11 Years and almost no Improvement

sephiro499 · Post by **sephiro499** » Thu Dec 26, 2019 11:26 am

I put the sd card in my pc last night and put it back but the data from when i went back to sleep disappeared? I think I found the data and its in the chart now. I'm too tired to figure this out.

Edit Took a nap and posted that too.

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 12:00 pm

Last night changed to a simplus FFM mask and leaks are almost gone! But still so unrested....

Jas_williams · Post by **Jas_williams** » Fri Dec 27, 2019 1:05 pm

Your numbers look good rather than the wake ups. There may be something else going on.

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 1:08 pm

Jas_williams wrote: ↑
Fri Dec 27, 2019 1:05 pm
Your numbers look good rather than the wake ups. There may be something else going on.

When I was first put on cpap that's what I use to say 'sleep wake up, sleep wake up, sleep wake up'. I've already decided on double jaw surgery, since per the surgeon 'you have a lot to gain'. This is just to try and improve my quality of life for the next 12 months. Cpap just isn't for me.

While I can't prove any causation, around 18 months after starting cpap (and being extremely miserable and unrested I might add) I developed a circadian rhythm disorder. Dr Krakow's talk really resonated with me, basically saying that the sleep itself caused so much distress that you would do anything you could to not sleep. And I do fit (somewhat) with the type of person he treated -someone with anxiety and PTSD.

I guess I'm just 'intolerant' of masks, hoses, and pressures.

Jas_williams · Post by **Jas_williams** » Fri Dec 27, 2019 1:18 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 1:08 pm

Jas_williams wrote: ↑
Fri Dec 27, 2019 1:05 pm
Your numbers look good rather than the wake ups. There may be something else going on.
When I was first put on cpap that's what I use to say 'sleep wake up, sleep wake up, sleep wake up'. I've already decided on double jaw surgery, since per the surgeon 'you have a lot to gain'. This is just to try and improve my quality of life for the next 12 months. Cpap just isn't for me.

While I can't prove any causation, around 18 months after starting cpap (and being extremely miserable and unrested I might add) I developed a circadian rhythm disorder. Dr Krakow's talk really resonated with me, basically saying that the sleep itself caused so much distress that you would do anything you could to not sleep. And I do fit (somewhat) with the type of person he treated -someone with anxiety and PTSD.

I guess I'm just 'intolerant' of masks, hoses, and pressures.

Be aware you may end up having extreamly painful surgery and still be in the same situAtion and feeling non rested. Despite what a surgeon recommends.

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 1:22 pm

Jas_williams wrote: ↑
Fri Dec 27, 2019 1:18 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 1:08 pm

Jas_williams wrote: ↑
Fri Dec 27, 2019 1:05 pm
Your numbers look good rather than the wake ups. There may be something else going on.
When I was first put on cpap that's what I use to say 'sleep wake up, sleep wake up, sleep wake up'. I've already decided on double jaw surgery, since per the surgeon 'you have a lot to gain'. This is just to try and improve my quality of life for the next 12 months. Cpap just isn't for me.

While I can't prove any causation, around 18 months after starting cpap (and being extremely miserable and unrested I might add) I developed a circadian rhythm disorder. Dr Krakow's talk really resonated with me, basically saying that the sleep itself caused so much distress that you would do anything you could to not sleep. And I do fit (somewhat) with the type of person he treated -someone with anxiety and PTSD.

I guess I'm just 'intolerant' of masks, hoses, and pressures.

Be aware you may end up having extreamly painful surgery and still be in the same situAtion and feeling non rested. Despite what a surgeon recommends.

You are right. But what else is there left to try? I've already spent money out of pocket paying Dr's (that don't take insurance). I feel like I've already turned over every stone so to speak.

joeljjk11 · Post by **joeljjk11** » Fri Dec 27, 2019 2:07 pm

Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 2:13 pm

joeljjk11 wrote: ↑
Fri Dec 27, 2019 2:07 pm
Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

I can't wear a chinstrap because it's painful. And if it were not for Cpap I can hardly even wear headphones the bigger and heavier the worse it is. I generally use earbuds. Sometimes just wearing a hat is painful. MMA has other benefits for me besides just sleep apnea that can only be accomplished through surgery. My ins will only pay for it to treat sleep apnea.

