An Old Noobie needs some advice

Greetings everyone.

I sure like the forum. There's plenty to read and learn from.

I am new to the board. I apologize for being so long winded but I feel that the whole history is needed to get the right information.

I have been trying to use CPAP for a long time, like 2 years but unsuccessfully. I'll give a little history.

I haven't slept well for may years. The VA did a sleep study in early 2010 which showed Moderate OSA, I don't recall the numbers. During the study, I was unable to sleep at all on my back so they said the results were not sufficient to set a prescription so the gave me a System One RemStar BiPAP Auto with Bi-Flex (750P) to use for a week or so.

I was sick and tired of being sick and tired. I was excited to get the CPAP machine. My Father-in-Law loves his CPAP. I thought I would no longer be tired all the time.

After the week with the BiPAP, the VA gave me a System One RemStar Auto with A-Flex (550P) and set a pressure of 4-11. The first day I called them because the 4 was too low to start with and the 11 seemed too high, it would wake me as soon as it got there. They set the low pres. to 6 but left the high press at 11. I couldn't get used to the high setting so I stopped using the machine. I got the high press set to 10 finally and managed to use it some but I still had a LOT of trouble using it. The more nights in a row I tried to use it, the less time per night I kept it on so in a week I would quit using it again. I was truly getting better sleep without it.

I then got a different person at the VA that would at least listen to what I thought. She gave me a System One RemStar Pro with C-Flex+ (450P) which is an APAP. I like it better but was still not able to use it for more then a few days in a row without a pause. I still felt better not using the machine. I tried it for a few weeks then put it away for a year.

I recently got health insurance so I started seeing the sleep people at the University of Minnesota. After seeing them, tried using the APAP again and now have about two weeks of nightly use. My problem is that I have a hard time keeping it on all night. I get a runny nose, cough, sneezing, etc. I discovered through another thread here that all distilled water is not really pure distilled water. Unlike a still, the CPAP Humidifier doesn't have a way for impurities in the water to vent or escape so you breath everything that's in the water. I was using Wal-Mart Distilled water and it says it's "Processed by: Steam Distillation, Microfiltration, Ozonation". I got some water from Target that says it's "Processed by: Steam Distillation" and thats all. Now the runny nose, cough and sneezing have stopped. Now I need to start focusing on the setting of the machine.

I still have the APAP. It's set to start at 6 and peek at 10. I suspect that I need the upper limit to be higher based on my limited knowledge of the readings. Any suggestion or advice would be greatly appreciated. I will be doing another sleep study next week. I'll post what they tell me.

I also should mention that I am using the SleepyHead software. Here is what I did last night. It seems like every time the AHI goes up, I wake up and usually remove the mask, last night I kept it on. I use a RESmed Quattro mask. They tell me I'm a mouth breather.



I guess the image won't show up here so here's a link to it. http://www.brontoserver.com/gallery/bart001.jpg

I am short on time but the 55 Clear Airway events bug me.

Is there any history of centrals in any of your sleep studies?

Most of your AHI is predominantly Clear Airway events and pressure increases won't fix those and in fact can actually make them worse.

The machine won't increase the pressure in response to Clear Airway events because the airway is already open. It only increases pressure in response to obstructive events when the airway is trying to collapse. Looks like you need the pressure for the obstructives and the pressure isn't going to help the Clear airway events.

Google Complex Sleep Apnea....mixture of central and obstructive sleep apnea.

What is the AHI breakdown....Clear airway index....obstructive apnea index...Hyponea Index
Is it always mostly CA? If always over 5 CA index...your doctor needs to be made aware of this.

In the meantime, if it were me...I would reduce the maximum pressure to see if the CA events reduce...and hopefully not increase the other components of the AHI to above 5..
You may need a different type of machine beyond cpap and apap.

i used to be the same way, looking for excuses to not put it on or reasons to take it off. a trip to the ER taught me that this baby is life saving equipment that i simply must use every single night. i hope you don't learn the lesson that way. as silly as it sounds, the thing i taught myself was when you feel like taking it off, turn over and go back to sleep with it still on, even if you have to ramp down. it works. every time you take it off or leave it off, it is that much harder to put it on the next night. the doc knows your medical history. tell him about the little reasons it has to come off and see if he has any ideas.

Pugsy wrote:What is the AHI breakdown....Clear airway index....obstructive apnea index...Hyponea Index
Is it always mostly CA? If always over 5 CA index...your doctor needs to be made aware of this.

I don't understand what your asking here. The CA was 55, the OA was 5 and the H was 18.

Is there a graph or something you want to see?

greatunclebill wrote:i used to be the same way, looking for excuses to not put it on or reasons to take it off. a trip to the ER taught me that this baby is life saving equipment that i simply must use every single night. i hope you don't learn the lesson that way. as silly as it sounds, the thing i taught myself was when you feel like taking it off, turn over and go back to sleep with it still on, even if you have to ramp down. it works. every time you take it off or leave it off, it is that much harder to put it on the next night. the doc knows your medical history. tell him about the little reasons it has to come off and see if he has any ideas.

I honestly do appreciate the feed back but I have to say that I expect treatment to make me feel better, not worse. Having used the machine for 12 consecutive days, I am so severely incapacitated I don't even feel safe driving a car. I can't focus or concentrate on anything.

I think I have adapted to a degree to sleeping without the machine by only sleeping on my side. I did that for years before being diagnosed with OSA. I get sleep but wake up every 30-40 minutes to roll over because my arms fall asleep.

I will be having another sleep study next week unless something comes up. I would guess we will go over all of my data with my Doctor at the beginning of the study.

