Please help me I am so fustrated and alone

Hi,

I am a new user of this forum and just diagnosed with sleep apnea. I am so glad I found this forum as I have no idea what apnea comfortable or how to use my equipment etc. I hope that you could help me and make me feel like home I will try my best to contribute also to this great community. Please let me explain my problem and why I need your help.

I was diagnosed almost two weeks ago with obstructive sleep apnea with an AHI of 52 events/hr and a nadir of oxygen around 70%. I think all you know how miserable my life was (falling asleep almost everywhere feeling tired al the time etc., waking up at night 3-4 times, etc.) I was feeling so sad that when I learned, I had apnea made me happy and was wishing for the day; I will have my miracle CPAP machine.

I am a gadget person and like to use simple devices so I wanted to choose by myself of the CPAP machine I will buy. My doctor ( I am a Greek based in the UK) told me that he has a machine to suggest and a clinic to help me set up etc., but if I want to buy my machine I am on my own that he can not help me with set up apart from advice. Maybe this was my mistake anyway.

Anyway, I decided to buy the DreamStation AUTO CPAP machine with DreamStation Heated Humidifier and the Amara View Full Face CPAP Mask with Headgear. Please keep in mind that this device is not available in the UK, so I bought it through the US.

To make the long story short, The first night was great I was afraid that could be difficult to sleep, etc. , but I slept easily. I woke up once during the night because the pressure was too high for me 16 at the time but I used the ramp and fell fast for sleep again. Next day was AMAZING life-changing I never felt happier in my life I noticed in my Dream appear app an AHI of 18 I said that to the doctor and he told me that we need to aim for less than 5, it was first night lets see the stat in 2 weeks I said ok sound good.

Night 2. Even better AHI of 13 so it going down looks perfect Night 3 I had an important meeting, so I stay app late to create some stuff for my job I managed to sleep for only 3 and a half houres but next day everything was perfect again feeling great and had AHI of 13 again. But yesterday was a total nightmare.

Night 4. I didn't change anything in the machine I fell asleep and wake up in an hour with the same feeling I had when waking up from apnea... I chek the app AHI 45 !!! I said what the hell chek the mask again no linkage noticeable, and no display of a problem in the machine slept again and again in an hour I was awake.. again the same. I have no idea if the machine works while I sleep since it starts with 4 pressure and it suppose will move automatically to the correct level. Here I have to tell you that my doctor never actually subscribed me a right pressure.
I read the manual and looked at the trouble shots, but I can not find any reason this is happening. (I belive that the pressure doesn't increase at night) When I read the manual, I realized that a lot of setting are missing from my machine or are hidden to me. I think the people from the website that I order it in the US made some settings adjustment, but I don't I have no idea what adjustments they did.

Please is any user here on the same machine or problem to through some ideas what should I do and what should I check? I am very frustrated... 2 days in heaven and again in Hell.
PS. I also noticed that on night 4, and now the ramp button is not working. I mean it starts at 4.. but is not getting orange and doesn't seem that will progressively will put more pressure on. I don't know why. Maybe here lays the problem.

Thanks very much in advance for your time and for reading this. Please excuse my English as I am not a native speaker.

You are in the right place and will not be alone. I personally do not have that machine, so I can be of little help. Many others do you it and they will respond.
find the link here or search the net for sleephead software and installing(free). If you don't have a SD card reader on your computer get one.
With the above you can look at the detailed raw data and also show it to us, so we can provide guidance on settings
You can download the clinicians manual for you machine and the you can see and change all the settings
Starting pressure of 4 is usually considered quite low, I use 6 and yes you can tell the difference in as little as 0.2 for me anyway
The machine, if set correctly will go to the pressure needed to stop the apneas. If it was at 16 it either needed to be that high or the minimum setting was set too high. using sleephead can tell you which it is
Good news is that the machine has stored all the data from your past use and you can see what it was doing and why. get sleephead and a card reader.

You are on your way to understanding and owning you treatment!
Hang in there for people that use that machine to respond

Yes, I've had the same problems. My starting pressure was too low, my upper pressure was too low, and I could not adjust to any CPAP mask so my AHIs would sometimes show 30 events. My AHI before CPAP was 42. I starting using the Airfit P10 mask and it was a rough start, but once I got used to it, my AHIs dropped to around 4. I saw my sleep doctor and she increase my starting and ending pressures, and my AHI has now dropped to under 2 and sometimes under 1. Last night my AHI was 0.7.

I was struggling to sleep and that was the reason for the high AHI. As another member here taught me, you have more events and especially central apneas when you are between being awake and being asleep. I was previously spending most of the night in that "in-between" state. But now that I am adjusted and fall asleep pretty quickly, I usually have almost no central apneas, and sometimes maybe 1 or 2.

So my question to you is whether you are struggling to sleep some nights? That could explain the high AHI, especially on a night when you don't sleep for very long and you toss and turn. Hope you feel better soon.

And I should add that my insomnia got so bad that I had to see a psychiatrist for help.

I also have a DreamStation, by the way.

