The Dangers Are REAL - Is It Too Late For Me?

[jameslv-nv]

I just discovered this site, forum today, while searching for cpap videos on Youtube. I'll try to be brief but I KNOW I have OSD and need to do something NOW!

Maybe, just maybe this post will get others who've been on their ass and or in denial to DO SOMETHING NOW before things get worse.

I'm now 44 close to 45 and I believe I may have had OSA since I was a teenager. I remember several times waking up gasping for air or my heart racing back then. Back then I always thought I just got "startled" by something that awakened me. Maybe a loud noise.

For as long as I can remember I've ALWAYS felt tired and run down even when I was in the best of health, weight, taking vitamins, exercising etc.

Over 8 years ago I did a sleep study, I HAD INSURANCE AT THE TIME NOW I DON'T, but the next morning I felt WORSE than ever!! Seriously I felt like I'd been run over and dragged through a field. I had a terrible headache, I was dizzy, I don't think even I've ever felt worse when I woke up.

I remember that night waking up more than I could ever remember gasping for air, I felt like I was being choked or suffocated in my sleep. The guy doing the test said I'd sleep like a baby before we started. NOT SO..again..the absolute worst experience and night sleep I ever had.

THIS ALONE CAUSED ME TO NOT GO BACK AND GET THE DIAGNOSES OR TO BE TREATED..REMEMBER THIS WAS OVER 8 years ago. The sleep tech told me that morning although he could not and was not able to give a diagnoses technically but he said I was a classic case and had it bad! That's all I ever found out because again..

I did not want to go thru that again. I blamed the machine..thinking how could it ever help me after experiencing what I went through. I could not imagine it ever working or helping..and how on earth could I ever get a good nights sleep wearting that thing..when I could only sleep on my sides and or stomach. There was no way I could do that wearing a mask.

I've NEVER been able to sleep on my back for many, many years, because I found the only way I could sleep was on my stomach and or side but mostly my stomach with my head turned to my side. I can only use a flat pillow..seems like anything elevated too much hurts my breathing.

Long story short I've gone all these years, tired, depressed and over the past 3-4 months started having discomfort in my chest under my left arm, in the heart area, as well as very sore and aching arms, legs and lower back. These things have been getting worse especially the pain in my left leg, near my left calf area almost like I pulled a mussel but it never goes away completely.

I've got a doctors appointment scheduled for early March, soonest he could get me in, but I'm afraid it may be too late that major damage may have been done to my heart.

I KNOW I MUST DO SOMETHING ASAP but I'm so damn afraid the CPAP won't work after spending the money. I have NO INSURANCE NOW and although I"ve tried to run my own business for over the past 5 years I just can't concentrate or focus enough to get anything done but I'm unemployed basically.

I am fortunate to have some money to work with so I'm not destitute by any means but I am DESPERATE as I know my condition needs immediate attention.

That's why I'm here is to get some guidance BUT to tell others like me who've put this off for years for whatever reason to get off their ass at all cost and DO SOMETHING NOW because things can and WILL get worse. It won't go away magically by itself.

I've lost weight thinking it would help but it never has.. then I thought..well since I don't feel any better thin why not enjoy and eat any foods I want..it doesn't make any difference. So.. I put back on the weight and added plenty more!

Ok, my novel is over..my apologies about the long post.

I'm hoping I can get some much needed advise myself so I'm off to start reading more post.

Thanks for those of you who've been through, and still are, going through this for taking time to contribute.

James

[Pugsy]

Welcome James,
Like you my titration sleep study was horrible experience but I was lucky and found this forum before going to it.
If I hadn't found the help here, I probably wouldn't have gone ahead either.

That said. There are ways to get this done without insurance. There are ways to get a machine without a script. There are ways to (I hate to say it but it is true) self treat. Takes a special Auto machine, software and a lot of hard work and much education.

Is there anyway to get those old records of your previous study? The appointment you have in March? What kind of doctor is it with? Someone you already have a relationship with? Any physician can write the script for a machine.
Is there any chance he could or would help monitor the OSA and cpap?

