Legal Action? Lawyers Here? Missed Diagnosis

[Gideon]

Sounds like you fit in with many of us here.  I started with years of denial.

To best prepare for your journey read the contents of the links in my signature.  Especially the New to Apnea and the Mask Primer links for now.
Your machine controls the the pressures but the bask delivers the pressures and your face is unique.  Try masks at every opportunity you get, read the Mask Primer for strategies.

Fred

[Sleepster]

I am LIVID, because that's 25 years I COULD HAVE BEEN USING CPAP.

I had chronic headaches for about that same length of time but it wasn't until I reached age 50-something that I was diagnosed with obstructive sleep apnea (OSA). On the one hand I do wish that when I complained to a doctor about awaking in the middle of the night with a rapid heartbeat she would have suspected OSA, but she didn't. On the other hand I think about my father and grandfather who lived the last part of their lives miserably because they simply couldn't sleep and I'm grateful to be alive in an era where CPAP therapy is available. They didn't have that option, and it's only now that it is available that doctors are learning to diagnose it. Back then it didn't matter because the only remedy was a tracheotomy!

No point dwelling on it.

Also, no point in dwelling on future options.

Just get a proper sleep study and go from there.

At our age, 50-something, we've lost enough muscle tone to make OSA worse than it was when we were younger.

[K.L.]

Thank you all for responding!

I haven't yet heard from the doctor, who's filling in for my regular PCP. Maybe that's why; regular is on leave till early 2018, and she's very proactive, so I'm bummed I have to deal with a doctor I've never met in person.

In the meantime I've tried to find info if you can have only a few apneas a night, under that threshold of below 5 AHI.  Can't find this anywhere. I'm a VERY light sleeper. I've always told people that I can be awakened by a pin dropping 300 feet away. So I'd think that the noise of gasping would be enough to awaken me every time I have an arousal and recovery gasp. So I'm thinking that the only time I have an apnea is when I'm actually aware of it...which would put me in the normal range of occurrence. I find it hard to believe I could actually sleep through any of these.

However, I'm so very aware that people sleep through hundreds of apnea events per night. My father has slept through them for years. He refused to believe he stopped breathing until I showed him a video. Now he believes it.

But I've been awakened by the slightest of sounds, ripped right out of REM on so many occasions. I'm thus finding it impossible to believe I could sleep through the sensation of gasping, let alone the noise it makes.

I never dream about choking or suffocating, so it's not as though REM keeps me asleep. I also have epic dreams all the time, so my REM is certainly in full-on mode. If that means anything.

I audio taped my sleep last night and have been playing it back in bits and pieces to see if there's any gasping, loud breathing or snoring. So far nothing (54 minutes in), though at the beginning I had three incidents (full recollection) of "sub-gasps" or mini gasps, nothing major. I had my neck extended a bit against a recliner back. When I adjusted I had no more mini gasps. I just got the recliner.

I also know that 5% of patients don't snore.

I live alone so don't have objective feedback on snoring or gasping.  I sleep with a tightly closed mouth and have already decided I'm going to get a nasal mask. I assume I won't need water or a humidifier since I'm a 100% nasal breather. Maybe I'm being too pre-emptive, but at least if I'm diagnosed, I won't be shocked and overwhelmed.

[sonicboom]

fyi.... just because you are a 100% nasal breather doesn't necessarily mean you wont need humidity. It is a comfort feature and you won't really know until you are on the mask a few nights. Your two symptoms do seem to be indicative of OSA but your study shall tell. Let us know how you do and welcome to the Board.

[trish6hundred]

i K.L.,
WELCOME! to the forum.!
I wish you good luck on your sleep apnea journey.
Hang in there for more responses to your post.

[HalfAsleep]

I don't snore.     I occasionally catch myself snorting. I can only catch myself if I wake up. Otherwise I have no way to know....

I didn't make any noises during my sleep study. My sleep study didn't capture much of anything, except....apnea.

Wait for your sleep study before diagnosing yourself. And don't talk yourself out of it! Even if maybe you aren't gonna like it (either the discomfort or the results). You've been waiting years for this. 

