Where did all the help GO??

zoocrewphoto · Post by **zoocrewphoto** » Fri May 10, 2013 4:25 am

racprops wrote:
-5- I find it hard to believe you did not have a titration study, especially with your complex case, or did I miss this in your postings?

I had two sleep studies, on their systems, none with the machine I got.

Titrations are usually done with the equipment at the lab which can be operated remotely. This allows them to change the pressures without disturbing you. If they prescribed an ASV machine, they most likely used an ASV machine to titrate you. That's how they figure out what will work for you before sending you home with a machine.

I don't know of anybody who has had a study done with their own machine. That would mean that the sleep tech has to enter your room and manually alter settings to do the titration.

Also, your doctor may not be as bad as you think. Keep in mind that this is all new and frustrating for you. Probably a bit scary too. So, it is hard to judge everything fairly when you want everything to be simple and work easily.

racprops · Post by **racprops** » Fri May 10, 2013 4:37 am

Some have said they were checked out with their own machines..I thought he might be asking that.

Please reread my complaints about the Doctor...

He maybe good but he is also a game player and is trying to make this a little TOO mystique...:

Only his people can set it up.

It is too complex and dangerous for anyone else to set up.

Bring the whole system to the office because he did not want me to know about the SD Card...

Rich

caffeinatedcfo · Post by **caffeinatedcfo** » Fri May 10, 2013 4:41 am

Sheriff Buford wrote: This country voted this crap in and I knew slowly but surely, folks here will start complaining about it. It's gonna get worse.
Sheriff

Although, I'm not convinced "WE" voted this crap. Rather, a group of good 'ol boys met late one night over brandy and cigars and decided how they could systematically install a form of feudal law in America. But ... that is a completely separate OT thread for a future date...

sawinglogz · Post by **sawinglogz** » Fri May 10, 2013 4:42 am

zoocrewphoto wrote:Titrations are usually done with the equipment at the lab which can be operated remotely. This allows them to change the pressures without disturbing you. ... I don't know of anybody who has had a study done with their own machine.

At the sleep lab they had clinical machines that, as you describe, can be operated remotely. They could also be switched between CPAP, Bi-Level, and ASV, unlike a home unit. The first study was on a ResMed, the second on a Respironics.

After being titrated on the Respironics ASV, it looks like I'm getting a Respironics machine for home. Not the exact same machine (in fact, mine will be quite a bit newer), but the same manufacturer, so it should perform the same.

With ASV, I would have been a little surprised if they titrated on Respironics (5 parameters) and given me a ResMed (4 parameters).

gomer · Post by **gomer** » Fri May 10, 2013 11:31 am

racprops wrote:Another point:

From what I have read, one of the major problems with sleep apneas is the desaturation of O2 from the blood.

When I suggested I wanted to get a recording O2 meter he said no.
............................

I went against his orders and got one and although he was right, I am not in any danger…I do every once in a while drop below 85% it is not for long and is safe.

I do sleep better knowing that I am covered and not putting myself in serious danger.

Rich

-1- Anyone can buy a good recording O2 meter, NO Rx needed & not expensive either.

-2- against Drs orders... I have a hard time swallowing the concept that your doctor "ordered" you NOT to get a Ox meter. Your doctor may have felt it was not necessary and said no to Rx-ing for insurance to pay for something he felt, in his opinion, was not warranted.

racprops · Post by **racprops** » Fri May 10, 2013 11:35 am

Well I am self pay so there was no question of getting a prescription...

And yes he did say no and I do not need it.

I asked him about my O2s during the study and the report showed them dropping down the around 84 AVG.

I ask if during the time of that AVG. did the O2 drop lower and for how long and he would not reply.

Rich

gomer wrote:
racprops wrote:Another point:

From what I have read, one of the major problems with sleep apneas is the desaturation of O2 from the blood.

When I suggested I wanted to get a recording O2 meter he said no.
............................

I went against his orders and got one and although he was right, I am not in any danger…I do every once in a while drop below 85% it is not for long and is safe.

I do sleep better knowing that I am covered and not putting myself in serious danger.

Rich
-1- Anyone can buy a good recording O2 meter, NO Rx needed & not expensive either.

-2- against Drs orders... I have a hard time swallowing the concept that your doctor "ordered" you NOT to get a Ox meter. Your doctor may have felt it was not necessary and said no to Rx-ing for insurance to pay for something he felt, in his opinion, was not warranted.

zoocrewphoto · Post by **zoocrewphoto** » Fri May 10, 2013 12:05 pm

racprops wrote:Some have said they were checked out with their own machines..I thought he might be asking that.

Please reread my complaints about the Doctor...

He maybe good but he is also a game player and is trying to make this a little TOO mystique...:

Only his people can set it up.

