dacotto1984 wrote: ↑Tue Sep 20, 2022 7:56 pm
Wow that's amazing information. I never thought how bad i damaged the inside of my body due to OSA. I am not sure how bad i might have damaged my brain or heart. Are there any scans that i can do to check?
Not that I know of. The damage done by OSA include things like inflammation, stress and OSA's contribution to metabolic changes that make it easier to gain weight and harder to lose it.
There are people who realize after the fact that their OSA may have been a major contributor to their gaining weight through the years rather than their weight gain causing the OSA to emerge as a problem. Some people finally are able to lose some of the weight they've put on once they're on CPAP because the stress levels in their body have reduced as the number of apneas has decreased to almost none. Some people find it is easier to keep the weight off once their OSA is under control through CPAP therapy.
Sometimes inflammation can be caused by the continual
stress that the multiple near suffocations and general lack of restorative sleep. In my case, my hand/foot pain had been previously diagnosed as mild osteoarthritis based on my age and one x-ray of one of my feet; but I now believe that it was literally caused by the cortisone (stress hormone) going through my system after the numerous hypopneas I was experiencing each night: Stress can set up "fight or flight" feelings, and I think my hands and feet were in fact trying to prepare to fight each night. When the body finally figured out I wasn't going to have repeated near suffocations every night, the hands and feet learned how to
relax. And as my sleep got better, the inflammation in those joints decreased.
And the fact that untreated OSA prevents you from getting genuinely restorative sleep means that your body doesn't have the chance to heal and rest and restore the daily damage from ordinary wear and tear night after night to keep itself in good shape. And never fully being able to heal all the daily wear and tear on the body takes a toll after a while.
So now that i am on this subject of diagnosing my body, i wish to talk about something and receive some insight. What amazes me is that i went to the emergency room 3 times (i felt like i was having a heart attack or stroke but they said it was anxiety attacks and stress). i visited my primary doctor (whom i only saw 3 times in my entire life) and even saw my sleep doctor (whom i only visited maybe 3 times as well my entire life) and not one of them even mentioned or diagnosed me that it could be my sleep apnea causing my insomnia ... they just gave me pills (Benadryl & trazodone which just made everything worse).
There are several reasons that OSA is under-diagnosed in this country, even when a patient reports having problems with insomnia.
One reason is that most people with sleep issues refuse to even consider that they might have OSA because, let's face it, CPAP has a very bad reputation among the ignorant for being a horrible thing to have to endure. So almost no-one goes to their doctor and says, "I'm not sleeping well and I think I might have OSA. Can you schedule me for a sleep test?"
Another is that if a patient with insomnia denies snoring and there is not a significant other in the room to pipe up and say, "Honey you snore like a freight train", the doctor believes the patient doesn't snore, and so the doctor tends to not consider OSA as a potential diagnosis.
Another reason is that insomnia is very common and is often
not related to OSA. And since there are ways to diagnose and treat insomnia that do not require an expensive all night sleep study, it's common for doctors to think about first treating the insomnia and if that is successful, then they can (reasonably) conclude that OSA was probably not an issue anyway.
However, if you reported that taking the Benadryl & trazodone made things worse to your doctor AND if you mentioned that you sometimes snored, then the sleep doctor or your PCP really should have sent you for a sleep test.
Usually a doctor will suggest a sleep study only when a patient is complaining of excessive daytime
sleepiness (not fatigue) while also claiming that they think they're getting a full night sleep every night OR if they tell the doctor that they snore loudly OR if the patient brings up the idea they may have OSA.
For what it's worth, my PCP set me up with a sleep test solely because I told him that my husband said I snored and that my husband was worried that I might have sleep apnea since he had witnessed episodes where he thought I quit breathing in my sleep. I didn't report any problems with daytime sleepiness (because I didn't have any) and as a middle-aged female going through menopause, my occasional bouts with insomnia were not something that I was particularly worried about: I'd had insomnia off and on my whole life and I had a whole bunch of strategies that kept it under control and at the time I was diagnosed with OSA I was not at all worried about my mild sleep onset insomnia.
pulmonologist just said go for a bipap test where the results didnt show anything.
