jolting - waking up and insomnia or not using cpap

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
ChicagoGranny
Posts: 12869
Joined: Sun Jan 29, 2012 1:43 pm
Location: USA

Re: jolting - waking up and insomnia or not using cpap

Post by ChicagoGranny » Wed Sep 21, 2022 7:31 am

dacotto1984 wrote:
Tue Sep 20, 2022 7:56 pm
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?
No. No. No.

You should have a consultation with an ENT to examine your airway. This will include a nasal endoscopy where she can see the septum, turbinates and vocal cords. I recommend this to everyone who has OSA.

It's likely nothing will come of this except knowledge. Some unlikely outcomes are enlarged tonsils and/or adenoids that should be removed to improve sleep-breathing.

There are several surgeries for sleep apnea. If the ENT recommends one, come back here for comments. (Don't get your hopes up for a surgical cure.)

How old are you?

BTW, reading an encyclopedia rarely helps.

User avatar
dacotto1984
Posts: 21
Joined: Sun Aug 28, 2022 5:32 pm

Re: jolting - waking up and insomnia or not using cpap

Post by dacotto1984 » Wed Sep 21, 2022 7:39 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.
Wow this is bad, i have to make sure to fight this as much as i can and not gain any more weight
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.
wow, its one of those catch 22 things i suppose.
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.
maybe thats whats going on. inflammations and damages in my brain causing me to feel all strange. all those stress hormones surging through me. Im sorry to hear that you have been clinching your fists during sleep prior. im glad to hear that the CPAP therapy helped you. like you said before.. maybe i just need alot more months to heal from all the damage. This OSA truly is a horrible disease/condition. I use to be a bear. i would go into deep sleep.
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.
This here is my great concern and what brings me to great anxiety. The fact i cannot sleep well and i am just damaging my mind and body.
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.
very interesting! i guess you are 100% correct with all this!
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.)
i had told my sleep doctor that i was having a hard time breathing in with the CPAP full face mask and that my chest hurt. I believe it was just me getting use to the machine. But i told him i kept on breathing in very hard. When i went to visit him the second time, he didnt have much data because i was not compliant and since i was complaining i guess he just sent me to do an overnight sleep study to see if i needed Bipap. The date he ordered that bipap test and the date i took the bipap test was about a 4 month timeframe (i waited that long) and in that time i start using the cpap and my AHI have been under 5 so cpap was working for me and i no longer was having chest pains or having a hard time breathing due to the mask. I really hated using the mask and my body still kind of does. My body does not want to accept it but i am getting use to it

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.
Thank you for sharing this, i will have to buy a battery back up solution and see if i can ask my power company if they could priortize my area.. thank you for that input!
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.
I believe my score was a 4, if not more. my whole tongue covers the whole inside of my mouth when i open up. I wonder if my OSA is from my fat ugly tongue.
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:
Thank you so much for sharing all this information with me. It really is helpful!!

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.
Thankfully, my sleep apnea is the only condition i have. However, i have been experiencing anxiety and a bit of depression (self diagnosing though) I dont take any medicaition for it because its habit forming and your body would get use to it according to doctors. So im just letting it ride out. This anxiety could also be from OSA, not sure. but also coming from stress from personal life such as wife and kid. but im not 100% sure whats causing it.
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?
i dont smoke or drink. I takes me about an hour to go to bed when laying down, I wake up all the time around 530am to urinate and then i cannot go back to sleep until like 7am and sleep til like 830am. Sometimes i wont get back to sleep at all and just get about 5 hours of sleep. I never had an issue like this before. Before CPAP Therapy, i would wake up 3 times to urinate but fall back asleep in 15 minutes - these days (since using CPAP) that seems like an impossible task. I would just lay there with the mask on trying everything i can to get to sleep but nothing. Before i would literally stay the whole night in the bed, the hours would fly and i would just lay there with the mask on, dark room and no sleep whatsoever. Never had these kind of issues before. i was the total opposite.
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.
i know i am worrying a ton these days. Scared ima go mentally ill from the insomnia and bad sleep. Scared that ill get chronic diseases.. that i will lose my job... lose my family ( I am the sole provider and have a child <- this is a whole new lifestyle change. I now have 2 souls that are under my care.. before it was just me and i did whatever i wanted.. now i have to thrive for them and its a huge burden on my mind and i worry too much and stress and theres just a whole ton of other things too),


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.
Thank you, i really need to get this through my thick skull, it feels like i am only getting worse (in my minds eye). I need to start believing that i will be healed.
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:
These days, i would go to bed maybe like at 11pm and sleep by 12am. Then i wake up at 5:30am, urinate & then stay up til 7am sleep til 830am. Sometimes i wont sleep after waking up to urinate. Ill just stay there struggling to sleep. Which to me is not normal at all. Before my CPAP/jolting-waking up attacks, i would sleep at midnight, wake up 3 times to urinate, get back to sleep within 15 minutes and wake up like at 930am. No issues. (of course i would still feel very tired at certain parts of my day such as when driving and at job meetings).
Sleep efficiency = (Total sleep time)/(Total time in bed).
I would say then sleep time is about 5.5 hours and total time in bed 8 hours = 68%
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.
I would say i worry all the time now. and yes i worry about what time it is and how long i have slept when i wake up to urinate. Lucky for me i sleep at least 5 hours which feels like a ton more than when i had insomnia.
yes i believe i also had restless leg syndrome where my legs would get weird stiff feelings and i had to shake them and move. Once i started hitting the gym, that problem went away.

but yeah, i guess i also wake up during those times cause those are the only precious times i have to myself.. time to sit down and think and be at peace. During the day i am either working or somehow serving my wife tending to all her needs which i think may be killing me. (She is not reasonable person at all) Plus i dont have any more friends and my wife hates when i leave her side and go try to be with my mother, so its like im a little slave and dont have a life but just a slave mentality. I just have alot of stuff going on in my life and its just all overwhelming. on top of that OSA, insomnia and getting use to CPAP machine. its all detrimental

User avatar
dacotto1984
Posts: 21
Joined: Sun Aug 28, 2022 5:32 pm

Re: jolting - waking up and insomnia or not using cpap

Post by dacotto1984 » Wed Sep 21, 2022 7:41 pm

ChicagoGranny wrote:
Wed Sep 21, 2022 7:31 am
dacotto1984 wrote:
Tue Sep 20, 2022 7:56 pm
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?
No. No. No.

You should have a consultation with an ENT to examine your airway. This will include a nasal endoscopy where she can see the septum, turbinates and vocal cords. I recommend this to everyone who has OSA.