It is too complex and dangerous for anyone else to set up.

Bring the whole system to the office because he did not want me to know about the SD Card...

Rich

This is pretty standard. Some doctors don't mind if you check your data, but even those rarely offer that information. Pretty much every doctor works with the assumption that patients do not know how to change settings, and that the DME or doctor will do it.

THat said, it is clear that you don't know what settings you need. So, why do you think he is playing games by telling you that you should not be setting it. These are complicated settings.

Also, you said the titration did well, and then it wasn't working as well at home. This is NORMAL. For example, my titration went well. My sleep tech chose a full face mask for me when I said I need to breathe through my mouth. She adjusted it, put it on, and it fit perfectly. I slept 5 hours straight. When I got my machine, I asked for the same mask, and it took me 6 WEEKS to get decent at fitting my own mask. Same model. Even now, a year later, I have some nights where it takes me 5-10 tries to get it fitted correctly without leaks. That's just the way it is sometimes. It doesn't mean that anything is wrong. We just don't have the same level of experience as the sleep tech.

Your settings from the doctor could be perfect, but you didn't give them more than 2 days to try them. If you were having mask issues, that would make it harder. And an ASV machine takes some adjustment time. YOu are being impatient and decided that since it wasn't perfect in 2 days, you would start changing things.

Also, is there is a specific reason that you are using a total face mask, rather than a full face mask? That may be making things harder for you since you are not comfortable with having a mask on your face anyway. Very few people use this type of mask, and usually only if the other masks don't work well for them.

jdm2857 · Post by **jdm2857** » Fri May 10, 2013 12:19 pm

Just a thought.

You said that you took a sleeping pill at your titration study. Have you tried
doing the same at home? I'm not suggesting that you use a sleeping pill
long term, but you might try to duplicate the conditions of your titration
study (as best you can) and see what happens.

jdm2857 · Post by **jdm2857** » Fri May 10, 2013 12:26 pm

zoocrewphoto wrote:I don't know of anybody who has had a study done with their own machine. That would mean that the sleep tech has to enter your room and manually alter settings to do the titration.

At my sleep study (at the research sleep lab of a major university hospital), I noticed that some rooms were
outfitted with a small opening (maybe 6" x 6") into the hallway. The patient's machine was placed on a cart
in the hallway with the hose running through the opening into the room. The tech could then make adjustments
without entering the patient's room.

racprops · Post by **racprops** » Fri May 10, 2013 12:42 pm

This is pretty standard. Some doctors don't mind if you check your data, but even those rarely offer that information. Pretty much every doctor works with the assumption that patients do not know how to change settings, and that the DME or doctor will do it.

I do understand that he would not even allow the DME supplying my system to make the adjustments...he insisted I bring it to his office, causing a delay of a day and a trip of 50 miles total for a 10 minute wait

That said, it is clear that you don't know what settings you need. So, why do you think he is playing games by telling you that you should not be setting it. These are complicated settings.

OK. Consider that my machine has only 8 settings:

This is all the setting it has:

(1) Max Pressure

(2 & 3) EPAP Min and Max

(4 & 5) PS Min and Max

(6) BPM (Usually auto)

(7) TI if not using BPM on auto.

(8) Flex type/BiFex settings 1, 2, 3.

And a few lock outs and alarms...

With the main ones being EPAP and PS (which seems to be IPAP)

NOT all that complex..

Also, you said the titration did well, and then it wasn't working as well at home. This is NORMAL. For example, my titration went well. My sleep tech chose a full face mask for me when I said I need to breathe through my mouth. She adjusted it, put it on, and it fit perfectly. I slept 5 hours straight. When I got my machine, I asked for the same mask, and it took me 6 WEEKS to get decent at fitting my own mask. Same model. Even now, a year later, I have some nights where it takes me 5-10 tries to get it fitted correctly without leaks. That's just the way it is sometimes. It doesn't mean that anything is wrong. We just don't have the same level of experience as the sleep tech.

We had a lot of trouble, every time I started to drop off the machine would react and push a lot of air and wake me up...
I had a hard time sleeping..

Your settings from the doctor could be perfect, but you didn't give them more than 2 days to try them.

I found I could not breath with his settings and pressure at first, so once the ramp feature finished and it would be at full pressure I would wake up suffocating...and if I did not wake up somehow I would loss the mask. So it WAS NOT working, so it had to wrong.
I was NOT getting a treatment so drastic steps needed to be taken.

If you were having mask issues, that would make it harder. And an ASV machine takes some adjustment time. YOu are being impatient and decided that since it wasn't perfect in 2 days, you would start changing things.

