Newbie--Scared, Overwhelmed & waiting.....

To begin with, thank you so much for having this website....I have a feeling it is going to become my "go to" place.

I began with a new doctor about 6 weeks ago to address mild asthma and my unstable blood pressure issues. After the initial introductory conversation & exam...he said I had sleep apnea. I was stunned that he said that after spending less than 30 minutes with me but when he ran down the symptoms, I responded yes, to most. He said to control my blood pressure, I will need to address the sleep apnea. It seems many of the symptoms I contributed to high blood pressure are actually symptoms of sleep apnea. I am more stunned that I've gotten to be my age and no doctor has questioned me about this before. I can now look back and see that I've probably had sleep apnea for several years. I was devastated when my former primary doc of 25yrs decided to retire however I'm beginning to see that it was the best thing for me.

I've been reading all over the internet & at this website and I think I'm now on "information overload". I love reading the "Success Stories", here....they truly give me hope. By the time I arrive for my sleep study, I think I will have all the CPAP Definitions memorized and will know a great deal about various pieces of equipment even though I've never actually seen a CPAP machine.
OK, knowledge is power, right? Anyway, I hope to ease my fears by learning as much as I can before I arrive for the sleep study.

Is my behavior normal or am I just being crazy & obsessive? My hubby thinks I need to just calm down and take this "one step at a time". Bah....I haven't gotten around to telling him everything I've learned and one thing is, as loud as he snores....he probably has sleep apnea, too. I'm making him an appt. to see my new doctor.

Taz

Welcome to the forum.

Yeah, it's normal to go into the "crazy, obsessive thing" when we first figure out what may have been going on all these years and kick ourselves in the butt for not realizing it sooner.
If you end up with a positive diagnosis and get your machine...just wait till you get to the obsessive phase about cleaning your equipment.

And yes, watch hubby back peddle real fast when faced with similar diagnosis. They just aren't nearly so likely to pooh pooh everything about it when it comes to them.

Take your time with your reading. Some stuff you may have to read more than once. I know that I sure did because not everything made total sense at the first reading.
You may have already seen these blogs but just in case...here's more reading
From forum member Janknitz
http://maskarrayed.wordpress.com/
http://maskarrayed.wordpress.com/what-y ... me-part-i/

From forum member Robysue
http://adventures-in-hosehead-land.blog ... -with.html

OK, knowledge is power, right?

Your job at the sleep study is simply to sleep. Dumb, ignorant people usually sleep better.

Don't overdo the education bit and get yourself in a tizzy where you don't sleep much at the study.

The critical point for many people comes when they get a prescription for a CPAP. You want to make sure you get the correct machine for your diagnosis because it might be impossible to get insurance to pay for a second machine.

Don't take delivery of a machine before some forum members review your diagnosis and prescription and advise you on what machines are acceptable.

Relax for now.

Hi Pugsy,

Thanks for the welcome and the blogs. Oh my goodness, I had no idea selecting the DME could possibly become a struggle. I'm not looking forward to this and I think I will discuss this with my insurance provider before the sleep study.

Hi DeadlySleep,

Thanks for the advice however I'm afraid I'm already getting myself in a tizzy. I have bad bouts of insomnia and I'm afraid the night of the sleep study, I'll be wide awake. My doctor has told me not to worry about it....the sleep study techs will manage. Now, I'm getting really concerned about the DME. The sleep center I'll be going to is a "one stop shop"....they do the sleep study and sell the DME & supplies. I wonder if I'll be expected to select & purchase the DME, that same day?

Taz

Bring your favorite pillow and "teddy bear". Avoid making a machine decision at the sleep study.

Calm down! There are many DME's who are fine and helpful, it's just that some people have had problems (or may not have always understood things well) so the blog is to help sort things out for them, but don't go in looking for trouble. In any case, even if you run into something or other, it can almost always be corrected - don't forget you pay their salaries if only indirectly and if they have 'attitude', bring on your own.

You might want to ask about taking just one Ambien prior to sleep (well a bit earlier) for your study if you really believe you won't sleep at all... it's quite common to do that and shouldn't affect the study. And if in the a.m. you think you haven't slept a wink (also very common), don't fuss either, because in fact you most likely have slept a fair amount but just don't remember doing it - happens all the time.

