Newly diagnosed, waiting for next study

[WinchesterFan86]

Hi guys. So a bit of background. My husband was diagnosed a few months ago with severe sleep apnea and he suggested I get a study done to see if I have it. I'm constantly tired every day, I have been having acid reflux and I snore like crazy. I've always snored actually... Even as a baby.

Anyways I had my study done and half expected to hear "nope you're fine, you worry too much." However, I got told I have severe sleep apnea as well, with insufficient oxygen 250 times that night. And I feel like I only slept 5 hours. So ya... Crazy to think when I've slept 9 how many times I stop breathing.

I'm scared guys. I'm also overweight with a high BMI and have elevated blood pressure (sort of... The last few times I've had it checked I was at a dentist or doctor lol.) I'm on spironolactone once a day (100mg) to help water retention in my lower legs and feet. And BP in a normal setting (when I'm not scared) is 130/85ish... Give or take.

I'm scared I'm gonna have a heart attack or stroke while I'm waiting for my titration test and my mask. I see all these reports saying it increases sudden death risk especially if you've had it for 5 years and who knows how long I have had it?!

Can anyone offer help? How effective is treatment in keeping me alive? Will I feel better? Will it help me lose weight and reduce my risks? I'm only 33 and I want to live for a lot longer. Not to mention I want to start a family and I'm afraid I'll die trying heh.

Thanks...

Rose

[WinchesterFan86]

I will also mention that my mom had it as well and also congestive heart failure, hypertension, kidney disease and COPD. So I'm constantly afraid I'm going to end up like that. She passed away three years ago and I am still scared.

[zonker]

I'm scared guys.

welcome to the zoo! you have nothing to be scared of. you are taking a huge and positive step in the right direction. we're here to help you. sleep apnea is a pretty bad thing to have, but it CAN be treated. not cured, but treated. you've seen what a machine looks like because your husband has one. or at least, i'm assuming so?

hardly anybody sleeps well during a sleep test, whether in a sleep lab or in home in your own bed. but if you slept for five hours during the test, then they had enough to score you on. obviously, because they did.

so your journey begins. have they written a prescription yet for a machine? have they given you a copy of the sleep test? do you know when you'll get your machine?

so many questions, i know. but people here will need to start asking you more questions once you actually get your machine and start your therapy.

there are many different types and brands of machines. we don't all use the same. also, there are very many MORE varieties of masks. but this isn't something you need to worry about now.

just know that we are here to help. you can do this. you will feel better.

good luck!

[bombayone]

It is good that you are addressing the apnea component of your health problems. I suggest that you also aggressively work on weight control. Good luck. I hope that your health improves.

[WinchesterFan86]

Hello! Thanks for replying so quickly.
Yes my husband has a resmed airsense 10 elite I think. Small black machine. Very quiet! And a full face mask. I'd likely need a full mask too as I have a deviated septum and collapsed nostril. (lol probably a factor in the apnea as well.)

I haven't received the test results in print. Just had a short meeting with the doctor who was like yep you have severe Apnea and here's how many times you were without sufficient oxygen. I didn't know I could ask for a copy of the results.

I don't have a prescription yet. I have to go for A second sleep study where they try a machine on me and see what pressure I'll need then I'll get a prescription.

I know with my husband, after his second test he had a loaner machine first (an APAP to find out what best pressure to use) and then he just got his permanent machine last week. My titration test is on May 3. So hopefully before too long...

[WinchesterFan86]

Thanks Bombayon. Yes I have been going to the gym three times a week for a few months again. Haven't been in a couple weeks due to a throat infection and now a pulled tooth ha. Looking forward to getting back to it though.
Because of the tooth pull and throat problem I have been eating soft foods and drinking a lot of water, and no pop. Or coffee. So I'm hoping that habit will carry on once I feel better.

[babydinosnoreless]

Welcome.

I know it seems like a long wait. I was diagnosed in 2017. I too have a very high AHI. My sleep report was scary. I too thought I would die. Turned out my insurance didn't cover medical equipment like the very expensive bilevel they prescribed me. It took me a more than a year a move across states and a new insurance company I was able to get that machine. By then the pressure they prescribed was wrong, I had new doctors that didn't know my history and a DME (durable medical equipment) provider who just didn't care. They tossed a machine at me with the wrong pressures, with a mask that didn't fit right. Thankfully I was too stubborn to give up. I found this place and with the help I got here I now have a mask that works, pressures that work and an ahi that is usually under 1. Its not the miracle cure on weight loss. I have lost about 30 lbs but its damn hard work. Aqua fit several times a week, cut back to two sodas a day and cut most other carbs. My A1c is down to 5.5 but my blood pressure has not significantly lowered I still have to take daily medicine for that. Yes I sleep better but it didn't and can't fix all of the other medical issues I have. It does give me a tad more energy and mental clarity to deal with the other issues and for that I am thankful.

[Danvers]

I totally understand how you feel, Rose. I was a little freaked out when I was first diagnosed too.

The good news is that you will soon be treating your OSA, and that will be so much better for your body. You can’t go back in time and do anything about the possibility you’ve had sleep apnea you’ve had for years. It won’t help to dwell on that, but you are about to start taking care of it now. You’ll be getting your CPAP set up and getting on the right path. Weight loss will definitely be a place to focus for your health too. (and it’s a lot easier to do when you have energy again, that’s for sure)

Before CPAP I didn’t think I had any energy issues. I got sleep tested because I snored. I didn’t think I had any issues. But after about 5 days on it, it was literally like night and day. I felt so refreshed upon waking each morning ...it was glorious. I’d forgotten that I ever felt so good or had energy like that.