It's likely nothing will come of this except knowledge. Some unlikely outcomes are enlarged tonsils and/or adenoids that should be removed to improve sleep-breathing.

There are several surgeries for sleep apnea. If the ENT recommends one, come back here for comments. (Don't get your hopes up for a surgical cure.)

How old are you?

BTW, reading an encyclopedia rarely helps.
Thank you so much! i will definitely look into consulting with an ENT. I am 38 male.
By the way, what does ENT stand for?

lynninnj
Posts: 569
Joined: Mon Jul 25, 2022 8:56 am

Re: jolting - waking up and insomnia or not using cpap

Post by lynninnj » Wed Sep 21, 2022 7:53 pm

dacotto1984 wrote:
Wed Sep 21, 2022 7:41 pm
ChicagoGranny wrote:
Wed Sep 21, 2022 7:31 am
dacotto1984 wrote:
Tue Sep 20, 2022 7:56 pm
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?
No. No. No.

You should have a consultation with an ENT to examine your airway. This will include a nasal endoscopy where she can see the septum, turbinates and vocal cords. I recommend this to everyone who has OSA.

It's likely nothing will come of this except knowledge. Some unlikely outcomes are enlarged tonsils and/or adenoids that should be removed to improve sleep-breathing.

There are several surgeries for sleep apnea. If the ENT recommends one, come back here for comments. (Don't get your hopes up for a surgical cure.)

How old are you?

BTW, reading an encyclopedia rarely helps.
Thank you so much! i will definitely look into consulting with an ENT. I am 38 male.
By the way, what does ENT stand for?
Ear Nose and Throat specialist =ENT

_________________
Machine: AirSense 11 Autoset
Mask: ResMed AirFit N30 Nasal CPAP Mask with Headgear
Additional Comments: Newbie who loves her machine!
Spare me the nitpicking. I have a serious health issue and I came here to learn to manage it by managing my OSA. Move along if you can’t be kind.

User avatar
Miss Emerita
Posts: 2515
Joined: Sun Nov 04, 2018 8:07 pm

Re: jolting - waking up and insomnia or not using cpap

Post by Miss Emerita » Wed Sep 21, 2022 8:11 pm

Have you tried limiting fluids in the evenings? And have you had your prostate checked for enlargement? It’d sure be nice if you didn’t have to urinate during the night.

Your comments about your marriage tell me you might really benefit from some counseling. Is that something you could do?
Oscar software is available at https://www.sleepfiles.com/OSCAR/

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Wed Sep 21, 2022 8:56 pm

Dacotto1984,

It sure seems to me like you've got a serious case of clinically significant anxiety---as in your anxiety is taking over your whole life and you probably need to be treated for it. If you don't want to take anti-anxiety medication, you really need to see a counselor who can give you some cognitive behavior therapy techniques for dealing with the anxiety and learning how to keep it from taking over when anxious thoughts are racing through your mind.

Why do I say that it seems like anxiety is a big, huge problem that's affecting everything in your life to a degree that you need to get some help in getting it under control? Well look at these anxious, stressful, and fear-filled statements you've made:
dacotto1984 wrote:
Wed Sep 21, 2022 7:39 pm
Wow this is bad, i have to make sure to fight this as much as i can and not gain any more weight
maybe thats whats going on. inflammations and damages in my brain causing me to feel all strange. all those stress hormones surging through me.
This here is my great concern and what brings me to great anxiety. The fact i cannot sleep well and i am just damaging my mind and body.
Thankfully, my sleep apnea is the only condition i have. However, i have been experiencing anxiety and a bit of depression (self diagnosing though) I dont take any medicaition for it because its habit forming and your body would get use to it according to doctors. So im just letting it ride out. This anxiety could also be from OSA, not sure. but also coming from stress from personal life such as wife and kid. but im not 100% sure whats causing it.
i know i am worrying a ton these days. Scared ima go mentally ill from the insomnia and bad sleep. Scared that ill get chronic diseases.. that i will lose my job... lose my family ( I am the sole provider and have a child <- this is a whole new lifestyle change. I now have 2 souls that are under my care.. before it was just me and i did whatever i wanted.. now i have to thrive for them and its a huge burden on my mind and i worry too much and stress and theres just a whole ton of other things too),
I would say i worry all the time now. and yes i worry about what time it is and how long i have slept when i wake up to urinate. Lucky for me i sleep at least 5 hours which feels like a ton more than when i had insomnia.
but yeah, i guess i also wake up during those times cause those are the only precious times i have to myself.. time to sit down and think and be at peace. During the day i am either working or somehow serving my wife tending to all her needs which i think may be killing me. (She is not reasonable person at all) Plus i dont have any more friends and my wife hates when i leave her side and go try to be with my mother, so its like im a little slave and dont have a life but just a slave mentality. I just have alot of stuff going on in my life and its just all overwhelming. on top of that OSA, insomnia and getting use to CPAP machine. its all detrimental
Look at that series of statements: Anxiety and worry are literally eating you alive. And yet, your idea is to somehow just "ride it out" because you are literally too afraid to consider taking an anti-anxiety medication prescribed by a doctor who can monitor you for whether it is no longer working well for you.

Are you willing to get counseling for the anxiety at all?

I ask because quite frankly, I think that while your insomnia may have been triggered by your starting CPAP therapy, what's keeping the insomnia monster fat and happy in your bedroom is anxiety and its companions stress, worry, anger and resentment.

It's particularly telling that you are lashing out at your wife:
During the day i am either working or somehow serving my wife tending to all her needs which i think may be killing me. (She is not reasonable person at all) Plus i dont have any more friends and my wife hates when i leave her side and go try to be with my mother, so its like im a little slave and dont have a life but just a slave mentality.
while simultaneously being terrified that you might lose your family---i.e. your wife and child:
Scared that ill get chronic diseases.. that i will lose my job... lose my family ( I am the sole provider and have a child <- this is a whole new lifestyle change. I now have 2 souls that are under my care..
and also simultaneously sounding a bit resentful of the fact that you have a family to take care of:
before it was just me and i did whatever i wanted.. now i have to thrive for them and its a huge burden on my mind
In other words, you are dealing with some pretty significant and heavy emotional stuff that is tied up with your anxiety as well as your sense of who you actually are.

And I bring all this up because, as I've said before, once you are sleeping with the CPAP every night, you won't need to worry about OSA causing more damage to your body: The CPAP machine treats your OSA and prevents your airway from repeatedly collapsing while you are asleep, and that in turn means that when you sleep with the machine your body no longer has to deal with the problems caused by untreated OSA.

