Where did all the help GO??

JohnBFisher · Post by **JohnBFisher** » Thu May 09, 2013 9:36 am

racprops wrote:... I had a very bad night and as this does seem to be like trying to hit a moving target from a moving truck on a very bad road I was a little freaked out and upset. ...

Oh, we SO understand your frustration. Just remember you are definitely not alone.

By the way, over the years I have used a dental appliance to help reposition my lower jaw. It helped for many years. And they make over the counter devices to do just that. Here's a Consumer Reports review:

http://www.stopsnoringconsumerreports.c ... -worth-it/

They recommend Vital Sleep:

http://www.vitalsleep.com/vital-sleep-s ... AID=617542

Unfortunately, those devices stopped working when I started to completely relax my jaw while I sleep. So, I use a full face mask, which helps a lot.

But you may well find they help. If it helps reduce your obstructive apneas, then we might avoid a batch of centrals. (It appears that as the machine starts to address your obstructive apneas lots of centrals arise .. as we would expect with complex sleep apnea).

Loreena · Post by **Loreena** » Thu May 09, 2013 9:57 am

You might also want to try the Aveo TSD or the Good Morning Snore Solution, both tongue restraining devices. I used the Aveo while sleeping in the recliner last night and was able to dial back my pressure from 11 to 7 and had no OAs or hypopneas--this done while sitting mostly upright while using a neck collar--the best AHI I ever had and also the best sleep. No leaks either--I'm guessing it's because my pressure was so low. I'm expecting the GM Snore Solution in week or two and it holds only tip of tongue. Woke up with drier than normal mouth and believe I will turn up humidity tonight. I believe I am relegated to the recliner for the rest of time but honestly am happy to do it if it means no more oxygen-deprivation. The OAs in bed were killing me and higher pressures only gave me aerophagia and did not stop the OAs enough anyway. I used an expensive ($3.5K) oral appliance for a year and then starting noticing teeth movement--no thanks. Thank God for the inventors of these tongue-restraining devices as well as the cpap.

NateS · Post by **NateS** » Thu May 09, 2013 7:36 pm

Rich,

John Fisher is likely the most experienced and knowledgeable ASV user on the forum. I have only been on ASV for the past 16 months, but I followed his advice to me at that time, and stuck with the settings prescribed to me by my sleep doctor, until after my follow-up appointment with the doctor about two and a half months into my therapy. My understanding was that time was needed for my body to adjust to my ASV, and for the ASV to adjust to me. Even after that, my adjustments were very very minor and to this day are not far from what my sleep doctor recommended originally. The one time that I persuaded my doctor to agree to lowering my minimum pressure, I realized within 3-4 days that it was a huge mistake, and I was miserable and suffocating. I couldn't wait to go back to the previous settings. Since then, I only gradually increased my minimum pressures as I became more comfortable with the machine. And as a result, I am getting great therapy.

I don't think that this is far different from the advice you have been given here.

By contrast, your SleepyHead "Changes to Prescription Settings" confirms my hunch: You stayed on your doctor's prescribed setting for only two (2) days! and then in the following fourteen (14) days you changed your settings six (6) times!!!

You had been on ASV for little more than two weeks and you were ready to give up and call it all a scam!

Therefore, Rich with all due respect, it is we who should be asking you "Where did all the help GO??" - That is, what became of the advice and help you were given?

Reminder: We look forward to your posting the full reports and recommendations of your sleep studies.

Best wishes, Nate

Sir NoddinOff · Post by **Sir NoddinOff** » Thu May 09, 2013 8:18 pm

I concur with the opinions above: Show data and go slower.

racprops · Post by **racprops** » Thu May 09, 2013 8:34 pm

Roger I am.

What data other that that what I have been posting do you want?