I'm not sure I follow what you are saying: Nobody gets to a bipap titration test without some kind of a sleep test that shows
something is abnormal with the sleep and that
something has to be something that can be addressed with a bipap. That typically means some kind of sleep disordered breathing, although bipaps are also used for some patients with severe COPD in combination with O2 therapy when their O2 levels drop at night even though they are not having classic the hyponeas and apneas of OSA. (My late mother-in-law used a bipap for COPD problems during her last 2 or 3 years even though a sleep study verified that she did not have OSA.)
Now that i have been sleeping normally, i look back and realized it was the Sleep Apnea this whole time. This is very scary to me. I live in an area where i experience power outages frequently and im scared if my machine is not available to me that something terrible will happen to me.
Most of us wake up if the power goes out. But even if you don't you'll be able to breath well enough with a nasal mask on through your mouth. And full face masks have special valves that open when the power goes out to allow air to be drawn
directly into the mask by ordinary breathing.)
If you live in an area where power outages are frequent, then invest in a battery back-up. They work as long as you keep the battery charged up and ready to go.
You can also see if your power company can put you on a list of people who rely on electrically powered medical equipment so that getting your power back on winds up being somewhat prioritized.
My pulmonologist never recommended or mentioned anything about doing some scans on my throat/neck/head to see what exactly is causing the apnea.
That is not unusual. The reason is pretty simple: Muscle tone combined with a small airway combined (in many cases) with excess tissue in the neck is enough to explain why the airway is prone towards collapsing. (And even people with totally normal sleep will have the
occasional apnea or hypopnea.)
Muscle tone in the neck is not something the docs are going to try to test because the basic thinking is that even ordinary normal muscles relax a lot when you fall asleep and so the muscle tone in a neck can be perfectly normal (while awake), but still relax to the point where it can allow the upper airway to collapse when asleep. The problem in OSA is that the upper airway collapses too frequently during sleep. And there's not a way to "tone up" the muscles responsible for keeping the airway open during sleep.
One measure of the size of your upper airway is your Mallampati score (Google it). The Mallampati score is simply based on the visual inspection of the back of your throat when you say "Ahh". And while folks with Mallampati scores of 3 or 4 usually don't have OSA, if you do have a Mallampati score of 3 or 4, then you do have a physically small airway. And in some cases, that small airway just might be the only real reason you wind up in group of people who develop OSA at some point. (That seems to be the only problem that explains my OSA.)
Sometimes the problem is just a large tongue that falls back into the airway when the tongue relaxes during sleep. (This may be part of why OSA is often worse when we sleep on our backs.) Or the problem can be an upper pallet that is a bit longer than normal that relaxes and closes off the upper airway when it gets too relaxed during sleep.
If you have a large neck (i.e. the circumference of your neck is larger than normal),that can also point to a potential cause of the apnea: A larger than average neck has more tissue surrounding the upper airway and hence there's more mass that the muscles have to hold back when you are deeply relaxed and sound asleep.
Most people with OSA have one or more of these various problems with the anatomical structures that affect their upper airway and their body's ability to keep that airway open during sleep. But none of these anatomical structural "problems" are things that are "easy" to "fix", and so the focus in treating OSA is not on trying to determine exactly which things are creating the problem for a specific patient. Rather, the doctors are more focused on fixing the problem of the collapsing airway by making it much more difficult (but not impossible) for the airway to collapse during sleep. CPAP works by using just enough pressure support to make it harder for the airway to collapse.
At this point, i dont even know if there are any surgeries to fix my condition? I mean, i have no idea what to do.
While there are some surgeries out there that are supposed to reduce OSA, they are highly invasive, are considered quite painful, have long recovery times, and
often do not work. Moreover, when one of these invasive surgeries does not work, it often makes it
more difficult to treat the OSA with CPAP therapy. That's why CPAP is the gold standard for treating OSA: It works and it is not invasive.
I seriously have to reduce my OSA pronto.
Your charts show your
treated AHI is well under 5.0. That means you have
already reduced your OSA to normal or near normal levels. And as long as you keep using your CPAP every time you sleep for the whole sleep period, you effectively do not have OSA because the CPAP is preventing the vast majority of your events. And even a normal human being can have some apneas and hypopneas during the night---it's in the anatomy of the human upper airway. That's why there is a diagnostic threshold---if your AHI < 5 on a sleep study, your sleep is considered normal. So if your treated AHI < 5, your treated sleep is normal enough in terms of sleep disordered breathing.
I have lost 50 lbs so far but still need to lose another 100lbs to get my bmi to normal (i was 320lbs, now 265lbs, BMI should be about 160lbs).