[Jayjonbeach]

Hello, welcome to the forum and hopefully a turning point in your life. My story is VERY similiar to yours, including age, length of problems, the whole damn thing. Unfornately you are not alone in a one night or even longer bad experience, there is very little regulation in the Industry and a LOT of uneducated people in high places that are responsible for people not getting off to a good start (again myself included and lots of people I know as well). Don't let this disuade you, one night or even one month with the wrong settings on a machine is NOT a good judgment of anything. (not saying they had wrong settings in your case, but its possible, also realize they were likely toying with the settings to test to see if you had OSA at all so things are not optimal in that case).

Yes starving your body of oxygen, which often happens with moderate to severe sleep apnea, will cause damage no doubt.

Only a doctor could access how much you have at this point if any but stay optimistic and you're still alive so it cant be too late, it will be too late if your not.... I've gone through phases of chest pains, overall fatigue, muscle soreness from nothing in particular etc and have always checked out healthy including heart.

Secondwindcpap sells VERY good quality used machines and even some new open box machines for VERY good prices (or even just brand new machines too), I don't think you will be risking anything or very little and if somehow you don't have OSA, you could always turn around and sell the machine.

Make sure you get an APAP machine, this way even if you need CPAP therapy you will have both options available to you and make sure it is data capable. This way you can do your own titration at home (a way to diagose which pressure will work best for you) and take full charge of your own therapy.

Continue to read and post in this forum, tons of good info here on machines, masks, OSA and everything related.

All the best and good luck

[jameslv-nv]

Hi Pugsy thanks for taking time and responding.

He's a general practitioner that I hold in high esteem. Both my parents went to him for past couple years and I was with them on many visits. He's very attentive and really takes time with his patience.

I'm starting with him to check on my heart mainly but will discuss the Apnea issue of course because I'm sure without a doubt they are linked.

Unfortunately good health does not run in my family. My mother suffered from a rare and terrible disorder so I have many concerns of what my aches and pains may be BUT the sleep apnea is priority one as I think many if not most of my issues are or may be caused by it.

Perhaps he can get the previous results from my study. Unfortunately I was in California. I wonder I I contact them if they could even go over a diagnosis by phone since I"m in another state. I could pay them like an office visit if needed. Guess would not hurt to find out...all they could say is no.

[jameslv-nv]

Man, I see why this forum is popular there's so many helpful caring folks here!

Jayjonbeach you've really given me some great hope and feedback. I think I could spend hours here today but due to all the pain in my wrist and arms I have to limit myself. Will be back later today but can't thank you all enough already!

Hello, welcome to the forum and hopefully a turning point in your life. My story is VERY similiar to yours, including age, length of problems, the whole damn thing. Unfornately you are not alone in a one night or even longer bad experience, there is very little regulation in the Industry and a LOT of uneducated people in high places that are responsible for people not getting off to a good start (again myself included and lots of people I know as well). Don't let this disuade you, one night or even one month with the wrong settings on a machine is NOT a good judgment of anything. (not saying they had wrong settings in your case, but its possible, also realize they were likely toying with the settings to test to see if you had OSA at all so things are not optimal in that case).

Yes starving your body of oxygen, which often happens with moderate to severe sleep apnea, will cause damage no doubt.

Only a doctor could access how much you have at this point if any but stay optimistic and you're still alive so it cant be too late, it will be too late if your not.... I've gone through phases of chest pains, overall fatigue, muscle soreness from nothing in particular etc and have always checked out healthy including heart.

Secondwindcpap sells VERY good quality used machines and even some new open box machines for VERY good prices (or even just brand new machines too), I don't think you will be risking anything or very little and if somehow you don't have OSA, you could always turn around and sell the machine.

Make sure you get an APAP machine, this way even if you need CPAP therapy you will have both options available to you and make sure it is data capable. This way you can do your own titration at home (a way to diagose which pressure will work best for you) and take full charge of your own therapy.

Continue to read and post in this forum, tons of good info here on machines, masks, OSA and everything related.

All the best and good luck

[Pugsy]

8 year old records probably won't be easily accessed. Might have a better chance with a request from the doctor.
It would be a huge help in getting you to a starting point even though they are old. In reality you need a new study but without insurance it just is a huge expense unless you were lucky enough to find someone who could give you a huge break on the price.

