Brand New and Terrified

[guttersnipe]

I've been lurking here for a while, but decided to make a username and post today.

I just finished up two nights of home sleep study (because I have people telling me the symptoms and the in lab is a lot more expensive - my insurance is not the best). I have my follow up with the sleep lab in two weeks where I'm going to find out my diagnosis, and if it is Sleep Apnea (it is) I will walk out with a new robot companion.

I am terrified. I know that it doesn't make sense. I know I have the issue. The fact that a doctor TELLS Me I have the issue doesn't make it more or less true. I just feel like the last part of me that believes I am immortal is being wrenched away from me. What if I can't sleep with this thing? What if it doesn't help?

The last week and a half have been torture. The more I read, the more acutely aware I am of how awful my sleep is. I'm not falling asleep at work or standing up, but I wake up feeling hungover every day. I have bags under my eyes, and I have trouble keeping them open for the first few hours of the day. I sometimes get drowsy behind the wheel. I just thought I hated driving.

Any words of advice or anything in particular I should watch out for/request when they get to sizing/fitting/issuing me a machine? I'm more than a little nervous.

[Cardsfan]

Hi and welcome. The good news is, you will get lots of help here. Be sure to get a copy of your sleep test results and a copy of your prescription to keep for yourself. (It is the law that you are entitiled to those).

You want a machine that is fully data capable - which will help you monitor your treatment. You do not want a machine that only monitors your usage hours.
After you get your results, come back here and we can advise you on what machine would be best.
You can start learning about the machines. The 2 most recommended brands and Resmed and Phillips Respironics.
Resmed's newest machine is the Resmed Airsense 10.
Phillips newest machine is the Dreamstation.
Both of these come in different models, and you only want a machine that is fully data capable and has AUTO mode.

If you have a diagnosis of Central Sleep apnea, you will need a special machine.

Good Luck. You will learn a lot here-- I did.

[SleepyVegas]

Hi There!

I am a lurker too.

I can only add to Cardsfan advice is to get a back-up machine.

For three years I did everything wrong. I had a straight cpap (F&P Icon) No data, no back up, and over this past new years while traveling, it all went to hell. Icon died, I had no back up.

[BlackSpinner]

You can do it.

It will help - maybe not immediately (It might have to do some renovations first) but one day you will turn around and have your sense of immortality back along with your robot company who loves you unconditionally.

[carbonman]

Any words of advice or anything in particular I should watch out for I'm more than a little nervous.

Believe it or not, this is a wake up call (no pun intended)
to take charge of and change your life.

In this cpap process, you are going to discover things about yourself
that you had no idea existed. You are going to discover strength
and courage and abilities you did not know you had.
Dig deep.

This is not about them or they, docs or DMEs,
it's not just about blowing air up your nose........
it's about you.

Read everything here, get books from the library, get educated.
Try stuff. If it does not work, try more stuff. Be creative.
No fear. YOU are going to make things better.
Believe.
Go the distance.

[spmccord]

The Encyclopedia Galactica defines a robot as a mechanical apparatus designed to do the work of a man. The marketing division of the Sirius Cybernetics Corporation defines a robot as "Your Plastic Pal Who's Fun to Be With."

The Hitchhiker's Guide to the Galaxy defines the marketing division of the Sirius Cybernetics Corporation as "a bunch of mindless jerks who'll be the first against the wall when the revolution comes," with a footnote to the effect that the editors would welcome applications from anyone interested in taking over the post of robotics correspondent.

Curiously enough, an edition of the Encyclopedia Galactica that had the good fortune to fall through a time warp from a thousand years in the future defined the marketing division of the Sirius Cybernetics Corporation as "a bunch of mindless jerks who were the first against the wall when the revolution came."





Have patience. it's hard to unlearn years of sleeping one way. It took me about 6 months to get the hang of things. I still have good days and bad days, but it's all helping keep you alive!



I call my mask "the alien".

[guttersnipe]

Thanks for all the responses. I really appreciate it.

I used to exercise and run and be happy. My mom passed away in 2012 and I let everything go. That's when the bad sleeping started. People have been telling me for years that I snore like a freight train and they are afraid I'm dying in my sleep. (My job sends me on travel 1-3 times a month and I share a room with people.) I've spent more on earplugs for coworkers than I care to count.

I ballooned up to 310 lbs on my 5'10 frame, and I'm down to the 290 range now. I'm hoping that the therapy will help me get some energy back and help me push the rest of the way to get my weight back down and get back into an active lifestyle that I really miss. Now it's being sleepy all day, heartburn, weight I can't seem to cut, depression over not sleeping - and the final straw was that the woman I am dating now can't sleep in the same bed with me. We'll spend a great day/night together and then split up to bedroom/couch for sleep. That was the final straw, and the reason I went to the doctor in the first place.

