Need response--my doctor won't help

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Rach.Eliz
Posts: 8
Joined: Mon Dec 26, 2016 2:36 pm

Need response--my doctor won't help

Post by Rach.Eliz » Mon Jan 02, 2017 11:53 pm

Hi everyone! I posted this on another thread and several had asked me to respond with more info, but by the time I did, the post had gotten buried and no one responded again after I provided the info, so I’m making a fresh thread

I have been using CPAP for 2 years but still periodically experience very upsetting symptoms of breathlessness right as I’m falling asleep, even when I’m wearing my mask. I say very upsetting because they wake me up over and over again repeatedly, sometimes for as long as two hours, as if my machine is not catching my events quickly enough.

I use a RemStar Auto with A-Flex, and my range is 9 -15 cm. I don’t use the ramp feature. I do use the A-flex, and I’ve tried it at all different levels (1-3).

My AHI for a night is typically between 1.5-2, so three different doctors have not been interested in helping me figure out why I’m having these symptoms. They just say, “But your AHI is good and you’re on an auto-titrating machine, so I don’t see how there can be a problem.”

However, I still have some nights where I suddenly get breathless as I’m dozing off. It happens when I am almost all the way asleep, so I have a hard time believing it is a mental thing. I can be relaxed and feeling fine breathing with the machine as I’m getting sleepy, but every time I drift off, I wake up with a large breath and the feeling of adrenaline sort of spreading through my body. (I was tested for heart problems before I got my sleep study and everything checked out perfectly, so it’s not that).

I tend to have more RERAs and hypopneas than anything, with a flew clear airways. On Sleepyhead, it looks as though RERAs are not counted in my overall AHI.

Below is a link to Sleepyhead data of one such night when I had a breathless feeling. I had four clear airways, four hypopneas, and two RERAs in the space of about fifteen minutes. I kept waking up over and over.

http://imgur.com/o9NHw1U
http://imgur.com/2DxSYGz
http://imgur.com/MAzdfY8
http://imgur.com/5bOcT26

Here are screen shots of typical data from another night. As you can see, still a lot of events clustered together. On this nights, I don't remember waking up.

http://imgur.com/9GcwLiu
http://imgur.com/WEA6LIy
http://imgur.com/cRX9zdC

Sometimes I will have nights with almost no events at all (perhaps 2 the entire night and no RERAs). Other nights look like the above. Some nights I have trouble falling asleep because of it for 1-2 hours; other nights I don't. It does tend to happen more often when I'm anxious or tense, but not always.

One thing I had considered: has anyone looked into Resmed's CPAP machine that supposedly has an algorithm specifically for female breathing patterns? I read that they are beginning to discover female breathing patterns are a bit different than male patterns and may need different algorithms in their PAP machines to fully address breathing problems. Anyone read about this/heard from your doctor about it/think this could be contributing to my problem?

I am anxious to find an answer for this and resolve it somehow. It's affecting my life because it makes me lose sleep at random times, and it prevents me from doing certain things like taking night-time cold medication or Dramamine or other meds I might need from time to time that affect drowsiness (as they tend to make the breathless waking symptoms worse and last longer).

Thanks for any help you can give! If anyone has suggestions of how I might get my doctor to better understand my concerns, I'm open to it.

User avatar
OkyDoky
Posts: 2733
Joined: Mon Aug 25, 2014 5:18 pm

Re: Need response--my doctor won't help

Post by OkyDoky » Tue Jan 03, 2017 12:32 am

I wanted to link your other thread so people can see what has already been covered. viewtopic.php?f=1&t=114702&st=0&sk=t&sd=a
Now we really need to get your charts organized so we can see the information that we need. This link shows you how to get the needed graphs on one screenshot that we need. Also be sure and turn off the calendar there is an arrow in the link that shows you how. And turn off the pie chart as it really doesn't show anything that we need and we do need to see things below. You do that in Sleepyhead by going to file - preferences - appearance - then uncheck the show event breakdown pie chart.

Your first group of graphs for 1 1/2 hr really don't have enough time to get a very good picture. The second group of graphs do show some hypopneas and FL that a little increase in the minimum might help prevent them. I would increase the minimum to 10 cm and give it a few days to see if that helps your symptoms and decreases your events.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

User avatar
kteague
Posts: 7005
Joined: Tue May 16, 2006 8:30 pm
Location: West and Midwest
Contact:

Re: Need response--my doctor won't help

Post by kteague » Tue Jan 03, 2017 3:07 am

Just for future reference, if a thread is getting buried and more responses are desired, just add a post that says "Bump" and it will bump the thread back to the top.