Congrats on losing the 50 lbs.
But please note: the correlation between OSA and BMI/obesity is complex and runs in both directions.
For many people the OSA comes first and creates changes in the metabolism that make it easy to gain weight and hard to lose it
while the OSA is untreated. These people sometimes find that losing weight becomes easier after they've really learned how to sleep with a CPAP machine and have their OSA well controlled by CPAP. But for most of them, the OSA does not go away just because they finally get their weight back down to normal: Their airway structure is still what it is and without CPAP it will still collapse. Losing the weight will often make it
easier to control the OSA with CPAP therapy (you might need less pressure for example). And losing weight will minimize all kinds of other health risks that are associated with the same changes in metabolism that led to the weight gain in the first place.
For some people, their weight gain did increase the fatty tissues in their neck and possibly reduced the muscle tone in the neck muscles that help keep the airway open when we're asleep. And a few of these folks are sometimes lucky enough to reduce their AHI to normal levels if they manage to lose their excess weight. So losing the weight just might "cure" their OSA as long as they keep the weight off. But this is an exception rather than the rule.
What should i do here? Should i ask sleep doctor to see what scans can be performed to find my issue? Do such scans exists? If so, what are the scans called?
There are no scans that will determine exactly why
your particular upper airway is prone to repeatedly collapsing when you are asleep. And even if there were, there's no easy way to fix whatever the anatomical problem is.
But CPAP therapy prevents the airway from collapsing. So if you
always use your CPAP when sleeping and your CPAP therapy is optimized, then no additional damage is being done to your body each night.
Anyway, just trying to help myself out. I feel like if i dont fix this issue that something seriously bad can happen to me.
Fixing your OSA means optimizing your CPAP therapy.
Now since your
treated AHI is already well below 5.0, that means that on paper your CPAP therapy is working in the sense of preventing the vast majority of the apneas and hypopneas from occurring. So optimizing your therapy doesn't mean dial-winging in the hopes to see an AHI = 0.0 every night. Optimizing your therapy means learning how to
sleep well with the mask on your nose and your machine blowing air down your throat.
Some people have an easier time learning how to
sleep well with the mask on. Others of us have to spend weeks or months teaching our bodies how to
sleep well with the mask on.
And since I'm someone who had an extremely long and difficult (but ultimately successful) adjustment to PAPing, I understand that you are not yet feeling as good as you want to feel. So the question you need to be asking yourself is:
What else might be causing my less than good sleep?
The answer to that question is likely to be complex and involve answering questions like these:
What medical conditions (other than OSA) do you have? Are any of those conditions known to affect the overall quality of sleep? Depression, for example, is known to negatively affect sleep in a number of ways. Any kind of condition that includes chronic pain can negatively affect sleep since it can be hard to get fully and soundly asleep when your body is in pain.
Do you take medication? Does any of the medication you take have known side effects that affect sleep? Some medicines make it harder to get to sleep. Some make it harder to stay asleep. Some can affect sleep architecture---they can alter how much time you spend in REM or Stage 3 sleep. In all cases, the side effects that a medicine has on your sleep quality have to be weighed against the benefits of taking the medication for the condition it was prescribed for.
What does your sleep hygiene look like? Are you doing things that make it more difficult for you to get to sleep at the beginning of the night? Are you doing things that make it harder for you to stay asleep once you get to sleep?
Do you drink alcohol at night? If so, how much and how often? What about other recreational drugs?
Are you confusing daytime
sleepiness with daytime
fatigue? Daytime sleepiness is a symptom of
bad sleep, although what is causing the
bad sleep still has to be teased out. Daytime
fatigue is at least as likely, if not more likely, to be caused by something other than a simple sleep problem. Stress can wear you out even if you are getting high quality sleep every night. So can excess worrying about things.
(Pre-cpap I'd describe that hand/foot pain to my husband that it felt like I'd slept with my hands and feet in "fists".)
Wow, i think its funny you mentioned this. I too have been having this weak feeling in my left arm and hand. Not sure if its apnea finally catching up to me but im glad you mention this.
Mine was
pain of the sort you get when you make a fist as tight as you possibly can and keep that hand in a fist for as long as you possibly can. I would actually wake up with my hands in fists on the worst days and have to pry my fingers out of the fist.
If you are experiencing a feeling of muscle
weakness in your left are and hand, you need to report that to your doctor. That's not necessarily something that is related to your OSA and it could be related to an entirely different and potentially serious health issue.
