I've been a forum lurker ever since my ENT suggested I may have sleep apnea. It's been about two months since my sleep study and a month on the CPAP. This will probably be a long narrative, but I think it is important for any other lurkers who may be asking themselves if they need to have a sleep study or if it is worth all of the trouble.
First, a little bit of history. I'm a 26 yo male, 330 lbs (I know, I know), who had been diagnosed by my primary care physician as having hypertension (was Stage 2 when diagnosed). I also experienced morning headaches and some insomnia, which my PCP attributed to my blood pressure being sky high. I started having bad reflux, so I scheduled an appointment with my ENT.
During my office visit, after an initial exam, my ENT asked me if I was experiencing symptoms like snoring, morning headaches, sleepiness during the day, high blood pressure, etc. After answering yes to all of the symptoms, he suggested I had sleep apnea and ordered a split sleep study. Now I had heard of sleep apnea, and knew it was bad, but I never expected that I may have it. I did snore and my wife complains about it, but I thought it was just snoring.
The first half of my sleep study was normal for me. I wasn't affected too much by the strange surroundings and the wires attached all over my body. I fell asleep at about 10:30 and the tech woke me up at 1:00 am. She hooked me up to a CPAP and I slept the rest of the night.
The next day was AWSOME for me. I am one of the people who say IMMEDIATE results of using the CPAP. I had more energy that day than I had in years. It made me realize that when I thought how I felt day to day was 'normal', it was actually a pretty miserable existence. It took the sleep study place 3 weeks to get my results to my ENT (which was miserable for me since I now knew what feeling 'normal' actually was).
I still hadn't seen my results yet, when the medical equipment supplier urgently wanted to get me in to get my CPAP immediately. She told me my AHI was higher than anyone she had ever seen. She actually hounded the insurance company until they would fast track the approval because 'if anyone needs a CPAP, it is this man'. I got my CPAP (a Respironics M Series Auto CPAP with A-Flex, a full data compatible machine), and started using it that night.
It took a few nights to get used to it, but the results were immediate. I was no longer having morning headaches. I was no longer drowsy during the day or falling asleep watching TV in the evening. I actually had enough energy to being a fitness program and play with my kids. My blood pressure is way down. I still hadn't seen the results of my sleep study, but I didn't really care since I was feeling MUCH better and seeing results.
Yesterday I had a follow up with my ENT. We reviewed my results and I was astounded. I had a AHI of 127 (one event every 28.3 seconds). Lowest O2 was 74%, mean O2 was 89%. Mean event length was 16.2 seconds, max was 34 seconds. I had no stage 3 or 4 sleep. Thinking about it, with 127 apneas an hours, each with an average of 16.2 seconds long, I was holding my breath for 34.3 minutes every hour! According to my ENT, these results were not conducive of living.
I now have a lot of energy. Blood pressure is down (ENT suggested I follow up with my PCP about possibly reducing or eliminating my BP meds). Weight is also down 5 lbs already because of the extra energy.
I just wanted to share my experience with the other lurkers and curious people who are wondering if it is worth all of the trouble of the sleep study and CPAP. It is.
Tue May 20, 2008 12:21 pm
CrohnieToo
Joined: 20 Mar 2006
Posts: 3480
Location: Michigan
CONGRATULATIONS, CactusJack. And thanks so much for sharing your experience w/us!
Unfortunately, not all of us experience such a dramatic improvement in such a short time. But it is so encouraging to know that others have and that improvement will evenutally arrive for us as well.
For instance, my first 30 nights on CPAP were WORSE than prior to starting CPAP therapy. But I well understood the dangers and negatives of untreated OSA and persevered and saw my sleep results and energy levels improve steadily after those first 30 nights and some pressure adjustments and finding a comfortable mask w/minimum leak problems.
_________________ Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.
Tue May 20, 2008 2:49 pm
Mr. Ed
Joined: 22 May 2008
Posts: 42
Location: Denver, CO
Thanks for sharing your experience Jack. I've been a lurker as well - took a split night study two weeks ago and felt immediately better the next morning leaving the hospital where I had the study...it was amazing the difference.
I went over my results with my Dr. yesterday...AHI of 86, Lowest O2 was 77% with a mean of 85%. He said I had severe obstructive sleep apnea. What I didn't understand was the Dr. then asked me if I wanted to go on the machine at all. No brainer for me!