I'll try to stay on topic but after thinking about what Jas_williams said , when I do get jaw surgery that wont make my ptsd go away.

I'm willing to try it anyway. Hey if it doesn't work, I'll be sure to be on here warning everyone

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 2:28 pm

joeljjk11 wrote: ↑
Fri Dec 27, 2019 2:07 pm
Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

I go back to Dr Krakow's study with insomniacs. He put them on auto bilevel and ASV and the insomnia went away. [Some of]These were people without OSA!

http://www.sleepreviewmag.com/2014/01/a ... a-and-sdb/

In Krakow’s lab, insomnia patients with comorbid sleep-disordered breathing are titrated to round their inspiration and expiration curves,

I scanned through the flow for last night and it looks ok (to me) but then every 5-30 mins it goes haywire. Does this have any diagnostic specificity? I have no idea. I just thought the idea of 'rounding the curve' could have implications for sleep quality (that is what dr krakow says anyway).

Is the Vauto yielding any better data?

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 2:51 pm

Here is more flow info (if it matters)

palerider · Post by **palerider** » Fri Dec 27, 2019 2:58 pm

joeljjk11 wrote: ↑
Fri Dec 27, 2019 2:07 pm
Your leakage is bad

No, no it's not.
It could be better, but it's certainly not "bad".

palerider · Post by **palerider** » Fri Dec 27, 2019 3:01 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 2:51 pm
Here is more flow info (if it matters)

Look to other things that are disturbing your sleep. you're showing sleep disturbances in the breathing, but they don't seem to be caused by breathing problems.

chunkyfrog · Post by **chunkyfrog** » Fri Dec 27, 2019 3:17 pm

If you end up having the surgery, please come back and let us know how it went.

sephiro499 · Post by **sephiro499** » Fri Dec 27, 2019 3:19 pm

palerider wrote: ↑
Fri Dec 27, 2019 3:01 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 2:51 pm
Here is more flow info (if it matters)
Look to other things that are disturbing your sleep. you're showing sleep disturbances in the breathing, but they don't seem to be caused by breathing problems.

I had very invasive thoracic surgery when I was a teenager. Now they use a minimally invasive technique. Just to give you an idea of the surgery I have so much scar tissue it looks like I have pneumonia and it goes from mid chest all the way down to my diaphragm.

This surgery was 25yrs ago but I only learned of this scar tissue this Summer before a routine physical!

But I've had a PFT more than once, and it is always fine. I do sleep with a 'posture brace' and I have to do that to stop my shoulder from hyper extending. The only other thing I can think of disturbing my sleep/breathing is pain or the brace that secures itself around the abdomen.

edit: I think I need to see a Physiatrist next year after typing all of this out to get a real brace from a DME and an overall general opinion.

palerider · Post by **palerider** » Fri Dec 27, 2019 4:13 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 3:19 pm

palerider wrote: ↑
Fri Dec 27, 2019 3:01 pm

sephiro499 wrote: ↑
Fri Dec 27, 2019 2:51 pm
Here is more flow info (if it matters)
Look to other things that are disturbing your sleep. you're showing sleep disturbances in the breathing, but they don't seem to be caused by breathing problems.
I had very invasive thoracic surgery when I was a teenager. Now they use a minimally invasive technique. Just to give you an idea of the surgery I have so much scar tissue it looks like I have pneumonia and it goes from mid chest all the way down to my diaphragm.

This surgery was 25yrs ago but I only learned of this scar tissue this Summer before a routine physical!

But I've had a PFT more than once, and it is always fine. I do sleep with a 'posture brace' and I have to do that to stop my shoulder from hyper extending. The only other thing I can think of disturbing my sleep/breathing is pain or the brace that secures itself around the abdomen.

edit: I think I need to see a Physiatrist next year after typing all of this out to get a real brace from a DME and an overall general opinion.

Pain certainly can disturb sleep. If something is hurting, you'll wake up a little and try to move to a position that hurts less.

11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement

Re: 11 Years and almost no Improvement