But until you get all the anxiety, stress, fear, anger, and resentment under control, those problems are all going to negatively affect the quality of your sleep by feeding the insomnia monster that's moved into your bedroom.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
Last edited by robysue1 on Wed Sep 21, 2022 11:09 pm, edited 1 time in total.
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Wed Sep 21, 2022 9:46 pm

Dacotto1984,

This is a second post concerning the anxiety issues you seem to be dealing with.

You write:
I am the sole provider and have a child <- this is a whole new lifestyle change. I now have 2 souls that are under my care.. before it was just me and i did whatever i wanted.. now i have to thrive for them and its a huge burden on my mind and i worry too much and stress and theres just a whole ton of other things too
You say you're a 38 year old male. How long have you been married? How old is your child? And because you mention visiting your mother, how old is she? And how dependent on you is your mother?

It sounds to me like you've had a whole bunch of big lifestyle changes (including both positive ones and negative ones) in a very short time. And that could very well be aggravating your anxiety, particularly if you've been an anxious sort of person your whole life.

So---think back: Were you an anxious child? Or did the anxiety really get going when you got married, had a child, and became a sole provider for your family?

I ask because I think there's more to the root cause of your current anxiety than just your recent OSA diagnosis combined with your on-going tough adjustment to PAP therapy.

Clearly you are also quite anxious about your overall health, both mental and physical. You've mentioned a number of health related problems, some of which you now assume may be related to the years that you have probably had untreated OSA. You seem terrified that somehow the untreated OSA has damaged your body and mind beyond all hope of repair, even though you've been assured that with PAP therapy your body will heal and that in the long run you'll be fine.

You also seem quite worried about the idea of developing other chronic medical conditions, and given your current weight problems (100 pounds overweight), you are in fact at high risk for a number of chronic diseases including such scary things as diabetes, heart disease, stroke, some cancers (including colon cancer). But you are in the process of trying to get the weight under control and you have actually lost 50 pounds of excess weight. (And that is a big achievement, particularly if you can keep it off.) Finally you say you feel like you are losing your mind.

But all of the worrying about your health seems to be counterproductive right now: The worrying is getting in the way of doing stuff that will positively influence your health, both mental and physical, in both the short term and the long term. In other words, you need to learn to chill and recognize that you are doing things that will minimize your future risk for chronic illnesses: You are working hard on adjusting to PAP and you are working on losing more weight. Those two on-going projects mean that you are reducing the odds that you will develop additional chronic diseases.

Obviously, since you have an OSA diagnosis where your untreated AHI was 90+, it's important to get over the hump of adjusting to PAP therapy. Given the treated AHI numbers (under 2.5) from your machine that you've told us about, optimizing your PAP therapy is much more about learning how to sleep well with the machine rather than dial wingin' the settings hoping to get the treated AHI down to 0.0.

But sleeping well with the machine means fixing your insomnia. And fixing your insomnia means getting the anxiety under control. And at some point you also mentioned self-diagnosed depression as a problem. Anxiety and depression can be tightly wound together, and it is worth being screened for clinical depression, and if you are in fact clinically depressed, it's worth listening carefully to all the suggested strategies for managing it, including possible medication if that's needed.

So here's my advice in a nutshell:
  1. Work on getting used to PAP therapy with help from the good folks here at cpaptalk.com. No matter how weird you think one of your adjustment problems might be, somebody around here has dealt with it, and dealt with it successfully.
  2. Continue working on losing the weight. Even if you never get down to your final goal, every little bit of weight you lose and keep off will decrease the odds that you'll develop another chronic medical problem.
  3. Get screened for clinically significant anxiety and depression. Find both a good counselor and a good psychiatrist if you need medication to manage anxiety and/or depression.
  4. As part of items (1) and (3), work on taming the insomnia monster that has moved into your bedroom.
  5. Try to chill out and enjoy being with your family---both your child and your wife. Do something with them everyday, even if it's as simple as reading your child a bedtime story or helping your wife clean up the kitchen.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
Last edited by robysue1 on Wed Sep 21, 2022 11:16 pm, edited 2 times in total.
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Wed Sep 21, 2022 11:00 pm

Now to start looking at the insomnia issues since fixing your sleep is going to require fixing the insomnia as well as the OSA. So that means learning to sleep well with the alien on your face.

You describe your insomnia/sleep as follows:
dacotto1984 wrote:
Wed Sep 21, 2022 7:39 pm
These days, i would go to bed maybe like at 11pm and sleep by 12am. Then i wake up at 5:30am, urinate & then stay up til 7am sleep til 830am. Sometimes i wont sleep after waking up to urinate. Ill just stay there struggling to sleep. Which to me is not normal at all. Before my CPAP/jolting-waking up attacks, i would sleep at midnight, wake up 3 times to urinate, get back to sleep within 15 minutes and wake up like at 930am. No issues. (of course i would still feel very tired at certain parts of my day such as when driving and at job meetings).
So before you started PAPing you would get to sleep at midnight---did you go to bed at 11pm and take an hour to get to sleep back then? Or did you go to bed close to midnight and fall asleep pretty quickly?

And now, you definitely take an hour to get to sleep. What's going through your mind when you are lying in bed trying to get to sleep with the CPAP mask on your face? And how comfortable are you physically with the mask on your face and air being blown up your nose and down your throat? In other words, are you physically comfortable, but your mind is racing with worry about non-CPAP things? Or are you physically uncomfortable and your mind is focused on just how uncomfortable you are with the alien blowing air up your nose?

Next: Pre-CPAP, you would wake up 3 times between midnight and 9:30 needing to pee. So that means you probably were waking up to go pee every 2 1/2 hours or so. (In other words, I'm guessing you probably woke up around 2:30, 5:00, and 7:30 each night needing to go pee.) But you were able to get back to sleep in about 15 minutes each time. Still--that's a total of 45 minutes of lying in bed not sleeping because you needed to go pee.

Now? You're making it all the way to 5:30 before you wake up needing to go pee. That is a small but significant improvement. By your own description, your longest stretch of uninterrupted sleep has gone from roughly 2 1/2 hours to 5 1/2 hours. It's quite likely that the reason you are not waking up at 2:30 am needing to pee, the way you used to, is that your very severe untreated OSA was causing you to wake up needing to pee every 2 hours. (That's actually a pretty commonly reported symptom of untreated OSA around here.). With PAP, your body has already learned it can go 5 1/2 hours without needing to wake you up to go pee. And in time, you might find yourself not waking up needing to go pee at all during the night. At least until you're old enough to have what my 64-year old husband calls "little old man bladder" problems caused by an enlarged prostrate.