In fact, the sleep study may turn up something you have no idea about yet....

[Sleeprider]

Thank you all for responding!

I haven't yet heard from the doctor, who's filling in for my regular PCP. Maybe that's why; regular is on leave till early 2018, and she's very proactive, so I'm bummed I have to deal with a doctor I've never met in person.

In the meantime I've tried to find info if you can have only a few apneas a night, under that threshold of below 5 AHI.  Can't find this anywhere. I'm a VERY light sleeper. I've always told people that I can be awakened by a pin dropping 300 feet away. So I'd think that the noise of gasping would be enough to awaken me every time I have an arousal and recovery gasp. So I'm thinking that the only time I have an apnea is when I'm actually aware of it...which would put me in the normal range of occurrence. I find it hard to believe I could actually sleep through any of these.

However, I'm so very aware that people sleep through hundreds of apnea events per night. My father has slept through them for years. He refused to believe he stopped breathing until I showed him a video. Now he believes it.

But I've been awakened by the slightest of sounds, ripped right out of REM on so many occasions. I'm thus finding it impossible to believe I could sleep through the sensation of gasping, let alone the noise it makes.

I never dream about choking or suffocating, so it's not as though REM keeps me asleep. I also have epic dreams all the time, so my REM is certainly in full-on mode. If that means anything.

I audio taped my sleep last night and have been playing it back in bits and pieces to see if there's any gasping, loud breathing or snoring. So far nothing (54 minutes in), though at the beginning I had three incidents (full recollection) of "sub-gasps" or mini gasps, nothing major. I had my neck extended a bit against a recliner back. When I adjusted I had no more mini gasps. I just got the recliner.

I also know that 5% of patients don't snore.

I live alone so don't have objective feedback on snoring or gasping.  I sleep with a tightly closed mouth and have already decided I'm going to get a nasal mask. I assume I won't need water or a humidifier since I'm a 100% nasal breather. Maybe I'm being too pre-emptive, but at least if I'm diagnosed, I won't be shocked and overwhelmed.

This would be so much easier if you just grabbed an auto CPAP and downloaded #Sleepyhead.

There are a lot of reasons to just use CPAP, especially auto CPAP. I think your marginal results from many years ago, will probably have morphed into moderate OSA by now. The best bet is just get the answers, and a lab study is much better than a home study.

[KSMatthew]

Thank you all for responding!

I haven't yet heard from the doctor, who's filling in for my regular PCP. Maybe that's why; regular is on leave till early 2018, and she's very proactive, so I'm bummed I have to deal with a doctor I've never met in person.

In the meantime I've tried to find info if you can have only a few apneas a night, under that threshold of below 5 AHI.  Can't find this anywhere. I'm a VERY light sleeper. I've always told people that I can be awakened by a pin dropping 300 feet away. So I'd think that the noise of gasping would be enough to awaken me every time I have an arousal and recovery gasp. So I'm thinking that the only time I have an apnea is when I'm actually aware of it...which would put me in the normal range of occurrence. I find it hard to believe I could actually sleep through any of these.

However, I'm so very aware that people sleep through hundreds of apnea events per night. My father has slept through them for years. He refused to believe he stopped breathing until I showed him a video. Now he believes it.

But I've been awakened by the slightest of sounds, ripped right out of REM on so many occasions. I'm thus finding it impossible to believe I could sleep through the sensation of gasping, let alone the noise it makes.

I never dream about choking or suffocating, so it's not as though REM keeps me asleep. I also have epic dreams all the time, so my REM is certainly in full-on mode. If that means anything.

I audio taped my sleep last night and have been playing it back in bits and pieces to see if there's any gasping, loud breathing or snoring. So far nothing (54 minutes in), though at the beginning I had three incidents (full recollection) of "sub-gasps" or mini gasps, nothing major. I had my neck extended a bit against a recliner back. When I adjusted I had no more mini gasps. I just got the recliner.

I also know that 5% of patients don't snore.

