# My Husband's (Possible) Sleep Apnea



## EllaSuaveterre (Oct 2, 2016)

So by now anyone who has read my posts is probably aware that my beloved is sick. He likely has sleep apnea, as he's showing most of the symptoms. (Dry mouth, morning headaches, exhaustion, loud snoring, high blood pressure, waking up in the night) Our appointment to get him seen to is next Monday at 3 PM, after which I'm hoping they'll refer him as soon as possible for a sleep study so we can get him tended to and looked after before this develops into something worse, like heart disease. 

It's stressful on us both, but one thing I enjoy is going back over my old posts on message boards and things, especially when I feel like life is truly horrible and unforgiving, because a month or two later, the thing that I cried over every night isn't even a blip on my radar. I love looking back at the bad times (and the good) and realizing that the pain I felt didn't last. So here I am, posting this for posterity. 

All I have to do is comfort him, be there for him, make him feel comfy, talk to him... stuff I do anyway. All I have to do is make it until next Monday. And we'll see where it goes from there. Mr. Suaveterre's primary care doctor is one of the most attentive and thorough physicians I've seen. Surely if there's anyone capable of helping my love, it's her.


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## Rocky Mountain Yeti (Apr 23, 2017)

EllaSuaveterre said:


> So by now anyone who has read my posts is probably aware that my beloved is sick. He likely has sleep apnea, as he's showing most of the symptoms. (Dry mouth, morning headaches, exhaustion, loud snoring, high blood pressure, waking up in the night) Our appointment to get him seen to is next Monday at 3 PM, after which I'm hoping they'll refer him as soon as possible for a sleep study so we can get him tended to and looked after before this develops into something worse, like heart disease.
> 
> It's stressful on us both, but one thing I enjoy is going back over my old posts on message boards and things, especially when I feel like life is truly horrible and unforgiving, because a month or two later, the thing that I cried over every night isn't even a blip on my radar. I love looking back at the bad times (and the good) and realizing that the pain I felt didn't last. So here I am, posting this for posterity.
> 
> All I have to do is comfort him, be there for him, make him feel comfy, talk to him... stuff I do anyway. All I have to do is make it until next Monday. And we'll see where it goes from there. Mr. Suaveterre's primary care doctor is one of the most attentive and thorough physicians I've seen. Surely if there's anyone capable of helping my love, it's her.


Good luck.
Apnea sucks. But it usually is treatable.

If apnea is confirmed, you can look forward to three possible "cures" or treatments.

The most commonly prescribed is the CPAP (constant positive air pressure) machine. I HATED this option. It is pert near impossible to sleep with all that apparatus on your head, and the noise it produces is almost as intolerable. I actually slept worse with the CPAP than without. It does, however work for some others. 

Sometimes, surgery is recommended, and it can be not only a treatment, but a permanent cure. Surgically removing some of the tissue that relaxes and blocks the airway is successful for some sufferers. However, the post op is painful and it takes a long time to fully recover. The worst part is that, in many people, the offensive tissue regrows and you went through all that for nothing. A good doc should be able to help give odds of surgery being successful in the long term. 

My ultimate solution was a device I put in my mouth at night that holds my jaw in a position that prevents that holds my jaw forward, thus preventing the tissue from relaxing into the obstructive position. It is relatively comfortable, easy to care for, and makes no noise. 

One other thing--Is Mr. S. overweight? For some, apnea severity is directly related to neck circumference (itself a function of weight). Simply losing weight can reduce, or even eliminate symptoms. Of course it's hard to do the work to lose the weight when you're constantly exhausted. Something you just have to fight through.


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## TJW (Mar 20, 2012)

I tried CPAP and failed, then the doc gave me BiPAP. It is far better, and the unit made by Philips which I have is extremely quiet. Much better than the CPAP.


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## EllaSuaveterre (Oct 2, 2016)

Rocky Mountain Yeti said:


> Good luck.
> Apnea sucks. But it usually is treatable.
> 
> If apnea is confirmed, you can look forward to three possible "cures" or treatments.
> ...


Mr. Suaveterre is not only not overweight, he's quite slim, which is why I became downright frightened when I realized he had high blood pressure. That is not supposed to happen at his age and weight. I am afraid that he may turn out to be one of those that can't tolerate the CPAP, but I intend to mitigate that risk if I can by getting him the most high-tech and state-of-the-art CPAP machine I can find. I'll ask about a temporary prescription for a strong sleeping pill as well. But I will absolutely look into this jaw-clamping device as well. I presume you have to go to a dentist to get it? I'm fortunate enough to have the number of a dentist who specializes in the treatment of sleep apnea.


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## Rocky Mountain Yeti (Apr 23, 2017)

EllaSuaveterre said:


> Mr. Suaveterre is not only not overweight, he's quite slim, which is why I became downright frightened when I realized he had high blood pressure. That is not supposed to happen at his age and weight. I am afraid that he may turn out to be one of those that can't tolerate the CPAP, but I intend to mitigate that risk if I can by getting him the most high-tech and state-of-the-art CPAP machine I can find. I'll ask about a temporary prescription for a strong sleeping pill as well. But I will absolutely look into this jaw-clamping device as well. I presume you have to go to a dentist to get it? I'm fortunate enough to have the number of a dentist who specializes in the treatment of sleep apnea.


I don't recommend the sleeping pill. The pill will in no way mitigate the apnea. If anything it will make it more dangerous. Apnea obstructs the airway, and the frequent "wakeups" are necessary to reestablish breathing. Sleeping through an obstruction could have very bad consequences. 

High BP is often hereditary, independent of weight, but even then usually doesn't hit until later in life. The good news is that, of all meds, BP meds are inexpensive and without any side effects for most men. 

Yes, a dentist is the source for an oral device, but it should be covered by regular health insurance rather than dental insurance. I got a referral to a dentist and my health insurance paid out. There are a variety of such oral devices at a wide range of prices. I got what is pretty much the gold standard for this sort of thing, from a company called SomnoMed.


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## EllaSuaveterre (Oct 2, 2016)

Rocky Mountain Yeti said:


> I don't recommend the sleeping pill. The pill will in no way mitigate the apnea. If anything it will make it more dangerous. Apnea obstructs the airway, and the frequent "wakeups" are necessary to reestablish breathing. Sleeping through an obstruction could have very bad consequences.
> 
> High BP is often hereditary, independent of weight, but even then usually doesn't hit until later in life. The good news is that, of all meds, BP meds are inexpensive and without any side effects for most men.
> 
> Yes, a dentist is the source for an oral device, but it should be covered by regular health insurance rather than dental insurance. I got a referral to a dentist and my health insurance paid out. There are a variety of such oral devices at a wide range of prices. I got what is pretty much the gold standard for this sort of thing, from a company called SomnoMed.


Okay, nix on the sleeping pill then, definitely. I'll somehow have to get him used to the mask without any other aid. It's strange that so many people can't tolerate it-- somewhere near half, I think I've read. How could one have an ailment that makes one inclined to sleep on anything not made entirely of wasps, yet also be unable to sleep with a particularly forceful oxygen mask?


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## karole (Jun 30, 2010)

The CPAP has been a god send for my husband. He is so much better since he began using it. Wish he had it many years ago.


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## Rocky Mountain Yeti (Apr 23, 2017)

EllaSuaveterre said:


> Okay, nix on the sleeping pill then, definitely. I'll somehow have to get him used to the mask without any other aid. It's strange that so many people can't tolerate it-- somewhere near half, I think I've read. How could one have an ailment that makes one inclined to sleep on anything not made entirely of wasps, yet also be unable to sleep with a particularly forceful oxygen mask?


Speaking only for myself, having anything attached to my head is a huge distraction and not at all conducive to sleep. Making it worse is that the headgear is attached to a tube running to a machine. The tube restricts what direction you can roll over in at any given time. We all naturally roll over multiple times every night in our sleep. If I roll over in a way that is restricted by our headgear, or mashes my headgear in an awkward way, then I am woke up--exactly what the gear is supposed to prevent. And each time it happens, its harder to get back to sleep the next time. It's a negative vicious cycle. 

Again, speaking only for myself, I will never again attempt to sleep with an artificial contraption strapped to my head. If that becomes the only alternative, I'll take my chances and, if unavoidable, redistribute the oxygen I consume to the rest of humanity and allow my wife to collect on that fat ol' life insurance policy I've got.


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## SunCMars (Feb 29, 2016)

Rocky Mountain Yeti said:


> Good luck.
> Apnea sucks. But it usually is treatable.
> 
> If apnea is confirmed, you can look forward to three possible "cures" or treatments.
> ...


I agree, surgery is the best answer. But, doctors have to go through all the alternatives [it seems] before they do it. Protocol, all that malarky.