This is a GOOD thing that's (finally) happening, nothing to be afraid of, and all involved know their lines (whether or not they deliver them well ).

LSAT wrote: Avoid making a machine decision at the sleep study.

+1

Although at a later time the doctor probably has to review the study and write the prescription.

DeadlySleep wrote:
Don't take delivery of a machine before some forum members review your diagnosis and prescription and advise you on what machines are acceptable.

Perfect idea.

It's good that you're learning all about it now. I didn't do that and got stuck with a machine I hated. So, out of pocket for a second machine. It made all the difference but I still hate using it. I hate the machine, and the mask, and the air and the diagnoses etc. etc. LOL. You seem like a pretty positive person so you should do well. Good luck and stay obsessive/excited about it.

Hi Taz & welcome to the forum.

I sure wished I'd had a resource like this 14 years ago. You can never learn too much.

Get in your mind which machine you want, I'd suggest to pick from the ResMed or Philips Respironics, these are the two popular companies and read Janknitz blog info to help in choosing the machine you want. I only want to add that I had a bad experience with the F&P Icon. It looks sleek, great on the nightstand & all that, but its data leaves a lot to be desired.

I wound up getting a PR S1 560 a few months after getting the Icon & I'm much happier with my therapy now.

Good luck with the sleep study & you will find everyone here helpful.

Jen

I agree with what the others have said, Just focus on sleeping well for the sleep study. You will have time after the sleep study to learn about machines and dealing with DME's, once you know if you really need to or not. Don't make any snap decisions about CPAP even if they tell you your test was so bad you're going to drop dead if you don't go on CPAP immediately (they almost NEVER say that, except in my case ).

Know that you are NOT obligated to buy your equipment and supplies from the sleep lab DME unless it's the only thing your insurance covers (and not even then, if you're resourceful or have the money to pay for your own equipment). You've lived with this for a long time, so if you need to get a CPAP and mask, you can take your time, do your homework, and find the right DME and equipment for your needs. That may or may not be the one affiliated with the sleep lab (it often is NOT, because they get lazy with their "captive audience" and might be more difficult to deal with).

Deep breaths, it will all work out.

Julie wrote: You might want to ask about taking just one Ambien prior to sleep (well a bit earlier) for your study if you really believe you won't sleep at all... it's quite common to do that and shouldn't affect the study. And if in the a.m. you think you haven't slept a wink (also very common), don't fuss either, because in fact you most likely have slept a fair amount but just don't remember doing it - happens all the time.

).

Hi Taz,

This is great advise from Julie! I took my regular meds for sleep when I had my study and also felt I barely slept but found out I had slept quite a bit. You'll do fine. Good luck and welcome!

Welcome to the forum. I agree with jencat824 that this is something I wish was around when I first started on CPAP.

Like you, my doctor discovered my sleep apnea based on my blood pressure. He had me take it a few times during the day and it was the highest when I first woke up. So off to the sleep lab.

FWIW, over the years I have gotten so used to using my machine that it is just second nature to me. The best advice I can give you is to stay positive and keep a good attitude. Don't worry about facing a DME. Try to get a few good referrals from the lab and when you go to the DME, if you are not certain about something, get the information and tell them that you have a few friends with sleep apnea that you want to run the options by. Then post your concerns here. You can also find out if your insurance will let you buy online. For me that turned out to be the easiest route to go.

John

Thanks, Everyone for the kind "welcomes" and support, I really appreciate it.

You might want to ask about taking just one Ambien prior to sleep (well a bit earlier) for your study if you really believe you won't sleep at all... it's quite common to do that and shouldn't affect the study. And if in the a.m. you think you haven't slept a wink (also very common), don't fuss either, because in fact you most likely have slept a fair amount but just don't remember doing it - happens all the time.

Julie & Jaye8898 ,

Ambien & /or sleeping pills are not an option for me. I've been through that nightmare and will never touch them, again. Now, I occasionally use Melatonin or the various sleep herbs and hope for the best. Insomnia has been an issue for me for the past 20yrs and I'm really concerned about using the CPAP because of that issue.

