Newbie - Needs some straight talk... NOW!

[swezey]

First let me say - what a great forum this looks like. I definitely will be referring here often and it looks like a great community of helpful folks. I just hope I found you in time. Now my story.... "I was born a poor black child..." OK that's from The Jerk with Steve Martin so I still haven't totally lost my sense of humour. Here's the real deal:

I'm 39 and was recently diagnosed with what the doctor has called "Severe OSA" (AHI = 62). My wife says I have had it for years, probably 8 or 10 but I learned to live with the symptoms until they got so bad that driving put me in jeopardy every day and falling asleep in meetings put my job in jeopardy. I am about 5'7" and just around 200 lbs. so I could stand to lose some weight. I do not have any equipment yet due to beauracratic red tape BS with insurance, referrals, etc. etc. Hopefully I'll have something in the next week or two. I'll update my profile when I get something but I'm thinking MSeries REMstar Auto A-Flex APAP + Heated Humidifier with Comfort Gel mask since it looks as though I'm buying the darn thing myself anyways.

Now here are my two questions:

1) I'm quite certain that the OSA has extremely sapped my energy. The sleep technician said I was getting the equivalent of three hours of sleep in the 8 hours I was in the study and I believe her. I feel like it. For how long this has been like this I can't really say. But I do know that for years, I have felt sluggish and not like doing anything. Just getting to work on time has been a chore. I've let household projects go, stopped going out with friends, lost interest in my wife, I pretty much work and sleep. I've gotten to the point where I am so depressed and basically feel like a big loser. I used to be super active, always doing things. Now all I want to do is go to bed but of course as long as I stay in bed it doesn't help. I sleep almost the entire weekend now... I've let everything go and don't care about anything except keeping my job (and sometimes barely that!) and am so depressed I sometimes wonder what is the point of going on...??? I'm hoping other people have felt this way before getting treated and can tell me that as their treatment proceeded, the fog lifts and you feel like living again because honestly, at this point, I don't. Is this a symptom of severe OSA or do I have something else going on also that I need to look into?

2) Lately, I can't remember anything... I mean anything! Where I left the car, what I brought to work for lunch, what my next appointment is. I can't concentrate to write a proposal or even get through my EMAIL. First, you can imagine this is extremely disconcerting, but also trying to hide this at work is getting harder and harder. I don't really know if my boss will take me seriously if I say I have OSA and it's causing this behaviour. (Or is it? Again do I have something else going on!!??) But my main question is again, has anyone else had this and does it improve with treatment? Or have I basically killed my brain for good? If so, I probably need to change careers because I'm in a high profile position which demands I be sharp and on the ball all the time. Again, I really need some straight advice here. I just want to get this fixed and back to normal or make what changes in my life I need. BTW, it took me about 20 minutes to write this having to stop, go back, reread it, etc. Jeeezzzz...

Anyway, thanks in advance for your kind help and my best wishes to everyone on here struggling with this disease or whatever you want to call it. It really is a bitch...

[jules]

You are probably correct in saying it is affecting your energy and memory. These are pretty common symptoms that will go away in time for many. How long it will take varies.

Did you have the sleep study with the cpap machine yet?

Do you have a prescription in hand for a machine yet?

If you have a prescription in hand, and are going to pay out of pocket, then check online dealers such as cpap.com and get started on this process.

If you are planning to use insurance, then you got to follow their rules and games. Not all insurance will accept a receipt from an online dealer and some require you use their in network providers so you got to do your homework first. The contract your insurance has with the DME (med supply place) may be a very strong influence on your ability to get an APAP so make sure if you use a local DME the script specifies in as much detail as possible what machine.

[carbonman]

swezey, I don't need to quote anything from your story, because it is my story.

Tomorrow night will be my 2 month anniversary on the hose.
For me, it has not happened over night.....but it is happening.
It was the morning of the 4th day, that I got to work and I knew something was different.
Since then, it gets a little better everyday.
The fog is lifting, the depression is being replaced w/hope.
My energy is returning. I am returning to the person I was 6-8 years ago.
My brain and body are coming back to life.
I am a cyclist and I can feel it and see it as I get stronger and can recover after each ride.

If I wasn't seeing, feeling and living this recovery, I don't know that I would
believe someone telling me my story.

Get your equipment ASAP.
Get educated.
Become your own best therapist.
Embrace the mask.
Be patient w/yourself.

This is your life.

I always want to say Good luck, but it's not about luck,
it's about you taking charge of your therapy,
putting that mask on everynight,
and returning to the person you used to be.