What works for me is a good elbow to the ribs. I wake up every morning with aching ribs...
She with a sore elbow. :grin2:


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## cc48kel (Apr 5, 2017)

Not sure if I have sleep apnea but spouse and kids would complain of my snoring. About the same time my dentist recommended a night guard as I grind my teeth. The dentist can make them in his office which I will eventually do BUT for now I just use the generic ones at the store. No one has complained of my snoring so it might be helping... Worth a try!!!!


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## Wantpeace (Sep 5, 2017)

I just started CPAP a few weeks ago. I have supper high anxiety. I would never sleep more than 3 hours and have 12 interruptions an hour. That being said since starting CPAP I started to be able to get more sleep. I would wake up shaking almost every night, now I don’t. I think the chemicals in my head are way messed up from years of sleep deprivation. Hopefully things will get more normal for me.

I use the Philips Dreamstation, normally I can’t even hear it. I have the small “wisp mask” that I have gotten accustomed too. However I am thinking about changing to a “nasal pillow” mask. It allows for better side and stomach sleeping. The air hose attaches at the top of your head with the nasal pillow mask. It allows you to roll over without the hose getting tangled up.

In a very short amount of time I have noticed more energy. My acid reflux has gotten better. I find my stools are more solid lol. I am starting to get interested in things and my thoughts are becoming clearer. I still have a very long way to go though to hopfully get my anxiety under control, it did drop a little. I think most of these changes are due to my body getting more time to process stuff. Wish you and yours the best of luck.


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## Slow Hand (Oct 4, 2015)

I had sleep apnea real bad, many years ago, among other issues. Sleep apnea is scary, waking up gasping for air like that. What works for me, I stay away from gluten and eat more veggies. When I do eat gluten, I feel my sinuses swell and have trouble breathing from my nose and have issues with snoring and sleep apnea.

Hippocrates said something back in his day that's still just as real — 'Let food be thy medicine and medicine be thy food.'

Good luck and God bless.


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## Vinnydee (Jan 4, 2016)

I had all that your husband had and only got tested when I started to fall asleep while driving and during business meetings. The test is easy. Just sit there while they stick sensors on your head and then go to bed as normal. If they find sleep apnea, he goes back so that they can monitor him again but this time with a sleep apnea mask. I was waking up over 400 times a night from lack of oxygen. That put a lot of strain on my heart and I never went into REM sleep. I ended up with what they call nasal pillows which do not cover my nose or mouth. 

I have been using a CPAP machine for about 12 years now. What a difference it made in my life. I do not feel tired all the time, my blood pressure decreased and it even helped with my Restless Leg Syndrome. So many little things went away when I stared on CPAP. You have to be committed to use a CPAP machine. First of all it makes noise, although the new ones are pretty quiet. Then you have to get used to wearing headgear and some kind of mask or pillows that blow air up your nose. Many give up but if you stick with it, you get used to it. If I try to sleep without my CPAP machine I have difficulty falling asleep. I am so used to it and travel with it.

The only problem some couples have that include the wife is the noise and that air shoots out of the mask. The air is not forced into his nose. It comes out of a vent and only enters his nose when he breathes in. So you two will have to figure out how to sleep without it keeping you awake at night. I have my own bedroom so it is no problem. I used to snore so loudly that our out of town friends refused to use our guest room and paid for a hotel instead. We had our own bedrooms for a long time before CPAP. Kind of nice since you entice each other into your bedroom and when done, they leave and you get the whole bed to yourself. I am married 45 years an despite what internet experts say, you do not lose any intimacy when you sleep in separate rooms. What you get is a desire for more intimacy and a very good night's sleep.


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## EllaSuaveterre (Oct 2, 2016)

@Vinnydee thank you for all your advice. Most of it I knew already, but personal anecdotes from those who have survived this make all the difference. I hope I can get my husband to stick with the mask. I wish there were something more I could do to aid his transition.

I would like to ask, do you remember how long it took you to get an appointment for the sleep study? Was the second one immediately after, like the next day, or did you have to wait again?


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## Handy (Jul 23, 2017)

I resisted getting a sleep study for 5+ years thinking not much could be done and everything was too expensive or snake oil. During my sleep study I was partially waking up 56 times an hour because I stopped breathing (~snoring obstruction) for 10 to 20 seconds at a time.

I started with a CPAP (same pressure inhaling and exhaling) it helped a lot. I lay in bed about 1 to 2 hrs less every night. I used to get up to pee 3 to 5 times before the CPAP. Now I have a BIPAP (CPAP that has different pressures for inhaling and exhaling) and wouldn't be with out it. Most nights I sleep the whole night or maybe once a night I get up to pee, but this goes in cycles depending on how much water I drink and how much I perspire during the day.

Different head gear (masks- nasal pillows -etc) are just ways to get the air pressure in the person's respiratory system (mouth or nose) and can be changed without any problems. Most C/BIPAPS have a way to add moisture to the air so there isn't any "dry mouth" in the morning. What helped me was to think I was in an un-pressurized airplane at 30,000 ft. After a few days the nasal mask didn't bother me at all. If I have a runny nose, that is a problem. The nasal mask/pillow don't work out well so I sleep without the C/BIPAP and wake up dry mouth and often tired.

C/BIPAPS oxygenate the blood better than regular breathing if a person snores. More oxygen in the blood means the heart doesn't have to work as hard Maybe live longer and have lower blood pressure). Most people have more energy and less depression from feeling tired. I read that people that sleep better don't crave snacks as often to overcome the fatigue they experience by not sleeping well and waking up tired.

The down side of all of this is without insurance it is way-way-way over priced.


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## SunCMars (Feb 29, 2016)

EllaSuaveterre said:


> @Vinnydee thank you for all your advice. Most of it I knew already, but personal anecdotes from those who have survived this make all the difference. I hope I can get my husband to stick with the mask. *I wish there were something more I could do to aid his transition.
> *
> I would like to ask, do you remember how long it took you to get an appointment for the sleep study? Was the second one immediately after, like the next day, or did you have to wait again?


There is something else that can be done.
But, the evidence is anecdotal.

Both of you sleep on your sides, facing each other.
You will need to wrap one arm and one leg around him to keep your faces close. 

Now here's the important part.

Stick your tongue in his mouth and keep it there all night.
Be careful though, he will feel so loved he may forget to breathe. :smile2:


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## Satya (Jun 22, 2012)

My mother has SA and has been sleeping with a mask for over 10 years. Went through a few models (and they advanced over the years) and you can't even hear the one she uses now.

At first, it was a nightmare for her because she's claustrophobic, but with practice (and calming atmospheric sounds in the background) she learned to sleep with it peacefully. 

She has done so well long term (much better sleep than she has had her whole life, lots of weight loss) that her apnea has actually decreased and she needs the mask less. She thinks weight probably had a lot to do with her issue, plus she'd had sinus troubles all her life and had some minor surgery which also helped.

And, her anxiety overall has definitely decreased. Sleep is nature's balm. We definitely take it for granted.


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## Brokenhearted_MD (May 25, 2017)

Autoset Bipap is the better solution as the pressure goes down as a patient exhales.

If he has facial hair/beard, it will take some trials to determine which mask to use. The fitting process for a mask can be a drawn out process.

Machines have become progressively smaller. You won't hear snoring if he uses it regularly.

Best of luck to him


Sent from my iPad using Tapatalk Pro


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## EllaSuaveterre (Oct 2, 2016)

Brokenhearted_MD said:


> Autoset Bipap is the better solution as the pressure goes down as a patient exhales.
> 
> If he has facial hair/beard, it will take some trials to determine which mask to use. The fitting process for a mask can be a drawn out process.
> 
> ...


Thank you. Yes, he's a fuzzy guy. Mustache and a thick red beard. I don't know if we can afford a good quality bipap, because his insurance is rather terrible and he almost never goes to the doctor save his yearly physical, and when I drag him in because I suspect something's wrong. The only way we would get him a BiPAP is if the doctor specifically said CPAP wouldn't work for him and he needed BiPAP, or if for some reason he refused to use the CPAP.

Right now he seems very willing to stick with it, and I have warned him it could take a few weeks of nightly use before he gets anything close to used to it. I have warned him it blows air straight down his throat and it might not feel very comfy. I have warned him he might not be able to roll over in his sleep and he might have to somehow train himself to sleep only on his back or on one side. He still says he'll use it every night. Time will tell. 

The (un)fortunate thing about me is the one thing I will never, ever, ever compromise on is his health. He knows I will nag, plead, and argue until he goes to the doctor. Arguments over his health are the only ones we ever really have. Sometimes I feel bad about having to be so unmoving, and having to seem like some kind of harpy, but when it comes down to it I'd rather be divorced than widowed. I always apologize to my husband after the argument (this time, it only took two days!) And he always says he understands. But he knows that I will probably go so far as to literally tie him to the bed and guard him all night if he refuses to use the CPAP.