The large number of CA's does concern me, I see a lot of them just ahead of the AHI going up every time.

Hi bartinstine,

I sent you a PM.

You showed the event tab numbers..those are for the whole night. I wanted to see the hourly average which is the index.
On the detail tab (in front of the event tab) is the total AHI along with a separate index for each of the components that make up the AHI... Hourly index is what I was asking about. Not over the whole night totals.
I saw that the AHI was 9.84 but I couldn't see the other indexes.
Click on the details tab..look at the colored bar graphs and you will see each individual index.
I especially wanted to see the Clear Airway hourly index.

Runny nose, cough etc. could be because your humidifier isn't set right for you. I get those symptoms if my humidification setting is too low.

The more you keep your mask on, the easier it becomes to keep your mask on. Ideally you should wear it every time your sleep or nap. If you can't keep it on, take it off, get up, relax quietly (no TV/computer) for 1/2 hour or so, and then when you're ready, try again. That's better than sleeping without therapy.

I would also be concerned about your clear airway events and discuss them with your doctor.

Just guessing: but I see by the graph, he slept for 5.25 hours, giving an average hourly CI of about 10.4.
Still not really good.

Pugsy wrote:You showed the event tab numbers..those are for the whole night. I wanted to see the hourly average which is the index.
On the detail tab (in front of the event tab) is the total AHI along with a separate index for each of the components that make up the AHI... Hourly index is what I was asking about. Not over the whole night totals.
I saw that the AHI was 9.84 but I couldn't see the other indexes.
Click on the details tab..look at the colored bar graphs and you will see each individual index.
I especially wanted to see the Clear Airway hourly index.

Hi Pugsy

Thanks for taking an interest. That goes for everyone else as well.

I hope this is what you want.


http://www.brontoserver.com/gallery/bart002.jpg

JointPain wrote:Runny nose, cough etc. could be because your humidifier isn't set right for you. I get those symptoms if my humidification setting is too low.

The more you keep your mask on, the easier it becomes to keep your mask on. Ideally you should wear it every time your sleep or nap. If you can't keep it on, take it off, get up, relax quietly (no TV/computer) for 1/2 hour or so, and then when you're ready, try again. That's better than sleeping without therapy.

I would also be concerned about your clear airway events and discuss them with your doctor.

Thanks for your interest, I did get that problem solved. It was only present when I would use the nasal pillow, never the mask. I changed to the pure distilled water and the problem stopped entirely. It's the only change I have made in the last 5 days.

Do you have any secrets for Joint Pain? My wife and I both have trouble with knee and hip pain.

Yep, that was what I was wanting to see. I couldn't see enough into the event graphs to get a good idea.
The Clear airway index is not horrible but it is higher than I would want to see.
These may or may not be the types of centrals that we worry about. I don't have the time to go into the long explanation but for some people the pressures of cpap therapy actually trigger centrals. You may or may not be one of those people.

We would like to see the overall AHI to be 5 or less. If you do happen to be one of those people that your cpap pressure is actually triggering centrals (if your clear airway events are true centrals) then one needs to find a pressure that will effectively deal with the obstructive events and not trigger the centrals. We are limited with the data that the machine gathers. It only has one measuring dimension and to be truly evaluated we need other dimensions that the machine cannot do.

So your doctor needs to be aware of what you are seeing here and let him determine how much these are worrisome or not. In the meantime about all you can do is see if you can reduce your pressure and see if that will help reduce the clear airway events without causing the obstructive apnea events to increase. I would start with reducing the maximum pressure by 1 cm and see what happens. So when using APAP we use a severely limited range or switch over to cpap mode.

Something I should have thought to mention is that I have always been bothered by things like soap and shampoos with perfume or conditioners in them. I have also found that chlorine in water makes me ill. I only drink Reverse Osmosis water now. I also seem to react badly to almost all prescription medications I have tried. I suspect the purity of the water I need to use in the CPAP humidifier is relevant to these intolerances.

A quick example would be when my wife bought a new brand of laundry detergent. It took me almost a week to figure out to ask her if she made a change. My feet were itching like crazy. The bottle said Free and Clear but it had a brand name fabric softener added that was not free and clear. She rewashed all my socks and the itching was gone over night.

Pugsy wrote:So your doctor needs to be aware of what you are seeing here and let him determine how much these are worrisome or not. In the meantime about all you can do is see if you can reduce your pressure and see if that will help reduce the clear airway events without causing the obstructive apnea events to increase. I would start with reducing the maximum pressure by 1 cm and see what happens. So when using APAP we use a severely limited range or switch over to cpap mode.

I'll definitely be letting my doctor know what's going on here. They read the card anyway when I get there.

How would I turn the machine down a point? I have a manual here but it turns out that it's for my old CPAP machine.

If I put the machine in CPAP mode, does it just start at the low setting and work it's way up to the high limit and stay there? If so, is that desirable over allowing the machine to lower the pressure when it can?

I will send you a link for the new provider manual for your machine in a few minutes.

Straight cpap has no variable pressure beyond what you might be using with the ramp (if you use it). So you need to figure out a good compromise ahead of time....if going that route...I would start cpap at the average pressure you have been seeing on the APAP reports...not the 90% pressure. Then evaluate the balance of obstructives and centrals.

For some reason I cannot see your images now (and saw them earlier) and now your host site won't load for me. So I can't remember what your pressure settings were and what your average pressure was.

Your range wasn't all that large though. If it were me..I would just reduce the maximum one cm and see what happens. Seem to remember max at 10...I would just try max at 9 cm. Keep changes simple and easy to evaluate response.