Rich

NateS · Post by **NateS** » Thu May 09, 2013 8:42 pm

Rich, each night at bedtime, just before you put on your mask and switch on your machine try reciting this:

"A little learning is a dang'rous thing;
Drink deep, or taste not the Pierian spring:
There shallow draughts intoxicate the brain,
And drinking largely sobers us again.
Fir'd at first sight with what the Muse imparts,
In fearless youth we tempt the heights of Arts,
While from the bounded level of our mind
Short views we take, nor see the lengths behind;
But more advanc'd, behold with strange surprise
New distant scenes of endless science rise!
So pleas'd at first the towering Alps we try,
Mount o'er the vales, and seem to tread the sky,
Th' eternal snows appear already past,
And the first clouds and mountains seem the last;
But, those attain'd, we tremble to survey
The growing labours of the lengthen'd way,
Th' increasing prospects tire our wand'ring eyes,
Hills peep o'er hills, and Alps on Alps arise!"

-Alexander Pope

Perhaps Pope had us xPAPers in mind!

NateS · Post by **NateS** » Thu May 09, 2013 8:43 pm

racprops wrote:Roger I am.

What data other that that what I have been posting do you want?

Rich

Your written reports from your Sleep Studies!

Nate

racprops · Post by **racprops** » Thu May 09, 2013 9:06 pm

OK I have three summaries and the detail second sleep study is about 5 pages.

I will have to scan them and load them to a photo site.

Is that what your asking for?

Or just the second study?

Rich

NateS · Post by **NateS** » Thu May 09, 2013 9:23 pm

racprops wrote:OK I have three summaries and the detail second sleep study is about 5 pages.

I will have to scan them and load them to a photo site.

Is that what your asking for?

Or just the second study?

Rich

Rich,

It's of course entirely voluntary on your part but I can only suggest that you put up everything you have on, for example, photobucket where you can first use their tool to white-out your name and contact information wherever it may appear, and then reference same back here in this thread, just as you did with your SleepyHead charts. I'm surprised they only gave you summaries. Most of the studies other forum members have posted run numerous pages.

Hope you find this suggestion constructive.

Regards, Nate

Starlette · Post by **Starlette** » Thu May 09, 2013 11:10 pm

Good evening Rich.

Again, I have briefly been reading the posts on your thread so I really don't know what others have already said about using a dental appliance. As previously stated, I would give you some feedback as far as my experience with a night guard. As you can see by my info below, I am currently using a Silent Night dental appliance. I have been using it for several years now. I had found out about night guards from my dentist when I very first started seeing him. Google "Silent Nite dental appliance" and you should find some good information as well as seeing an image of it. Rich, the way he explained it to me was a night guard works "in conjunction" with your CPAP machine. What it does is moves your lower jaw forward allowing more air to come in then your body has a better chance of receiving the needed therapy from your machine, as opposed to having the airway collapse and getting very little therapy to your body from your machine. Again, they work together. From the information that I have seen given to you on dental appliances, mine was not nearly as expensive, mine was only several hundred dollars. It is part of my nightly regiment of getting ready for bed. One last thought, it hasn't messed with my teeth as others have made mention. Hope this helps.

Starlette

racprops · Post by **racprops** » Thu May 09, 2013 11:20 pm

Thanks, I wonder if it will help.

It seems that 5cm clears up my OAs very nicely, it is my CAs that I have problems with...

Rich

Starlette wrote:Good evening Rich.

Again, I have briefly been reading the posts on your thread so I really don't know what others have already said about using a dental appliance. As previously stated, I would give you some feedback as far as my experience with a night guard. As you can see by my info below, I am currently using a Silent Night dental appliance. I have been using it for several years now. I had found out about night guards from my dentist when I very first started seeing him. Google "Silent Nite dental appliance" and you should find some good information as well as seeing an image of it. Rich, the way he explained it to me was a night guard works "in conjunction" with your CPAP machine. What it does is moves your lower jaw forward allowing more air to come in then your body has a better chance of receiving the needed therapy from your machine, as opposed to having the airway collapse and getting very little therapy to your body from your machine. Again, they work together. From the information that I have seen given to you on dental appliances, mine was not nearly as expensive, mine was only several hundred dollars. It is part of my nightly regiment of getting ready for bed. One last thought, it hasn't messed with my teeth as others have made mention. Hope this helps.