Janknitz wrote:I agree with what the others have said, Just focus on sleeping well for the sleep study. You will have time after the sleep study to learn about machines and dealing with DME's, once you know if you really need to or not. Don't make any snap decisions about CPAP even if they tell you your test was so bad you're going to drop dead if you don't go on CPAP immediately (they almost NEVER say that, except in my case ).

Know that you are NOT obligated to buy your equipment and supplies from the sleep lab DME unless it's the only thing your insurance covers (and not even then, if you're resourceful or have the money to pay for your own equipment). You've lived with this for a long time, so if you need to get a CPAP and mask, you can take your time, do your homework, and find the right DME and equipment for your needs. That may or may not be the one affiliated with the sleep lab (it often is NOT, because they get lazy with their "captive audience" and might be more difficult to deal with).

Deep breaths, it will all work out.

Hi Janknitz,

Thank you for your wonderful blogs, I'm printing those out and keeping them with me. I'm just so impressed with all the knowledge on this board and so grateful I found this site.

jencat824 wrote:Hi Taz & welcome to the forum.

I sure wished I'd had a resource like this 14 years ago. You can never learn too much.

Get in your mind which machine you want, I'd suggest to pick from the ResMed or Philips Respironics, these are the two popular companies and read Janknitz blog info to help in choosing the machine you want. I only want to add that I had a bad experience with the F&P Icon. It looks sleek, great on the nightstand & all that, but its data leaves a lot to be desired.

I wound up getting a PR S1 560 a few months after getting the Icon & I'm much happier with my therapy now.

Good luck with the sleep study & you will find everyone here helpful.

Jen

Hi Jen,

Thank you for the information. I've got a notebook and I'm taking many notes. I just cannot believe how much I'm learning.

poorflick wrote:It's good that you're learning all about it now. I didn't do that and got stuck with a machine I hated. So, out of pocket for a second machine. It made all the difference but I still hate using it. I hate the machine, and the mask, and the air and the diagnoses etc. etc. LOL. You seem like a pretty positive person so you should do well. Good luck and stay obsessive/excited about it.

Hi poorflick,

I'm not always so positive....some days it's just crying jags and one big pity party. Yesterday was a good day but today hasn't been as great. I'm trying to be positive and keep telling myself I will become "best friends with my CPAP". I have no other choice because I'm really, really "sick & tired of being sick & tired". I want my life back.




Taz

Taz... you are allowing yourself to get overwhelmed - which most of us did. Looking back, I worried for no reason at all. No, the sleep study isn't the most fun you'll ever have but you'll get through it and you'll be fine! Keep reading and asking questions.

As others have said, wait until you get the results of your sleep study so the veteran members can suggest which machine to get. Don't be pressured into getting one. Also, be sure you try several masks before you decide on one. Always ask if you can return it within 30 days if it doesn't work for you. Some places allow this but some give you a hard time.

One of the most important things to remember, and I still tell myself this many nights, your "medicine" to help you feel less tired is only AIR! Only AIR... not another thing in the air... ONLY AIR! It's not anything to be scared about.

Some people have an easy time adjusting to the "newness"... for others it takes longer. It took me awhile to finally realize how important getting proper oxygen really is. You'll be fine!

You're going to be fine. For the actual sleep study, you don't need to know everything. It's when you get your report and pick a machine that you'll benefit from all the knowledge you can get. The advice you get here is priceless.

I slept poorly during my sleep study, but it was enough for the techs to get their data. Also, they count that drifty stage where your mind wanders as sleep.

This is a premature comment, but if I don't make it, I might forget to. I hated the idea of sleeping with a CPAP machine. I felt negative and angry and I kept telling myself it wasn't fair, I'd look stupid, it would be for the rest of my life, and so on.

I decided I needed an attitude change and when I got my machine, I put the mask and the hose in my lap and decided to love the machine. It felt kind of like adopting a pet you hadn't asked for.

I can honestly tell you that this is one of the best things that ever happened to me. Something so basic as sleeping and getting enough air into your body can be a life changer.