Just Diagnosed with Severe Sleep Apnea

WorriedDaddy wrote:

Physician wrote:Be happy you were diagnosed and be happy treatment is available. My untreated AHI was over 60, and now on CPAP it is 0.0 to 0.3. It's a matter of outlook, but the CPAP is comforting and enjoyable. The only bad part is what to do if/when my machine doesn't work.

Think of all the people out there who are not diagnosed nor treated. Fatigue, irritability, poor concentration, increase risk of serious diseases, etc.

Welcome to this Forum.

Yes very true.

I know my father has it from speaking with my mother. He is one of those guys where he thinks nothing is ever wrong with him. I have been pushing him to get a sleep study done and I think he may comply.

This year has been rough for my family. My sister passed away in April from accidental drug overdose, I have been trying to get custody of her son but the boyfriend is suing me in court even though he's not the dad. Its been one rough road after another. I am just glad I found this site and happy this can be fixed. I want to be fixed. Sitting here with my illness and doing nothing about it is worrisome.

Tonight I will sleep on my side. Last night I slept in a chair upright which was brutal.

Thanks everyone for caring.

As I stated earlier, I'm still waiting for my CPAP also. But as soon as I was diagnosed (about three weeks ago) i started sleeping on my side right after. Although my sleep is still fragmented, I got deep sleep for the first time in a long time just from switching to my side.

KarD786 wrote: As I stated earlier, I'm still waiting for my CPAP also. But as soon as I was diagnosed (about three weeks ago) i started sleeping on my side right after. Although my sleep is still fragmented, I got deep sleep for the first time in a long time just from switching to my side.

Something else I noticed is my slight overbite which causes my throat to get crammed even more. Why can't mouth guards be used to align an overbite at night? This may be something I mention to my doctor.

I read an article that Walmart, CVS, Walgreens, etc., do not sell these type of guards due to FDA restrictions. Basically, the FDA does not want you to correct snoring with a mouth guard due to possible misdiagnose of sleep apnea. But if it helps you breathe...why not?

WorriedDaddy wrote:

KarD786 wrote: As I stated earlier, I'm still waiting for my CPAP also. But as soon as I was diagnosed (about three weeks ago) i started sleeping on my side right after. Although my sleep is still fragmented, I got deep sleep for the first time in a long time just from switching to my side.

Something else I noticed is my slight overbite which causes my throat to get crammed even more. Why can't mouth guards be used to align an overbite at night? This may be something I mention to my doctor.

I read an article that Walmart, CVS, Walgreens, etc., do not sell these type of guards due to FDA restrictions. Basically, the FDA does not want you to correct snoring with a mouth guard due to possible misdiagnose of sleep apnea. But if it helps you breathe...why not?

If your untreated AHI is 60, a mouth guard isn't going to be enough to eliminate apneas, sorry. Nor will Breathe-Right strips.

I fully understand how awful it can be to wait. I think my untreated AHI was around 71 or so. I too was woken up two hours into my sleep study and masked up. I then couldn't believe I had to wait for a machine after that. Please do make sure you get a data-capable machine. Your borrowed Escape won't give you enough information to monitor your treatment effectively.

The good news is that you may be able to reconcile yourself to having a highly treatable condition rather than a "cowardly disease."

as a sidenote, assuming you will want to keep track of your therapy results at home using the information provided here from people who've "been there, done that" and can give guidance, I believe the S9 Escape is NOT a data capable machine. Meaning that, while it WILL provide therapy, it doesn't keep track of what's done, nor can you track your progress, whether forward or backward. So, while it's really nice of a family member to have given it to you, you may want to get a data capable machine...S9 autoset or the like, depending if you're prescribed CPAP, Bilevel, etc. And to me, it sounds like you will want to keep an eye on things, if only so YOU know and feel more comfortable.

In my sleep study my AHI was 84.
With my PAP machine it varies from 0.0-3.0 most nights. Anything under 5.0 is considered normal.

The Escape machine you have is not capable of providing any data beyond how many hours you used it. You will already no that since you will know when you put it on and took it off.

You will need to fight for a Resmed S9 Autoset. That is an auto adjusting data capable machine. That is what I started with and would not accept less. Most insurance companies pay a flat rate for the billing code for a pap machine. The Escape is one of the cheapest available the S9 Autoset is on of the more expensive. Since the DME receives the same payment for which ever they deliver they look to their bottom line and often try to convince you to accept the cheapest/most profitable machine. That is why you MUST read many of the sticky sat the top of these pages before you see the DME or the doctor.

It is possible that your anxiety attacks are a symptom of sleep apnea. When you are sleep deprived you are subject depression and anxiety among other side affects.

On a happier note you should watch the movie Top Gun with your son and nephew and let them know you will be wearing a mask like Tom Cruise.

Worried Daddy,

Similar boat hear - 7 year old son for me and I have AHI of 76. I received my results on the weekend, and they weren't as bad as I thought, but yeah, they're still pretty bad. I go in tomorrow to get kitted out.

As the others have said, I feel fortunate that I've actually been able to identify where some of my other problems have been coming from and also that I didn't find out I had severe OSA as a result of irreparable damage being done from stroke, heart attack, falling asleep at the wheel etc.

I don't see CPAP as a panacea, but if it does end up being so, I won't complain.....

From what I have read over the past couple of weeks is that for those of us with really bad OSA, we're more likely to succeed with CPAP treatment (it's probably related to the motivation of having the XXX scared out of us combined with the fact that even just some beneficial sleep will be really noticed).

How about you join me and try to target an AHI of under 30 to start with - I know we're both motivated enough....