The next step is that they will coordinate with the insurance company and a medical equipment provider (Apria?). I'm looking forward to being able to sleep at night as well. I've been complaining about symptoms to my Dr. for about 7 years and I guess I got lucky on the diagnosis. I had the flu (didn't get a flu shot this year) and my regular Dr. was too busy to see me so I had to see an associate Dr. The associate Doc asked me if I had apnea and I told him I didn't know so he ordered the study for me. Kudos to him for paying attention...I'll be switching primary care docs this week too.
Thu May 22, 2008 11:19 am
CrohnieToo
Joined: 20 Mar 2006
Posts: 3480
Location: Michigan
Mr Ed!!! Apria is NOT always the best or easiest local DME supplier to work with. Overall they don't have the best reputation. Call your insurance company yourself and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one and will be able to "shop" those local DME CPAP suppliers they are contracted with for the one that offers you the best equipment, the most lenient mask exchange policy and an on-staff RT you are most comfortable with.
It is great that your sleep doctor went over your study results with you! Did he give you a copy of both his dictated results (1-2 pages) AND the full scored data summary report w/condensed graphs (5+ pages)?? If not I most certainly would ask for them. From both your sleep evaluation AND your titration studies. I'd also ask for a copy of your equipment order (script). You never know when traveling if your xPAP should get lost, stolen, quit working or a mask part break, etc. and would need them to get assistance w/a DME supplier in the area.
It would also be to your GREAT BENEFIT to INSIST upon receiving a FULLY DATA CAPABLE xPAP. I would REFUSE any less. YOU are paying for this equipment whether thru insurance or self-pay so you have a RIGHT to a fully data capable xPAP. A fully data capable xPAP is the exact same insurance code as a bare-bone, compliance data capable xPAP, and insurances reimburse by code, NOT by brand and model of xPAP.
The fully data capable xPAPs are the Resmed S8 Elite w/EPR (the Escape and Compact are NOT!) and the Respironics M Series Pro w/C-Flex (the Respironics M Series Plus w/or w/o C-Flex is NOT).
If your sleep doctor happened to script an autoPAP, then the Resmed S8 AutoSet Vantage is fully data capable, the Respironics M Series Auto w/A-Flex and the Respironics Auto w/C-Flex as well as the Puritan Bennett GoodKnight 420E (the key "word" is E) are fully data capable.
Do NOT accept anything less than one of these 6 xPAPs. If your response to xPAP therapy isn't what is expected, these fully data capable xPAPs will give your sleep doctor clues as to WHY and what changes might need to be made. W/o that data he'd have to make adjustments to your xPAP therapy by guess and by gosh.
_________________ Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.
Thu May 22, 2008 11:43 am
Mr. Ed
Joined: 22 May 2008
Posts: 42
Location: Denver, CO
Thanks for the advice Crohnie - I have United Healthcare so I don't have a choice of machine brand (they require Fisher Paykel) but I can look at different models. I also talked to the insurance company and a couple of friends with apnea and they also recommended against going with Apria (most had billing issues).
I found a place here in town to work with and will be going with them. I'll also provide them a copy of the results and Dr. orders.
Thu May 22, 2008 3:45 pm
CrohnieToo
Joined: 20 Mar 2006
Posts: 3480
Location: Michigan
Well, THAT is the FIRST I've heard of ANY insurance company insisting on only one brand of xPAP!!! Pardone my skepticism. WHO told you that tidbit of information?
If it didn't come straight from my own personal conversation with a United HealthCare benefits rep I wouldn't swallow that bit of horsepuckies at all. And even then I would HAVE to ask to speak to someone else higher up and repeat the question. Actually, I'd do that w/a second call to ensure that I got someone who hadn't had the opportunity to discuss my call and question w/the original insurance rep I talked to.
There is NO Fisher & Paykel xPAP that provides full data reporting capability.
_________________ Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.
"I have United Healthcare so I don't have a choice of machine brand (they require Fisher Paykel"
I also have United Healthcare and my first machine was a Remstar M-Series then I told them I wanted a machine with C-Flex and my DME traded me a Remstar Plus M-Series. The only thing is that they rent them before they purchase the machine. My dme is really going to hate me when I tell them I want a Remstar Auto. We will see how that goes and I will inform the forum on my progress. Good Luck.
_________________ Diagnosed with moderate OSA on April 28, 2008 (had for many years undiagnosed)
Total hypopneas 122, AHI 36, AHI in REM 84, O2 as low as 78%.
Remstar Auto M-Series with C-Flex and humidifier, pressure set at 11cm
Resmed Swift Mirage II Nasal pillows
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