any atypical apnea patients out there?

[elocin71]

To look at me, you wouldn't guess that I would have sleep apnea. All the doctors like to point this out to me however my 45 AHI says otherwise. I've gotten my AHI down to 2 or 3 with CPAP but I am still tired all day, just not as much as before. (I don't know how I managed to live with the 45!) I still wake myself with snorts and it has gotten worse with allergy season.

I have seen an oral surgeon and an ENT who have both suggested surgeries but it felt like they were not really sure that it would help but that it's just something that they can try and see what happens. I was recommended to the oral surgeon by an orthodontist who noticed my short jaw and asked me about any sleep apnea symptoms. The surgeon said that my airway isn't narrow enough to warrant a MMA surgery right off (whew!) and that he would try a tonsillectomy and palatal reduction first, saving the hyoid option for later. The ENT recommended tonsillectomy also plus turbinate reduction. I'm not worried so much about the tonsillectomy part but am hesitant with the turbinate reduction.

It all seems like a guessing game and I'm scared to let them just start cutting things out, hoping that it will work. You can't put that stuff back! My sleep doctor told me that sometimes removing one obstructions just causes a bottleneck and worsening the obstruction at another point.

Any advice?

TIA
Nicole

[kteague]

Hello and welcome. How long have you been using CPAP? I am thinking you have a data capable machine since you mentioned your AHI. If you're looking at detailed data, make sure the remaining events are not real long in duration. It may be possible a tweak of your pressure would get it even lower. Sounds like your treatment may not be optimized, since you mentioned still waking with snorts. I'd suggest posting data here and seeing what the gurus have to say. Are you getting adequate hours nightly? How does the quality of your sleep seem? Have you already gone through a basic checklist of things that can cause tiredness - medical conditions such as diabetes, thyroid dysfunction, anemia. Or medication side effect. Or nutritional deficiencies, particularly vitamin D and B vitamins.

CPAP can fix your breathing and as result help those things affected by OSA. If the CPAP was unable to correct the OSA or you were unable to use CPAP, surgeries may be worth cautious consideration. But if your OSA is well treated and you still feel tired, I don't see any reason to think any surgery would make you feel better. Now, if you're having to use a high pressure and that's problematic, then certain surgeries might be helpful. But without further investigation, I'm thinking talk of a surgery that even the surgeons don't seem optimistic about is premature. Just one non professional opinion.

As to atypical - if you're speaking of the body stereotype, I now am overweight, but was symptomatic of OSA when I was still average size and young.

[Wulfman...]

To look at me, you wouldn't guess that I would have sleep apnea. All the doctors like to point this out to me however my 45 AHI says otherwise. I've gotten my AHI down to 2 or 3 with CPAP but I am still tired all day, just not as much as before. (I don't know how I managed to live with the 45!) I still wake myself with snorts and it has gotten worse with allergy season.

I have seen an oral surgeon and an ENT who have both suggested surgeries but it felt like they were not really sure that it would help but that it's just something that they can try and see what happens. I was recommended to the oral surgeon by an orthodontist who noticed my short jaw and asked me about any sleep apnea symptoms. The surgeon said that my airway isn't narrow enough to warrant a MMA surgery right off (whew!) and that he would try a tonsillectomy and palatal reduction first, saving the hyoid option for later. The ENT recommended tonsillectomy also plus turbinate reduction. I'm not worried so much about the tonsillectomy part but am hesitant with the turbinate reduction.

It all seems like a guessing game and I'm scared to let them just start cutting things out, hoping that it will work. You can't put that stuff back! My sleep doctor told me that sometimes removing one obstructions just causes a bottleneck and worsening the obstruction at another point.

Any advice?

TIA
Nicole

Welcome to the forum.

In some ways, you probably share some or many of the same things that most of the rest of us have.
I would suggest putting off any surgeries until you've explored and tested all of the options with your therapy first.
Even with the AHI you mentioned, that isn't all that bad.