Start educating yourself on machines. You will need an Auto machine for sure and software. I would suggest narrowing it down to either the Respironics or ResMed machines. The software for either can be obtained.
Some of the other brands have software but not so easily obtained. Either one would give you excellent treatment and software reports that are easily understood once you figure out what all the stuff means.

Figure out how much you can afford to pay and we can see if the newer would work or an older machine that might cost less but the connections to get the data off the cards can also up the overall price.

You will also want to research masks and also want a machine that comes with a heated humidifier. While some people don't need the extra moisture, most people do and it can be a huge comfort feature.

There will be lots to learn.

[jameslv-nv]

Will get right on this today educating on machines.

Great advise about the humidifier I live in Las Vegas so without a doubt it's dry as can be. So moisture will likely help my sinus issues as well.

8 year old records probably won't be easily accessed. Might have a better chance with a request from the doctor.
It would be a huge help in getting you to a starting point even though they are old. In reality you need a new study but without insurance it just is a huge expense unless you were lucky enough to find someone who could give you a huge break on the price.

Start educating yourself on machines. You will need an Auto machine for sure and software. I would suggest narrowing it down to either the Respironics or ResMed machines. The software for either can be obtained.
Some of the other brands have software but not so easily obtained. Either one would give you excellent treatment and software reports that are easily understood once you figure out what all the stuff means.

Figure out how much you can afford to pay and we can see if the newer would work or an older machine that might cost less but the connections to get the data off the cards can also up the overall price.

You will also want to research masks and also want a machine that comes with a heated humidifier. While some people don't need the extra moisture, most people do and it can be a huge comfort feature.

There will be lots to learn.

[DoriC]

Welcome James, glad you found this forum. There are many experts here to help you but I just wanted you to know that technology has come a long way in 8+ years and the machines and masks today are far superior. Also, a sleep study is only one night hooked up to wires in a strange setting and the experience has a lot to do with the tech performing the study. While you're waiting for your appointment(maybe you can push it up), educate yourself here, there's lots to read and ask questions.

[Pugsy]

Ahh, Las Vegas. I live there for 5 years. Not while on CPAP but just before I started.
You will definitely need the humidifier.

[jameslv-nv]

Hey gang,

I came across info about IntelliPap with auto adjust here http://intellipap-aflex-auto.cpaptalk.com
while checking out the site Secondwindcpap suggested by Jayjonbeach.

From what you're suggesting I'll need Software to assist with getting proper settings for me. So from what I can tell it seems I'd need to also purchase their Optional Data Management Software and Accessories. Looks like that runs $125 at the Secondwindcpap site and the machine is $425.

Looks like some excellent feedback on that unit and due to some traveling I'm doing over next several months it looks very portable.

Feedback would be appreciated I don't want to jump and buy too soon but so far it looks very comparable to some of the other products that have been mentioned here thus far.

Thank you!

[jameslv-nv]

I see you're now in the "Show Me State". Las Vegas is not my number one pick for living as it's not green enough and my allergies never seem to give me a long enough break due to the mild weather.

Can't say I miss the cold and snow all that much but someday hope to live in a slower area. The traffic here is just terrible EVEN considering the high unemployment rate and gas now over $3.15 a gal it seems there's more drivers on the road than ever!

Ahh, Las Vegas. I live there for 5 years. Not while on CPAP but just before I started.
You will definitely need the humidifier.

[Jayjonbeach]

I will second some of the things Pugsy said, definitely get a humidfier and one of the machines recommended as well, the newest versions. A good mask is equally as important, I am mostly a mouth breather with allergies as well and got a full face mask and glad I did. The problem with getting a nasal mask is sometimes people open their mouths in the night and dont get the benefit of therapy when doing so, people try to tape their mouths shut, chin straps, etc, in the end with a full face mask you don't worry about any of that and always get good therapy IF your mask is not leaking, a challenge all on its own. Many people do just fine with nasal masks however too.

Note that your pressure requirement has likely changed from 8 years ago (possibly not), I wouldn't be too concerned about that study but sure it would be nice to have.