I actually cried when I first found out I had to use a CPAP mask. Would my husband be grossed out that I would look like some sort of head geared freak each night? Would I ever feel normal? Every night I had to do this? Gah! But guess what...CPAP has changed my life and energy level for the better. I’m feeling so good that I’m never, EVER going to be without it—happily so. (And my husband doesn’t care a bit. In fact he’s super supportive and thrilled I’ve got energy again) It’s been absolutely life changing for me. It doesn’t always work so quickly for everyone, I was lucky I felt better so quickly, but with adjustments and the great folks here who are so knowledgeable and helpful, you can get it all sorted out. You’re on the right track.

[Okie bipap]

Welcome to the forum. If you are worried you may not sleep enough during your next sleep study, ask you doctor to prescribe a sleeping aid for you. My sleep doctor prescribed two Ambien for me to take during my sleep studies. My first night was a split study, and my second night was a bi-level titration study. I have been using a machine for almost four years, and my wife has had hers for a little over two years. The hardest part for many people is finding a mask that works for them. Most of us have had sleep apnea for several years before we are finally diagnosed. I was first diagosed in 1996 or 97. At that time, I opted to have surgery instead of going on a CPAP machine. I had a badly deviated septum and enlarged turbinates. The surgery appeared to correct many of my symptoms, but I doubt it really cured me. When I was in the hospital in 2014, the nurses noticed my blood oxygen would drop a lot when I slept. As a result, the doctor put me on supplemental oxygen while sleeping until I could get tested and start using a machine. I managed to go 18 years without a machine, I am sure you will be OK until you get your second sleep study. Once you have the study, you can expect a delay until your insurance approves your machine. The best advice I can give you right now is to relax and not worry about what will happen between now and when you get your machine. By the way, I am over weight and have been on high blood pressure medicine for almost twenty years.

[TropicalDiver]

Can anyone offer help? How effective is treatment in keeping me alive? Will I feel better? Will it help me lose weight and reduce my risks? I'm only 33 and I want to live for a lot longer. Not to mention I want to start a family and I'm afraid I'll die trying heh.

Thanks...

Rose

Sorting through the issues a bit. Yes, it is possible for you to become healthier! Treating the apnea will be very beneficial -- but won't address all of the issues.

First, I would also suggest a complete physical. If it was me, I would focus initially on blood work (including at least lipids, A1C, and liver/kidney functions) and a solid physical exam. Follow doctor advice from there.

I am always cautious when someone ends blood pressure figures with "-ish". The ish often means it is a bit higher than the stated number. I might suggest regular checks using a home machine. It is to your advantage to be completely honest with yourself and your providers. If your BP floats between 85 and 92, say that.

On to the apnea. Yes, successfully treating apnea will reduce your apnea related risks. That means a few things:
a) Consistently using the device every time you sleep, and for the whole night. (I would posit that part of the night is better than none of the night while all of the night is way better than some of the night).
b) Getting the treatment dialed in (lots of good discussion here about that).

Will you feel better? Most people do -- after a period of adapting to the treatment. I felt worse for a few days-- but after that I felt way better. More energy. Less sleepy. Oddly enough, I felt like my vision was sharper than before. I was more rested after four hours than before with eight hours.

Good luck. (I am not a medical provider, just someone with an AHI of 85 prior to treatment ...)

[WinchesterFan86]

Thanks for all your replies guys! Definitely makes me feel a lot better.

I think owning up to my issues is going to help. Regarding blood pressure I honestly can't remember exact numbers so that's why I said ish lol. I'm going to get a home monitor and keep a journal.

Regarding a physical it's been a while so I'm going to call the doctor today to book one. I'll let her know I want a full blood workup too. And probably want to make sure my heart isn't too bad yet.

Regarding weight loss, I tried a few years ago and didn't lose significant weight but felt and looked better. Then my mom died and I got married and between those two emotional lows and highs I kinda neglected myself.

I'm glad to know I'll likely be fine until I get my test and my machine. Lol. Maybe I'll even get some counseling to stop this damn anxiety all the time.

Oh and once I get my equipment I will definitely throw it in the signature so yall know what I have.

[zonker]

Oh and once I get my equipment I will definitely throw it in the signature so yall know what I have.

also, when you get your equipment and start your journey, could you please continue this thread? there are folks who think they have to start a new thread for every question they ask. that can get kind of confusing.

at least, it confuses ME!

[WinchesterFan86]

Okay good to know, thanks!

[WinchesterFan86]

Hey, guys. Thanks again for the information so far! I've also been reading the Newbie looking for success stories thread and it's really helping me.

One question. Whenever I get sick, I get SICK. For example, two years ago I had one pink, runny eye and was told I had pink eye and it would go away in a few days with drops. Two weeks later, it had turned into double pink eye, strep throat, cellulitis in my right eye and a blocked tear duct in my right eye. Before that, I'd been sick with a bad chest cold. This year: got sick on March 23rd with a cold and then a sore throat that did not leave for 3 weeks... three doctor visits, strep tests all came back negative but I could not shake the throat pain.

Unrelated to the immune system (or maybe it factors in too), I had a decayed tooth removed last Sunday and it's still soreish and healing. Going to the dentist tomorrow to make sure it's all right.

Then last night, after feeling better for a few days, I was up all night hacking with yet another cold. Today has been miserable, achy, chills, coughing, then hot...

My question I guess is: will the CPAP therapy help my immune system function better? Should I supplement that with diet/exercise and actual supplements? I'm really getting sick and tired of being sick and tired.



Thanks!

[WinchesterFan86]

Any insight into my immune system question? Did I make a mistake in the way I posted it? :S Thanks!