I wonder if you could tell me what the fitting process actually involves?


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## Rowan (Apr 3, 2012)

My SO uses a CPAP. I'm not sure on the specifics as to the type, since he had it long before we started dating. But it's very quiet, fairly compact, and the mask and hoses don't seem to bother him at all. It's also not bothersome to me in the slightest when we're sleeping. I can't even hear it over the soft music he prefers to have playing while he sleeps. And there's a noticeable difference in how he feels overall when he wears it versus when he skips it for even a single night. He's much more alert, his thinking is sharper, and the tiredness caused by his heart condition is much less apparent because he's been getting adequate oxygen all night. He just feels so much better when he wears it.


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## EllaSuaveterre (Oct 2, 2016)

Here's something that just occurred to me:

I haven't been sleeping in the room with my husband for the last few days, partly because of his snoring and partly because of my anxiety over his health. If I'm being perfectly honest, I don't think I'll be able to until he gets a diagnosis and/or a CPAP. I miss him terribly and I dearly want to be near him, but emotionally and psychologically I just can't at the moment.

So I tuck him in every night and give him hugs and massages and kisses. I tell him I love him so very much and hope he sleeps well and it hopefully won't be long until he can start getting better. And then I leave the room, make a cup of tea, and go to bed all by my lonesome.

But something occurred to me-- does he need me to be in there with him? I'm not talking about psychological support; as wracked with guilt as I feel over it, I'm sorry but I simply can't. But as far as his physical health goes, should I be in there listening to him breathe and shaking him awake if he pauses too long in between snores? Before we suspected he had sleep apnea I would just nudge him when his snoring got too loud and woke me up. I had to do so with some regularity. I know if I were in the room with him I wouldn't be able to sleep anyway, and I would be counting the seconds in between his breaths whether I wanted to or not. Is he at greater risk if I'm not in there monitoring him? Is there a danger of him suffocating??


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## Brokenhearted_MD (May 25, 2017)

EllaSuaveterre said:


> Thank you. Yes, he's a fuzzy guy. Mustache and a thick red beard. I don't know if we can afford a good quality bipap, because his insurance is rather terrible and he almost never goes to the doctor save his yearly physical, and when I drag him in because I suspect something's wrong. The only way we would get him a BiPAP is if the doctor specifically said CPAP wouldn't work for him and he needed BiPAP, or if for some reason he refused to use the CPAP.
> 
> Right now he seems very willing to stick with it, and I have warned him it could take a few weeks of nightly use before he gets anything close to used to it. I have warned him it blows air straight down his throat and it might not feel very comfy. I have warned him he might not be able to roll over in his sleep and he might have to somehow train himself to sleep only on his back or on one side. He still says he'll use it every night. Time will tell.
> 
> ...




I was in the military, and it was many years ago. I was given a few masks to try at home. The silicone pads were rough as they caused sores on my forehead. I ended up trying everything from full mask, nasal pillows, nose and mouth, nose only masks. 

A humidifier works for people who are sensitive to nasal dryness. I don't like to use them personally, as they can harbor bacteria if not cleaned regularly. 

Surprisingly, I have done better using a Netty Pot rinse to help my nasal passages before bed and when I wake up. T has done wonders for me.

I don't know how it goes as a civilian. In all honesty, I just buy my masks on Amazon, as it's cheaper than having insurance charge me an arm and a leg. 

He may need to shave down if it's too uncomfortable for him. Weight loss helps significantly.

I know what you mean about insurance. They don't pay much these days. The copay is as high as the visit was before insurance costs skyrocketed.


Sent from my iPad using Tapatalk Pro


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## EllaSuaveterre (Oct 2, 2016)

You know... as much as I hate admitting this @katiecrna is right about what she said in my other BPD thread on here. About the fact that my husband needs me right now. And even though I have resolved it within myself that I am going to be the one from now on who asks the doctor the right questions, cleans his medical devices, makes his lunch, checks his medical reports that the CPAP creates... even though I'm okay with all of that, I don't have the mindset of a caregiver. 

And, whether or not it has any real probability of happening, I'm scared my beloved husband is going to DIE!! If I really think my husband is in danger, I have to do more than just freak out about it. I have to learn, very quickly, how to do the things I need to do for him even when I'm overwhelmed. And if he does die-- which I don't think is highly likely but is still within the realm of possibility-- perhaps what I learn here about being resilient will help me after his death.

So, I've bought a book on how to be someone's caregiver without becoming a complete basket case yourself. A lot of this book I can't really relate to right now. This book is mostly for people caring for true invalids who require round-the-clock care, and I cannot relate or even picture it in great detail. I'm grateful for that, because it means we are not "that bad" yet. The situation I picture in my nightmares hasn't become real enough that I have begun to think about certain things. I pray I won't have to. But if he does have a heart attack or a stroke, I will at least have a book telling me how to be strong enough not to run away from him when he needs me most. 

I have read the book cover-to-cover in just two days, and have written down a few highlights that I think may prove useful over the next few weeks:

*Your husband is still your husband. Try not to fear him or feel guilty being around him. 

*Find a balance between meeting your own emotional and physical needs, and meeting his.

*Give up the idea of what "should" be happening and accept what is. Don't kick against fate. Sometimes, okayish has to be good enough.

*Keep up with how much his equipment and procedures cost, and ask for help if you need it.

*If you're having trouble paying, have [Name of Law Student Friend] read into the minutia of Mr. Suaveterre's insurance policy-- there's a small chance he'll find a loophole that can bring costs down.

*Have a strong, diverse support network who can help you (and help you help Mr. Suaveterre) when you get burnt out.

*If you try to be brave and just stick it out and be there, you may find you have skills in caregiving that you never knew you had. Maybe it will make you feel more capable in other areas of your life.

*Make a list of everything you're worried about. Brainstorm solutions for each item thereon. (I've already done this but may have to do it again over the next few weeks)

*Practice a self-care routine at least once a day. Use the flowchart! (I'm already trying to do this)

*When you're overwhelmed with feelings, name that feeling and any possible reason you might feel that way, then go do something else. Anything else.

*On that note, make a list of things you like to do that don't remind you of your husband. You can do those things when the feelings hit. (The trouble with this one is that EVERYTHING reminds me of my husband. All the things I do to relax usually mean using blankets or teas or soaps or watercolor paints etc., etc. that he bought me. So it all reminds me of him. Everything. I don't know how to not be reminded of him, especially when the feelings happen.)


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## EllaSuaveterre (Oct 2, 2016)

Mr Suaveterre had a lot of energy last night and today, relatively speaking. He stayed up well past midnight last night to accompany me and my guardian to the cafe to have coffee and dessert. He didn't drink any caffeine, and yet he was okay to drive me home afterwards. He was tired that morning, and I gave him a couple energy drinks I had in the fridge to help him make it through the day, but he didn't need them! He went to bed at about 7 PM that night and is sleeping lightly, twitching in his sleep and waking often, but _not snoring_. Not even a little.

I laid down with him and spooned him as he slept, but I'm too jittery to sleep myself. I don't know _what_ to think. Suddenly the snoring and fatigue are gone? What's going on with his blood pressure and his pulse, then? Anyone chronically ill will tell you, sometimes the scary diagnosis that you know you have is better than the collection of symptoms that could be _anything_. 

I'm just gonna go with it. I've been so keyed up for days upon days that I can't really get _more_ unsettled, even if the news becomes more unsettling. I'm already jittery, my own pulse and blood pressure are haywire, and I constantly want to take a brisk three-hour walk or do a hundred push-ups. Three more days until the appointment. I'm putting entirely too much hope on the idea that the appointment will give us any kind of clarification as to his state of health. Maybe the doctor, as skilled and thorough a diagnostician as she is, won't have any idea what's going on either.


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## katiecrna (Jan 29, 2016)

Why does anything have to be wrong with him? Maybe he is healthy, maybe he just snores.


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## john117 (May 20, 2013)

My father was like that, and his brothers too. Like chainsaw loud. The advantage of living in the city is that urban noise drowned it out... He lived to be 86.


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## EllaSuaveterre (Oct 2, 2016)

katiecrna said:


> Why does anything have to be wrong with him? Maybe he is healthy, maybe he just snores.


The high blood pressure, mostly. We've had four readings now and all four say that he's prehypertensive. Thus I've been making his lunches to keep his sodium intake down. Not sure how much it'll help.

I ended up sleeping with him the night through. He didn't snore but he did wake up a lot in the night.


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## katiecrna (Jan 29, 2016)

Prehypertension is not hypertension. I'm sure he is fine. Stop making a mountain out of a mole hill.