With an APAP machine and software you can do your own accurate titration at home over a week or two. I would start with settings at 6 to 20 for the very first night only and then you must see what your average was for that night. Once you see this, likely you will adjust the range accordingly. After about a week, you will see what pressure you are normally doing well with and be able to keep a narrower range with the machine, for myself my pressure is 12 and I have the machine on 12 - 18 every night right now, though many people would put it on 12 - 16, or even 10 - 14 (note I dont think 10 - 14 is a good idea at all with an optimal pressure of 12 but everyone is different and that is likely getting ahead of what you need to know for now).

The main thing is just to keep breathing through the night, they say AHI lower than 5 is good, for me and many people the number is closer to 2 or less. Really, I dont want to stop breathing ANY times per hour (AHI=0) and I am getting closer to that number but it is very hard to achieve and not possible in most cases from what history shows. Some nights are better/worse than others too, but again the main thing is to just achieve the lowest number possible.

At any rate, pick a good machine (the one I have listed as owned is very popular), get the software for it (free from here) and keep reading here on how to get started and take full control of your own therapy by having full knowledge of both and OSA in general.

A mask is a tricky thing to pick without trying it first, not sure what to suggest here if you cant go to a store nearby to at least get fitted for one, the type of mask and SIZE are both critical.

[Jayjonbeach]

Hey gang,

I came across info about IntelliPap with auto adjust here http://intellipap-aflex-auto.cpaptalk.com
while checking out the site Secondwindcpap suggested by Jayjonbeach.

Thank you!

That is a pretty good machine judging by all the people that like it, most people really like it including the owner of that site whom I discussed it with in some detail. There are one or two disadvantages with it though that I brought up in those discussions depending on the individual of course, and it was the reason I paid double to get the one I have now instead of that one which was my next choice.

The algorithm, the technology that watches you when you are sleeping and reacts accordingly, does NOT look at Flow Limitation, a key precursor event for many people that happens before someone stops breathing. It does look at when someone is snoring as the one precursor to an actual apnea event and reacts to that; the machine I have looks at BOTH of these things, ensuring I have the best chance to avoid an "apnea" at all, an event where I stop breathing. It also seems to react less aggressively to events and Snore than most other manufacturers based on a "non-conclusive" 3rd party study done.

That was enough for me, my health is too important and I am one CHEAP SOB too, but as you've kind of seen already, health is not something to mess around with.

[wolewyck]

Welcome to the forum - so glad you are here and being proactive. First - NEVER GIVE UP. You had one terrible night many years ago... lots of folks here have a hard time starting but find it gets easier with time and persistence. Also, although some wake up their first morning on CPAP and feel as though the sun comes out, for others, it takes longer-- weeks, months. Just gotta keep at it.

Also, you don't have to sleep on your back-- in fact, for some people, sleeping on the side helps reduce the severity of their apnea. I've even seen posts from people who are stomach-sleepers, masks and all! It is definitely possible to find a setup that works for how you sleep best.

Here is a short list of the various pieces that you may need to consider over time, to help you get more comfortable with the therapy.

--The machine, of course... but you are already on your way with that.
--The mask. Some people really hate certain types of masks, while others work a lot better for them-- there may well be significant amount of trial and error here to see what is most comfortable with you. Some places will sell you mask "insurance" so that if you don't like a mask within a trial period, you can return it.
--Humidifier - really, really useful in achieving comfort.
--Hose management. Hang it high! There are a variety of self-made and purchasable options-- many of which are quite inexpensive-- to help prevent the hose from dragging too much on the mask, causing leaks and reduced therapy effectiveness.
--The pillow. Many people seem to change their preferred pillow once on CPAP, to accommodate their own sleeping position preferences and mask style. Search through the forum and you'll see some discussions of this, and what different people have liked...

Good luck, and keep on trucking! One piece at a time.

[M.D.Hosehead]

James, just so you know:

You're not the first member here to do it yourself.

In point of fact, rested gal educated herself, bought all her supplies, and has managed her own treatment from day one. She's one of the best-informed, most helpful and supportive members of this board.

You can learn a lot from her links and posts. Your patience and perseverance will be rewarded.