*UPDATE* 1.5 years on ASV with NO RELIEF

[Coolsideofthepillow]

I have been diagnosed with severe apnea with well over 100 episodes a night. Time to start reading. Just wanting to say hi!

[WearyOne]

Hello, and welcome!

[Coolsideofthepillow]

Thanks. At the moment I am a bit worried aboutthe diagnosis. Seems my episodes are in the 130's a night and I need to be on a bipap. Yesterday a lady was telling me about her friend who died from apnea and I still don't have a machine. Anyone else in the 130's?

[bailachel]

Welcome! You have come to the right place. There is a wealth of good information here. Don't worry if you start to feel overwhelmed, you can always go back and read it again later. I'm fairly new, but there are a lot of very experienced people here who will be able to answer your questions and help support you through this.

[nanwilson]

Hi and WELCOME!!!!!!
You are not alone, many of the cpapers here were in the same panic as you.
I have been at this for the past 3 months, and I learn something new every day.
Click on the light bulb at the top of the page and read....read.....read.
If you have ANY questions or don't understand something, just ask on this forum, and half a dozen of the regulars will help you out.
AGAIN, WELCOME.
Cheers...Nan

[Roman Hokie]

Welcome, Cool Side. I like the name. I'm guessing you're a "flipper" of the pillow more than several times a night.

I just got my script and it's sent to my DME. My original study (sans CPAP) had me at 90 events per hour for the 2 hours I was on my back. That translates to a minimum of 25% breathing stopage for those two hours.

Needless to say, with the script and my titration night, I was down to 2 events for over 4 hours (not average, actual).

Yeah, there's a lot to read, but you'll see I'm a relative newbie. And I don't even have my gear yet. Anxiously and excitedly awaiting.

Lot of good people here, too. Lot of them.

[djr1215]

130+ events in how much time? I didn't get up that high in the 297.5 minutes I slept. Here's a short summary of mine:
RESPIRATORY EVENTS: She suffered 117 respiratory events for an apnea-hypopnea index 23.6, 58.8 during REM
sleep. 02 saturation low was72 %. She was hypoxic for 2.9% of the night. She snored for 100% of the total sleep time.

[Coolsideofthepillow]

I will look at my printout out tonight. Thanks for all the warm welcomes.

[PST]

Thanks. At the moment I am a bit worried aboutthe diagnosis. Seems my episodes are in the 130's a night and I need to be on a bipap. Yesterday a lady was telling me about her friend who died from apnea and I still don't have a machine. Anyone else in the 130's?

Rates are usually expressed per hour of sleep as an apnea index (AI) or apnea-hypoxia index (AHI). My AHI for the untreated half of my sleep study was 87. In a split study like that, if your AHI is high enough the first half of the night, they slap a mask on you and make a preliminary stab at your proper pressure the second half. In my humble opinion, 130 in a night isn't particularly bad by the standards of this group, but 130 per hour would probably win a prize.

I think it is reasonable to say that sudden death is not what most of us worry about or should worry about. It is possible in a person with heart disease that a deep reduction in oxygen saturation caused by a lengthy apnea can trigger cardiac arrhythmia. The real issue, though, is the long-term damage caused by interrupted sleep and repeated oxygen desaturation. I hope you can start therapy soon, but you shouldn't lose sleep worrying about that lady's story about her friend. You have probably had OSA for a long time now and the a few days one way or another isn't a critical issue. Take the time necessary to be sure you get the right equipment for your condition. The doctor should have a good explanation why you need bipap. Most people don't, but there can be very good reasons and if those are present, the doctor should explain them. I hope you share them with us. We have some bipap experts here.

[snipsnsnails]

HI I'm a noob myself and was pretty freaked out when I found this place. Read and learn. Start with the lightbulb at the top of the page and then look around for more info at cpap.com's learning center or any other place you find helpful. Knowing what you are up against is the best thing to stop worrying and start planning.

Roster gave me this advice and it helped a lot!
To get off to a good start, read this document and be fully prepared and in control of your Thursday appointment:


Questions to ask about your PSG and Titration Study
by CPAPtalk member rooster

1. Did I have any central apneas? How many?

2. Were there any comorbidities? What were they?

3. Did I breathe or leak through my mouth? How often? What do you recommend to prevent it?

3. Did I exhibit Positional Sleep Apnea (PSA)? Was my apnea more severe in one sleeping position as compared to others? Is my pressure requirement higher in one position as compared to others? (Often sleep apnea is more severe when sleeping on the back.)

4. Is there anything else unusual about the results?

5. How will I know my therapy is preventing apneas?

6. I am determined to own a data-capable machine and software to monitor apneas, hypopneas and mask leak. This will allow me to call your office with specific questions if I have problems with the therapy. Will you help me with the appropriate prescription?

In addition to the questions:

1. Get a copy of your PSG. It is your legal right to have one.

2. Get a copy of your CPAP prescription.

3. Make sure the prescription calls for a humidifier with the machine.



Point number six is a critical one. Most people get screwed on their first machine and the insurance won't pay for another one for five years. Be prepared to refuse delivery of a machine if you are not absolutely sure it is the one you need.

[Coolsideofthepillow]

I Suffered 319 respiratory events for an apnea-hypopnea index 133.7

Slept for 209 minutes.

[brazospearl]

Welcome, Cool side! You've come to the right place to learn what you need to know to improve your health and your life. Stay calm, read all you can here, and get ready to be amazed. I'm still relatively new at this, but there are many here who are quite experienced and can give you excellent advice. The questions Snips posted about what to ask your doctor are excellent, and PSP's suggestion about why you might need BiPap is also a great idea. That said, read, read, read here, and ask all your questions; we'll help any way we can.

[Coolsideofthepillow]

Thanks all for the warm welcomes!

[Pad A Cheek]

Hopefully they will get your equipment soon. It does not hurt to call the doctor's office and let them know that you are anxiously awaiting your equipment. Those kind of patients are often the ones that will have the best outcome, and remain compliant with their treatment.
The DMEs should be calling you anytime to let you know they are ready to schedule your set up. Do not hesitate to give a little nudge to any of your caregivers to get the best possible CPAP and mask FOR YOU.
You are the one who will benefit from your assertiveness.

Welcome

Karen

[Coolsideofthepillow]

I have had an autosv bipap for the past 1.5 years. I have tried different masks, pillows, etc. and nothing works! The reason being that I am on the max pressure the machine can get too. During the ramp phase I am fine, but once that's over and I have tossed onto my side the leaks start. Last night I placed a pillow on my side and DW on the other so I could not flip. Well after a while I kind of woke and thought wow it worked it must be 5am. I turned and my clock said 11pm. 1 hour!!! I took the mask off. Was I in a true deep sleep?

I have had Apnea apparently my entire life even when I was in shape and athletic. Once out of college I packed on the pounds and became relatively sedentary. When I try to lose its difficult.

1.5 years ago the doctor said that I do not sleep so my metabolism shuts off at night. The doctor also said I never go into rim, and that I actually go into one of the phases of sleep for under an hour a night. He was surprised I had good motor functions. To be honest the wife and I were freaked out. So a 7k machine and three masks later and I still don't wear it. My wife is very concerned and she Dosent sleep either now because she listens to my breathing patterns subconsciously to make sure I don't stop breathing. . On the other hand I can put the mask on and just lay there.

Now we have our first child. He is 9 months and I really want to get this under control for him. I have been to the dentist and doctor this week and they both commented on how large my tonsils were. They are huge. Have been all of my life. Fact is because my apnea is so severe I am not a surgery candidate due to the anesthesia.

I am at a loss now. No clue what to do.

Officially depressed over this.