Next: Pre-Cpap, you got up at probably 2:30, 5:00, and 7:30 to go pee every night. It took you about 15 minutes to get back to sleep after each trip to the bathroom. And then you went back to bed and finally got up around 9:30. So between midnight and 9:30, you were getting around 8.75 hours of sleep that was severely disturbed by your untreated apnea with an AHI = 90+. And you woke up "ok", but you would be tired when you drove or had meetings. In other words, your sleep was not really refreshing---you didn't wake up feeling great, but you also didn't wake up feeling awful. Now here's the thing: While your sleep was badly disrupted by the OSA, which prevented your body from getting its full rest, your mind was not racing all night long worrying about everything from your OSA to keeping your job to the latest run-in with your wife over visiting your mother to your child to your finances to how much more time there is before you have to get up to how sick you are of not being able to sleep. In other words, when you were in bed, you weren't lying there worrying and getting more and more anxious. And that's probably why you were able to wake up feeling OK, but not great and why you had enough energy to get through the day without feeling like you were in a brain fog all day long.

Except for the fact that I didn't need to wake up to go pee every night, your pre-CPAP sleep pattern sounds rather like mine was: It took me about 45-60 minutes to get to sleep, but I used the time to daydream rather than worry. And I usually didn't remember any significant wakes until the alarm went off and I had to get up (around 7:00 AM). And except for hand & foot pain, I felt OK, but not great when I woke up. And I never had any significant problems with daytime sleepiness, but I would get tired at certain times of the day.

Now that you're using the CPAP, you're sleeping all the way to 5:30 AM without a bathroom break. (Yea!), but once you wake up at 5:30, you can't really seem to get back to sleep until 7:00 AM. You seem to say that sometimes you "just stay up" and sometimes you go back to bed and simply can't get back to sleep. So the new problem is that period between 5:30 and 7:00: Your body does not want to be asleep, but your mind says you should be asleep. And so you sit or lay there and fret over the fact that the minutes are ticking away and you are not sleeping. And that in turn triggers the more general worrying about anything and everything else your mind can think of. And all that worrying makes it even harder to get back to sleep. So you get more and more frustrated and more and more anxious about the fact that you are not asleep. Does that sound like an accurate description of what's going on?

So let's try to figure out what might be going on at 5:30 after you finish peeing. Your body has just gotten 5.5 hours of blissfully peaceful sleep without any apneas & hypopneas to speak of. And while pre-CPAP your mind thought you were getting 8.75 hours of sleep, with all the wakes and arousals from 90+ apneas & hypopneas per hour, you probably were waking up for 20-30 seconds at a time maybe 40-60 times per hour. In other words, during one hour of "sleep" with your untreated OSA, you probably were actually awake for a total of 15-30 minutes during that hour of sleep. What this means is that in 8.75 hours of untreated OSA "sleep", your body may very well have only managed to actually be asleep somewhere between 5 hours and and 6 hours.

In other words, the total amount of sleep your body is currently getting between midnight and 5:30AM may be pretty much equal to the total amount of real sleep (not SWJ and not wake) that you were getting in 8.75 hours of untreated OSA "sleep." So what may very well be going on at 5:30 AM is that your body is saying, "Hey we've got as much sleep as we're used to, so why go back to sleep?" and your mind is saying "Hey it's 5:30 in the f*cking morning and I don't want to be up yet. Why won't you let me go back to sleep?"

In this case, as crazy as it sounds, the best thing you can do is go ahead and get out of bed and do something interesting and fun. In other words, pay attention to your body: If it's not sleepy, don't force it to try to get to sleep. If you feel like you're getting sleepy at 6:30 or 7:00, then go back to bed and allow yourself the privilege of enjoying the extra sleep.

Over time what should happen is that your body will recognize that getting more like 6.5 or 7 hours of sleep feels better than getting 5.5, and your sleep period may start to lengthen. It could happen by you starting to feel sleepy earlier in the evening and hence you may start finding that you are ready to fall asleep earlier than midnight. Or it may happen by you starting to sleep until 6:00 instead of waking up at 5:30. Or it may happen at both ends.

But right now, you have to learn to not fight with your body: If your body is not sleepy then don't lie in bed fighting to get to sleep. Just get up and use the time to do something for yourself. And above all else, don't worry about not being asleep just because it's 5:30 in the morning.

I want to remind you that you wrote this about your early morning (5:30 AM) wakes:
but yeah, i guess i also wake up during those times cause those are the only precious times i have to myself.. time to sit down and think and be at peace.
Run with that idea: Rather than worrying about how much time you have left for sleep, enjoy getting up out of bed and doing something for yourself that helps you be at peace instead of feeding your general anxiety.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1

User avatar
dacotto1984
Posts: 21
Joined: Sun Aug 28, 2022 5:32 pm

Re: jolting - waking up and insomnia or not using cpap

Post by dacotto1984 » Sat Sep 24, 2022 11:10 am

Hey thank you so much for your inputs with all this. Everything you are saying seems to be pretty accurate!
It sure seems to me like you've got a serious case of clinically significant anxiety---as in your anxiety is taking over your whole life and you probably need to be treated for it. If you don't want to take anti-anxiety medication, you really need to see a counselor who can give you some cognitive behavior therapy techniques for dealing with the anxiety and learning how to keep it from taking over when anxious thoughts are racing through your mind.