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## john117 (May 20, 2013)

I've dealt with HBP for 10 plus years. With medicine and lifestyle it's a comfy 117/78. Without it's more like 140/90. 

Being active helps.


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## EllaSuaveterre (Oct 2, 2016)

Three days until the appointment, and my husband told me that today, he wasn't tired. But upon standing up at his desk, his heart began to pound hard in his chest. It wouldn't stop for 15 minutes. He had no other symptoms except for a mild headache. It also happened a few days ago, when he awoke in the night.

My husband got the idea to record himself sleeping tonight using a webcam and I could check it later for signs of apnea events. He says it's still probably sleep apnea because people don't have heart problems for no reason.

If it's not sleep apnea, it's definitely something coronary. I'm no longer going to lead in with the snoring as the problem. I'm going to say, "My husband seems to have prehypertension and tells me his heart will start racing unprovoked." 

The man needs some kind of a heart ultrasound.

Of course, my heart's doing the same thing, but for wildly different reasons. If it weren't such a tense situation, I'd laugh.

Three more days. Just three more days.

Until then, we're going out to eat. I want it to be low-sodium, but if he doesn't choose something low-sodium, that's okay. I want and need to spend as much time around him as I can. It will be good for us.


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## john117 (May 20, 2013)

Get him one of those... 

https://www.theverge.com/2017/8/30/16227040/fitbit-sleep-apnea-tracking-ionic-smartwatch-sensors

I have the Charge 2 and get very detailed sleep info. The Ionic is much better than the Charge.


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## EllaSuaveterre (Oct 2, 2016)

I don't think it's sleep apnea at this point. He's having heart palpitations.


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## Wantpeace (Sep 5, 2017)

It could be anxiety. It could be gerd and digestive issues. Sudden movements and bending over can even cause palpitations especially after eating. It could be all the above due to sleep apnea. When trying to figure out if I had sleep apnea I downloaded the app Snore Clock to my android tablet. It records how much time you spend snoring. You can play suspicious areas back to check for pauses in breath. If he snores it is worth being checked out. Even minor sleep apnea that disturbs deep sleep can mess up hormone levels. Catch it before it gets serous. See a cardio doc too if you suspect something.


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## EllaSuaveterre (Oct 2, 2016)

Yes, @Wantpeace we're going to the doctor on Monday afternoon. I'm going to tell the doctor everything we've seen, everything he's felt. I've been taking notes. I'll probably show her the recording of his sleep that's being made right now as I'm typing this. I'll ask if it's prudent that she refer him for some kind of exploratory tests on his heart- Some kind of heart ultrasound or an EKG or something- and a visit to the sleep clinic. 

I have a story to write and I can't focus. I feel like if I cough the wrong way, my _own_ heart will stop, and that might not be a bad thing. I just want to be whisked off to some magical fairytale castle where this isn't happening.


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## Handy (Jul 23, 2017)

EllaSuaveterre, I am not a doctor but my opinion is if your H stops breathing for a few seconds, his natural reaction will to gasp for air and that wakes him up. Pauses between breaths is the apena phase. What the pauses do is lower the blood oxygen and raise the carbon-dioxide in the blood, which makes the heart pump more blood. Long term this can lead to heart damage. So no, your H will not suffocate or stop breathing and die. Long term the apena can shorten his life and make him tired during the day.

The mask I use cost $200 at the respiratory supply store. On eBay it is $58. My hose is $100 at the rip-off store and $26 on eBay. I see used CPAPS, some almost never used on Craig's List for $400, but you really have to know a lot about CPAPS to get the correct one. They are all adjustable for each person's use but the industry keeps the procedure of setting it up a secret - proprietary information. I suspect is for medical reasons and so people buy machines from established dealers, which keeps the price unreasonably high. My insurance company required that I have my machine checked every 6 months. I got a new mask, a new hose and the respiratory equipment supplier checked the pressure settings with a "U shaped tube filled with water to see how far up the water went when the machine was running. All that for $350 and it only took them 5 minuets. I played their game for a while and now I don't play it anymore.

When I say CPAP, I include the other models such as BiPAPS and what ever else is on the market.

BTW, I like my BiPAP (inhale pressure and lower exhale pressure) much better than my single pressure CPAP. I have a relative that has what I call an AutoPAP. It changes the inhale pressure and exhale pressures, based on how a person breathes and I suppose if they snore, the pressure goes up a little. I don't have an AutoPAP so i don't know exactly how it works but my friend really likes it, except for the payments which really suck. 

Some places have rental CPAPS and off lease machines you can buy. Inside the machine I have is a fancy fan, pressure sensors, and a controller circuit board. A low priced laptop computer has more hi tech parts in it than a CPAP.

Most of the CPAPS have a cell phone device that calls in the recorded settings to your respiratory doctor or staff or maybe the equipment seller. To me this is just extra junk that raises the cost of the machine and related services. The machines used to just have an SD card like a digital camera has and it can be checked once or twice a year to check for the client's usage (time and hours used) and how much air went through the machine to check for mask leaks.


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## lordmayhem (Feb 7, 2011)

You won't really know until an actual sleep study is done. I had my colonscopy earlier this year and the surgeon told me that I really need to be seen for my sleep apnea because I stopped breathing multiple times. During the last few years, it's gotten worse, and I'd wake up at night gasping for air. I even had to sleep in the recliner just so I could sleep.

So I saw my doctor and he referred me to the sleep study clinic, and so I had it done on August 31, just two weeks ago. The tech hooked up all the leads all over my body and glued some to my hair to monitor my brainwaves and other body functions. Fortunately, I was very tired that day and was able to fall asleep in the bed despite all the electrical leads hooked up to me.

In the middle of the night, the tech woke me up and put me on a CPAP because she was alarmed. It was my first experience with CPAP, but I was able to sleep the rest of the night. I was diagnosed as having severe sleep apnea. The levels are:

5 - 14 episodes per hour = mild sleep apnea
15 - 29 episodes per hour = moderate sleep apnea
30+ episodes per hours = severe sleep apnea

She said I was having 56 events per hour and my oxygen level dropped down to 80%. Apparently, I needed a CPAP immediately, and its a wonder I haven't had something major happen yet. However, I may have waited to long to finally be seen for my sleep apnea. I've had EKGs done before, and they were always normal, but this last time my doctor had another one done because I reported the sleep apnea systems. Apparently, he saw something on EKG that concerned him enough for him to refer me to a cardiologist, and now I have an appointment to see a cardiologist on October 3. Sleep apnea can cause heart damage, strokes, high blood pressure, etc, etc. Maybe my heart is damaged, I don't know yet.

Picked up my Philips Respironics Dreamstation Pro CPAP with heated humidifier yesterday and last night was my first night using it. It has a cellular connection that uploads data automatically to my provider. I was provided with a Resmed Airfit F20 CPAP mask during the sleep study. My health insurance is through Tricare, which will pay for most of the rental, and I have to pay the copay.


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## EllaSuaveterre (Oct 2, 2016)

Yes, thank you. I've been doing a lot of research on sleep apnea, but I'm starting to think that's not what he has because some disturbing new symptoms have cropped up that don't seem related to sleep apnea at all.


-He is prehypertensive, and has been since possibly as early as June 2017

-He has always been tired during the day, and rather low-energy, but still has some good energy days

-He often snores, _but not all the time_, and when he snores he sometimes appears to snore himself awake

-He does not sleep well, sleeps very lightly, wakes often, and twitches in the night

-He has headaches in the morning

-He told me this evening that for several months he has kidney pain (!!) upon waking which immediately goes away when he stands up

-He has a higher-than-normal resting heart rate (80-90)

-He has occasional bouts of heart palpitations which last for 15 minutes or longer. He has had two so far in the last fortnight.

-His mother had a small heart attack and lived, and he had a grandfather who died at age 49 of a heart attack.

So the kidney symptoms and cardiovascular symptoms are _deeply_ concerning to me.


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## brooklynAnn (Jun 29, 2015)

I noticed you said you have him energy drink to stay awake...what kind of energy drink did you give him?


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## EllaSuaveterre (Oct 2, 2016)

brooklynAnn said:


> I noticed you said you have him energy drink to stay awake...what kind of energy drink did you give him?


It was a five-hour energy, but it doesn't matter because he didn't drink it. He had energy that day, somehow, and didn't need it.


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## lordmayhem (Feb 7, 2011)

EllaSuaveterre said:


> Yes, thank you. I've been doing a lot of research on sleep apnea, but I'm starting to think that's not what he has because some disturbing new symptoms have cropped up that don't seem related to sleep apnea at all.


We can speculate all we want but in the end, what counts is the doctor's diagnosis.


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## EllaSuaveterre (Oct 2, 2016)

lordmayhem said:


> We can speculate all we want but in the end, what counts is the doctor's diagnosis.


