My Story: Do or Die

[MaxDarkside]

Here's my story, maybe someone can benefit from this.

I have a family history of snoring (CLUE #1) and my wife told me I stopped breathing at night (CLUE #2). Over the last few years, I was getting groggier and groggier during the day (CLUE #3) to the point my work was suffering. The groggier I got, the more I smoked and drank coffee to make up for it. I have high blood pressure (CLUE #4) that just appeared one day some years ago after getting sick from stupidly drinking milk in India (another story). Then, earlier this year the arrhythmias started (CLUE #5)... heart flutters, now and then, at times. Then, on August 1st, I was walking in the parking lot my heart was pounding and fluttering, then it stopped. Not only the fluttering stopped, but my heart. My chest started feeling like it was filling like an inflating balloon. Euphoria came over me that got stronger and stronger until I was embraced in the warm love of God Himself. The world was turning white and I fell to my hands and knees clutching my chest in complete euphoria (OMG IT WAS WONDERFUL !) and as I died, starting to roll over and succumb, I decided to fight it with all my will. I WAS NOT GOING TO DIE ALONE IN A PARKING LOT !! I fought hard to get back to my feet, I staggered... stumbled up onto my feet and the euphoria faded and my chest felt like it deflated and I felt NORMAL ! Like nothing had happened.

I went to the doctor and he called me a "flat liner", someone who had died and came back. I said I wanted a sleep study and he ordered it. I had moderate to severe sleep apnea and the sleep doctor / neurologist called my euphoric event a "Significant Arrhythmic Event", AKA Ventricular Fibrillation with a 99+% probability of dying when unaided.

Between the time I was diagnosed and when I got my machine I was yet untreated of course and was going downhill fast. I could not function at work, was getting groggier and arrhythmias worsened. It got to the point that I was in Target with my wife and son, wandered over an aisle but then had a cognitive failure... I did not know where I was or how to get back to my wife and son. The next week it happened again, when I came out of a grocery store and was presented a parking lot and I didn't know why. It took a few moments to realize that is where the car is and I needed to go to the car, wherever that was.

I lived in fear that another "Significant Arrhythmic Event" would occur and this time I would not be so lucky.

On Nov. 14 I got my machine, full face mask, set 5-15 and got therapy...

In 2 days the arrhythmias stopped.
In 1 week I was pretty good at work.
In 1 month I'm a powerhouse again, tho still groggy but getting better each day.

Do I have troubles adjusting to this? Yes. Will I give it up? Heck NO WAY. I have no choice: The consequences are severe.

I no longer live in fear. My sleep doctor / neurologist says that's the biggest benefit. Oh, and my numbers are so good, my settings are just right, that I don't have to go see him for a YEAR !

SUCCESS.

Thanks for listening.

P.S... If I am to die the way I was in my story, I'd like to 2-3 times please, it was WONDERFUL !!!

[Janknitz]

WOW, you've certainly had a dramatic course here, but EVERYONE NEEDS TO HEAR YOUR STORY! This is why we all put up with CPAP. Nice to have a reminder now and then.

[VVV]

That is a great story. My suggestion is to go one step further and download ResMed's free software from their site.

Use that tool to keep a check on your therapy long term. With that software you can treat yourself better than your doctor can treat you.

[DoriC]

Max, your story leaves me speechless! So glad to have you here! Now, can you tell us a little about how therapy adjustment is going for you? What was your titration pressure? I ask because your settings are pretty wide open and your minimum should probably be set closer to your 95% pressure or titration. Do you know your AHI? Do you have software? Sorry to bombard you with questions but maybe some good suggestions can be made based on your reply. Good luck and keep us posted.

[xenablue]

Another fabulously inspiring story! Thanks for sharing this.

Although your experience was definitely an extreme one that I would never like to go through, hopefully it will inspire those 'on the edge' who are still a little in denial and/or don't use their equipment every time they close their eyes for sleep or a nap.

Cheers to you!

xenablue

[MaxDarkside]

Thank you Janknitz, we need to be mindful of why we are here (on Earth and also on CPAPTalk). If someone has been recently diagnosed, maybe they are in the early stages of their condition, where I was obviously near the end of the trail. Find strength to stick with the treatment, else you too might end up in a parking lot on your knees experiencing God first hand. I did look to "the other side", but could see only white.

