ASV Help Needed - See Page 3 AHI from 1-4 up to 50+

Hi Mr. Bill,

Thank you for your feedback. Since using the ASV machine I have only had a full face mask and I only sleep on my side. I found the nasal mask to not be very helpful and I'm not a mouth breather. Sleeping on my back causes my throat to close regardless of the pressure on the machine. I have Central Apnea and Hypopnea but have not been diagnosed with Obstructive.

Regarding the humidity, I have tested the settings but find that either 1 or passive is best for me. 2 was a bit much and I have also tried the machine without the humidifier.

I'm going to call my doctor in the morning and let him know about my latest numbers. I'm very concerned with this development.

NJSleepless wrote:This is excellent advice Ken. MY concern is that I am still in the trial/compliance stage of my insurance and am uncertain if I can change the settings without violating the trial period. I am absolutely going to investigate this further though.

I was just thinking about your compliance situation, and you may want to check with the insurance company as to what they are looking for...I do believe they are looking solely to see that that machine is being used regularly, but are not looking at the pressures and settings. I think most have some kind of minimums such as at least 4 hours per night for at least 21 nights out of the past 30. It appears like you are doing that so I dont think that will be an issue, but you may want to call and ask them.

i bring that up because an AHI of 50 is not something I'd want to be sleeping with consistently and if they're only verifying that you are using it and they're not looking at the setting, then I'd be wanting to do what it takes to get my AHI down. Those are some pretty scary figures.

Regardless, I'm glad you're calling your doc, that's your best choice. Let us know how it goes. If you don't get any help there, then like a lot of us you're on your own and may be time to make your own adjustments.

As always, remember that I answer the question "What would I do if I were in your situation?". I am not a health professional. I am not an expert is sleep medicine. I am just someone who has over 20 years of experience struggling with sleep issues. I also a neurological problem that causes my central sleep apnea. So, I've had the chance to learn more than I wanted about sleep.

So, with that as my basis, I must say I definitely agree it is time to see your sleep specialist. Such a significant change seems to indicate something fundamental has changed ... and might require another sleep study. I sure would want my sleep specialist to help sort out the problem.

That being said, it also seems as if your therapy need has changed. You appear to be staying at a higher pressure need than when you started. I would guess - and you might ask your sleep specialist if this might be the case - that your body has somehow adapted to the pressure. You might need a lower pressure. I would also guess that another sleep study might be in order for you.

It is possible - though not likely - that you have some underlying neurological problem. That much of a change would also indicate you would have other symptoms that would be present ... and you would be complaining about them. Since that is not the case, it seems more likely that somehow your body has adapted and you now need a new titration study.

What I do observe is that the machine things that (1) leaks are not a big issue, (2) patient triggered breathing has dramatically decreased, and (3) your CA and Hypopnea events have dramatically increased. I would be surprised if you felt well with that combination.

I wish I had some other sage advice at this point. But nothing jumps out at me.

Here's hoping your sleep doctor will be able to help.

NJSleepless wrote:The past two weeks - downright terrible! I don't have a sleep doctor, I had my GP order the sleep studies and contact the DME. So I'm uncertain who to call regarding these new developments. All I know is that the pressure on my machine appears to have dramatically increased. When I awake in the middle of the night to use the bathroom it's blowing so much stronger than I'm used to.

I’m feeling very poor in the morning and throughout the day. What do I do to get my prescription adjusted? Call the DME, my GP or do I need to go in for another sleep study with my machine to have the settings adjusted?

and

JohnBFisher wrote: So, with that as my basis, I must say I definitely agree it is time to see your sleep specialist. Such a significant change seems to indicate something fundamental has changed ... and might require another sleep study. I sure would want my sleep specialist to help sort out the problem.

I agree with JohnBFisher that it's time to call in a specialist---preferably one with ample experience treating CSA and who is knowledgeable about ASV machines. Unfortunately, NJSleepless says he doesn't have a sleep doctor: the PSG was ordered by his GP, who then wrote the script. So in that case, perhaps the first thing to do is to talk to the GP and get a referral for a sleep doc with both expert knowledge and professional experience in treating CSA and who understands how ASV machines actually work. And since sleep specialists often are booked weeks to months in advance, it may also be time to ask that GP to help navigate that problem as well: Perhaps the GP's office could call an appropriate sleep doctor's office and explain just how quickly the situation has deteriorated and that you really should not be expected to wait weeks or months for a consult that needs to be done very soon.