Less than two days to go now. I pray with all my might she'll have something in mind... and run a few tests to be certain... and tell us what to do.


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## brooklynAnn (Jun 29, 2015)

That's good. I hate those things...they make my heart race. A few years ago I had palpitations, one night I woke up and swear I could hear my heart beating so loudly and quickly....had a ekg done and a sonogram done next day at docs office...nothing. Had a stress done ..nothig. 
.so I decide to change my diet, exercise, meditate..it has helped quite a lot. I don't have it anymore...unless I have too much caffine. 

My H is on hbp meds. He has a family history of cardiovascular problems. We eat a low sodium diet. He is fine...only snores when he is tired and neck is bent all funny. I get him to relax at night by giving him a foot massage and massage his neck and shoulders. He lives that. The good thing about my H is if I tell him something is good for him..he will go long with it. So he will eat whatever I give to him. I think I take better care of him than myself.

Over worrying is gonna make you stressed out and create havoc on your body. Keep going that route will kill you faster than your H. So take heart in the knowledge that you are doing everything necessary to get him probably diagnose. You should spend sometime reading a nice book or go on a walk, get your mind out of that space and do something else.

Good luck to you both. 



My H


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## EllaSuaveterre (Oct 2, 2016)

I do have one question-- that being, why you would rent a CPAP machine when you could just buy one to keep for less than $1,000. I know BiPAP is much more expensive, and I understand why one would rent that, but a really good CPAP is only around $900 or so. Easily payable with the aid of a payment plan. Do CPAP machines become obsolete quickly or something? Do they break down easily and need to be replaced often?


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## Wantpeace (Sep 5, 2017)

EllaSuaveterre said:


> I do have one question-- that being, why you would rent a CPAP machine when you could just buy one to keep for less than $1,000. I know BiPAP is much more expensive, and I understand why one would rent that, but a really good CPAP is only around $900 or so.


Perhaps rent to try it out. Buy one to keep. You need a prescription to get one in the USA so normally you end up going to a local supplier and they are much more expensive because of that. My first machine insurance paid for it. If I get a second one that is not covered by insurance I would purchase it online. (was thinking about one to keep in the car for camping or getting stuck overnight when traveling) But to buy a second one in the USA I still would need the prescription from a doctor. They set the operating pressures and the menu to change them is hidden to prevent the user from changing them. It is a liability thing.


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## EllaSuaveterre (Oct 2, 2016)

We went to the doctor today. I have answers!! Well, sort of. 

The doctor suspected sleep apnea straight away. She ordered several tests to be run, and gave us several suggestions to keep him alive and as well as possible until the results come in. He's going to have a daily nose spray, Flonase in each nostril, 2 sprays every day. She said the probable apnea could be caused by a nasal deformity, so if he has sleep apnea, she wants us to make an appointment with an ENT to determine if he would benefit from a nasal surgery instead of a CPAP.

I also need to sew a tennis ball into one of his shirts which he'll sleep in at night so he doesn't sleep on his back.We should buy two bed risers to elevate the head of our bed. I'll buy the tennis ball and the bed risers on amazon tonight and will expect them in two days' time. Fuzzy has also replaced his watch with a sleep-and-pulse-tracking fitbit, which should arrive within a week. 

He had his blood iron levels tested this evening to make sure the twitching isn't caused by that, and he had his thyroid levels checked in the same blood test. I'm not sure why; perhaps to ensure he didn't have an enlarged thyroid that was crushing his windpipe or something. He should get the results of the blood tests mailed to him within a month. 

He's going in for an overnight sleep study at a sleep lab within the next couple weeks. During the sleep study, he'll also be tested for something called periodic limb movement disorder. We'll get a phone call from the local heart institute, which I suppose doubles as a sleep institute, telling us when, precisely, he'll go in for his study. I told him he'll have to actually answer all his spam calls from telemarketers from now on, just in case one of them is the study center. 

I asked the doctor what in the name of the gods to do about his heart, and she said that the cardiovascular issues aren’t horrifyingly bad yet. The best way to address the heart problems for now would be to rule out (or diagnose) sleep apnea, and if the treatment for that won't help him, then we can come back and look for other options like blood pressure medication. The kidney issue, as well, is probably caused by either poor sleep or poor posture. We can address the sleep problem, and if it doesn't go away after he has his cpap and/or surgery, we can have further tests run. 

So Then I asked _The Question_. You know, _*THE QUESTION*_. To my mild-to-moderate horror, the doctor also said his life expectancy could indeed be cut short by the sleep apnea and cardiovascular issues, but that since we seem to have caught it early, assuming he has sleep apnea and assuming it responds well to the CPAP or nasal surgery, his life shouldn't be any more endangered than it was before. She said it likely won't kill him. No guarantees, but likely not. She said that if his resting heart rate should ever rise above 100 bpm, I should call her at once. 

I had told Mr. Suaveterre before that given that he apparently has heart problems, our usual Autumnal trip to the fair would probably be cancelled. To my husband's delight, the doctor gave him the green light to go to the fall festival this year, and even to ride the thrill rides and sample the artery-clogging fair fare. I was skeptical, but she said that there's a difference in the heart's "electrical" system and its "plumbing", so to speak. Fair food and thrill rides harm the latter, and his potential problems are with the former. I won't pretend to understand the analogy, but I trust her wisdom. 

ETA: I actually googled the analogy, and holy Asclepius, ATRIAL FIBRILLATION IS THE WORST POSSIBLE THING. SWEET GODS, THAT BETTER NOT HAPPEN.

In essence, we won't know quite what's wrong or how to treat it until his sleep study is done, and until the results of the blood test come back, and the doctor says he'll probably be able to hold out until then. But once we know, and if we can treat it, he'll probably live a good long life with me. That's rather too many caveats for my nerves to take, but there's nothing I can do save follow the doctor's orders.


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## brooklynAnn (Jun 29, 2015)

Feel better now? This gives some answer and puts you in control over what needs to be done


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## EllaSuaveterre (Oct 2, 2016)

Yes, I suppose I do actually. "Probably not" is not quite a strong enough answer when I ask, "Is my husband going to die from this?" but it's a better answer than I was expecting. I'm glad we at least have some kind of timeline. I cannot wait to be able to add his sleep study into my calendar. I'll be alone in the house that night, which probably means I will be having Prosecco in a bubble bath at 3 A.M. with Norah Jones playing loudly in the living room.


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## john117 (May 20, 2013)

Norah Jones? That's a good start. Please look up Sarah Brightman for similar modes of inspiration... 

https://en.m.wikipedia.org/wiki/Sarah_Brightman


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## john117 (May 20, 2013)

Also, a full heart workup would be the reasonable thing to do once a sleep study is done. Which activity tracker did you get?


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## EllaSuaveterre (Oct 2, 2016)

I'm not sure exactly which one he got... And the doctor didn't seem too concerned about the prehypertension, or even the heart palpitations. She said they could be a symptom of the sleep apnea, and a sleep study was all that was needed for now, that we'd only have to do other tests on his heart if treating the sleep apnea didn't work. Should I have requested it anyway?


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## john117 (May 20, 2013)

Wait till after the sleep study I would think.


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## EllaSuaveterre (Oct 2, 2016)

Oddly, she didn't schedule us a follow-up appointment, so I guess it'll be my responsibility to do that once we have the results of all the tests. And, harder still, convince my husband that the follow-up is actually needed.


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## EllaSuaveterre (Oct 2, 2016)

Mr. Suaveterre got his fitbit today. We'll see how it tracked his sleep tonight in the morning. I can't imagine he'll sleep well, as the doctor advised me to attach a tennis ball to the back of one of his shirts and make him sleep in it, so he'll be unable to lie on his back. The tennis ball just arrived in the mail today. If anything, he's only going to awaken more often now. 

No word on when his sleep study will take place or with under what center he'll be treated. Therefore, I can't call them to harass them about how and when I'm to pay for it. I have only $370 of my own money, and even though that won't be nearly enough, the way it looks now, all of it will be going towards his treatment. Between two sleep studies and a CPAP, we'll drain our health savings account completely, and probably the majority of our emergency savings account as well. 

On Sunday, my parents have invited us both over, and I intend to take them aside and ask them why on earth they haven't at least offered to help. My parents had enough wealth accumulated to get us out of almost any situation as little as 6 months ago. We didn't need them to then, but the point was they were able to help us if we had. Now that they're retiring and decided to _commission for a house to be built for them from the ground up_... well, truth be told, even though it's not my place to say how they spend their money, I'm furious with them that they didn't consider that living is harder for millennials than it was for them, and apparently lacked either the foresight or the compassion to save enough so that one health catastrophe wouldn't break us. They surely did not _need_ a custom home built for them. We surely _do_ need a way to pay my husband's medical bills.


