Variable Breathing always 60%+ - Concerned

Browser,

For the first time I am looking at this thread but not reading all of it. Excuse me if I ask something already covered.

This looks awfully complicated and being blessed with a low IQ, I like to break things down into simpler parts. Since you seem to need a high pressure, have you considered positional sleep apnea? It is generally thought that a high percentage of patients exhibit less severe apnea on their sides as compared to supine. Further, I believe that it is often the case that a lower pressure in these patients will be needed for side sleeping.

My own case may be a little extreme as I need 19 cm supine while 8.5 cm is very effective for side sleeping. I have a simple system that forces me to side sleep exclusively and I use 8.5 cm instead of an unbearable, for me, 19 cm.

Maybe you can experiment with exclusive side sleeping and check your reports.

Let me add, that I found out when the doc reviewed my PSGs, that I did not really know when I was side sleeping and when I was supine (after all I was asleep). That is why I need the system to force side sleeping.

Good luck,

rooster wrote:Browser,

For the first time I am looking at this thread but not reading all of it. Excuse me if I ask something already covered.

This looks awfully complicated and being blessed with a low IQ, I like to break things down into simpler parts. Since you seem to need a high pressure, have you considered positional sleep apnea? It is generally thought that a high percentage of patients exhibit less severe apnea on their sides as compared to supine. Further, I believe that it is often the case that a lower pressure in these patients will be needed for side sleeping.

My own case may be a little extreme as I need 19 cm supine while 8.5 cm is very effective for side sleeping. I have a simple system that forces me to side sleep exclusively and I use 8.5 cm instead of an unbearable, for me, 19 cm.

Maybe you can experiment with exclusive side sleeping and check your reports.

Let me add, that I found out when the doc reviewed my PSGs, that I did not really know when I was side sleeping and when I was supine (after all I was asleep). That is why I need the system to force side sleeping.

Good luck,

Well the only thing that bothers me with this is that my entire titration at my PSG I was on my back and 10cm fixed all but 1 Ha and they chased snores to 15cm and called that my new pressure. My old pressure was 10 and prior to that it was 8. I have gained maybe 15 pounds and 2 years since that last study and all the sudden I need more than 15? I also started the Lexapro after that study and was on something else prior to that and I took a new job where I sit way too much compared to my old job where I was moving all the time.

Something major changed in the last 2 years because now if I fall asleep for a single night without the machine I wake up with my Uvula swollen huge and red and laying on the back of my tongue. I have been a mouth breather since a child due to allergies and sinus issues and a deviated septum all of which were repaired many years ago except the allergies.

I am doing pretty good with the mouth breathing when I use a chin strap and I now breathe through my nose during the day most of the day. I think I am getting retrained as long as I use the nasal spray and keep my nose open.

The diagnostic portion of my PSG I stayed on my right side which from my own experience is my worst position and especially causes me to fill with air. I do better on my left side except for rib pains and knots I feel under the skin which my Dr. doesn't seem too concerned about. These are under the skin on or between ribs usually and are palpable knots about 2 inches long and kind of feel firm. I noticed one just below my left rib cage yesterday.They kind of move around when I try to find them. Cigar shaped to oval shaped about 2 inches long and feel like limps under the skin. I can't see them in a mirror. I also feel like there is one in my left breast muscle due to feeling the same kind of ache there.

-SWS wrote: The highest priority control layer? The power button. Variable breathing is near the bottom of the control layer heap. Snore is near the top and you show FL being even higher. (note: had to reedit those orders after going by my apnea-fried memory ) I

Exactly, VB is at the bottom of that priority layer, snore "near" the top but FL control layer is even higher. He has residual FL even at the highest pressure, snore is NOT what kept his pressure up, the OA, Hypopnea and FL are. Both FL and Hypopnea will demonstrate flattening, easy to spot either at infant state or fully developed. Once pressure is UP, it will only come down when there is a reason to do so.

Consensus says residual SDB events above >15 cm is time for trial on Bipap therapy.

In any case the events contributing to VB would be eliminated with Bilevel therapy or in other words the remedy is the same.

The search for Popt is the bottom most control layer, with VB just above that.

If I needed a pressure of 15cmH2O, I for one would personally need a BiLevel to cope with that pressure. And I would expect more "spontaneous arousals" at those higher pressures, given my tendencies as well.

Here we go - last nights report : With .5mg Klonopin so much for the Klonopin theory. Ran cflex at 2 instead of 1.

Had some leak issues again:



VB - last night (50+) is last on the right:



For snoredog:



Thanks

Browser:

See what is happening here? Your AHI is on a upward trend in parallel with the higher the pressure is you use.
If pressure is NOT going to improve AHI, might as well put it where it is comfortable to tolerate. Would not
surprise me if all the snoring, leaks and events seen are from the pressure itself.

