Don't Think Anyone can help-just need to vent!!

[grumpygirl]

Well, another sleepless night!! Seems lately I have had sooo much trouble staying asleep. Last night for example I went to bed around 10:30 (usual time) read for about 20 min. and tried to sleep. Couldn't sleep. Finally around 2:30 a.m. I took 1/2 a Xanax and fell asleep til 5:30 a.m. and took my mask off and just laid in bed til the alarm went off at 6:15. This is happening more and more often. I am using my machine in APAP mode with a range of 9.6-13.0 and my stats are good as always with very low AHI and slightly higher HI. My 95% pressure is usually 10.2 or 10.4. Leak rates vary from very low to about .18.
I am beyond frustrated with this and so tired that I am having trouble even typing this without making dozens of mistakes!!
I have considered consulting my sleep doc but it takes months to get an appt. and she honestly isn't very helpful most of the time- I get more concrete suggestions and support from this forum.
Out of desperation I purchased the book- I Can Make You Sleep- which contains a CD that is supposed to help you fall asleep and sleep more soundly(it is kinda like hypnosis) but to be honest it seems to have made things worse for me(go figure)!!! I use the CD while trying to fall asleep and then wake up after it is over and then have trouble going back to sleep or waking up many times during the night.
Even before purchasing the book I was having the same problem. WHAT IS WRONG WITH ME??? I hate to sound like a complainer-but this is really messing with my quality of life. I almost hesitate to drive around town with my adorable grandson in the car-I just feel so "off kilter" and "out of it". It is almost as bad as pre-CPAP days. WHAT CAN I DO??? Any thoughts would be appreciated but I truly don't think there is much that can be done-I just needed to vent. My poor family is beginning to just turn a deaf ear to me when I have another crappy day from lack of good quality sleep-they are tired of hearing me say how TIRED I am!! Well- Thanks for listening-have a good day!! GG

[mdintx]

I'm right there with you. Despite having some super numbers for some time (0 leak and AHI below 2.5), I feel terrible. I hit a critical point last week and went home early. I've been playing with my pressure and it has helped but it's not where I want to be. It's a challenge to avoid frustration.

Carbonman talked about a book that focused on the psychological aspects of sleep hygiene:

viewtopic.php?f=1&t=45013&st=0&sk=t&sd=a

It might be worth checking out.

[carbonman]

WHAT IS WRONG WITH ME??? GG

GG, I suggest you get Barry Krakow's book, Sound sleep, sound mind.

Having been practicing the methods from his book, I have discovered
there is a catch to his methods to help you improve your sleep.....

it requires you to be the active participant in changing
your sleep habits. It requires personal introspection.
It requires you to examine your personal habits and change them.

He doesn't do anything for you.....he gives you the tools to help yourself.

I have been learning/practicing his techniques for not quit a month now.
I am starting to see improvements.
I have broken my need/habit/addiction to a visible clock.
This has not been easy.
I am learning to Close my day.
I am learning to balance the TFI(thought/feeling/imagery)
process in my mind and in so doing, calm my mind and
let the sleep come. Same process for when I wake in the night,
to return to sleep.

Go the distance.

[Wulfman]