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## Wolfman1968 (Jun 9, 2011)

Not trying to scare you, but assuming he does have sleep apnea, it is not at all clear that CPAP use helps anyone prevent cardiac events such as heart failure, heart attacks, strokes, etc.

Because patients with sleep apnea had higher rates of these cardiovascular events, it was tempting to believe that by improving the episodes of oxygen desaturation by the use of CPAP, you could reduce the risk of such cardiovascular events.

However, a recent article (July 2017) in the Journal of the American Medical Association did NOT show a reduction in mortality or such cardiovascular event in a meta-analysis of 10 studies of over 7200 patients. Reference:

Yu J, Zhou Z, McEvoy RD, et al. Association of positive airway pressure with cardiovascular events and death in adults with sleep apnea. JAMA. 11 July 2017. doi: 10.1001/jama.2017.7967


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## EllaSuaveterre (Oct 2, 2016)

Wolfman1968 said:


> Not trying to scare you, but assuming he does have sleep apnea, it is not at all clear that CPAP use helps anyone prevent cardiac events such as heart failure, heart attacks, strokes, etc.
> 
> Because patients with sleep apnea had higher rates of these cardiovascular events, it was tempting to believe that by improving the episodes of oxygen desaturation by the use of CPAP, you could reduce the risk of such cardiovascular events.
> 
> ...



Today in, "things I would have been happy to live the rest of my life without knowing..."

Why did you show me that? Why in the name of the *GODS* did you show me that?? If the CPAP isn't going to help him, then what is? Will nothing improve his life expectancy? I've been worried that he's going to die and leave me penniless and bereft for weeks, and now you've imposed upon what _very, very little_ hope I had. In what universe is it a good idea to do that to somebody for the sake of spreading knowledge?? If you don't also have a study showing me how to correct the minor problem of his completely unimproved risk of sudden death, then your insight really could have waited until his autopsy. Ignorance is bliss.


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## Wolfman1968 (Jun 9, 2011)

EllaSuaveterre said:


> Today in, "things I would have been happy to live the rest of my life without knowing..."
> 
> Why did you show me that? Why in the name of the *GODS* did you show me that?? If the CPAP isn't going to help him, then what is? Will nothing improve his life expectancy? I've been worried that he's going to die and leave me penniless and bereft for weeks, and now you've imposed upon what _very, very little_ hope I had. In what universe is it a good idea to do that to somebody for the sake of spreading knowledge?? If you don't also have a study showing me how to correct the minor problem of his completely unimproved risk of sudden death, then your insight really could have waited until his autopsy. Ignorance is bliss.



Sorry to frighten you.

I think it ought to be part of your discussion with your husband's physician when you decide on what therapy to pursue. 

If CPAP is questionable (and the accompanying editorial in the Journal of the American Medical Association--the JAMA--says that it may be too early to say one say it definitively won't help and that more studies are needed), then when you compare it to other therapeutic options such as surgery, you have to remember that the CPAP is at this point somewhat unproven. It may factor in your decision.

Also, the arcticle does point out other benefits of CPAP besides the mortality and cardiovascular event issues--more quality of life type benefits. 

Really, should he be found to have sleep apnea, his physician is really obligated to give his information before starting him on the CPAP so you would be hearing it at that point. It's part of the concept of Informed Consent--- the patient needs to have an understanding of the true potential risks AND BENEFITS (or lack of benefits) in order to make an Informed Decision.

If his physician failed to tell him, that would be border on the unethical.


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## EllaSuaveterre (Oct 2, 2016)

Well, then I guess we'll have to also see an ENT to see if he qualifies for nasal surgery, which is something his GP suggested we do after the sleep study. I mean, if even CPAP can't reduce the risk of sudden and horrifying death, how much better could surgery possibly be to that end?

(Yes, go ahead and answer that; in spite of what I said a few minutes earlier, you've already opened Pandora's Box, and now I have to know the rest.)


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## EllaSuaveterre (Oct 2, 2016)

Also: okay, so CPAP's effectiveness is unproven. So, too, I take it, is the effectiveness of every other treatment at preventing heart attacks and strokes?

Just... Zeus' loins. Why would you tell me this if there's nothing I can do to fix it? Do you WANT me to worry until he dies? I was probably already going to do that, but here I was just beginning to think that maybe his having sleep apnea wouldn't be a life-altering or life-threatening thing with proper treatment. Maybe I could bank on him being okay. Maybe I wouldn't have any reason to worry. But no. CPAP might make him feel better but he still might die at 40 like every untreated apnea patient. And now I know that, and I won't be able to think of anything else. 

Just like I can't enjoy pleasant weather without thinking about how pleasant weather won't exist one day once global warming destroy civilization as we know it. I haven't been able to wholeheartedly enjoy decent weather since 2015. Now, similarly, I won't ever be able to fully enjoy anything with my husband again because it will always be in the back of my mind that he will probably die of sleep apnea related complications someday, several decades before I assumed he'd die when we got married. Thank you for that.

I know I'm shooting the messenger here, but why would you demolish what little hope I had?


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## john117 (May 20, 2013)

Parents do stupid things. I would have gone to an ivy league school for my MA degree if my parents hadn't blown a lot of money on a stupid house. Or, my preference, they could have spent it on themselves traveling.

Anyhow... Minor trigger. Which Fitbit did you get?


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## john117 (May 20, 2013)

Ella, you don't have a confirmed diagnosis of any heart issues. If the apnea thing doesn't pan out the next step is to see if he can get a telemetry EKG for a couple weeks, and / or a stress test. Which are things not done by a family practice doc in general.

My cat has a renowned and expensive veterinary cardiologist (2nd generation immigrant from my country as it turned out) and the amount of insight he provided about screening for potential Maine **** cat related heart issues was phenomenal. Hopefully you have decent insurance so it's time to start looking for real answers. 

The medical establishment would have us believe that as long as the title is there the doc is qualified. Go the next step up and get a good cardiologist.the guy who operated on my finger is an NFL orthopaedic surgeon... And I have lousy insurance. 

Look around.


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## EllaSuaveterre (Oct 2, 2016)

Thanks to the help of some knowledgeable people on a sleep apnea forum, I discovered that Wolfman1968's study was, while not false, rather poorly done. 

The control group was comprised of people with moderate to severe sleep apnea and existing heart disease who did not use a CPAP at all. The CPAP-using group was comprised of people with moderate to severe sleep apnea and existing heart disease who used their CPAP for an average of 3.3 hours per night. Of course they're going to have heart attacks. If I were to try sleeping for 3.3 hours every single night for a few months, I'm sure my heart wouldn't be feeling too well, either. I'm an insomniac, and I notice an increase in panic attacks (and, related, heart palpitations) on days when I don't sleep well, so I can imagine only getting 3.3 hours of restful sleep a night would be almost as likely to kill you as getting no restful sleep.

Did I mention that all of these patients already had some kind of heart disease? Because there's that. I'm not sure how much that muddies the waters, but it seems to me they should be studying ONE risk factor for heart attacks (sleep apnea), not two (sleep apnea and heart disease).

This was not a well-executed study, and the fact that it's quite possible I could trace the conclusions that I drew to some kind of error on their part greatly eases my mind.


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## Wolfman1968 (Jun 9, 2011)

EllaSuaveterre said:


> Thanks to the help of some knowledgeable people on a sleep apnea forum, I discovered that Wolfman1968's study was, while not false, rather poorly done.
> 
> The control group was comprised of people with moderate to severe sleep apnea and existing heart disease who did not use a CPAP at all. The CPAP-using group was comprised of people with moderate to severe sleep apnea and existing heart disease who used their CPAP for an average of 3.3 hours per night. Of course they're going to have heart attacks. If I were to try sleeping for 3.3 hours every single night for a few months, I'm sure my heart wouldn't be feeling too well, either. I'm an insomniac, and I notice an increase in panic attacks (and, related, heart palpitations) on days when I don't sleep well, so I can imagine only getting 3.3 hours of restful sleep a night would be almost as likely to kill you as getting no restful sleep.
> 
> ...


I'm glad you're feeling better but I don't think you're talking about the same study that I referenced. I didn't refer to a study that was "done". The JAMA article was a meta-analysis of 10 clinical studies; in short it's a type of summary of the data of the available studies. Doing a meta-analysis is a way of combining/summarizing the data of the studies that OTHER people have done in order to extract meaningful information out of the aggregate of all those studies. It's more of a literature/data review, and they never actually touch a new patient to create the article. Please check the actual reference citation I listed to be sure and read the article for yourself. 

I think your sleep apnea forum must be talking about some other study because a meta-analysis wouldn't be set up the way you described.