Why do I say that it seems like anxiety is a big, huge problem that's affecting everything in your life to a degree that you need to get some help in getting it under control? Well look at these anxious, stressful, and fear-filled statements you've made:
Yes, i think counseling could help greatly. Alot of my issues to are tied to my religious beliefs. so there might be a conflict because I might want to seek counseling tied to my religious beliefs. Maybe I can do both. I dont have a church right now and spiritually i feel lost. So thats a whole other ball.. theres so much in me lol but yes, i think its time to start making changes and reach out a bit. Thank you so much!
In other words, you are dealing with some pretty significant and heavy emotional stuff that is tied up with your anxiety as well as your sense of who you actually are.
Yes, i strongly am! Theres too much to post thats unrelated to CPAP. These past 4 months have been extremely heavy with a ton of things.. one thing after another.. just the other day a family member died and it just throw another big wrench in the engine along with other wrenches that were throne so its like im being battered. but i am maintaining.. i just hope i dont get sick from all the stress and worry. everyday im waking up feeling different and yea... its bit intense. I have been working on it though.. gym.. calling people just to talk and talking and gym help but its like im always needing a huge dose of talking and yadda yadda...
But until you get all the anxiety, stress, fear, anger, and resentment under control, those problems are all going to negatively affect the quality of your sleep by feeding the insomnia monster that's moved into your bedroom.
Yes i have to do everything in my power to heal myself. .thank you so much

User avatar
dacotto1984
Posts: 21
Joined: Sun Aug 28, 2022 5:32 pm

Re: jolting - waking up and insomnia or not using cpap

Post by dacotto1984 » Sat Sep 24, 2022 11:12 am

Hey guys,

i want to answer back on all your responses. dont have much time at this moment but i will get to them.

in the meantime, i was able to get my CPAP data. I was wondering if anyone can see my data and see how things are going?
here is a link to the last 4 days. If you guys could tell me anything that would be great.

thank you so much, have to run.

User avatar
Pugsy
Posts: 61895
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: jolting - waking up and insomnia or not using cpap

Post by Pugsy » Sat Sep 24, 2022 11:15 am

Are those leaks disturbing your sleep at all? Waking up much from large leaks?
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Sat Sep 24, 2022 12:52 pm

Dacootto1984,

There are three striking things about your last four days of data: Leaks, the early morning gap, and the overall AHI.

Leaks
If the leaks are waking you up, then you've got to work on fixing the leaks. (Lots of folks here will be able to chime in with things to try.)

But even if the leaks are not waking you up, you're over Resmed's so-called "red line" of an excess leak of more than 24 L/min for extended periods each night. And sometimes you're well over that limit. (If Resmed machines still have Mr. Red Frowny Face, I bet you're seeing him if you look at the data on the machine's LCD.) So it may be worth putting some effort into fixing those leaks even if you don't think they're waking you up. Fixing the leaks may lead to better quality sleep, which will lead to better daytime functioning. But you don't want the cure for the leaks to be worse than the leaks themselves are.

So an obvious question: Do you have a tendency to mouth breath? If so, you might need to look at using a full face mask or figuring out a way to keep your mouth shut more completely at night. (Lots of folks here can help with that issue too.)

If you don't know whether you are mouth breathing, can you tell us how dry your mouth is when you wake up in the morning?

The early morning gap
The next most striking thing about your last four days of data is an early morning gap that's about 75-90 minutes long when you're not using the machine. Given your previous posts, I'm assuming this is when you wake up, go to the bathroom, and then can't get back to sleep.

Are you just getting out of bed and doing something else until you get sleepy and then putting the mask back on when you go back to bed? Or are you taking the mask off in hopes of getting back to sleep and then for whatever reason, you finally do put the mask back on?

The reason I'm asking goes back to my last post about the insomnia: If you're waking up not feeling sleepy and just getting out of bed to do something else and the masking up when you return to bed after getting sleepy, then that "gap" is totally irrelevant in terms of PAP therapy. And if you're doing something you enjoy or that gives you some peace and helps reduce your anxiety levels when you're not in bed, then you're also doing the right thing to help tame the insomnia monster in your bedroom.

But if you are taking the mask off and then falling asleep OR if you are lying in bed trying to sleep without the mask because you think it may be easier to get back to sleep unmasked, then that gap is significant and you need to tell us more about what's going on during that time frame.


Overall AHI
Your overall AHI is good to excellent. Even if we just look at the spots where the excess leaks are below Resmed's red line (24 L/min), very few events are being scored. There not that many clusters of multiple events, and the most prolonged one that I see is from 9/22 (6:30-7:00), but that cluster could just be sleep-wake-junk from what you've previously written about your insomnia.

In other words, your current pressure range (8-16 cm) seems to be effective in controlling the obstructive events.

Would you be comfortable turning off the ramp feature? That might (or might not) help with your transition to full sleep when you turn the machine on. Or, you could simply try to start the ramp at 6cm and see if that helps.

I mention the ramp because different people have widely different experiences with the ramp, and not all of those experiences are good. There are people who feel like they can't breathe very well when the pressure is as low as 4cm, and they do much better starting at a higher pressure. There are also people who can feel the steady increase in pressure and that can be enough to make it harder for them to get to sleep. On the other hand, there are also people who feel like if they start the night at 8-10cm there's a hurricane blowing into their nose and that can prevent them from getting to sleep.

Turning the ramp off also might help fix the leaking: Sometimes we fit a mask at low pressure (your beginning ramp pressure of 4cm) and the seal simply starts springing leaks when the pressure ramps up to 10cm. Fitting the mask at the higher pressure non-ramp pressure sometimes is enough to prevent it from leaking later in the night.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
Last edited by robysue1 on Sat Sep 24, 2022 1:08 pm, edited 1 time in total.
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Sat Sep 24, 2022 1:04 pm

dacotto1984 wrote:
Sat Sep 24, 2022 11:10 am
Hey thank you so much for your inputs with all this. Everything you are saying seems to be pretty accurate!
It sure seems to me like you've got a serious case of clinically significant anxiety---as in your anxiety is taking over your whole life and you probably need to be treated for it. If you don't want to take anti-anxiety medication, you really need to see a counselor who can give you some cognitive behavior therapy techniques for dealing with the anxiety and learning how to keep it from taking over when anxious thoughts are racing through your mind.

Why do I say that it seems like anxiety is a big, huge problem that's affecting everything in your life to a degree that you need to get some help in getting it under control? Well look at these anxious, stressful, and fear-filled statements you've made:
Yes, i think counseling could help greatly. Alot of my issues to are tied to my religious beliefs. so there might be a conflict because I might want to seek counseling tied to my religious beliefs. Maybe I can do both. I dont have a church right now and spiritually i feel lost. So thats a whole other ball.. theres so much in me lol but yes, i think its time to start making changes and reach out a bit. Thank you so much!
In my opinion it doesn't much matter whether you're getting some kind of religious counseling or secular counseling. But you need to be able to work with someone you can trust with confidential information about all of your fears and anxieties.