I hope this is the first step in a good direction for me.

[70sSanO]

You can do this. If you think about it, the half-asleep immortality you may feel you are giving up, is probably not how you pictured immortality to be anyway.

I've been at it for almost 15 years. To be honest, it has been so long that I would have a tough time sleeping without the machine. When I first started there was very little online; the bulletin boards of those days had a little information but were nothing like this site. But I actually bought my first machine online back in 2001.

As others have mentioned, you need to take responsibility for your treatment. And getting a machine that gives you clinical data is really important.

Follow the advice others have given above and get all the necessary information before you feel whisked away to some Durable Medical Equipment (DME) supplier and end up with a box of stuff and have no clue what you got.

Nobody would walk into a car dealership and just take whatever they gave them... "I didn't really want a 2-star crash rating that doesn't have any gauges (data), but that's what they recommended. I wish I knew how fast I am going and when I'm going to run out of gas... oh well. At least it has a clock"

Find out what you insurance pays and what they will pay if you buy online or if you have to go to someone in their plan.

There used to be a blog by janknitz that I can't find that talked about what you need to know before you go to a DME. It is a few years old but you can google it.

Good luck!

John

[GettingBetter]

Hi GutterSnipe,

I'm linking an article that explains the correlation between lack of sleep and weight gain. I like the article because of this one quote: “Sleep is that golden chain that ties health and our bodies together.” So true!

Good for you for deciding to take care of yourself by seeking treatment. Everyone has their own path, but tenacity and a strong sense of self care will prevail.

Here's that article. http://totalfitnessmedicine.com/why-lac ... ight-gain/

Have a great Snooze tonight!
GB

[Diane B]

Hi There!
I hope my story will encourage you and take away some fear. I have been using the CPAP mask/machine since the fall - about 4 months now. I have had awesome results - extremely pleased. I went with Vital Aire here in Canada and they let you borrow various masks until you find the one you like. I used the first mask for about a week, and I was not fond of it. I returned it and borrowed mask #2. I loved it, even after the first night...so I stayed with it (it is the one with the little pillows in the nostrils). Previously I was always napping, tired and falling asleep, even at the dinner table. I also would get up to go to the bathroom 2-3 times a night. NOW I never get up to go to the bathroom at night, and I NEVER need a nap. I have not needed a nap since I started using the CPAP mask. Also, I realized that my legs have much more energy, and I attribute that to having more oxygen flowing through my body. It takes at least a good month or more to get used to everything and to realize all the good results of it. My machine tracks each night's results on the website, so I can go on the website and see how I am doing. At the overnight test at the clinic, I stopped breathing 55 times an hour. Now, since using the mask, I stop breathing only .5 to 1 times an hour!! What a dramatic reduction! I know you will have good results - just keep pressing forward until you find the mask most suitable for you. God bless, and keep us informed as to how you are doing - we would love to hear. Diane

[jonny515]

I think it's normal to be afraid of the unknown. Getting info is your friend.

[russatore]

Funny enough ! I and my wife slept in separate bedrooms since we started dating because of unbearable snoring. Then after a few years I finally managed to hook myself to the hose and my life just turned 360 degree around and for the better.
No more hang over, no more eye bags, no more embarrassment when sharing a room with a colleague, no more falling asleep while at the wheels or in a movie theatre, lots more energy and the beauty of waking up in the morning with no hang over no dry throat, no red eyes and feeling rested.

Sticking a hose to your nose to fell asleep doesn't come natural to anyone I guess and we all have gone thru the process of waking up every hour or so or waking up with deep marks on the face or a mask hurting your nostrils or air blowing in your eyes. It takes some time to adjust like anything that changes our habits but this forum will help you tremendously in solving all the twitch and the little problems you may encounter during your journey and in no time you will be in charge of your therapy and soon you will love your machine and the fact that you will not die during your sleep

One thing for me hasn't changed though..... the sleeping in separate bed is soon much more comfortable that we still keep separate rooms and we love it.

Keep it up and soon you will be writing to the next newcomer the positive experience you had taking charge of your life and connecting to the hose.

[flightco]

I've been lurking here for a while, but decided to make a username and post today.

I just finished up two nights of home sleep study (because I have people telling me the symptoms and the in lab is a lot more expensive - my insurance is not the best). I have my follow up with the sleep lab in two weeks where I'm going to find out my diagnosis, and if it is Sleep Apnea (it is) I will walk out with a new robot companion.

I am terrified. I know that it doesn't make sense. I know I have the issue. The fact that a doctor TELLS Me I have the issue doesn't make it more or less true. I just feel like the last part of me that believes I am immortal is being wrenched away from me. What if I can't sleep with this thing? What if it doesn't help?