Here's a link to the actual abstract:

Positive Airway Pressure, Cardiovascular Events, and Death in Sleep Apnea | Cardiology | JAMA | The JAMA Network


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## EllaSuaveterre (Oct 2, 2016)

Wolfman1968 said:


> I'm glad you're feeling better but I don't think you're talking about the same study that I referenced. I didn't refer to a study that was "done". The JAMA article was a meta-analysis of 10 clinical studies; in short it's a type of summary of the data of the available studies. Doing a meta-analysis is a way of combining/summarizing the data of the studies that OTHER people have done in order to extract meaningful information out of the aggregate of all those studies. It's more of a literature/data review, and they never actually touch a new patient to create the article. Please check the actual reference citation I listed to be sure and read the article for yourself.
> 
> I think your sleep apnea forum must be talking about some other study because a meta-analysis wouldn't be set up the way you described.
> 
> ...


Oh gosh. You're right. It's a different matter altogether. But I would have to see each one of these 10 studies that this analysis looked at in order to determine whether they had the same problems as the one I found. And since I don't have them I can't draw my own conclusions. 

Why must it be so difficult to accurately estimate my husband's life expectancy? This is my life here. Actually, infinitely more important than that, it's my husband's life. If it were merely my own life on the line I don't think it would be more than a blip on my radar. Abandoning sentience oneself isn't so bad. There are a great many things that are worse than dying, and one of them is mourning a spouse, so this situation matters and I'll probably be spending the next several months trying to find these aforementioned 10 studies. Even though knowing the truth will not add a single hour to my husband's life, and will likely cause me a great many hours of misery, I'll relentlessly dig for it anyway under the assumption that the misery of not knowing is worse than the misery of knowing. Or perhaps it's the hope that, as with Pandora and her box, if I scrape the bottom of the knowledge barrel long enough I'll come back with a sliver of Hope. Isn't the human psyche fantastic???

Oh well. The hour and a half of blissful ignorance was nice. 

What do you do for a living? You seem to me to be a very scientific sort of person.


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## Wolfman1968 (Jun 9, 2011)

EllaSuaveterre said:


> Oh gosh. You're right. It's a different matter altogether. But I would have to see each one of these 10 studies that this analysis looked at in order to determine whether they had the same problems as the one I found. And since I don't have them I can't draw my own conclusions.
> 
> Why must it be so difficult to accurately estimate my husband's life expectancy? This is my life here. Actually, infinitely more important than that, it's my husband's life. If it were merely my own life on the line I don't think it would be more than a blip on my radar. Abandoning sentience oneself isn't so bad. There are a great many things that are worse than dying, and one of them is mourning a spouse, so this situation matters and I'll probably be spending the next several months trying to find these aforementioned 10 studies. Even though knowing the truth will not add a single hour to my husband's life, and will likely cause me a great many hours of misery, I'll relentlessly dig for it anyway under the assumption that the misery of not knowing is worse than the misery of knowing. Or perhaps it's the hope that, as with Pandora and her box, if I scrape the bottom of the knowledge barrel long enough I'll come back with a sliver of Hope. Isn't the human psyche fantastic???
> 
> ...


First of all, I know your husband is precious and you want the best for him. So ANY risk to him is, of course, not acceptable to you.

That being said, let's assume the worst case scenario. what if CPAP really doesn't help at all? Does that mean he's doomed in the next 5 years? 
NOT AT ALL!

What you need to do is find out what happens to sleep apnea patients who get no treatment. Is there any data about that? Yes there is!
It's not my area of expertise, but a quick Google search produced this New England Journal of Medicine article about what happens to people with Sleep Apnea. Here's the reference:

http://www.nejm.org/doi/full/10.1056/NEJMoa043104#t=articleResults


Now, I think the post important statement in this article is that this risk of Stroke and Death is 3x higher in Sleep Apnea patients compared to those without sleep apnea during the 3-4 year monitoring period. Now, that sounds scary, and it is, but think about it. Out of, say, 100 middle-aged 55 year old guys, how many do you expect to die in the next 3-4 years? 1? 3? Whatever the number is, triple it. It's a big jump in mortality, but still, the vast majority of that group is still alive.

Another way of looking at it is a life table. Here is the Social Security Life Table. 

https://www.ssa.gov/oact/STATS/table4c6.html

So, at any age, you can look up the chance of dying that year. For a 55 year old man, the number is 0.007803 probability to die within a year. For a sleep apnea person, the chance is 3 times that number. Still pretty small. 

So don't get out your black dress and veil yet. The odds are you have many years before widowhood.


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## EllaSuaveterre (Oct 2, 2016)

Wolfman1968 said:


> First of all, I know your husband is precious and you want the best for him. So ANY risk to him is, of course, not acceptable to you.
> 
> That being said, let's assume the worst case scenario. what if CPAP really doesn't help at all? Does that mean he's doomed in the next 5 years?
> NOT AT ALL!
> ...


Gods alive, _thank you_. I don't think I've read _anything_ over the last few weeks that is both as factual and as reassuring as that. I think I'm beginning to understand how my therapist could have used the word "delusion" in response to my fears of being widowed before the age of 30. Thank you again.

ETA: Would it surprise you at all to know that I not only have an actual black dress and veil, but several of them? I own three mourning veils, several fascinators, and five or six black dresses. I actually have a full mourning wardrobe. I think this tells you all you'd really need to know about how I view the proverbial glass.


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## peacem (Oct 25, 2014)

@EllaSuavaterre 

I don't know how to advise you but I saw this -this evening and hope it may make you laugh





 moved to 4.47

x


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## EllaSuaveterre (Oct 2, 2016)

@peacem Thank you for the well wishes and the funny video. Billy Connolly is unceasingly hilarious. 

I think we're finally getting closer to a diagnosis. After having been on the phone for days, we now know that the doctor's order for a sleep study has reached our insurance company, and we will receive a letter stating whether he was approved within 15 days. I can call the doctor's office as soon as Friday and request that they tell the insurance company to expedite the approval process, but I'm not sure if I should as, even though he seems to be a textbook case, I wonder if forsaking thoroughness for haste could mean a greater chance of not approving him.

I don't know how but he seems to be getting more tired. He's neglected doing the dishes and taking out the trash two nights in a row and instead sleeps on the couch in the afternoons. I have done it for him without saying a thing, and he noticed and thanked me. Meanwhile, his blood pressure seems better. The last 2 times we went for a reading it's been normal. (Well, the last time, he was 114/81, but that's still a pretty big improvement over 123/85) 

I'm praying the sleep study is conclusive, because I haven't been sleeping well either, have an English exam tomorrow morning, and I'm coming down with something myself. I get done what needs to be done regarding his medical paperwork and the chores and any preventive care the doctor has told me to help him follow, and some preventive care that the doctor hasn't told me about but it's just common sense, like preparing his lunches to cut back his sodium intake. But when I have the luxury of being alone with my thoughts (a thing which I never thought I'd come to appreciate), I worry for him and his apparently declining health. And I feel rather awful for myself, to be frank, because having grown up with chronic illnesses and disabilities myself, and having married very young to an older man who promised he would take care of me, I never really considered the possibility that I would deal with his health issues too. At least, not for another thirty years. It doesn't sound pretty at all, and I understand that, but I'd give up the remaining use of my legs and possibly an ear if it meant our situations could be reversed and the natural order that has always existed in our marriage could be restored. Bargaining with the Gods like this feels better somehow, but I recognize that they won't answer me and I just have to deal with this until it goes away or I get completely acclimated to it. Or, most likely, a mixture of both.


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## EllaSuaveterre (Oct 2, 2016)

An update: Mr. S' insurance didn't approve a sleep study in a sleep lab, so the sleep center is going to talk with his GP about having him do a home sleep study. That isn't what he needs, because he also has strange leg twitches in the night, and only a lab study can diagnose what's causing them. But we will be able to figure out if he has sleep apnea at least.


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## EllaSuaveterre (Oct 2, 2016)

I am still trying to negotiate with my husband's primary care physician to get him some sort of sleep study before the year ends and his deductible resets. I call anywhere between twice and three times a week asking what in Hades is holding them up. Today's update was that the doctor-- his GP-- and her nurse have been having email correspondence back and forth regarding setting up a peer-to-peer. I still have no idea when or if he will have a sleep study. 

I apologized to the receptionist for having to call about the same thing so often, and she said to me, "It's not a problem at all. you're a wonderful caregiver." I thanked her, and hung up the phone feeling utterly distraught. A caregiver? Am I his caregiver now? Is that what I am? Is this truly the course my life is taking? To Hades with that!! I do not want to be my husband's caregiver. I never have and I never will. 