I was not thinking about it being perfect, I was thinking I need to use this machine, later as I read the reports I worried that I was getting such high AHIs most over 30. My idea did work I lowered the pressure and was able to get more used to the machine AND the mask, later I found I can just about handle the full 9/10cm suggested...

Also, is there is a specific reason that you are using a total face mask, rather than a full face mask? That may be making things harder for you since you are not comfortable with having a mask on your face anyway. Very few people use this type of mask, and usually only if the other masks don't work well for them.

I use respirator filter masks in my work and HATE the pain I get on the bridge of my nose, so I asked for that mask. I like it mostly, it is a little painful in spots but I am also getting used to that as well.

zoocrewphoto · Post by **zoocrewphoto** » Fri May 10, 2013 1:24 pm

racprops wrote:

OK. Consider that my machine has only 8 settings:

NOT all that complex..

That's a lot more than most. And you have those extra settings because your situation is more complex.

For example, aren't you having trouble exhaling at 9 or 10? That's really not that high. A lot of people are exhaling against much higher pressure. So, you must have some issue that is making it harder for YOU to exhale. I have asthma and a narrow airway, but my pressure is 11-17 with EPR of 2. That means, my lowest pressure ever for exhaling is 9 and goes as high as 15. I do not use ramp, so I start out at 11.

We had a lot of trouble, every time I started to drop off the machine would react and push a lot of air and wake me up...
I had a hard time sleeping..

This does not sound normal. Pressure doesn't normally go up instantly just because you fall asleep. Especially if you were at the study. The pressure should have gone up very slowly with them checking data at every setting. You really need to post the graphs of that night.

I found I could not breath with his settings and pressure at first, so once the ramp feature finished and it would be at full pressure I would wake up suffocating...and if I did not wake up somehow I would loss the mask. So it WAS NOT working, so it had to wrong.
I was NOT getting a treatment so drastic steps needed to be taken.

A couple things. First, most feelings of suffocation are of not getting enough air, which means the pressure is too low. Difficulty in exhaling is different. Which is it for you? Also, are you talking about the titration or at home. There should not have been ramp at the titration. They start it low, and THEY move it up as they need to. They would not have a reason to have the machine doing ramp. This also doesn't make sense since you said it would go up as soon as you fell asleep. Ramp is for a set amount of time. It would not change when you fall asleep.

Now, just because you are having trouble breathing at the prescribed pressure does not mean that it is not working. It means that it hasn't had time to work. The correct pressure is not determined by what is comfortable. It is determined by how well it prevents breathing events. That is what the titration does. It You may need time to adjust to that pressure, but lowering it until is comfortable may not give you any therapy. Also, just because you struggle with it today doesn't mean you can't use it in a month and have good therapy from it. Don't rule it out just because it is difficult right now.

I was not thinking about it being perfect, I was thinking I need to use this machine, later as I read the reports I worried that I was getting such high AHIs most over 30. My idea did work I lowered the pressure and was able to get more used to the machine AND the mask, later I found I can just about handle the full 9/10cm suggested...

Well now I am really confused. If you are able to handle the 9/10 pressure that was prescribed, what are you currently struggling with? Were those not the original pressure settings? And you can breathe with them now?

NateS · Post by **NateS** » Fri May 10, 2013 1:42 pm

racprops,

Could you please use the quote functions?

When you mix what others say in with what you say, it seems as if you are contradicting yourself, or even arguing with yourself within the same post.

In addition, when you don't use the quote function, we have to go up above, sometimes to a back page, to try to figure out who you are replying to.

I realize you sometimes try to distinguish with bold but it is still very confusing, because many posters use partial bold for emphasis within their own posts.

Thanks,

Nate

sawinglogz · Post by **sawinglogz** » Fri May 10, 2013 2:00 pm

zoocrewphoto wrote:
racprops wrote:We had a lot of trouble, every time I started to drop off the machine would react and push a lot of air and wake me up...
I had a hard time sleeping..
This does not sound normal. Pressure doesn't normally go up instantly just because you fall asleep. Especially if you were at the study. The pressure should have gone up very slowly with them checking data at every setting. You really need to post the graphs of that night.

I'm guessing he was having a transitional apnea (totally normal), which the machine reasonably thought was a central apnea (since it is, albeit harmless), so it boosted pressure to make him breathe.

I had this happen a few times during my titration. I would have found it pretty irritating myself, except that those transitional apneas have been waking me up lately, so it wasn't any worse.

JohnBFisher · Post by **JohnBFisher** » Fri May 10, 2013 2:10 pm

sawinglogz wrote:... I had this happen [have the machine respond to a transitional apnea] a few times during my titration. I would have found it pretty irritating myself, except that those transitional apneas have been waking me up lately, so it wasn't any worse. ...