I live alone so don't have objective feedback on snoring or gasping.  I sleep with a tightly closed mouth and have already decided I'm going to get a nasal mask. I assume I won't need water or a humidifier since I'm a 100% nasal breather. Maybe I'm being too pre-emptive, but at least if I'm diagnosed, I won't be shocked and overwhelmed.

Maybe a white noise generator would help.  A box fan on low, blowing away, can produce a good white noise, too.

It's important to know that a "gasp" isn't necessarily an apnea.  An apnea has a specific definition, it's in the attached link.

One problem with OSA is that it prevents you from getting the REM sleep that produces dreams.  Many of us have vivid dreams after we go on CPAP, since we are finally getting that REM.

Here's a copy of the National Institutes of Health (NIH) (USA) requirements to make an OSA diagnosis. I don't know if it's the "official" document or not, it was just one of the first that I found online:

>>>
At least one of the following:

1. Sleepiness, hypersomnolence, exhaustion or insomnia.
   
   
2. Arousals with feeling of asphyxiation/ suffocation.
   
   
3. Snoring, breathing pauses witnessed by sleep partner.
   
   
4. Snoring, breathing pauses witnessed by sleep partner.
   

Polysomnography findings:

1. Apnea, hypopnea or RERAs ≥ 5 per hour of sleep.
   
   
2. Recording of respiratory effort during part or the whole event.
   

Polysomnography findings:

1. Apnea, hypopnea or RERAs ≥ 15 per hour of sleep.
   
   
2. Recording of respiratory effort during part or the whole event.
   

The disorder cannot be attributed to other conditions, use of medicines or other substances.
Severity criteria: The criteria of the severity of OSAS are a combination of the severity of daytime sleepiness and the value of apnea-hypopnea index (AHI).

• Severity assessment of daytime sleepiness can be subjective and objective. Subjective assessment is obtained with questionnaires. Epworth Sleepiness Scale (ESS) is the most commonly used, which has a range of 0-24 and a minimum normal value of 10.
  
  
• Apnea - Hypopnea Index (AHI) or Respiratory Disturbance Index (RDI)
  

1. Mild: 5-15 events per hour.
   
   
2. Moderate: 15-30 events per hour.
   
   
3. Severe: more than 30 events per hour
   
   <<<

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765300/

[KSMatthew]

Edit --

Instead of editing my previous post (there is some valid info), I found the AASM (American Academy of Sleep Medicine) sleep apnea guidelines:

https://aasm.org/resources/clinicalguide...ng-osa.pdf

I think the info you were asking about is here:

>>>
The third edition of the International Classi cation of Sleep Disorders (ICSD-3) defines OSA as a PSG-determined obstructive respiratory disturbance index (RDI) ≥ 5 events/h associated with the typical symptoms of OSA (e.g., unrefreshing sleep, daytime sleepiness, fatigue or insomnia, awakening with a gasping or choking sensation, loud snoring, or witnessed apneas), or an obstructive RDI ≥ 15 events/h (even in the absence of symptoms).
<<<

>=5 with other symptoms, or >=15 with no other symptoms.

[Timur]

Over 50 and either perimenopausal or menopausal, chances are much higher that you will have over 5 apneas per hour.

3 events per hour say in our 20s and 30s morphs into 10 to 20 events per hour in our 50s and 60s thanks to hormonal  changes and muscle tone loss (even in the fit and thin)

I often recommend to my friends in their 50s that they get tested for sleep apnea. 

So far, of the 3 who have taken up the suggestion and had sleep studies, all are now on CPAP.  They had AHIs in the high teens and were desaturating into the mid to low 80s..

They all had fragmented sleep, vivid dreams (classic sign of waking up during REM), feelings of being choked, night sweats and insomnia. 

Their doctors never considered sleep apnea despite these women reporting the  classic symptoms, because of course everything is blamed on menopause at this age. So they had to specifically request a sleep study and be proactive.

Unfortunately doctors are simply not aware of just how common this is. Oddly enough dentists seem to be a lot more so. 

Anyway, continue to insist on finding out what is happening to you at night.