[6PtStar]

I think you will find that your story is very close to most of the people on this board. The only problem is it takes time. Some respond to CPAP treatment better and sooner than others. It usually takes several months to get back to feeling better. I took almost a year before I could really say I really felt normal but I did feel better every day. Yes, I put myself in danger every time I got behind the wheel. Fell asleep sitting behind my desk at the office I really figured I would get fired before I could retire.

Making it work can be very frustrating. Sleeping with a mask straped to your face is not a natural thing but one day you will wake and say I can no longer sleep with out the machine. Sorry about having to buy the equipment yourself. Many of us find that it is easier to buy it ourselves that it is to fight the insurance system. Buying on line (cpap.com) is a good place and a lot cheeper than from a local supplier. Be sure and ask for the best price since Respironics just made them start MAP pricing. The Auto with A-Flex is the best machine in my opinion. If you go that route be sure and get the software (Encore Viewer) and the card reader so you can check your data and keep your therapy on track.

Jerry

[mindy]

What the others have said ... my OSA isn't severe but I have noticed a big difference in my energy levels, my memory and my ability to work. I've always had depressions and they haven't disappeared with treatment but I seem to be able to manage them better. The morning after my titration study I noticed my brain fuzz was gone! Then it took several months before my energy started coming back. I can now work a whole week without feeling like something the cat dragged in. And I still have some energy left Friday evening.

If you can, I'd suggest holding off on making any decisions about your job or other big changes until you see how you feel after several months "on the hose".

Best of luck and get that equipment as soon as you possibly can!

Mindy

[alnhwrd]

Welcome to the forum! A great many people, myself included, have been exactly where you are. Click on the link for a great article on the topic of progressing from the "Walking Dead" state.

our-collective-cpap-wisdom/CPAP-stages- ... -good.html

Speaking for myself, I was literally falling asleep at the wheel while driving, sleeping 14 hours, getting up and then napping for another two in front of the TV, falling asleep every time I went to the movies, barely able to function at work, having to find a place at work to catch a quick catnap to get through the shift, and much more. So I can very definetly empathize with your situation.

Does it get better? Yes it does. CPAP therapy is a proven treatment for simple Obstructive Sleep Apnea with millions of people using it successfully. In order for it to work, you have to be correctly diagnosed, correctly titrated, and correctly treated. Your sleep study or PSG (polysomnograph) confirmed your diagnosis and should also have diagnosed or eliminated many other sleep problems. If you did what is called a split night study, or if you have had a second sleep study, then you should have been titrated, which means that the techs that were monitoring you while you where sleeping would have hooked you up to a CPAP and found the pressure that makes many, most or all of your apneas go away. If they did, and you had a few hours of undisturbed sleep for the first time in years, as I did, you are chomping at the bit to get your equipment and get started. It sounds like you are getting a good machine, many on this board have it and just love. So you are almost there.

Effective treatment has some challenges. Getting the right mask, in the right size, that you can even just tolerate is problematic for many people. Often medical equipment suppliers, known as DME's have limited offerings and offer low levels of supports to clients. Managing the six feet of hose, conquering excess moisture in the hose and mask from the humidifier (known as rainout) dealing with leaks, learning to sleep with the disruption to the sleep environment that a Cpap can cause, all can become stumbling blocks that make people decide it isn't worth it. This is why, sadly, about half of the people who start cpap therapy don't follow through with it. You must decide from the start that you are going to make this work for you. It does make a difference, and it is worth it. In time you learn to tolerate and even get comfortable with the treatment. It's good that you are learning about it now. Keep coming back to the site and if you have any problems, or even if you just need to vent, don't hesitate to bring them here. Jump into the newbie chat on Monday nights if you like.

Best of luck to you.

[Goofproof]

All you need is you script and Cpap.com, the sooner you get up and running the faster things go your way. Sometimes it helps for the workplace not to get involved. I'd also get a FF mask, is's handy to have and if you mouthbreath, you don't get treatment with a nasal mask easy. A ff mmask works better for congestion also. Jim

[kteague]

You're on the right track, wanting a data capable machine and ready to make this work. Getting things right early on can only expedite recovery. Mine was delayed by wrong pressure, lack of diligence, no data to troubleshoot, and other medical problems. Two and a half years ago I didn't know how one could possibly continue to live as bad as I felt, or why I should even want to. Your story could be mine too, except I did push it till I was no longer able to perform my work duties and a host of collateral health damage was done.

Tonight I just came from a gathering of old friends and ran into someone I served on a board with during that time before I had to resign. She said she was surprised at how alive I looked, that my eyes had life and spark in them again. While my life still has challenges that cpap cannot fix, I am no longer among the living dead. Cpap treatment has given my body and brain what it needs to be able to deal with all the other stuff. More and more I think about how good life looks rather than how close to death I must be. My only regret is not dealing with my sleep apnea before I was in crisis.