And finally it's worth remembering that PAP fixes only sleep disordered breathing (OSA) problems. If anything else is causing bad sleep CPAP alone won't fix all your sleep problems.
Yes thats also part of my whole dilemma, I cant tell exactly where its all coming from. If im stressed from other factors or if the apnea is causing me anxiety and problems or if my personal problems and yadda yadda yadda.
If you ask me, I think you've added stressing out
about the apnea to your long list of other personal problems that are stressing you out.
Now, again, given how stressed out I was over my very difficult CPAP adjustment, I can understand the stressing out about the apnea. But ....
Where the apnea and CPAP are concerned, this is what you need to do to minimize the stress and maximize the good that CPAP therapy can do for you:
You need to first focus on the most basics: Remind yourself that you don't have to worry about apneas and hypopneas happening when you are asleep as long as you are in fact using your machine. And don't worry about what damage you might have done to your body during the years you've probably had untreated OSA: The PAP therapy will allow your body to heal, albeit it might heal slower than you would like it to heal.
Next, given your history of insomnia, you need to tease out the answer to this question:
Are you actually sleeping an appropriate amount these days?
In other words try to answer these questions:
How much time do you actually spend in bed each night, regardless of whether you are or are not asleep? In other words, what time do you go to bed and when do you get up in the morning?
When you go to bed with the CPAP mask on your face, do you manage to get to sleep in a reasonable amount of time? If you are getting to sleep in 10-15 minutes, that's probably ok. It you're lying in bed trying to get to sleep for 40 minutes or more, that may be a problem.
How often do you
remember waking up each night? Once or twice is not a big deal. 5 or 10 times is a big deal.
How long does it take you to get back to sleep after you wake up at night? If it only takes 5-10 minutes or so and you're only waking up a few times, it's probably not a big issue. But if it takes you 20-30 minutes to get back to sleep every time you wake up, that's an issue.
How long do you think you are
lying awake in bed
after you first fall asleep for the night? In other words, I'm asking you to multiply the average number of wakes each night by the time it takes you to get back to sleep after a wake. The total time awake affects your so-called sleep efficiency:
Sleep efficiency = (Total
sleep time)/(Total time in bed).
If your sleep efficiency is up above 85-90%, you're probably sleeping pretty decently. If your sleep efficiency is down below 70%, then you probably have a problem.
Do you have any ideas on what wakes you up when you wake up in the middle of the night? If so, is it CPAP related? (CPAP related includes things like leaks, air blowing on you, aerophagia, a feeling like there's not enough air coming through the mask, a feeling like there's too much air coming through the mask, etc.) Or is it related to something else? (Things like waking up too hot or too cold, needing to go to the bathroom, waking up in pain, waking up after a dream, waking up because the room is too light or too noisy, waking up worried about something, waking up wondering how long it is till morning, etc.)
And if it takes you a long time to fall asleep at the beginning of the night or after you wake up in the middle of the night, can you tell what's keeping you awake? Is it CPAP related? (Things like the mask is uncomfortable, leaks, fiddling with the mask, fear moving to a more comfortable position will break the mask seal, discomfort from air being blown in your nose/down your throat, cpap noise, feeling you can't breath because there's too much air coming through the hose, feeling you can't breath because there's not enough air coming through the hose, air coming in through the hose is too hot, too cold, too damp, too dry, etc.) Or is it something not CPAP related? (Things like generalized worry, worrying about work, worrying about how much sleep you are getting, worrying about your health, pain, restless legs making it difficult to get comfortable, room is too hot or too cold or too noisy or too light, etc.)
And once you've teased out what parts of your sleep problem appear to be directly related to CPAP therapy, you work on fixing those problems (because it will improve your sleep). And you also work on whatever parts of your sleep problem are
not related to CPAP therapy because fixing those problems will also improve your sleep.
Usually the problems that are directly related to CPAP therapy are easier to fix because no matter how crazy they seem to you, someone around here has faced the same problem before and can offer good quality advice for how to fix it.
It's the problems that are
not directly related to CPAP therapy that are difficult ones. But until and unless they're both identified and addressed, they'll continue to make your sleep
bad sleep instead of
good sleep.
And it's now past my usual bedtime of 1:30AM and I'm getting appropriately sleepy, so I'm going to bed now.
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.
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