Finding a counselor you can trust can be difficult, but I really think you need someone objective you can talk to about what's going on in your life and who can make some suggestions for things you can try in order to bring the anxiety and the related fear, depression, anger, resentment stuff under enough control where you don't feel like its running your whole life.
In other words, you are dealing with some pretty significant and heavy emotional stuff that is tied up with your anxiety as well as your sense of who you actually are.
Yes, i strongly am! Theres too much to post thats unrelated to CPAP. These past 4 months have been extremely heavy with a ton of things.. one thing after another.. just the other day a family member died and it just throw another big wrench in the engine along with other wrenches that were throne so its like im being battered.
My condolences on the death of the family member.
but i am maintaining.. i just hope i dont get sick from all the stress and worry. everyday im waking up feeling different and yea... its bit intense. I have been working on it though.. gym.. calling people just to talk and talking and gym help but its like im always needing a huge dose of talking and yadda yadda...
My point is that unless you get some official help rather than just relying on friends/family members to talk to, you may very well wind up getting sick from all the stress and worry. A good counselor, regardless of their background, should be able to help you address the stress and worry in positive ways.

Right now, I think you're not getting the support you want and/or need from friends and family because they're not capable of providing you with the objective viewpoint you need and the family members in particular are probably just as stressed out as you are about everything that's going on.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1

User avatar
dacotto1984
Posts: 21
Joined: Sun Aug 28, 2022 5:32 pm

Re: jolting - waking up and insomnia or not using cpap

Post by dacotto1984 » Sat Sep 24, 2022 6:50 pm


There are three striking things about your last four days of data: Leaks, the early morning gap, and the overall AHI.

Leaks
If the leaks are waking you up, then you've got to work on fixing the leaks. (Lots of folks here will be able to chime in with things to try.)

But even if the leaks are not waking you up, you're over Resmed's so-called "red line" of an excess leak of more than 24 L/min for extended periods each night. And sometimes you're well over that limit. (If Resmed machines still have Mr. Red Frowny Face, I bet you're seeing him if you look at the data on the machine's LCD.) So it may be worth putting some effort into fixing those leaks even if you don't think they're waking you up. Fixing the leaks may lead to better quality sleep, which will lead to better daytime functioning. But you don't want the cure for the leaks to be worse than the leaks themselves are.
Yes, i noticed my leaks are high and i always see the red sad face on my Resmed. i have a full face mask, i notice when im relaxed, that the mask starts to leak (ill hear air escaping). Sometimes i'll tighten up the mask and still have leaks.. its as if i have to put the mask on ULTRA tight for it not to leak, but then my face and head start to get really bothered cause of the tightness. Plus i can only go to sleep with my face laying on the side of a pillow. I cant fall asleep on my back or if im on my side, ill eventually put my face on the pillow and my face and pillow pushes masks allowing air to escape.

So an obvious question: Do you have a tendency to mouth breath? If so, you might need to look at using a full face mask or figuring out a way to keep your mouth shut more completely at night. (Lots of folks here can help with that issue too.)

If you don't know whether you are mouth breathing, can you tell us how dry your mouth is when you wake up in the morning?

So, i believe before CPAP, i would sleep through my mouth (i have a full face mask). However, when i have the cpap, i notice i close my mouth and breath through my nose

The early morning gap
The next most striking thing about your last four days of data is an early morning gap that's about 75-90 minutes long when you're not using the machine. Given your previous posts, I'm assuming this is when you wake up, go to the bathroom, and then can't get back to sleep.

Are you just getting out of bed and doing something else until you get sleepy and then putting the mask back on when you go back to bed? Or are you taking the mask off in hopes of getting back to sleep and then for whatever reason, you finally do put the mask back on?

The reason I'm asking goes back to my last post about the insomnia: If you're waking up not feeling sleepy and just getting out of bed to do something else and the masking up when you return to bed after getting sleepy, then that "gap" is totally irrelevant in terms of PAP therapy. And if you're doing something you enjoy or that gives you some peace and helps reduce your anxiety levels when you're not in bed, then you're also doing the right thing to help tame the insomnia monster in your bedroom.

But if you are taking the mask off and then falling asleep OR if you are lying in bed trying to sleep without the mask because you think it may be easier to get back to sleep unmasked, then that gap is significant and you need to tell us more about what's going on during that time frame.
yes. even though i do have large leaks during the 4 to 5 hours of continuous sleep, i am not waking up (Thank goodness! at least i have that!). But its that dreaded 5am - 5:30am wake up, going to urinate and not being able to go back to sleep when i get back into the bed. This has been going on for like 2 - 3 months (before the 2-3 months it was worse. i couldn't sleep at all, no matter what i did.. not even sleeping pills helped (trazodone, melantonin, benadryl), the sleeping pills just made everything way worse.

I think i am now in my third week, where i can actually lay down in bed at around 11pm - 12am, put the mask on and go to sleep in 30 - 60 minutes (which is a god send) . But its that dreaded 5am wake up that has me going crazy. After i come back from bathroom, ill throw the mask on, close my eyes but then feel my heart kind of elevated... maybe like a bit more of a pump/rush than usual (if that makes any sense).. it feels a little bit like "fear", but not so much to be considered fear (if that makes sense) maybe just a bit of a heart race or something.

One thing i do notice though.. right before that time when i wake up at 5am, ill kind of have a fearful event happen in my dreams. For example, if im riding a bike, then maybe ill fall off the bike or get scared that ill hit a car and then wake up. Im already getting use to that . But i do notice that does kind of happen... not always, but enough to notice. I also noticed that in my dreams, after i sleep around 7am, ill wake up a few times with dreams like im going to choke in something.. like the roof of a house comes falling on me slowly.. or that i travel down a tight corridor or a tunnel that all of a sudden gets tighter and tighter as if im going to get buried alive and choke, ill wake up out of fear and after seeing last nights AH events i noticed i have a few events there.. so those dreams might be related to those apneas and my brain trying to scare me awake. after i wake up, i check to see if im somehow not suffocating in my own mask somehow, my brain might still be trying to throw fear to me to wake me up, perhaps my brain doesnt quite know that there is a mask on my face trying to save my life vs a pillow smothering my face to death, blocking my oxygen.. or perhaps the mask is twisted off and is smothering me or not providing the pressure to open my air ways.. but its strange that i have those large leaks during 4 to 5 hours and everything is okay versus the 7-am to 9am time frame.

But anyway, yes ill wake up around 5am, urinate, put the mask on for like 10 to 30 minutes, try to sleep, fail, then take off the mask and just concentrate on breathing and relaxing without the mask.. ill just lay there, think, think of future, organize my thoughts, turn to the phone and watch memes, read comments or whatever, then put phone down after 40 minutes, ill quietly and softly put on my mask, relax and luckily, fall asleep (which is a god send).