Well, another sleepless night!! Seems lately I have had sooo much trouble staying asleep. Last night for example I went to bed around 10:30 (usual time) read for about 20 min. and tried to sleep. Couldn't sleep. Finally around 2:30 a.m. I took 1/2 a Xanax and fell asleep til 5:30 a.m. and took my mask off and just laid in bed til the alarm went off at 6:15. This is happening more and more often. I am using my machine in APAP mode with a range of 9.6-13.0 and my stats are good as always with very low AHI and slightly higher HI. My 95% pressure is usually 10.2 or 10.4. Leak rates vary from very low to about .18.
I am beyond frustrated with this and so tired that I am having trouble even typing this without making dozens of mistakes!!
I have considered consulting my sleep doc but it takes months to get an appt. and she honestly isn't very helpful most of the time- I get more concrete suggestions and support from this forum.
Out of desperation I purchased the book- I Can Make You Sleep- which contains a CD that is supposed to help you fall asleep and sleep more soundly(it is kinda like hypnosis) but to be honest it seems to have made things worse for me(go figure)!!! I use the CD while trying to fall asleep and then wake up after it is over and then have trouble going back to sleep or waking up many times during the night.
Even before purchasing the book I was having the same problem. WHAT IS WRONG WITH ME??? I hate to sound like a complainer-but this is really messing with my quality of life. I almost hesitate to drive around town with my adorable grandson in the car-I just feel so "off kilter" and "out of it". It is almost as bad as pre-CPAP days. WHAT CAN I DO??? Any thoughts would be appreciated but I truly don't think there is much that can be done-I just needed to vent. My poor family is beginning to just turn a deaf ear to me when I have another crappy day from lack of good quality sleep-they are tired of hearing me say how TIRED I am!! Well- Thanks for listening-have a good day!! GG

You didn't say what your EPR setting was (if any).
My suggestion would be to set the machine in CPAP mode at a pressure of 10 or 11 and if you use EPR, set it to 1 or 2 at most. Even though you have a fairly narrow pressure range, there could be enough pressure changing going on that it's disturbing your sleep......particularly if you're in a deep stage of sleep or REM.


Den

[Slinky]

I concur w/Wulfman. Some people just do NOT do well w/constant pressure changes regardless how mild. Try your AutoSet Vantage in straight CPAP mode as Wulfman suggested and give it at least 3-4 nights before deciding if its better, worse or the same.

[DoriC]

I can tell you from experience that wulfman and Slinky are correct. My husband is very sensitive to pressure changes and does best on fixed pressure of 12cms. Every once in awhile I will set it to auto at just a narrow range of 11-13 to experiment and he will have a restless night, so I'm now convinced he's disturbed by even small pressure changes.

[grumpygirl]

Thanks for the advice everyone!! I have not been using the EPR settings but wonder if setting the machine to CPAP at 10 or 11 will flair up my aerophagia!! I have always suffered from horrible gas and GERD if the pressure is too high. Will the EPR help with that??? I have not had too much trouble with GERD or gas since I set my machine to APAP with the pressure ranges I mentioned. What is do you guys think?? I agree that the pressure changes may be what is causing the problem-so I guess I will just have to bite the bullet and try the CPAP setting. WISH ME LUCK!!!! GG

[Wulfman]

Thanks for the advice everyone!! I have not been using the EPR settings but wonder if setting the machine to CPAP at 10 or 11 will flair up my aerophagia!! I have always suffered from horrible gas and GERD if the pressure is too high. Will the EPR help with that??? I have not had too much trouble with GERD or gas since I set my machine to APAP with the pressure ranges I mentioned. What is do you guys think?? I agree that the pressure changes may be what is causing the problem-so I guess I will just have to bite the bullet and try the CPAP setting. WISH ME LUCK!!!! GG

From my readings on the forum, this is one of those things that is soooooo individualistic for each person.....and you won't know until you try it (whatever "it" is). Some people have done better on straight pressure and some have benefited from exhale relief (EPR or C/A-Flex) and some from APAP pressure ranges. There are no hard and fast rules. If you're having no problems without EPR, I don't think I'd opt to try it just yet.......until you try straight pressure.

It could even be that the GERD is disturbing your sleep. There's also something called "silent" GERD. Do you take any medications for it before bedtime? Sleep on your left side? Elevate the head of your bed a few inches? There are any number of things that can help to relieve it.

Please let us know how things go.


Den

[mars]

Hi grumpygirl

Sorry that you are having all this trouble

If you can beg, borrow, steal, or even buy an oximeter, you would have more information with which to work things out.