Thanks, too, VVV... I have the SleepyHead software, which is very good, thanks to "Mark", bless his soul. I can see my AHI's dropping, events, all the stats. Very helpful. I am a Chemical Engineer and in the business of data analytics, so I like numbers.

Thank you too, DoriC. There's not a lot of therapy adjustment, but there is some... With the full face mask I tried sleeping on my back, but even a pressure of 20, which for me was horrid torture including air going down my throat, could not resolve the major apneas. I knew my sleep study numbers were better on my tummy/side, the posture I had slept in for years, ah, probably because unknowingly I had better AHI that way. So now I return to 5-15 cmH2O and sleep that way and it works really well. The Dr. this AM said to keep that way, the auto is ranging nicely between the two, up and down, and so I shall.

Thanks, xenablue... I was late in my treatment, obviously. Everybody stick to theirs, else you may end up "late in your treatment" also. This is serious stuff. HANG IN THERE, find a way to make it work.

[MaxDarkside]

By the way, I'm 54, 6' 1" and 160 lbs. Thin & trim like you see in my profile picture.

[Perrybucsdad]

Max, I like you had to have higher pressure with my FFM and eventually started toying with the idea of a nasal pillow. You might want to check my link in the sig titles "So you think you're a mouth breather" as what I found out with the nasal mask is I could significantly reduce my pressure with the nasal pillows vs the FFM.

Glad you decided to stick around. I had one of those events too, but it was not apnea related. It certainly makes you realize what's important in life.

Take care,

John

[MaxDarkside]

Thanks, Perrybucsdad. Yes, events like that make you appreciate life. Having died once, I value these "bonus" moments that God has given me. I also have had the "live life backwards" philosophy, and traveled extensively, from Manila to Moscow, meeting lots of interesting people in interesting places. I want to do things before I can't. I knew of a guy once that pinched every penny saving for retirement, self imposed austerity only to have a heart attack and die just days after his retirement party. I learned from that. This sleep apnea treatment has given me a new lease on life and I'm going to make the most of it. My wife, 10 years younger (blush) also has serious medical issues (cardiomyopathy and POTS) and so we are going to live hearty while the living is good.

I will read the mouth-breather link. I too, believe I am one. Maybe I'm wrong !

Thanks again.

[NotSleepingBeauty]

Wow. Thank you for sharing your story. Glad you are here to tell it!

[MaxDarkside]

Thank you muchly, NotSleepingBeauty, I'm rather glad to be able to tell it as well ! I'm well on the road to recovery, each day better than the last.

[Lizistired]

Thanks for sharing.

[xenablue]

By the way, I'm 54, 6' 1" and 160 lbs. Thin & trim like you see in my profile picture.

Holy Cow!!! AND another testimony that being overweight causes OSA!!

What a poster child you'd make!

[MaxDarkside]

Thanks, xenablue. When I went in for my sleep study, the tech said "Why are you here?" (on my way out in the AM, she said "I hope the doctor can help you" ) and the sleep doctor was very curious and said he did not know why I had sleep apnea, but clearly did, that my airway/throat/etc. must be quite pliable and that the only way to figure it out would be to "scope me" but we both agreed that would not be fun and if treatment fixed me up, we'd be fine with that. He's a great doctor, listens well, takes the time. He's at Meadowbrook (Park Nicollet) in the Minneapolis, MN area.

[rocklin]

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AND another testimony that being overweight causes OSA!!

Hi xenablue

Imho, much like cancer, OSA's root cause is likely to be multifactoral.

You can be skinny and die of a heart attack.

You can be a non-smoker and die of lung cancer.

imho, being overweight has so many disadvantages that no one should seize on Max's story as an excuse not to do what's necessary.

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Hi MaxDarkside.

Great, inspirational story, I hope you go on to a full recovery.

Wish there was a recovery without the silicon facehugger, but hopefully, that will be in the near future.

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If I am to die the way I was in my story, I'd like to 2-3 times please, it was WONDERFUL !!!

Been there, done that, more than twice. It wasn't wonderful for me.

Only after you realize that tonight isn't the night does the euphoria wash over you.

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SDB needs to be seen as the root cause of a lot of medical problems.

Your story will help push that cause.

Thanks.



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