Christina

PoolQ wrote:You are in the right place and will not be alone. I personally do not have that machine, so I can be of little help. Many others do you it and they will respond.
find the link here or search the net for sleephead software and installing(free). If you don't have a SD card reader on your computer get one.
With the above you can look at the detailed raw data and also show it to us, so we can provide guidance on settings
You can download the clinicians manual for you machine and the you can see and change all the settings
Starting pressure of 4 is usually considered quite low, I use 6 and yes you can tell the difference in as little as 0.2 for me anyway
The machine, if set correctly will go to the pressure needed to stop the apneas. If it was at 16 it either needed to be that high or the minimum setting was set too high. using sleephead can tell you which it is
Good news is that the machine has stored all the data from your past use and you can see what it was doing and why. get sleephead and a card reader.

You are on your way to understanding and owning you treatment!
Hang in there for people that use that machine to respond

Just a note that the DreamStation auto CPAP and Sleepyhead are not currently compatible. You could use the DreamMapper app on your phone or tablet (or computer, I believe) to see how many events you are having and what kind of events they are. It won't show you any graphs or tell you what time of the night you're having the events, but it's better than nothing.

I can't help you with the technical stuff but want to encourage you to hang in there.
There are wise people on this forum who will support you.
They're patient with questions too which is lovely.
Hang in there.

One thing you may want to consider is enabling the OptiStart feature.

OptiStart is a new feature that, if turned on, will automatically start the therapeutic pressure at the 90% pressure average, provided from the previous therapy session. This allows the device to address any possible early-events that may occur during the course of sleep.

If you need a pressure of, say, 14 to be effective but your machine is starting at 4, it is going to take time for the machine to work its way through the 4-14 range and start becoming effective. During that time you will have very disrupted sleep and high AHIs. If you restart the machine or hit the ramp button the process has to start all over.

OptiStart will start the machine at a pressure it found generally effective last time you used it, which will enable it to zero in on an effective pressure much faster.

I am certainly not an expert but here is what I would do, given you have no medical assistance to adjust the machine.

This is just one of the many tutorials online that can tell you how to adjust the pressure setting. http://www.apneaboard.com/dreamstation- ... structions

I would use a setting of 10-11 to start - higher is not always better. I like a long ramp up (30 min) to that pressure so I can get to sleep.

I have had good success with the Amaraview mask- glad you chose that one. I am trying a different one now but would go back to the AV in a heartbeat.

Good luck- others on this board may have other suggestions.

I can help you with the Clinical manual so you can find out how to access all those areas that are not accessible now. Here is a link that if you scroll down to Section Three and follow the directions they will email one to you. http://www.apneaboard.com/adjust-cpap-p ... tup-manual

Have you heard of Dreammapper? It's a very basic program that works with your machine but from what I can tell they don't have it in your country yet. Here is the site and they will email when it is available. http://www.dreammapper.com/

If you have a windows computer there is a software program that you can use now called Encore Pro. Let us know and someone will help with a download.

The program we all like to use is Sleepyhead but at this time it doesn't work with DreamStation. Keep watching though because it is supposed to be working very soon.

Many times the APAP machines are set wide open at minimum 4 and maximum 20. These pressures often need to be brought closer to what you need. But it is difficult to know what you need without data. As far as the ramp not working, with a low pressure of 4 there is nothing to ramp to because the machine doesn't go lower than 4. I would increase your minimum pressure to 7 and check to see how your AHI does. I think it will probably need more but we need to know what your AHI is made up from. If it is Obstructive and Hypopnea then pressure will help but it doesn't help Centrals and can possibly make them worse. Do you know if your Sleep Study showed mostly Obstructive?

cmmarti3 wrote:

PoolQ wrote:r sleephead software

Just a note that the DreamStation auto CPAP and Sleepyhead are not currently compatible. You could use the DreamMapper app on your phone or tablet (or computer, I believe) to see how many events you are having and what kind of events they are. It won't show you any graphs or tell you what time of the night you're having the events, but it's better than nothing.

until the next version of SleepyHead (not sleephead) is out, the only option for detailed data on the dreamstation is encore. links to it can be found in recent posts, I don't have one handy, not having any use for the software.

but at least it's something that the OP can look for.

(or, what okydoky said )

Welcome to the forum. Sounds like you have a positive attitude towards optimizing your treatment. And that is key. Also want to complement you on your English skills. You will get lots of help here towards tweaking your settings. Be patient and realize that even those who are already optimized can and do have a random bad night here and there. I had a horrible night Sunday evening, followed by three pretty great nights. No change in settings involved, just happened.

Also, once you start adjusting your settings, follow the advice you get here. But as much as possible, try to change one thing at a time and then give it a few days to assess what effect, if any, that particular change has on your sleep. You want to establish some kind of baseline to compare your results to, and changing a bunch of settings at once makes it difficult to tell what helped and what didn't.

Good luck in your treatment!

Amazing how many people replied thanks is very important for me I will definetly sleep better tonight knowing that I could solve this and have my machine back and running smoothly and correct it asap. As I realize your suggestions are that probably the problem lies with the setting, I have check with the website and the put setting from 4 to 20 so I will listen to your advice and increase the starting point

djhall wrote:One thing you may want to consider is enabling the OptiStart feature.