I would recommend filling in your profile with ALL of the equipment you are using and all of the settings. Many times it's a matter of tweaking various settings and options to get the therapy optimized.
Then, if you have some reports you could post for us to look at, we may be able to offer suggestions.


Den

.

[robysue]

The title of your post is: any atypical apnea patients out there?

Well let's see: I'm now 56 (turning 57 in July) and was diagnosed at 52. So my age is pretty typical of newly diagnosed OSA patients. But ....

I'm a 5'1" female who weighs 110 pounds on a "heavy" day, and less than that most of the time. And I've never weighed more than about 114 except when I was very pregnant. (And even at 9 months pregnant, I still weighed less than 130 pounds.) So I clearly do NOT fit the stereotype of overweight, middle-aged male. My diagnostic sleep test showed an AHI = 23.6, which is moderate OSA. Almost all the events were "hypopneas with arousal" and I had no official O2 desats on that diagnostic test. I also had poor sleep efficiency on the diagnostic test, along with somewhat less than expected N3 sleep and REM sleep.

Pre-CPAP I was not displaying any really obvious daytime symptoms of OSA. I was tired because of low grade pain issues a lot of the time, but I was not overly sleepy. Hubby had noticed that my snoring was getting worse and that he was occasionally waking up to the silence of my not breathing. By occasionally, I mean several times a week. I never remembered waking up gasping for breath or snorting pre-CPAP.

I do have a small jaw (and a history of orthodontic work back in the 70s), a tongue that is large for my mouth, and a small airway, according to some docs who've looked down my throat.

I also had a prolonged and difficult adjustment to CPAP: During the first 3 months of PAPing I felt 100 to 1000 times worse with PAP than I had felt pre-CPAP. A switch from CPAP to APAP didn't do much in terms of how bad I was feeling in terms of the crash-and-burn. Switching from APAP to BiPAP helped enough with the discomfort issues that I could start focusing on fighting the CPAP-induced insomnia that had set in during those first three months of PAPing. After 6 months PAPing, the daily hand and foot pain mysteriously disappeared. That was the first noticeable sign that PAP was doing something positive for me. It took another 3 or 4 months before I was actually subjectively sleeping as well or better than I had pre-CPAP.

Nowadays I can't imagine sleeping without the PAP: I've had to go PAP-less for a grand total of 3 or 4 days in the last 4 years. And each time, I've woken up miserable---in a lot of pain (hands, feet, and headache) as well as feeling totally unrested and unrefreshed. Overall I believe my energy levels are now at least as good, if not better, than they were back before I started PAP.

And personally, I'd never consider surgery for OSA: The published definition of "successful surgery" is typically a 50% reduction in AHI and the published "success rates" are often no better than 50% or so. That's not high enough odds for a genuinely successful outcome to my mathematical mind.

[archangle]

Welcome. Please put your equipment in your profile. There's a link at the bottom of this post telling you how to do this?

What CPAP machine do you have? How are you checking your AHI?

If your AHI is low with CPAP, I'm trying to puzzle out what good surgery is going to do.

[kaiasgram]

Nicole, I agree with kteague. On paper your PAP treatment is effective (meaning your AHI is below 5), so I would want compelling evidence that surgery makes sense and is worth the risks. And I'm not hearing that so far in your story.

There are people on the forum who have said that they really don't feel good until they get their AHI down to, say, 1 or 2 on a pretty consistent basis. So a more worthwhile pursuit for now would be to see if you can further optimize your PAP therapy, and those snorts suggest that there is room for improvement.

I'm sure you're a special individual but as far as "who gets apnea" you aren't really that atypical. There's still a misconception out there, even among medical professionals, that women and normal-weight people don't get sleep apnea. It took months and months of doctor appointments and futile medical tests before my doctor referred me for a sleep study and even then it was only because I finally dragged myself into her office and said "Hey, shouldn't we rule out sleep apnea?" I was a little underweight at the time.

Let's take a look at some of your therapy data and see what's actually going on.