As far as your job goes, it sure would be nice if you were able to take a little time off. If not, at least allow yourself when you get the equipment some extra sleep time. It's just my opinion, but I think recovery is delayed when people start on the machine and think 6 or 7 hours is enough to keep on keepin on. That's not even enough for maintenance, much less recovery. Your body has been through years of trauma - allow it to heal. Your body will know when it's had enough of playing catch-up when you wake up one day with no desire to go back to sleep.

Until you get your equipment, it might help to elevate the head of your bed a few inches (not just sleep on more pillows). Also, stay off your back. Many (but not all) have worse apnea on their back.

Get that machine soon. And don't give up on yourself and that job. Everyone varies. Some have limited recovery, but they/we usually have other health issues. Some get everything back. Some are better than before with their new found health focus. One guy who used to be a regular here bounced back and beyond after his heart attack to running in races and mountain biking. Expect the best, then do your best to reach it.

[marshaeb]

Now my story.... "I was born a poor black child..." OK that's from The Jerk with Steve Martin so I still haven't totally lost my sense of humour.

I do not have any equipment yet due to beauracratic red tape BS with insurance, referrals, etc. etc.....

I'll update my profile when I get something but I'm thinking MSeries REMstar Auto A-Flex APAP + Heated Humidifier with Comfort Gel mask since it looks as though I'm buying the darn thing myself anyways.

Oh, yeah, you are definitely in the right place, and I am so sure you are going to fit right in like you've been here for years.

You have described the past few years of my life exactly (well, except for the wife thing), and from what I've read here, the lives of so many others. Take heart. You sound like you're very motivated to do what it takes to beat this thing, and as long as you do that, you will. I've been hanging out here for the past month and have only been on the hose for 12 days. I can't say I'm feeling significantly better, but my hope index went through the ceiling as I read the threads here. Knowing that you don't have to go through this alone AND discovering there are people here who will gladly answer questions, teach you to interpret data, etc. and sometimes just be silly is tremendously empowering. This is a group that provides every type of support, from educating we newbies to helping shore each other up emotionally.

Welcome to the forum!! Hang on to that sense of humor.

Marsha

[swezey]

WOW WOW WOW!! THANK YOU THANK YOU THANK YOU!! I just logged back on after watching the Steelers pull out a close one over the Vikes (I actually stayed awake to the end!) to see if anyone had read my post yet - I COULDN'T BELIEVE IT - 8 REPLIES! I literally had tears in my eyes! What a great bunch of people but the best part was finally having some HOPE that things WILL get better and I will not feel this way the rest of my life....

To answer a few questions, I DID have the second sleep study done and they prescribed a "12" (not sure of the units PSI? mm of Hg??). I STILL have not gotten the results of the FIRST study but the same tech did both and she asked me if I had my first test results yet. When I told her "no", she said well I'll tell you a little (I guess they aren't supposed to say). I had an average of 62 SA's an hour, woke up an avg of 37 times an hour, my heart rate never went BELOW 77 BPM and my oxygen level got down to 66%. I'm not exactly sure how to interpret all that yet but it sounds pretty bad to me. She also said I slept a total of 182 minutes all night.

I DO have my prescription finally! It is for a CPAP at pressure "12" as I said above with "inline heated humidification" and a Respironics ComfortGel mask and head gear "size medium". As I mentioned, I'll probably buy this myself as Aetna wants me to use their "preferred provider" (who they probably own) who wants to charge my $250.00 upfront PLUS $60 a month for a year for a standard CPAP with no exhalation relief or auto adjusting and no way for me to view the data that is recorded overnight. I think I can get the ResMed APAP with A-Flex for less than this! Which brings me to a new question - does anyone know how to get the Encore Pro software?? I can get the card reader (I'm in the computer biz) but it's the software I can't seem to find.... Any thoughts on this would be great as I definitely want to monitor my own progress.

Anyway, thanks to everyone who has replied and to anyone else who decides to chime in!! I REALLY appreciate it and I am more motivated than ever before to finally get my life back!! THANK YOU ALL!!

[jules]

Encore Viewer is for sale at cpap.com and other online dealers. The card reader needs to be a special one - Mako DT3500. Encore Viewer allow you to look at your nightly data but it doesn't save all the data in a database and it does not allow you to change the pressure with the card.

You might be given information about obtaining Encore Pro via pm on this site but it is no longer being sold except for isolated copies on cpapauction.com.

You can buy an APAP at cpap.com with a straight cpap script, at least I did several years ago. Check their FAQ on what they want on a prescription. For the humidifier and mask, no script is needed. Again remember, this is merchandise for cash or "plastic money" and insurance is out of that transaction. Be sure to call before you order to check the "real" price and if you find the software/reader cheaper, ask for a price match.