I never understood how and why people would throw away their lives for the sake of their families. I never understood why my mother took care of my grandmother. I do not understand why mother or my husband take care of me. It's one thing to be a Healer, naturopath, doctor, or nurse, because even though your work day is stressful and traumatic in such jobs, your work eventually ends. 

When you care for a family member, you're stuck that way until one of you dies. Enduring everything they endure, day in and day out, rarely if ever getting any respite. I do not understand why any sane person would subject themselves willingly to such long-term suffering. To hell with the very notion!! 

But what are the alternatives? If I didn't make his appointments, harass the doctors, sell my plasma so he could afford treatment, and pester him to follow doctor's orders, he wouldn't do any of it himself. I can't just let him suffer with untreated sleep apnea. And I surely am not going to divorce him for a condition that he may be able to treat within a few months' time. A condition that, even if untreated, probably wouldn't kill him for at least another decade. Maybe two. 

I always told myself that if I were ever stuck in that situation, I would leave, no matter how much I cared for the person. Better to grieve someone once and be done with it than to grieve every single day as their condition worsens and they deteriorate, until finally one of you is dead. But it seems my hands are tied, and in spite of having the choice to leave in theory, in practice I am helpless. I need him too much to divorce him, and I love him too much to passively watch him suffer. Therefore my only remaining option is to continue being a "caregiver." 

For the last several days I have been adept at simply getting through each day, not looking at the bigger picture, nor at any larger implications of becoming responsible enough to care for another person besides myself. I was able to not think about the precedent I must be setting: if I can look after someone once, I will surely someday be expected to do so again. But some days it hits me that this is the case. That I am now, to some degree, my husband's caregiver. That I may always be to some small degree. That this is probably not the last time I will be faced with looking after another human being I love on a long-term basis.

Curse the day I was born.


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## EllaSuaveterre (Oct 2, 2016)

My husband's GP has sent out a second referral for the lab sleep study. We still can't afford the lab sleep study but he still needs it. I haven't slept in his bed in well over a month. I hate everything and I don't want to leave, but I can't do this. I love him as much as I can love someone but I CAN'T LOVE ANYONE ENOUGH TO EVER, EVER GO THROUGH THIS!!!


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## tom72 (Nov 4, 2017)

I have severe sleep apnea and was using the CPAP machine, it was a good send despite how depressing it was that I had to use one

I've recently come off laser treatment where they break down the tissue of your mouth. Has worked a treat, has stopped the snoring and I still alert the next day, not feeling sleepy etc. I was more tired when I woke up. Use to pull over on a 40 minute drive for a nap


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## EllaSuaveterre (Oct 2, 2016)

My husband now has a CPAP machine. He still hasn't had his sleep study yet, so the machine is one that my uncle mailed to us. It's a ResMed S9 autoset, and my husband seems to like it well enough that I may not have to buy him the newer version. I bought him a mask-- nasal pillows-- with my own money and they just arrived today so tonight is his first night sleeping with it. And tonight is my first night sleeping with him in 2 months, hopefully. I have a lot of homework tonight so I might not be sleeping at all, but if I do it will definitely be right next to my darling.

Hoping and praying that nothing goes wrong and he's able to sleep with it all night.


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## EllaSuaveterre (Oct 2, 2016)

He finally had his sleep study two weeks ago. He's been sleeping with the machine for a month and finds it very comfortable. He says he thinks he has a little more energy We got the results back today. I called the study center to confirm, and for some reason, even though his AHI is only 4.2-- not severe enough for a diagnosis of sleep apnea-- the doctors said he "likely" still had obstructive sleep apnea anyway. They wanted to take him in for a lab study to confirm it but he said no, it was too expensive and he didn't want to. I told him he needed to call the sleep specialist back himself and get the paperwork which elaborates upon his results. He didn't say he would; he just told me not to worry about it.

So now I'm scared and confused all over again. How can you get a "kind of" diagnosis like this? How do we know he has sleep apnea, or that the CPAP will help him? How do I know it's actually improving the quality of his life?? What if he's just faking having more energy or it's a placebo effect or something?? What if he has something worse that the CPAP can't treat?? What if we don't catch that something worse until it's too late?? Why the HELL doesn't he understand that he NEEDS to look into these things that scare me, and that not knowing will not make me less scared!!! For that matter, WHY ISN'T HE SCARED?!! WHY ISN'T HE DOING SOMETHING!!!


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## Satya (Jun 22, 2012)

Ella, these things take time.

The increased oxygen flow didn't really hit my mother until she'd been a few months on the CPAP and realized just how much more restful she was, how much weight she was losing, and how much more energy she had. Maybe your husband knows you enough to know you're a worrier. Try to stop worrying. 

Give it time. He's on the right path and you're in better shape with answers than you were when you started the thread.


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## Rubix Cubed (Feb 21, 2016)

Ella,
I have had heart issues and have severe sleep apnea. The determination of severity is done by how many times he stopped breathing for more than 20 seconds in an hour. I was at 58 and they said that was severe. I use a CPAP 
(actually the newer model you referred to, Airsense 10, to the S9 which my wife uses, and the S10 is not worth the extra money for you) and I noticed NO extra energy, no weight loss, no more restful sleep, but my doctor said I added 10 years on to the end of my life. The only downside I have found is that now that I've grown accustomed to using it, I can't sleep without it without waking myself up with the choking from stopping breathing. The settings on the machine are changed to your needs, you can probably look up how to adjust it on youtube. if you have any questions about it tag me in your post with the question.


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## EllaSuaveterre (Oct 2, 2016)

So my husband been on the CPAP faithfully for two and a half months. His AHI is 1-2, but, he wakes up much more often than that. While I think he might be a little less sleepy, he still has bad days and which he's tired all day and goes to bed early. He still appears to have apneas somehow, in which his breathing will grow markedly heavier and then suddenly he'll gasp awake, in spite of the auto-adjusting CPAP being at full pressure. Furthermore, he twitches his legs all night and sometimes the twitching wakes him up as well. his Fitbit shows that he gets less than 15% REM sleep every night and less than 10% deep sleep. I dragged him to the doctor on the 8th, who immediately prescribed him pills for periodic limb movement disorder, to my gratitude. Though we still need to give it time, and increase the dose gradually until it works, the dose we're giving him now has absolutely no effect. The doctor told me to give it another month and see if the symptoms subsided on their own and with the help of medication before I bring him back to request a full sleep study.

I'm scared. I'm scared the lack of sleep over all these years is going to kill him. I'm scared he's going to die of exhaustion. I can barely ever sleep in our bed at night because I can't bear to see him wake up so many times, or feel his legs twitching. I'm doing everything I can, but I'm still so helpless.


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## EllaSuaveterre (Oct 2, 2016)

It hasn't yet been a month. How is this possible? The last twelve days feel like two months. I keep thinking I'm getting used to the constantly increased levels of stress, but I'm not. Now I'm taking classes 4 days a week, too, and I thought maybe keeping busy at school would stop my worry. It absolutely does NOT. All it means is I now have other things that ALSO demand every bit of my focus. 

Now, not only does he have Sleep Apnea and Periodic Limb Movement Disorder, he needs a circumcision for his phimosis and I'm somehow having to manage that, too.

I am counting down the days until I can call Mr. S' doctor back and say:

The PLMD pills aren't working
He somehow still wakes up gasping at night even with the machine going full blast
He's still tired and tells me he doesn't feel any better
I'm scared the man is going to asphyxiate in his sleep
Or have a bloody stroke because he probably hasn't slept in 18 years
We NEED a comprehensive, attended sleep study to figure out what in Hades his body is doing and why
Dash the expense, I'll figure out a way to get my parents to pay for it if need be
I'm already selling my own blood for Gods' sake
Please just help us


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## EllaSuaveterre (Oct 2, 2016)

He has finally been scheduled for a sleep study. I'm as relieved as I am afraid.


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## biwing (Feb 2, 2017)

I've been using a CPAP for 15 years and it provides the best nights sleep that I've ever had.

Before it, I would wake up with a terrific strangulation feeling not being able to breath. I would be in a panic, sweating and gasping. One night, I saw a bright light in my sleep and after waking up, jumped, gasping and having waken my wife at the same time, I asked her if she had seen the bright light. She just told me, in her sleep stuper that I must have been dreaming and to go back to sleep.

I thought about that experience for a long time and researched the internet about the bright light and found that a lot of people who claimed to have died and returned to life had experienced the same light. Well, this cared the H--- out of me!!

I talked about it with my PP and he recommended a sleep study. They found that I was having multiple apnea's during the night. The second night of the study, I got a full night's sleep and in the morning I was wide awake and had the most energy that day as I could ever remember in my life. They ordered a CPAP for me and I've been using it since (now on my second machine looking to replace it soon).

If I try to go a night without it, the waking to gasping for air returns immeadiately.


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