Even though i hate the fact that i wake up at this time and i am not able to sleep from 11pm to 7am, i am at least happy that I CAN fall to sleep at some point. Its extremely bittersweet to me.
Before my issues, if i would wake up and 5am. id look at the clock and say, omg, its 5am.. back to sleep.. and go back sleep no issues. Couldn't for the life of me stay up during that time. Now its like, normal and i really dont like that.
it feels like im at the brink of insomnia everytime.

but yeah, if i do not take off that mask in that 5am wake up, and just leave the mask on.. i can stay there the whole time struggling to sleep. It happened so many times already where i try to fight it and just leave the mask on my face and sleep but it never works. I just learnt to accept that i cant sleep, take it off, get some air etc. and then luckily, fall asleep.. it been 3 weeks of doing that so far and im happy i can sleep.. i just wish i can continous sleep from 11pm to like 7 or 8am like i use to.
Overall AHI
Your overall AHI is good to excellent. Even if we just look at the spots where the excess leaks are below Resmed's red line (24 L/min), very few events are being scored. There not that many clusters of multiple events, and the most prolonged one that I see is from 9/22 (6:30-7:00), but that cluster could just be sleep-wake-junk from what you've previously written about your insomnia.
well thats very good to know then! thankfully it is working, even though i wake up and still feel groggy and crappy for some unknown reason. Takes like 3 hours for the crappy, groggy, drunky feeling to go away. I take no medications and did blood work and everything was okay in blood work.. Went to emergency room at beginning of june and they did scans of brain and chest and found nothing so idk if im having some kind of brain/mental issue or if the stress i have been having just exploded and im in the middle of mental recovery.

One question i did have. if i have large leaks and my AHI is coming back good/excellent, could that be false? Maybe its not detecting the AHI properly because the machine isn't able to detect it properly?


In other words, your current pressure range (8-16 cm) seems to be effective in controlling the obstructive events.

Would you be comfortable turning off the ramp feature? That might (or might not) help with your transition to full sleep when you turn the machine on. Or, you could simply try to start the ramp at 6cm and see if that helps.
At this point, im scared to touch the machine cause i fear that even a slight decrease might not give me enough pressure and ill induce the jolts and then insomina. I believe maybe at some point i should. Im hoping by december that ill start waking up refreshed and normal again. but at this point im afraid it might be too early and that i might induce insomnia again. But ill definitely remember this advice and see if i do lower it at some point soon! thank you very much for this advice!

I mention the ramp because different people have widely different experiences with the ramp, and not all of those experiences are good. There are people who feel like they can't breathe very well when the pressure is as low as 4cm, and they do much better starting at a higher pressure. There are also people who can feel the steady increase in pressure and that can be enough to make it harder for them to get to sleep. On the other hand, there are also people who feel like if they start the night at 8-10cm there's a hurricane blowing into their nose and that can prevent them from getting to sleep.

Turning the ramp off also might help fix the leaking: Sometimes we fit a mask at low pressure (your beginning ramp pressure of 4cm) and the seal simply starts springing leaks when the pressure ramps up to 10cm. Fitting the mask at the higher pressure non-ramp pressure sometimes is enough to prevent it from leaking later in the night.
Yes! i totally get this! I had to call sleep doctor and asked him to turn up pressure because i felt like i wasnt getting enough pressure and i think it worked. I still was getting jolts so i assumed the pressure had to do with it.. after he pumped it up i think it was much easier to try to sleep and it reduced the jolts at some point. Not sure if its just my anxiety playing tricks on me though.

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: jolting - waking up and insomnia or not using cpap

Post by robysue1 » Sun Sep 25, 2022 11:05 am

dacotto1984 wrote:
Sat Sep 24, 2022 6:50 pm
Yes, i noticed my leaks are high and i always see the red sad face on my Resmed. i have a full face mask, i notice when im relaxed, that the mask starts to leak (ill hear air escaping). Sometimes i'll tighten up the mask and still have leaks.. its as if i have to put the mask on ULTRA tight for it not to leak, but then my face and head start to get really bothered cause of the tightness. Plus i can only go to sleep with my face laying on the side of a pillow. I cant fall asleep on my back or if im on my side, ill eventually put my face on the pillow and my face and pillow pushes masks allowing air to escape.
Our faces do relax completely when we're asleep and this can cause leaks. This is why we often tell people that they need to fit the mask at full pressure and lying down, rather than the low pressure at the beginning of the ramp while sitting up: The combination of increased pressure and facial relaxation while lying down will trigger significant leaking for some people.

Things to try include:

Fit the mask when you are lying down in your normal sleeping position. Far too many people put their mask on and attempt to adjust the headgear to eliminate leaks while they are sitting up in bed. And then the minute they lie down the leaks start. So they sit up and try to fix the leaks, only to have the leaks start when they lay back down. It really helps if you do your best to adjust the headgear while you are lying down in the position you expect to sleep in.

Try to relax your face as much as possible while you are fitting the mask. This can be hard to do. But once you get the headgear properly adjusted, you ought to be able to use the clips to get the mask on and off with minimal additional fussing.

Turn off the ramp feature if you don't need it. (More on this in a bit.) That allows you to fit the mask at the beginning of the night at a higher pressure, so the mask is less likely to leak when the pressure starts to increase in response to events.

Make sure you understand how your mask's sealing system works: Over-tightening a mask with an air cushion can prevent the air cushion from fully inflating and that itself can lead to more leaks later in the night as the face relaxes. And as counterintuitive as it sounds, sometimes the fix for a badly leaking mask is to loosen the headgear, pull the cushion just a little bit away from your face (so there's no seal at all) and then let the cushion go so it can settle back onto your face and seal. This needs to be done when the machine is on so the air coming through the machine has a chance to fully inflate the air cushion.

Use a mask liner. Mask liners are usually small pieces of cloth/soft cloth-like paper that fit under the cushion of the mask. (They do not cover your nose or mouth.). Commercially made ones can either be disposable (use for one night) or made out of a knit fabric that is designed to be used multiple times and that can be washed. Some people will look at how the commercial liners are designed and then create their own DYI mask liner by simply cutting out a similar piece of cloth out of a clean, old t-shirt using their own mask's cushion as the template. Mask liners can absorb sweat and skin oils that are sometimes a culprit in triggering mask leaks. For some people, mask liners also increase comfort by creating a barrier between the silicone of the mask seal and their skin.
You can get an idea of what commercial mask liners look like by going to https://www.cpap.com/search?query=mask%20liners. Pad-a-Cheek also makes cloth mask liners in several styles that are designed to work with specific styles of full face masks. You can see her line up of mask liners at https://www.padacheek.com/mask-liners-full-face

Switch to a specially designed CPAP pillow that has cutouts on the sides that allow you to have the side of your face on the pillow where the mask settles into the cutout instead of being pushed by the pillow. Here's an image of a CPAP pillow in use by a side sleeper:
Image
Yes, sleeping with your head right at the edge of the pillow sometimes works. Switching to a CPAP pillow is a particularly useful thing to try since you are predominately a stomach and/or stomach sleeper. (There are versions of CPAP pillows that are not a "thick" as the one in this image if you are used to using a much thinner pillow.)