It sounds like you are ready to take the step and order. You can get expedited shipping too so you could have a machine in hand by mid week. Cpap.com is located in Texas.

[goose]

Ask the doc to rewrite the script for an "Auto CPAP w/ exhale relief, heated humidifier, data capable, w/software and card reader". With something written similar to that you can get any auto machine -- Respironics, Resmed, or whatever.
Data capable is very important to controlling your own treatment as it will give you the numbers you need to determine whether or not your pressure, mask etc., is working properly.
The ComfortGel mask isn't a bad starter mask -- I've got two of them and have been using them in rotation with a Headrest and once in a while a NA II for just over a year. I do have a full face mask but since I have facial hair it doesn't seal very well but I need it once in a blue moon when my allergies have me so congested that I can't use my nose for anything.
If you find you breathe through your mouth you'll need to deal with that problem. Full Face mask, Polident strips to seal your lips together (with a strap around your cheeks to prevent the "blowfish" effect), or using tape to keep your mouth closed. Another way is a chin strap, but I haven't found many that work very well keeping your mouth shut.

Read, read, read. At the top of each page you'll find the yellow lightbulb (our collective wisdom) and a new users section (we used to have a red balloon that was CPAP FAQ and hope it returns soon, but it's not there for now). This site has more information than you'll ever be able to absorb, but if you have questions about the condition, treatment, machines, masks or whatever, ask them here and as you have already seen, you will get multiple answers....Keep in mind that what you are getting are opinions!!! Many are very learned opinions, but opinions none the less!!!!
You need to educate yourself to the max, so that you know which opinions fit your "style".....

And, oh by the way, Welcome aboard. You have found the best place to find information about SA!!!!!!



It does get better, but be patient. Don't expect miracles -- you didn't get here overnight, so the fix won't probably happen overnight. Take each day as it comes and be happy with little bits. Before you know it, you'll notice a marked improvement. It's been 14 months for me and I'm still waiting for that "miracle", but I also know that I'm feeling better every day, so I'm happy with that....

Take care -- and let us know how you're doing!!!!
cheers
goose

[Goofproof]

I wish either Resmed or Remstar would change their company name, so people would know what machine manufacturer they wanted to use, and the features of their machine. Probably won't happen, and if it did they would name it F & P star or something simular. Jim

Makes it hard with all the Resmed "M"eries with A-Flex hybrids for sale. At least they are self extinglishing.

[Guest]

You saw a doctor to get a sleep test. You should have mentioned this. THIS FORUM IS NOT A PLACE TO GET MEDICAL ADVICE... NOW! It's a great place to get tips on using something like a CPAP. See a doctor. You sound very depressed. Why you didn't tell him/her that when you saw them I don't know.

In the meantime, you said you have some weight to lose. Start exercising. That will make you feel better. Do a brisk hour of walking 5 days per week and see your doctor.

[echo]

swezey - you would be wise to take advice from "guests" with a grain of salt. Of course you know this site is not for medical advice , you will have read at the bottom of each page the disclaimer

The information provided on this site is not intended nor recommended
as a substitute for professional medical advice.

That said of course you can take everything WE say with a grain of salt too

In the end this is YOUR therapy and YOUR health. You HAVE to do whatever it takes to make the therapy work for YOU. If you have a good doc, then work with him/her... if you don't then by all means do try to find a better one. But if in the end you end up on your own, well, you won't be the first one on this forum not depending on their sleep doc For example, Mine just said "use a pressure between 7 to 10 and go by how you feel, give us a call if you need help changing the pressure." In the end I found that 10.5 worked for me! They even refused to give me a Full face mask when I told them I was mouth breathing and congested and sick. They said "oh the effects of CPAP last for a few days so you're OK not to use it for a few days "

I won't even dignify the remarks from "guest" on exercise and losing weight, when it is obvious that you don't even have energy to stay up to watch the footy (Edit: not that it is BAD advice by any means. If you CAN take a few walks during the week, then it WILL help!)

BTW, your GP should have the results of your sleep study. Try to get it from him/her. It is YOUR medical data and under HIPAA you have a RIGHT to that information - it cannot be a secret for you.
You should actually contact your Sleep Lab - send a certified letter, and request firmly but politely that you would like all your medical records from the sleep studies, including the graphs and other data, and not just the dictated report. Also get a copy of your "prescription" , what some call a script, from the sleep doc.

Here is a great post from Slinky to read on obtaining your sleep study results, obtaining the machine you want, working with insurance and sleep docs and DME's:
viewtopic.php?f=1&t=33168&p=281488&

Welcome to the forum!!!!!!!!!!!!!!!! You are NOT alone in this !!!