OptiStart is a new feature that, if turned on, will automatically start the therapeutic pressure at the 90% pressure average, provided from the previous therapy session. This allows the device to address any possible early-events that may occur during the course of sleep.

If you need a pressure of, say, 14 to be effective but your machine is starting at 4, it is going to take time for the machine to work its way through the 4-14 range and start becoming effective. During that time you will have very disrupted sleep and high AHIs. If you restart the machine or hit the ramp button the process has to start all over.

OptiStart will start the machine at a pressure it found generally effective last time you used it, which will enable it to zero in on an effective pressure much faster.

How can I enable this feature ? Do I need the Clinic Manual ? I Think this will help me a lot

Iamagolfer wrote:I am certainly not an expert but here is what I would do, given you have no medical assistance to adjust the machine.

This is just one of the many tutorials online that can tell you how to adjust the pressure setting. http://www.apneaboard.com/dreamstation- ... structions

I would use a setting of 10-11 to start - higher is not always better. I like a long ramp up (30 min) to that pressure so I can get to sleep.

I have had good success with the Amaraview mask- glad you chose that one. I am trying a different one now but would go back to the AV in a heartbeat.

Good luck- others on this board may have other suggestions.

The link is perfect I have work to do

OkyDoky wrote:I can help you with the Clinical manual so you can find out how to access all those areas that are not accessible now. Here is a link that if you scroll down to Section Three and follow the directions they will email one to you. http://www.apneaboard.com/adjust-cpap-p ... tup-manual

Have you heard of Dreammapper? It's a very basic program that works with your machine but from what I can tell they don't have it in your country yet. Here is the site and they will email when it is available. http://www.dreammapper.com/

If you have a windows computer there is a software program that you can use now called Encore Pro. Let us know and someone will help with a download.

The program we all like to use is Sleepyhead but at this time it doesn't work with DreamStation. Keep watching though because it is supposed to be working very soon.

Many times the APAP machines are set wide open at minimum 4 and maximum 20. These pressures often need to be brought closer to what you need. But it is difficult to know what you need without data. As far as the ramp not working, with a low pressure of 4 there is nothing to ramp to because the machine doesn't go lower than 4. I would increase your minimum pressure to 7 and check to see how your AHI does. I think it will probably need more but we need to know what your AHI is made up from. If it is Obstructive and Hypopnea then pressure will help but it doesn't help Centrals and can possibly make them worse. Do you know if your Sleep Study showed mostly Obstructive?

Thanks for the clinical manual you are a lifesaver I hope to get it in 2 days I already have the dreammaper app thanks (I have a US itunes account) but as all the users said is very limited.
I love also your explanation about what is the problem.

So this question is for all, which programme should I use for the card reader or to analyze the raw data ? Keep in mind that I have Mac and not windows.

Thanks to all. You gave me courage to continue. I will keep you updated.

grzontan wrote:So this question is for all, which programme should I use for the card reader or to analyze the raw data ? Keep in mind that I have Mac and not windows.

Thanks to all. You gave me courage to continue. I will keep you updated.

are you familiar with compiling programs on the mac?

if so, you can compile up a test copy of sleepyhead with preliminary support for your dreamstation, or you can wait a bit until test versions are released (hopefully fairly soon).

unless you want to run a windows emulator on your mac, that's the only choice at the moment.

With the link that was given to you to get to the clinical settings, you can go to the Therapy menu and the OptiStart is on that menu. I'm not familiar with it's use but it sounds like it will determine a starting pressure based on your last use.
As far as software to read your SD card we really are limited to the Dreammapper program now since you have a MAC, but keep checking here. http://www.sleepfiles.com/SH2/?TestingVersions It is a free program that one of our members Jedimark wrote and he is working on getting it updated to include the DreamStation. This is also a site that has a lot of CPAP information https://sleep.tnet.com/main

If you were diagnosis was Obstructive and not Central or Mixed Apnea, I think you can gradually increase (give a few days to evaluate) your minimum while monitoring your AHI. If you have difficulty exhaling there are flex settings that can give you up to 2 cm/H20 decrease on exhale. You can experiment with the flex settings to see what feels most comfortable.
Keep letting us know how you are doing in this thread and if you have any other questions..

Sounds like you've gotten some good information to get started with. Using the instructions in the link on how to access clinical settings menu and making sure the first two settings are an auto mode with OptiStart on will let the machine narrow in on a good pressure setting over the course of the next few nights. When you get the email with the full clinical manual you can get familiar with the rest of the settings for your machine. Along the way you can experiment with the comfort settings to discover what you find most comfortable and natural.

It doesn't look like there will be detailed data analysis software available for you on Mac until a new sleepyhead version is released. In the meantime the dreammapper website at least gives you numbers like how much of your remaining AHI is caused by Obstructive Apneas, Clear Airway Apneas, and Hypopneas, which is useful information to know.

Keep us updated on the changes you make and how the next several nights unfold for you.