Best of luck to NJSleepless in finding a sleep doctor who is knowledgeable enough and willing to help.

I want to update everyone on what's going on. I called both my doctor and my DME today and two things are happening.

First, I am getting a new mask and it should be here Friday.

Second, I am seeing my GP on Friday as well to request a ne Titration Study with my ASV.

Third, I am following robysue's advice and requesting a referral to a sleep specialist. I am very fortunate that my GP is also my cardiologist and a family friend and he will be able to get me into an appointment with a qualified physician sooner than later. I think a new study is key at this point though in determining what is happening prior to an appointment.

I'm going to review my data from last night after I walk my dog. I had a tough time falling asleep and was in bed reading and watching tv until about 3am but I had the machine on during my awake and sleep times so I'm going to look at the data and the Wave charts for last evening. I ended up adjusting the mask again last night and think I had a better seal as well so I’m interested to see the impact that had..

Hmmmm... I missed the fact that you had only a GP. Sorry. Yesterday as one of my "foggy" days. Yup, that's my excuse and I'm sticking with it!

A suggestion about getting a referral:

First, regardless of the specialty, try to find a doctor that is board certified in sleep medicine. Lots hang up a shingle, but don't know all the ins and outs.

Second, regardless of the specialty, experience in the system makes a huge difference. If the doctor is very busy it often indicates he is good and has a lot of patients and referrals.

Next, if your doctor (your GP) thinks your issue might be heart related, then you will want to see a sleep specialist who started life as a pulmonologist. They are better equipped by training and experience to deal with heart related issues.

However, if you doctor thinks your issue might be neurological in origin, then you might want to see a sleep specialist who started as a neurologist. They are better equipped by training and experience to understand how central sleep apnea can be driven by problems with the central nervous system.

Finally, if your issue is (as it appears to be) due to complex sleep apnea, then either specialty will do. However, in this case it is very important to have a doctor that is board certified in sleep medicine, since some of the understanding about complex sleep apnea is very recent. A doctor that is "out of date" would not be a good option, in that case.

By the way, you probably should also interview the sleep lab before you have another ASV titration. See how many they do per month. You want a sleep lab that has a LOT of experience doing this. You will also want a sleep technician with similar experience. Complex sleep apnea requires careful monitoring to track down the best settings for you.

Anyway, these are just some suggestions based on my own experience and how I decided what path to take in my own situation. Hopefully, it will help you as you move forward. Best wishes!

JohnBFisher wrote: Next, if your doctor (your GP) thinks your issue might be heart related, then you will want to see a sleep specialist who started life as a pulmonologist. They are better equipped by training and experience to deal with heart related issues.

However, if you doctor thinks your issue might be neurological in origin, then you might want to see a sleep specialist who started as a neurologist. They are better equipped by training and experience to understand how central sleep apnea can be driven by problems with the central nervous system.

This all started because of my hypertension and ventricular tachycardia. That said, I also have nerve damage and misfires in my lower extremities as the result of four major spine surgeries. So that may be something to investigate as well. I had a brain mapping study performed 9 years ago and am attempting to get the results of that because it suggested I had a neurological disorder that I dismissed due to lack of symptoms.

JohnBFisher wrote:By the way, you probably should also interview the sleep lab before you have another ASV titration. See how many they do per month. You want a sleep lab that has a LOT of experience doing this. You will also want a sleep technician with similar experience. Complex sleep apnea requires careful monitoring to track down the best settings for you.

My two studies were both performed at an excellent division within the Princeton, NJ Medical Center. I have complete confidence in them and the studies were conducted quite professionally and in depth. The rooms are monitored at all times and the equipment they use is state of the art. I am very confortable going back to them.

I will let everyone know the outcome of my upcoming appointment as well as what new mask is sent to me and how that works out. I'm very grateful for the support.

I’m happy to announce that my DME sent me a new mask today and when I see my doc Friday I will be able to provide my data via the Encore Pro 2.5 software. I suspect a new Titration Study is my smartest option. While I wait for that to happen I have to say I am looking forward to no more nose bridge irritation and I am also curious to see if my data changes with less likely leakage to occur. Obviously a 50 AHI will not drop dramatically due to a mask but it’s one small step in getting better therapy in the big picture!