In the meantime, if I can combine your Forum name with CarbonMan's final comment - just for now of course - you get

Go-The-Distance-Girl



cheers

Mars

[Cobalt Panther]

I took 1/2 a Xanax

STOP USING THE XANAX
"Sleep apnea (temporary suspension of breathing during sleep) - Xanax may worsen this condition. Individuals with sleep apnea should not generally use sedatives as sleep aids."
I was prescribed Xanax and read the info that comes with it. The quote above says it all. I had an appointment with my pulmonologist two days later. The first thing she asked was about the Xanax (WOW! a doctor who reads your chart before they see you ). She told me DO NOT TAKE IT.
I agree with everyone else about the importance of good sleep hygene and my doctor stresses that every time I see her. I just wanted you to know that you need to read all info about any drugs you are taking. If you don't receive complete info from the pharmacist then google it. Don't rely on the doctor knowing all the problems with the drug. The doctor who prescribed the Xanax for me knows I have Sleep Apnea. She was the one to recognize the symptoms!
Good luck and please keep us informed of you progress.

[ozij]

grumpygirl wrote:
I took 1/2 a Xanax
STOP USING THE XANAX

But if anyone uses benzos on a daily basis, "DO NOT STOP COLD TURKEY" do it gradually.

Read this if you take benzos on a daily basis:

http://www.benzo.org.uk/manual/

O.

[grumpygirl]

Thanks ALL!! I stopped taking the Xanax on a regular basis about 8 weeks ago. I resorted to using it the other night because I was so frustrated about not being able to sleep. I had been taking about 1/2 of a .025mg pill before bed every night for the last nine years. I really didn't have too much trouble getting off of the stuff- I just did it VERY slowly. Right after I stopped the Xanax I didn't have any trouble falling asleep or staying asleep. It is just in the last few weeks that I have been having this problem. BTW-I used the Xanax only at night, never needed it during the day-only VERY rarely.
I do take meds for the GERD-Pepcid-20mg twice a day. I don't tolerate the PPI's very well so I don't take them. I do raise my head up with a wedge pillow, I can't sleep on my left side due to shoulder bursitis and it seems to make the aerophagia worse. SO, I guess I'll just have to try straight CPAP for a few days.
Wulfman- Why do you think I shouldn't try straight CPAP with EPR just yet?? I use an EPR of 1 with my APAP only on the settling(ramp) phase for about 15 min.-have never tried using it all night though.
I think I will put my machine on CPAP with a pressure of 11 tonight with an EPR of 1. We'll see what happens!!
I TRULY appreciate all the input!!! Keep the info coming and I'll report tomorrow how things go.
Here's to a GOOD NIGHTS SLEEP- GG

[Wulfman]

Thanks ALL!! I stopped taking the Xanax on a regular basis about 8 weeks ago. I resorted to using it the other night because I was so frustrated about not being able to sleep. I had been taking about 1/2 of a .025mg pill before bed every night for the last nine years. I really didn't have too much trouble getting off of the stuff- I just did it VERY slowly. Right after I stopped the Xanax I didn't have any trouble falling asleep or staying asleep. It is just in the last few weeks that I have been having this problem. BTW-I used the Xanax only at night, never needed it during the day-only VERY rarely.
I do take meds for the GERD-Pepcid-20mg twice a day. I don't tolerate the PPI's very well so I don't take them. I do raise my head up with a wedge pillow, I can't sleep on my left side due to shoulder bursitis and it seems to make the aerophagia worse. SO, I guess I'll just have to try straight CPAP for a few days.
Wulfman- Why do you think I shouldn't try straight CPAP with EPR just yet?? I use an EPR of 1 with my APAP only on the settling(ramp) phase for about 15 min.-have never tried using it all night though.
I think I will put my machine on CPAP with a pressure of 11 tonight with an EPR of 1. We'll see what happens!!
I TRULY appreciate all the input!!! Keep the info coming and I'll report tomorrow how things go.
Here's to a GOOD NIGHTS SLEEP- GG

I wasn't aware of that option.......so I consulted the Providers manual.......