The last week and a half have been torture. The more I read, the more acutely aware I am of how awful my sleep is. I'm not falling asleep at work or standing up, but I wake up feeling hungover every day. I have bags under my eyes, and I have trouble keeping them open for the first few hours of the day. I sometimes get drowsy behind the wheel. I just thought I hated driving.

Any words of advice or anything in particular I should watch out for/request when they get to sizing/fitting/issuing me a machine? I'm more than a little nervous.

You will get lots of good advice here (and some, well..)

You will hear from folks whose lives have been so changed you will think they actually like sleeping with a Darth Vader mask on every night; I don't think they do. I hate it, I wish I did not need to use it; however, even though I am still getting used to it, still have some bad nights sleep with it I can tell you it has made a tremendous difference in my life.

I am 63 and have a 7 year old (I say that so you can understand that I have other excuses for being tired all the time). Last year I felt so much older because I could not keep up with him for more than a couple minutes and did not feel this was fair to him. His mom and he would run 5ks and I could not run two blocks without feeling like my heart was going to explode. I was having a hard time with cognitive functions at work and just blamed it on being old. I never feel asleep doing tasks but every afternoon around 3PM I wanted to sleep so badly. Then came Cpap.

The first morning I woke up and went to work I felt better (I believe this is not to be expected, YMMV), I had a couple complicated tasks which I had been putting off and was on the verge of being in trouble (not fired, just letting others down and I don't want to do that) but I just felt like they would each take about 8 hours and I could not force myself to start them. I decided to start one, 2.5 hours later they were both completed, turned in and it made me feel fantastic.

We have a trampoline and I would often jump with my son but again, 30 seconds and I felt like my heart was going to blow out the top of my head and I had to sit and watch him. A few days after starting I got on the trampoline with him and wasn't thinking about it but realized I had been jumping for about 10 minutes before I got tired. (there might be something to this). A couple weeks later my wife and son ran a 5k and like always, I was the cheering section but started wondering if I could run the next one with them. The next 5k was a month away so I went out (without telling anyone my plans because I was sure I would fail) and ran the two blocks that a few months earlier felt like it would kill me, I did it, I was winded but not overly so. I set a plan in place to not over train but to see what I could do. Two weeks later I ran 1.7 miles, two days later 2.5; I told my family I was running the next 5k with them (they looked at me like I was crazy). I ran the 5k; my goal to by happy was to complete it in 45 minutes (not much faster than a fast walk). I finished in 33:49 (somewhere around there, cant remember the exact number). Two weeks later I ran another and finished in 32 minutes and some change, only 22 seconds behind my 7 year old and 15 seconds behind my wife.

I am telling you this because Cpap is not fun, it is not like getting a new toy, in my opinion it is a royal PIA. However, when I think of what it has done for my life in such a short time I absolutely believe it is worth the trouble. Everyone's experience is different; yours will be too, but stick with it and I believe you will find that the rewards of feeling better in so many ways far outweigh the PIA. For what it is worth, I am still sleepy a lot (again, not overpowering, just less awake than I would like to be) but I am sure as I work through this that will improve with it.

[flightco]

Funny enough ! I and my wife slept in separate bedrooms since we started dating because of unbearable snoring. Then after a few years I finally managed to hook myself to the hose and my life just turned 360 degree around and for the better.
No more hang over, no more eye bags, no more embarrassment when sharing a room with a colleague, no more falling asleep while at the wheels or in a movie theatre, lots more energy and the beauty of waking up in the morning with no hang over no dry throat, no red eyes and feeling rested.

Sticking a hose to your nose to fell asleep doesn't come natural to anyone I guess and we all have gone thru the process of waking up every hour or so or waking up with deep marks on the face or a mask hurting your nostrils or air blowing in your eyes. It takes some time to adjust like anything that changes our habits but this forum will help you tremendously in solving all the twitch and the little problems you may encounter during your journey and in no time you will be in charge of your therapy and soon you will love your machine and the fact that you will not die during your sleep

One thing for me hasn't changed though..... the sleeping in separate bed is soon much more comfortable that we still keep separate rooms and we love it.

Keep it up and soon you will be writing to the next newcomer the positive experience you had taking charge of your life and connecting to the hose.

You speak of sharing a room with a colleague, in my company there is another benefit to Cpap, I am not sure what the reason is, but if you are on Cpap you get your own room at meetings. Something HR decided after someone took them to task about medical privacy, etc.

[ChicagoGranny]

Terrified

Untreated sleep apnea is a major cause of anxiety. See short article http://doctorstevenpark.com/how-sleep-a ... ic-attacks

Get your CPAP machine, learn from the forum how to get the process working well, and it is almost certain your anxiety will significantly improve.

Note: Don't take delivery of a machine until you are 100% sure it is a model that senior members here would use for their own therapy. If you go to pick up a machine and become unsure of what they are giving you, don't be afraid to walk out without it and come back here and ask questions.