[Cardinalphan]

I have been where you are. Ten years on the CPAP now. 4 years ago I had the surgery to remove my tonsils, palate reduced and back of tongue reduced to increase my airway. Didn't work and it brought on other swallowing complications the areas scarred so tight that I now have swallowing issues. The recovery from the surgery is tough, took about 10days. At 45 yrs old, not something I would recommend to anyone except for last resort. The ENT assured me that I was a great candidate with 80% success and I would be up and around in 3 days. My current ENT does his best to talk others out of this surgery. Be sure to get a second opinion.

[musculus]

To look at me, you wouldn't guess that I would have sleep apnea. All the doctors like to point this out to me however my 45 AHI says otherwise. I've gotten my AHI down to 2 or 3 with CPAP but I am still tired all day, just not as much as before. (I don't know how I managed to live with the 45!) I still wake myself with snorts and it has gotten worse with allergy season.

I have seen an oral surgeon and an ENT who have both suggested surgeries but it felt like they were not really sure that it would help but that it's just something that they can try and see what happens. I was recommended to the oral surgeon by an orthodontist who noticed my short jaw and asked me about any sleep apnea symptoms. The surgeon said that my airway isn't narrow enough to warrant a MMA surgery right off (whew!) and that he would try a tonsillectomy and palatal reduction first, saving the hyoid option for later. The ENT recommended tonsillectomy also plus turbinate reduction. I'm not worried so much about the tonsillectomy part but am hesitant with the turbinate reduction.

It all seems like a guessing game and I'm scared to let them just start cutting things out, hoping that it will work. You can't put that stuff back! My sleep doctor told me that sometimes removing one obstructions just causes a bottleneck and worsening the obstruction at another point.

Any advice?

TIA
Nicole

Getting worse with allergy season points to possible nasal congestion...nasal airway is the narrowest and a slight increase in turbinate size can greatly increase your airway resistance.

[Nick Danger]

Many ENTs and oral surgeons will encourage surgery - it is what they do and how they make their money. I have had the UPPP - no benefit. Hyoid and genioglossal advancement - reduced symptoms for about a year, then no further benefit. Septoplasty (deviated septum repair) - made it possible for me to use nasal pillows and lowered CPAP pressure from 13 to 9. If I had it to do over again, I would only do the septoplasty. Unlike many, I haven't had any lingering side effects of the other surgeries - so I've been lucky. Like most, those surgeries did not help me.

CPAP seems to be working (at least partially) by reducing your AHI to below 5. Now you need to figure out what aspects of your sleep continue to leave you feeling tired in the morning. There are a number of forum members who have been through what you have been through - and have had similar results (sleepiness despite low AHI). There are fine tunings that can be made that may relieve other aspects of your sleep that may be affecting the way you feel (for example, RERAs (respiratory effort related arousals) don't show up as apneas or hypopneas (and don't affect your AHI), but they do result in arousals and will affect the way you feel in the morning).

[Luthie2006]

NO Surgery!!! I have the same thing Robysue has. I had orthodontics work in the 60's and 4 good teeth pulled which had shifted my jaw back. My ENT and dentist both stated that I have a very child-like jaw and a huge tongue (like KISS) I can reach it down to my chin which most people cannot do. Because of this my airway is tiny. I am 5'3", 129 pounds, and female and not a bit overweight and I don't fit the middle-age male apnea picture either. Also, I was atypical.
I was waking up a hundred times a night and I thought of sleep apnea. Got the home study test (the hospital lab test was a nightmare for me, just couldn't sleep at it) and turned out I have mild apnea. I wear the CPAP mask with a chin strap and my AHI numbers in the morning are now between 0.0 (yes I have had a few of those nights and thought the machine was broken) up to the highest level of 0.8 I still wake up numerous times and do not get good sleep for "unknown" reasons, but at least I know that I can safely say I am NOT holding my breathe and stressing out my vital organs such as heart, brain, kidneys, lungs. And that is the main thing, that even with atypical people who don't know they have apnea, at least we are not "turning on and off" our breathing.
Right?