Jack (RipSnorter)

I'd be careful about asking dentists for answers as very many are likely to want to sell you their devices... too many of which may e.g. cure snoring, but not address apnea per se (your throat closing up and not letting air down your windpipe), or readjusting your jawline to keep your tongue from blocking things - which I think you refer to - but just as many patients who've tried that end up with long term TMJ problems far worse than having to sleep with Cpap.

WorriedDaddy wrote:W
Yes, I have been feeling like my death is near - of course my anxiety is no help to this. I had pretty bad anxiety attacks a few years ago and learned how to cope with them and beat them. Now, its sleep apnea which is throwing me for a loop. I am going to see my therapist in 20 minutes.

Sleep apnea will cause depression and anxiety. Everything you ever learned in coping with the anxiety you can put to good use when you get your machine. Many people have a hard time adjusting to wearing a mask but you already have learned coping techniques to deal with it.

I was also very severe. The difference between being sleep deprived and using my cpap machine was amazing - not immediately but 3 months in I suddenly realized I was understand complex information so much quicker, stuff which was obscure suddenly was blindingly obvious. I am still not a morning person, I still don't leap out of bed saying "Ahh what a beautiful morning" but I don't fall asleep on the couch after 6pm either and I can handle a few late nights and early mornings. Using a cpap machine beats shooting up insulin, and the side effects of many drugs. Keep a journal of how you feel and you will be able to see the subtle changes in your moods and health, start it now when you still feel a wreck so you can more easily see the changes.

BlackSpinner wrote:

WorriedDaddy wrote:W
Yes, I have been feeling like my death is near - of course my anxiety is no help to this. I had pretty bad anxiety attacks a few years ago and learned how to cope with them and beat them. Now, its sleep apnea which is throwing me for a loop. I am going to see my therapist in 20 minutes.

Sleep apnea will cause depression and anxiety. Everything you ever learned in coping with the anxiety you can put to good use when you get your machine. Many people have a hard time adjusting to wearing a mask but you already have learned coping techniques to deal with it.

I was also very severe. The difference between being sleep deprived and using my cpap machine was amazing - not immediately but 3 months in I suddenly realized I was understand complex information so much quicker, stuff which was obscure suddenly was blindingly obvious. I am still not a morning person, I still don't leap out of bed saying "Ahh what a beautiful morning" but I don't fall asleep on the couch after 6pm either and I can handle a few late nights and early mornings. Using a cpap machine beats shooting up insulin, and the side effects of many drugs. Keep a journal of how you feel and you will be able to see the subtle changes in your moods and health, start it now when you still feel a wreck so you can more easily see the changes.

Awesome thank you! Yes, I learned a ton of coping mechanisms and was able to rid of my anxiety and depression yesterday. Luckily, thought I would never say this, I had my anxiety attacks because I learned so much about myself and my brain.

Can't wait man! Glad it is working wonders for you.

Hello,

I just got off the phone with my DME and will be going to a fitting this afternoon. I did read the article you provided Julie about what I need to know before I meet my DME.

I have verified that I will be getting a ResMed S9 AutoSet. They told me they will be configuring the device on CPAP mode and if I wanted to use the Auto part of it, not sure if this makes sense, I can get a prescription for that.

Thanks everyone for the wonderful help.

Hi - You won't need a prescription to change your machine from Cpap to Apap - once you have it, and the clinician's manual, you can do what you want... what nonsense! They may try to 'lock' it, but that just means you have to change the setting, along with others you may want to adjust in future, so if you have any trouble, please get back here and someone will help you with that.

Julie wrote:Hi - You won't need a prescription to change your machine from Cpap to Apap - once you have it, and the clinician's manual, you can do what you want... what nonsense! They may try to 'lock' it, but that just means you have to change the setting, along with others you may want to adjust in future, so if you have any trouble, please get back here and someone will help you with that.

Okay nice info! So this is definitely something I can do on my own with the manual and the help here?

I was told that its a rental for 10 months and then I get to keep it. They said this is what my insurance, AETNA, does to verify its required for a long term service. I will call AETNA on the way to the DME to verify this is correct.

My coverage is 90% for the machine so I am happy about that.

You're on your way!

Here's a link to the downloadable pdf of the clinical/provider manual for the S9.
The ultra secret way to get to the clinical menu setup is the same with all S9 machines.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

There's a helpful little video here
http://www.cpaplibrary.com/machines.html
at the same website is a section for mask fittings...just look at the top menu to find it.

Do confirm with Aetna that they for sure do the 10 month rent to own thing. Don't rely on what the DME says as they don't always know every insurance plan requirements. Find out exactly what your plan requires directly from Aetna.

Make sure the model name clearly states "AutoSet" on the top of the machine.
Don't let them try to pawn off the Escape Auto as it doesn't record all the data that the AutoSet records. The Escape Auto does have APAP capabilities but it is old technology in terms of how it works and the only piece of useful data it gathers is AHI (and only the generic AHI and not the break down into each category).
The name is easily seen though....so just make sure to look at the model name right above and to the right side of the LCD screen.

We really DO care about you and your health. I've only been on this forum for a week -- I'm a single parent, adjusting to a new OSA diagnosis myself -- and have found people here to be amazingly helpful and generous. When the going gets rough, I come back to this site every time. It is far more helpful than my sleep doctor and my DME provider.

I'm so sorry to hear about your sister's passing and the stressful situation with your nephew. Hang in there. Ultimately, it's not about having a "cowardly" medical problem. It's just a problem, and you're getting on top of it, and we're all here for you!