THIS is exactly why I say you MUST give your body and the ASV therapy time. You need to adjust to things like this. It IS normal. It DOES happen. And for a while it WILL disturb your sleep. But after just a few weeks of experiencing that you will no longer notice when it happens.

I would stop breathing for a MINUTE or MORE at a time when I fall asleep. My old M Series Auto BiPAP would think I was no longer breathing and just STOP. [Yes, I know you can change that setting. And I did change it. But the problem was that regardless of the setting, I would just stop breathing. And stopping breathing for more than a minute is NOT a good thing and needs to be addressed.]

Now, because I'm adjusted to the therapy, I never notice when it happens. My ASV therapy data says it does occur. But the ASV unit tackles it .. all without disturbing my sleep ... BECAUSE I TOOK THE TIME TO ADJUST to the ASV therapy.

racprops · Post by **racprops** » Fri May 10, 2013 2:10 pm

zoocrewphoto wrote:
racprops wrote:

OK. Consider that my machine has only 8 settings:

NOT all that complex..

That's a lot more than most. And you have those extra settings because your situation is more complex.

For example, aren't you having trouble exhaling at 9 or 10? That's really not that high. A lot of people are exhaling against much higher pressure. So, you must have some issue that is making it harder for YOU to exhale. I have asthma and a narrow airway, but my pressure is 11-17 with EPR of 2. That means, my lowest pressure ever for exhaling is 9 and goes as high as 15. I do not use ramp, so I start out at 11.

I do seem to be rare...I have complex apneas caused by the pressure, so I could not use a CPAP, so it seems I stop breathings due to CPAP caused centrals..so yes I cannot breath.

We had a lot of trouble, every time I started to drop off the machine would react and push a lot of air and wake me up...
I had a hard time sleeping..
This does not sound normal. Pressure doesn't normally go up instantly just because you fall asleep. Especially if you were at the study. The pressure should have gone up very slowly with them checking data at every setting. You really need to post the graphs of that night.

As I was falling asleep I would stop breathing, (The sleep tech explained that to me)and the machine would react and start breathing FOR me, as I was not asleep nor awake this startled me and woke me up.

I found I could not breath with his settings and pressure at first, so once the ramp feature finished and it would be at full pressure I would wake up suffocating...and if I did not wake up somehow I would loss the mask. So it WAS NOT working, so it had to wrong.
I was NOT getting a treatment so drastic steps needed to be taken.
A couple things. First, most feelings of suffocation are of not getting enough air, which means the pressure is too low.

I think in my case it is my getting centrals and NOT even breathing...

Difficulty in exhaling is different. Which is it for you? Also, are you talking about the titration or at home. There should not have been ramp at the titration. They start it low, and THEY move it up as they need to. They would not have a reason to have the machine doing ramp. This also doesn't make sense since you said it would go up as soon as you fell asleep. Ramp is for a set amount of time. It would not change when you fall asleep.

your right there wasn't any during the sleep study so I was having a very hard time falling asleep and being waken over and over by the machine, when I got my home unit I tried using the 45 minute ramp feature to try to get to sleep before it reach it full pressure, it did not work.

Now, just because you are having trouble breathing at the prescribed pressure does not mean that it is not working. It means that it hasn't had time to work. The correct pressure is not determined by what is comfortable. It is determined by how well it prevents breathing events. That is what the titration does. It You may need time to adjust to that pressure, but lowering it until is comfortable may not give you any therapy. Also, just because you struggle with it today doesn't mean you can't use it in a month and have good therapy from it. Don't rule it out just because it is difficult right now.

Sorry but you misread me, I said it worked for a little while and allow me to get used to the machine and the mask, and to the pressure, (I worked it up slowly) I can now use the 9/10cm EPAP Min, and have been doing so for the past week.

I was not thinking about it being perfect, I was thinking I need to use this machine, later as I read the reports I worried that I was getting such high AHIs most over 30. My idea did work I lowered the pressure and was able to get more used to the machine AND the mask, later I found I can just about handle the full 9/10cm suggested...
Well now I am really confused. If you are able to handle the 9/10 pressure that was prescribed, what are you currently struggling with? Were those not the original pressure settings? And you can breathe with them now?

You and me both...The machine is for some reason hitting 23 CM pressures at odd times and doing other odd things...

I am losing ground as it now wakes me by making the mask fart, a nosily leaking... and some times it is running so low I wake and think it has failed or shut its self off.

I have almost NO obstructive apneas I am having Clear air and Hypopneas...lots of them....

Last night's report is 2.24.05 hours of sleep with a AHI of 25.99 that was 14.16 H and OB. of .42 and Clear air of 10.41.

I got two mask farts wake ups and one just woke up for no know reason.

I was up most of the night...

Hope this is easier to read...

Where did all the help GO??

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