JDS74
Posts: 3229
Joined: Sun Jan 23, 2011 2:57 pm
Location: South Carolina

Re: Need response--my doctor won't help

Post by JDS74 » Tue Jan 03, 2017 5:48 am

It sounds as if you are experiencing an apnea of sorts that occurs just as you are going to sleep and that it is of sufficient duration that it interferes with actually getting to sleep. When one of these events take place, do you take off the mask and stop the machine or do you try to relax and get back to sleep? I've had a couple of occasions in which something happened and I woke up suddenly, took of the mask and stopped the machine. It didn't record what the event was. So, when next it happens make sure to continue with the CPAP for a period of time to ensure that the event is properly recorded. Then use SleepyHead to drill down to the detail of the event to see what the last two or three minutes look like especially in the breathing graphs Resp. Rate and Flow Rate to see if you are actually breathing at the time of the event.

Following the link from OkyDoky to get a better screen shot will help. The screen shots you are posting show surrounding imgur information so it would be better to get one made directly while in SleepyHead and eliminate the extraneous stuff.

It might be useful to keep a journal of what you eat during the day and what is going on in the hour or so just before bed time to see if there is a pattern that relates to when these event occur. You might be having a sleep hygiene issue.

Links for information about Sleep Hygiene

Info on Sleep Hygiene
Sleep Hygiene Recommendations
Sleep Hygiene Tips

_________________
Mask: Oracle HC452 Oral CPAP Mask
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: EverFlo Q 3.0 Liters O2 PR 960 ASV
Oracle 452 Lessons Learned Updated
AutoSV 960 with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-13.0, EPAP Max-17, PS Min-7, PS Max-12, Max Pressure-25, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.17.

Julie
Posts: 15765
Joined: Tue Feb 28, 2006 12:58 pm
Location: Canada E.

Re: Need response--my doctor won't help

Post by Julie » Tue Jan 03, 2017 6:02 am

Get rid of the calendar on the left... it will allow more info below it.

User avatar
SleepyBobR
Posts: 313
Joined: Tue Jan 19, 2010 4:42 pm
Location: Toronto, Canada

Re: Need response--my doctor won't help

Post by SleepyBobR » Tue Jan 03, 2017 7:33 am

Sleep onset apneas can cause a person to be awakened repeatedly just as they are falling asleep. Once this starts to happen, anxiety makes it worse and it becomes a vicious circle. The onset central apneas are normal but the reaction to them is not. I had this problem too so I know how distressing it can be. Once I figured out what was happening the anxiety subsided and the problem gradually went away. I never have this problem now. Sleep medication can get you past the apneas and into normal sleep but I wouldn't recommend that approach myself because of all the potential for dependancy.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: AirSense 10 AutoSet For Her @ 7-10

SewTired
Posts: 1437
Joined: Thu Apr 16, 2015 8:33 am
Location: Minneapolis area

Re: Need response--my doctor won't help

Post by SewTired » Tue Jan 03, 2017 11:28 am

I was having exactly your problem recently with my Airfit P10. Switched to the Dreamwear and no problems. My Airfit mask was about 7 months old and I don't seem to have the same air venting that I did earlier. I have tried numerous methods to clear vents, but apparently not working so tossed the mask end. Just got the new one and haven't tried it yet. So, venting is a potential cause.
Last edited by SewTired on Tue Jan 03, 2017 9:07 pm, edited 1 time in total.
Diabetes 2, RLS & bradycardia
Settings: range 8-12

User avatar
Pesser
Posts: 527
Joined: Sat Jan 11, 2014 4:41 pm
Location: Nova Scotia Canada

Re: Need response--my doctor won't help

Post by Pesser » Tue Jan 03, 2017 11:44 am

kteague wrote:Just for future reference, if a thread is getting buried and more responses are desired, just add a post that says "Bump" and it will bump the thread back to the top.


Finally.....Now I know what bump means....always wondered.

_________________
MachineMaskHumidifier
Additional Comments: Fear of devil with halo

User avatar
ChicagoGranny
Posts: 6546
Joined: Sun Jan 29, 2012 1:43 pm

Re: Need response--my doctor won't help

Post by ChicagoGranny » Tue Jan 03, 2017 11:53 am

OkyDoky wrote:Now we really need to get your charts organized so we can see the information that we need. This link shows you how to get the needed graphs on one screenshot that we need.