Your pressure is either 9.0 cm or it's 22 up over the hill, and you cannot be sure it will get any better at 22 cm.


I would put it in CPAP mode at 9.0 cm and see what kind of AHI you get at a fixed pressure. When you tried 9 to 20 range
above snores where what started things off on a steady march to higher pressure. IF AHI is no worse than it is at 16 cm,
stick to the lower pressure. The worst that could happen is you put it back in the Auto mode.

If you look at that graph, ideal pressure may be over the hill to the right but if look straight down there is that NR. I would
rather use a pressure found at the bottom or heading on a downward trend. Sometimes you cannot eliminate all snores, but
it is pretty hard to tell a machine that. Higher pressure only seems to increase the frequency of events seen.

You could also try using Split-night mode, put it at 9.0 cm CPAP mode for first 240 minutes, then follow with your Autopap settings you are currently using, then you could see and compare the two to each other. Keep all your settings the same, just go into Setup, navigate to Split-Night, change from Off to 240 minutes, then input 9.0 cm pressure, exit and you are good to go. To reverse, go back in and set Split-Night to Off.

Hey if it don't work one way, try the other what have you got to lose?

Browser,

From that last graph you just posted, "AHI vs Pressure", it indicates that your best (potential) pressure is at 11 cm.
I've been wondering (from what little I've been able to follow this thread) whether your VB issues are from the pressure range and responses in your Auto. (pressure changes disturbing both sleep and breathing)
Have you tried straight pressure of 11 cm.?

Edit after reading Snoredog's post...... It may help to know how much time you spent at a pressure of 9 cm. It LOOKS like it might be a better setting, but sometimes those graphs don't tell the complete picture.


Den

I was going to suggest 10 cm straight cpap before I saw Wulfman and Snoredog suggesting 9 and 11. Well mine is the average so I suggest 10. I did much tweaking and finally use straight cpap myself.

Browser wrote:
.......I also started the Lexapro after that study ........

Are you still taking Lexapro? As you probably know, Lexapro is designed to treat a brain that has "too little serotonin". With sleep apnea, you have too little oxygen and too much adrenalin. Either can cause severe anxiety and depression. There are no studies that show sleep apnea causes "too little serotonin".

One of my sleep docs was on a local public tv health show about sleep apnea recently. She said a sleep lab that keeps such records told her that more than 50% of patients showing up at their lab for the first time were taking SSRIs or other antidepressants. The docs think this is very inappropriate for sleep apnea patients. SSRIs do not treat the basic problem and the side effects can cause more problems with sleep and apnea. As soon as the patients start treatment for apnea, the docs try to wean the patients off antidepressants. You may need to discuss this with your doctor.

Last night I set it to 14-16 and CFLEX 3 and Humid 4. VB was over 50% and I feel weird/anxious today with my head feeling funny especially my eyes. A lot of snores and AHI over 7. I tried a straight 10 once and awakened in a panic attack feeling like I couldn't breathe - I was on my back also. A very scared feeling. Been scared to try that again. That pressure of 9 was for less than 20 minutes and only one night. I will try a straight pressure tonight again or a split night. I have tried straight 10,11,12,13,14,15,16 and been all over the place on AHI and anything under 16 shows a lot of snores. The best night I have had in a while was that 9-20 night. It is hard to handle constant pressure over 15 due to aerophagia and more leaks.

I am just tired of trying so many settings with no real good results. The night on a fixed 10 I only slept a couple hours and my AHI was over 20...

The SSRI is also for OCD or intrusive unwanted thoughts...another subject unless sleep deprivation brought that issue on. It all started years ago with me waking up more tired than I was when I went to bed. At the time I also had some sinus health issues that eventually required surgery. Then the unwanted bad thoughts started and then I just couldn't function one morning when I awakened feeling I hadn't even slept and with the thoughts pumping through my head and the more I tried not to have the thoughts the more they came. I went to a shrink who said I was depressed and put me on Elavil and after gaining about 50 pounds in 6 months I switched to Prozac for a couple years and thenZoloft for many years and on and on. In the meantime I had migrains and fatigue and falling asleep anytime I stopped moving and bounced from Dr. to Dr. and was sent to a sleep study and had moderate apnea. I tried the machine and then taught myself to sleep on my side and as long as I stayed on my side I was somewhat better and quit with the machine. I didn't use it again for years and continued to gain weight all that time. I have gained a total of around 85 pounds since right before this all started. I was a back sleeper when this started. Then a few years ago my BP shot up and I started to have panic attacks and head dropping every time I drived and could almost sleep standing and couldn't sit through anything and went for another crappy sleep study that said my AHI was over 100 originally it was around 20. I went back on a machine and have been fighting it since but atleast I don't fall asleep whenever I stop moving or fight sleep when driving anymore. But I still feel like crap.