If you really are a stomach sleeper by choice, try using the so-called "Falcon position" which works well for many stomach sleepers who PAP. It looks like this:
Image
The Falcon position is easy to adjust if you prefer or need to face the other way when you're sleeping:
Image
My hubby is a stomach sleeper who uses a full-face mask with his CPAP machine and he usually winds up sleeping in some modified version of the Falcon. He finds that it's easier to do this sleep position if he uses a thin foam pillow underneath his stomach on the side where the mask is hanging off the bed pillow under his head.

Try a different full face mask: Not all full face masks sit on the face in the same way and Mask A may be great for Person X and horrible for Person Y, but Mask B may be bad for Person X and great for Person Y.

Try a nasal mask or a nasal pillows mask: You write,
So, i believe before CPAP, i would sleep through my mouth (i have a full face mask). However, when i have the cpap, i notice i close my mouth and breath through my nose
This is not as unusual as you might think. It also means that you can (and should) consider using a nasal mask or a nasal pillows mask. They both have a much smaller footprint on the face, and as a result they can be much easier to fit and much more resistant to just springing leaks when the facial muscles relax. But with a history of mouth breathing, you have to watch for that with nasal masks and nasal pillows masks. However for many people mouth breathing doesn't become a significant problem when they're using a smaller mask. Or you may find that you'll want to have both a full-face mask and a nasal/pillows mask so that if you're dealing with a lot of congestion from a head cold that triggers a lot of mouth breathing, you can just switch back to the full face mask.
Overall AHI
Your overall AHI is good to excellent. Even if we just look at the spots where the excess leaks are below Resmed's red line (24 L/min), very few events are being scored. There not that many clusters of multiple events, and the most prolonged one that I see is from 9/22 (6:30-7:00), but that cluster could just be sleep-wake-junk from what you've previously written about your insomnia.
well thats very good to know then! thankfully it is working, even though i wake up and still feel groggy and crappy for some unknown reason. Takes like 3 hours for the crappy, groggy, drunky feeling to go away. I take no medications and did blood work and everything was okay in blood work.. Went to emergency room at beginning of june and they did scans of brain and chest and found nothing so idk if im having some kind of brain/mental issue or if the stress i have been having just exploded and im in the middle of mental recovery.

One question i did have. if i have large leaks and my AHI is coming back good/excellent, could that be false? Maybe its not detecting the AHI properly because the machine isn't able to detect it properly?
The machines are actually pretty decent at detecting (but not always classifying) events as long as the excess leak is below about 40 or 45 L/min. And your leaks are usually below that level.

If you zoom in on the flow rate chart during a really high leak period you can usually see whether the machine is really having trouble tracking your breathing or not. One give-away is if the size of the recorded breaths shrinks down to almost nothing but stays "regular". Another give-away is if the machine flags an area as "breathing not detected" in a high leak area.

And since you are a natural worrier, it's also worth remembering that even when the leaks are high, you are getting some therapy because there is some additional pressure going down through your airway even when the leaks are high. So it's not like your OSA is going to magically go back to 90+ events/hour every time you have a large leak. It's just that during those high leak periods, you won't be getting the full benefit of the machine. And in the end, you'll simply sleep better if the leaks are better under control.

But you don't need to aim for a perfect or even a near perfect leak line. And you don't want the cure for the leaks to be worse than the leaks themselves. What I mean by this is pretty simple: If fixing the leaks makes it much, much harder for you to get to sleep and then stay asleep, then you have to ask the question, "What's a reasonable compromise between getting the leaks better controlled vs the additional "fussing" with all the CPAP related stuff needed to fix the leaks and the impact on your overall sleep quality caused by the additional "fussing".

Things that are easy to try and unlikely to create an extra burden in terms of getting to sleep include the obvious: change the bed pillow, learn to fit the mask properly, try the Falcon sleeping position for a night or two.

But changing to a nasal mask and then finding you have to tape your mouth to eliminate mouth leaks might be worse than the original leaks with the full-faced mask. (Some people have no trouble with mouth taping, but others can't stand it.)

Would you be comfortable turning off the ramp feature? That might (or might not) help with your transition to full sleep when you turn the machine on. Or, you could simply try to start the ramp at 6cm and see if that helps.
At this point, im scared to touch the machine cause i fear that even a slight decrease might not give me enough pressure and ill induce the jolts and then insomina.
Turning the ramp off will increase the pressure when you first turn the machine on.

Right now, based on your data, it looks like your ramp is set to start at 4cm (the lowest pressure possible) and does not ramp up to your min pressure setting of 8cm for at least 30 or 40 minutes. Once the ramp period is over, your pressure varies (as expected) between 8 and 14 cm. (You are never approaching your max pressure setting of 16 cm)

So since you're afraid of slight decreases in pressure, you really should look at turning the ramp off and seeing if you can simply get to sleep when the pressure is at 8 cm instead of 4cm.
I believe maybe at some point i should. Im hoping by december that ill start waking up refreshed and normal again. but at this point im afraid it might be too early and that i might induce insomnia again. But ill definitely remember this advice and see if i do lower it at some point soon! thank you very much for this advice!
You've misinterpreted my advice: I've not told you to decrease a pressure setting.

I have suggested you turn the ramp feature off completely, which would increase the pressure from 4cm to 8cm when you turn the machine on. I've also suggested that if you can't tolerate starting at your full 8cm min pressure setting, then you should increase the beginning ramp pressure from the current 4 cm to 6 cm.

You write:
Yes! i totally get this! I had to call sleep doctor and asked him to turn up pressure because i felt like i wasnt getting enough pressure and i think it worked.
This is why I think you would be better off without the ramp. You appear to be someone who doesn't like breathing at low pressure, and yet every time you turn your machine on, it's set to deliver only 4cm of pressure until the machine's ramp algorithm kicks in and ramps up to 8cm. You might be better off turning the ramp off and simply starting at 8cm of pressure.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1