[chunkyfrog]

We need to dispel there is any such thing as "typical" conditions, maybe more or less common, but far from typical.
Too often it gives lazy providers the excuse to apply "one size fits all" diagnoses and treatments to
completely different patients, expecting success across the board.
Typical annoys me, and normal scares me.

[elocin71]

Thank you to everyone who has responded. You validated what my gut was telling me and I wasn't aware of things such as RERA. I will ask my Dr. about the next time I see him.

I have been using a PR System One CPAP since September. Luckily I didn't really have any additional problems sleeping with it as I have been sleeping elevated on my back exclusively (sadly) for a couple years. I discovered that I slept marginally better that way following a reflux problem (and I get headaches from my neck if i side-sleep). My only & on-going problem has been the stinking masks. My face is pretty small (I can fit in kids glasses sometimes) and invariably this means that there will be a leak somewhere around my eyes and when I tighten a mask to reduce leaks, and then I get deep marks in my face that hurt and last all day. I did have a great seal (no marking) with a total face-mask however it pushed my jaw back and upped my AHI to 9 Currently I rotate between a ResMed AirFit F10 and a SleepWeaver mask, both of which mark my face in different ways that generally don't last *too* horribly long. I had to make modifications to the SleepWeaver to make it usable but it takes a lot of adjusting to stop the leaks and sometimes I just don't have the patience for it at 4am! Thankfully my sleep center has a test-it-out program so I just keep trying new ones.

My machine does have a card in it, which I send to my doctor to review. Can I view the data myself somehow? I did try to have a look with my memory card reader but I couldn't open it with any program that I have so I gave up.

On the health front, I've been working with an ND for years who diagnosed me with Celiac and Hashimoto's Disease and she's addressed nutritional deficiencies caused by them. I still don't feel fully rested, even with the CPAP. (I wake up fully once a night but am able to go back to sleep.) I'm sure that I could use a couple more hours of sleep but I have a hard time sacrificing my kid-free time. I should just buckle down and do it for a month and see if I finally wake up refreshed.

Additionally, I do suffer from bruxism and chewed through/broke 3 or 4 nightguards until my current one, which has survived 4 years. So I sleep with a nightguard, chinstrap, mask, an eye cover, and earbuds in my ears with a white noise app to block out any outside noises. I am tempted to invest in a deprivation tank I do miss just drifting off to sleep without all the contraptions but I never purposely sleep without my CPAP anymore because I am otherwise rewarded with a nice oxygen-deprivation headache. Scary!

Thank you again
Nicole

----------------------------------------------------------------------------------
Machine: Panasonic Respironics System One since September 2014
Mask: ResMed AirFit F10 and SleepWeaver (still looking for the perfect one for me)
Chin strap
Pressure: 7
Current AHI: 2-3 (45 untreated)

[Pugsy]

My machine does have a card in it, which I send to my doctor to review. Can I view the data myself somehow? I did try to have a look with my memory card reader but I couldn't open it with any program that I have so I gave up.

You can use software...SleepyHead or Encore...see software information in my signature.

Sleepyhead will work with the data capable PR S1 machines
https://sleep.tnet.com/equipment

[Julie]

Your pressure (7) is rather low, have you tried raising it a bit? Sometimes it can make all the difference.

[Noctuary]

To look at me, you wouldn't guess that I would have sleep apnea. All the doctors like to point this out to me however my 45 AHI says otherwise. I've gotten my AHI down to 2 or 3 with CPAP but I am still tired all day, just not as much as before. (I don't know how I managed to live with the 45!) I still wake myself with snorts and it has gotten worse with allergy season.

I think I'm atypical, compared to all those I personally know with sleep apnea. They all have moderate to severe sleep apnea, but do great with their cpaps. I have mild apnea and although I'm better overall, much better, I still feel bad most days, and have a lot of cognitive problems. 11 months now.