleep apnea so no wonder, I feel terrible.
54:09
Hi and so, yeah, I have some wonderings just about, you know, because there are clinics and things that do CFS and they're talking so much about the comorbidity between Osa, or, or Central and And I just wonder so much because we place so much on the h i and it being well managed rajaiah, slow like now, what's the number of people really who have CFS versus actually are factors of sleep apnea that aren't being considered totally agree with you?
54:40
Yeah, the ton of people.
Yes.
I'm still making sure because with my age I'd be like, oh your face, you're good to go.
Yeah.
But then we consider the RTI and Still moderates.
Yes, I know.
54:55
I yeah, we could try that one.
Yeah, I feel so a lot of it just comes out of like, it drives me bonkers when people talk about classic symptoms of sleep apnea or classic like phenotypes being older, overweight men with really high each eyes.
55:17
And and so it feels like because that was the first group That was researched because they were like these people have a problem.
Well, is it?
And but now it's like we're Way Beyond that, we know that there's a ton of like young thin fit people who you know, maybe have a lower H eyes, but their life is very impacted.
55:40
So it's just like it seems like it's takes way too long for researchers to kind of catch up with what they need to be looking at.
But I think we're starting to see more where people are looking at women.
And younger people and but we just need way more research and I think in time I really hope that we it won't just be looking at a child the time.
56:01
Yeah, yeah.
Thanks, absolutely.
And I think so your to do like if we do get him to a place where he's treatable just, I almost wonder and I don't want to go there but like from a brain kind of perspective, you know.
56:17
Yeah, 32 years.
This is now, how is nervous thinking functions?
Like, do we need to do some Every kind of protocol stuff on his on the neuro side of things I do.
So I totally don't want to depress you, but I have to say, like one of the interviews I did was with
56:35
Dr. Allan pack, who is a researcher at the University of Pennsylvania and he has, I don't know if you listen to that one.
I'm always.
Like, did you listen tell her fucking?
This is my husband's, like, never listen to any.
And, like, people are just like, well, I listen to like, for, but anyway, Do this one without impact, like I really want to interview him for my own curiosity because of my own experience.
57:01
So he took a cohort of people in Iceland and they only have one Sleep Clinic and Iceland.
So all the people come from all over the island to this one Sleep Clinic.
So they know that they're getting the whole population and of the people that are diagnosed, which we know is not everyone, but they look at what they've done is over years.
57:21
They've looked at Those people, and they've looked at the people here are consistently using CPAP and then after two years of the musing CPAP every night, they split them into groups, they ask the people are you still sleepy during the day?
Or do you feel energized and wakeful during the day?
57:39
And so the people that are still sleepy then they're looking at why?
That is.
So that's fascinating to me, because that's my situation and so one of his, they still need to do a ton more research.
But one of his His theories is the hypoxia to your brain, over that amount of time before you're diagnosed.
58:01
Like, maybe that has something to do with still being feeling sleepy during the day.
So, to me that's really depressing because maybe there's not that much we can do about that.
But it also isn't depressing because it makes me feel super validated and like, yeah, I'm telling you, I'm still really tired.
58:21
Like, So yeah, so at least people like, I feel like to me it feels good that at least people are doing some research where they're asking the right questions.
So, yeah.
But so basically like that's where we're at now, right?
58:38
We're gearing up for a revision of the doll surgery and then you'll need to come back.
Yes.
Oh my gosh.
Yes.
Right.
You know, I'll put all the links in the show notes.
But Teresa, do you want to tell everybody?
Where people can find your blog and your Instagram.
58:55
My Instagram is sleep lie, and then underscore Ever After together on Instagram, and the blog is just sleepily Ever After blog.com.
Perfect.
What did you think?
59:10
Trent, when Theresa said she was going to start a blog that was great.
I thought it was a good way, just to kind of, like, just wait, wait, raise awareness of her to kind of just like, you know, get get it out a little bit.
Yeah, I think it's great.
Like I feel so like I really underestimated when I started my podcast.
59:30
Like just how many people were out there dealing with this?
Yeah, because I think I think like I always just kind of thought, well, I'm the only Person and then you realize like you're not the only person.
There's so many people dealing with this and it's a law.
So thank you for what you're doing and I can't wait to hear how it all goes.
59:51
I know ice to.
Thank you so much.
Thanks for giving us a time to talk about this.
Like I said, we just like this is our favorite thing to talk about it.
But yeah, my pleasure.
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