COULD all this have started with sleep deprivation caused by sleep apnea??? Too scared to go off the meds...

Folks, Browser is sending us a message. He is asking for some consistency in the advice being provided as it is clearly distressing him that he is not gaining any benefit. OuttaSync may be able to add some advice re this as it happened to her as well.

I am keeping out of recommendations because I believe a constant flow of confusing (sometimes conflicting) advice is a cure worse than the original complaint.

It may be time to choose a baseline and give Browser a breather for a few days. How we choose of who chooses, I don't know. I lean towards Browser staying at 15 for a while.

To Browser, pls tell me to jump out if I am getting this wrong.

Cheers

DSM

All advice appreciated. I hate to lay all my private info out there but I believe if anyone gains anything from it than it is a good thing. I know it is all confusing to say the least because I have posted so much information and it is all over the place. There isn't much in the way of obvious improvement vs changes and that is what is making it so hard. I wish it were as easy as bump the pressure up a point and my AHI drops to 1 or less and all is good but it seems no matter where I set it nothing is consistent! I would really like to be under 15 and closer to 10 in order to cut down on leaks and noise and aerophagia.

I put $3500 in my HSA for next year compared to zero this year but my insurance is also going from 95/5 to 80/20. That money will be available on a debit card January 1 and I intended to just buy a different machine and some masks then. I was thinking of the Sandman Auto or the Intellipap Auto with software and card reader. Now I am thinking maybe get a new sleep study this year if possible and see if they prescribe a Bipap. If they do I would try to get whatever Bipap you guys would recommend and if they will not approve it than just buy it next year on this card. Maybe I should just take what they give me because aren't all Bipaps data capable and if they don't give an auto bipap does it really matter?

Thanks

Browser wrote:The diagnostic portion of my PSG I stayed on my right side which from my own experience is my worst position and especially causes me to fill with air. I do better on my left side except for rib pains and knots I feel under the skin which my Dr. doesn't seem too concerned about. These are under the skin on or between ribs usually and are palpable knots about 2 inches long and kind of feel firm. I noticed one just below my left rib cage yesterday.They kind of move around when I try to find them. Cigar shaped to oval shaped about 2 inches long and feel like limps under the skin. I can't see them in a mirror. I also feel like there is one in my left breast muscle due to feeling the same kind of ache there.

I noticed no one has commented on this yet. Do you have any digestive or intestinal issues? (You dont have to answer that publicly). Just maybe worth pursuing.

Do you move around a lot in your sleep? Perhaps the VB is due to pain??

Browser,

The thought that comes to my mind is if we had a set of classic machines (say an Auto, An Auto Bilevel & an Bipap SV (can do multi-purpose)) and we had these as loaners for members to be able to borrow for a short while while we work out what therapy is going to work best maybe we could handle the difficult cases more effectively.

I suspect there are too many issues in doing what I am suggesting but the idea is there.

DSM

echo wrote:

Browser wrote:The diagnostic portion of my PSG I stayed on my right side which from my own experience is my worst position and especially causes me to fill with air. I do better on my left side except for rib pains and knots I feel under the skin which my Dr. doesn't seem too concerned about. These are under the skin on or between ribs usually and are palpable knots about 2 inches long and kind of feel firm. I noticed one just below my left rib cage yesterday.They kind of move around when I try to find them. Cigar shaped to oval shaped about 2 inches long and feel like limps under the skin. I can't see them in a mirror. I also feel like there is one in my left breast muscle due to feeling the same kind of ache there.

I noticed no one has commented on this yet. Do you have any digestive or intestinal issues? (You dont have to answer that publicly). Just maybe worth pursuing.

Do you move around a lot in your sleep? Perhaps the VB is due to pain??

I have to take a lot of fiber if I want to continue to have bowel movements . I take Nexium for GERD. I do have pain in my left side which is the one I like to sleep on er don't really like it due to the discomfort in my rib cage. I have had a lot of back pain since being more consistent with use of the machine. It seems when I sleep on my right side it is much more comfortable but I feel my mouth filling with air a lot and have to puff it out(I know it is strange to only happen on right side) and also get more aerophagia.

dsm wrote:Browser,

The thought that comes to my mind is if we had a set of classic machines (say an Auto, An Auto Bilevel & an Bipap SV (can do multi-purpose)) and we had these as loaners for members to be able to borrow for a short while while we work out what therapy is going to work best maybe we could handle the difficult cases more effectively.

I suspect there are too many issues in doing what I am suggesting but the idea is there.

DSM

I know cpap.com rents machines and maybe I could rent a Bipap for a week or month or whatever the term is. I wouldn't have a clue as to how to set it up though. I do have a script on file there. I would want to rent the machine that the "Experts" here agree may best treat my condition.