Starlette

racprops · Post by **racprops** » Thu May 09, 2013 11:22 pm

As I have said before, my sleep Doctor wants to keep me in the dark and for me to follow orders blindly.

I had to ask for the sleep studies in detail and so far only got some 5 pages from the second sleep study.

I will scan them and post them.

Thanks.

Rich

NateS wrote:
racprops wrote:OK I have three summaries and the detail second sleep study is about 5 pages.

I will have to scan them and load them to a photo site.

Is that what your asking for?

Or just the second study?

Rich
Rich,

It's of course entirely voluntary on your part but I can only suggest that you put up everything you have on, for example, photobucket where you can first use their tool to white-out your name and contact information wherever it may appear, and then reference same back here in this thread, just as you did with your SleepyHead charts. I'm surprised they only gave you summaries. Most of the studies other forum members have posted run numerous pages.

Hope you find this suggestion constructive.

Regards, Nate

gomer · Post by **gomer** » Fri May 10, 2013 1:23 am

As I have said before, my sleep Doctor wants to keep me in the dark and for me to follow orders blindly.

I had to ask for the sleep studies in detail and so far only got some 5 pages from the second sleep study.

I will scan them and post them.

Thanks.
Rich

-1- Most doctors expect their patients to "follow orders" (blindly or otherwise)

-2- You have a right to ALL your medical files, you however can be charged a small fee for the copies.

-3- Sounds like you NEED expert medical help with your complex apnea issue/s beyond what can reasonably expected from ANY web site.

-4- TWO DAYS...ok, I confess I went back after only one day to try a different mask due to leakage problems. That helped a lot, but it still took me weeks, to fine tune my mask fit maybe over a month.

-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?

-6- while I started getting better sleep fairly quickly, it has taken several months to really enjoy the full benefit of feeling better and more energy.

-7- this site and great people here have been very patient and most helpful to me, but I am not such a complicated case either.

-Z- I am going to hold my tongue, and wish you good luck.

racprops · Post by **racprops** » Fri May 10, 2013 2:44 am

gomer wrote:
As I have said before, my sleep Doctor wants to keep me in the dark and for me to follow orders blindly.

I had to ask for the sleep studies in detail and so far only got some 5 pages from the second sleep study.

I will scan them and post them.

Thanks.
Rich
-1- Most doctors expect their patients to "follow orders" (blindly or otherwise)

I know...BUT I was having problems.

-2- You have a right to ALL your medical files, you however can be charged a small fee for the copies.

-3- Sounds like you NEED expert medical help with your complex apnea issue/s beyond what can reasonably expected from ANY web site.

It is running like that...I was not aware how rare my problem is ( 15%)

-4- TWO DAYS...ok, I confess I went back after only one day to try a different mask due to leakage problems. That helped a lot, but it still took me weeks, to fine tune my mask fit maybe over a month.

With all the silly games he has played, I lost all faith with him and figured he was unreliable...

-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.

-6- while I started getting better sleep fairly quickly, it has taken several months to really enjoy the full benefit of feeling better and more energy.

It started off very badly, I felt I could not breath once it finished the ramp in ..

-7- this site and great people here have been very patient and most helpful to me, but I am not such a complicated case either.

They have been the same with me.

-Z- I am going to hold my tongue, and wish you good luck.

racprops · Post by **racprops** » Fri May 10, 2013 2:56 am

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.

In my book this was a very reasonable idea, to truly know if I was really in danger, or just mildly bothered by poor sleep. That monitoring this very important side effect of this problem seems the only way to go.

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

Where did all the help GO??

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