Expiratory Pressure Relief (EPR)
In either CPAP or AutoSet mode you can select expiratory pressure relief (EPR).
EPR is designed to maintain optimal treatment for the patient during inhalation
and reduce the delivered mask pressure during exhalation. The desired result of
EPR is to decrease the pressure the patient must breathe out against, making
the overall therapy more comfortable.
The features of EPR are:
• EPR is disabled automatically in the event of an apnea.
• EPR resumes automatically when the apnea event has passed.
• You can select an EPR pressure drop of OFF, 1, 2, or 3 cm H2O.
• You can set EPR to be off, delivered only during ramping (CPAP mode) or
settling (AutoSet mode), or delivered throughout therapy.
• Pressure drop is limited, to avoid sub-optimal treatment (maximum drop is
3 cm H2O).
• When EPR is enabled, the delivered pressure will not drop below a minimum
pressure of 4 cm H2O, regardless of the settings.
• Either the clinician alone, or both the clinician and the patient can access the
EPR level. You can enable or disable patient access to the EPR level setting.


In any case, try to limit the number of changes to one (or, as few as possible) thing at a time. If you're using EPR during Ramp/Settling, then you could still use it that way in CPAP mode.

With your machine, you have a multitude of options. Hopefully you can get "something" to work for you so you can get good, restful sleep.


Den

[grumpygirl]

Good Morning All- Well, I set my machine to CPAP mode with a pressure of 11.2 put the EPR at 1 fulltime. My results are listed below:
Pressure: 11.2
Leak: .18
AHI: 1.6
AI: 0.0
HI: 1.6

The numbers are great (as usual for me) and remarkably I slept pretty well. I woke up at 3:30( to pee), after going to sleep around 11.. It took me a little while to fall back to sleep but I did and slept til around 6 a.m. I did have some VERY mild GERD symptoms but did not have the horrible aerophagia I would have experienced had I not used the EPR setting. Straight CPAP just tears my GI system to pieces.
This morning I feel a little "fuzzy" and sorta like I am moving in slow motion, but I am hoping that it may be a reaction to the lack of solid sleep I have experienced over the last few days. I kinda feel like I need a short nap but will try not to. I did notice that I was dreaming just before I woke up at 6-I don't think I have done that in quite a while. The last few days (while on APAP) I have noticed that I was getting up 2-3 times a night to pee, thankfully that was better last night.
So I am holding out hope that maybe I have found a good "spot" that I can stick with for a while. I am going to keep the setting at 11.2 with ERP 1 for a few more days before I make any rash decisons. I had been using APAP mainly to alleviate the horrible GERD and aerophagia symptoms that I suffered while using straight CPAP at 10.4. I still had some mild issues with GERD and gas even while using the APAP. I just figured I'd have to suffer some. I think maybe I AM one of those gals that just doesn't do as well on APAP with the changes in pressure but I KNOW it is really too soon to tell. Let's keep our fingers crossed that FINALLY I may have found some relief!!!!!!!! BTW- I was titrated at 12cm but I was taking Prozac and Xanax at the time and I think both of those meds made my apnea worse.
Also, a question- when using the EPR set at 1 how much does that decrease your fixed pressure? For example- I had my pressure set at 11.2-what pressure was I actually getting then?
Have a great day everyone- GG































Any thoughts or suggestions out there???

[Pugsy]

Also, a question- when using the EPR set at 1 how much does that decrease your fixed pressure? For example- I had my pressure set at 11.2-what pressure was I actually getting then?

EPR at 1 will reduce the pressure upon exhalation by 1 cm which would give you 10.2 cm.
Since we roughly exhale 50% if the time your overall average pressure would likely be around 10.7 cm.
So on inhale, 11.2 but drops to 10.2 on exhale.