OD, Did you forget to insert the link? Here is one, but maybe you have a better one - viewtopic/t103468/Need-help-with-screen-shots.html


Rach.Eliz wrote: Rach.Eliz


You can get some good help if you reformat your SH charts. I am optimistic that your sleep problems can be greatly improved.

User avatar
OkyDoky
Posts: 2733
Joined: Mon Aug 25, 2014 5:18 pm

Re: Need response--my doctor won't help

Post by OkyDoky » Tue Jan 03, 2017 1:15 pm

ChicagoGranny wrote:
OkyDoky wrote:Now we really need to get your charts organized so we can see the information that we need. This link shows you how to get the needed graphs on one screenshot that we need.


OD, Did you forget to insert the link? Here is one, but maybe you have a better one - viewtopic/t103468/Need-help-with-screen-shots.html


Rach.Eliz wrote: Rach.Eliz


You can get some good help if you reformat your SH charts. I am optimistic that your sleep problems can be greatly improved.

I did forget but I had Linked it to her other Thread. It was the TNET site. https://sleep.tnet.com/resources/sleepyhead/shorganize
Both are good links.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

Sylvia54
Posts: 148
Joined: Thu Jun 23, 2016 10:48 am

Re: Need response--my doctor won't help

Post by Sylvia54 » Tue Jan 03, 2017 6:30 pm

Doctor won't help? Yeah apparently he's one of those who just doesn't know too many of the sleep apnea symptoms, the first clinic I visited was confused by it too. What you're describing is some kind of "sleep start". I had that and mine could go on and for hours too. Clonazepam helped and I still use alittle of it but I think after 9 mos of being on cpap, the machine has helped me get rid of the sleep starts more than the drug. (I only take .25 mg). My sleep starts came in the form of jerking, i.e. hand jerks, foot jerks, finger jerks, etc. If I fell asleep in my recliner, I woke with a half snort, and then there was head noise too. All that suddenly showed up, along with restless legs after I'd been dealing with chronic insomnia for 2 yrs. And just like your sleep starts, mine were very random, very bad one night and none at all the next. My sleep doctor said sleep apnea can cause all that. It also caused my restless legs which has been totally gone for months now. The insomnia I still have, as cpap still has not resolved my sleep disorders either. I sleep maybe 30-60 minutes longer than before, but still don't have normal sleep cycles. I feel somewhat unrefreshed most days and usually can't get more than 6 hrs of fragmented sleep.

So finally, I'm going to look into an oral sleep appliance. In fact I have an appointment at a dental clinic that specializes in sleep dentistry.
I was told that my sleep apnea is caused by tongue obstruction (pretty common). I'm not overweight and my sleep report shows that I don't lose much oxygen. My Sleepyhead reports always show some RERA and Flow limitations and just like you, numbers vary from night to night, depending on how I sleep. My leaks aren't totally under control either but I never have large leaks. My AHI isn't bad, seldom goes about 2.5. And like you say, that's about all the sleep clinics will look at, compliance and AHI.

Just curious if you had tooth extractions in the past for overcrowding? With or without orthodontic treatment? Or do you have a small jaw with overcrowded teeth?

I think the orthodontic work I had as a teenager (decades ago), is directly related to my tongue obstruction sleep apnea. Aging is most likely another factor.

Regarding the ResMed machine for Her, maybe you could rent one for a couple weeks to see if it makes any difference.
Or look at other posters equipment and PM anyone who is using that machine, see how much difference it's made for them.

SewTired
Posts: 1437
Joined: Thu Apr 16, 2015 8:33 am
Location: Minneapolis area

Re: Need response--my doctor won't help

Post by SewTired » Tue Jan 03, 2017 9:11 pm

Just an FYI on dental solutions. Make sure you discuss (to death) with your dentist risks of TMJ caused by the dental device. A lot of insurance doesn't cover problems caused by TMJ. It is frequently an exclusion. Medical Insurance companies push that TMJ is a dental issue and won't cover and then dental insurance companies says that it is medical and won't cover. :evil:
Diabetes 2, RLS & bradycardia
Settings: range 8-12

User avatar
LSAT
Posts: 9388
Joined: Sun Nov 16, 2008 10:11 am
Location: SE Wisconsin

Re: Need response--my doctor won't help

Post by LSAT » Tue Jan 03, 2017 10:14 pm

SewTired wrote:Just an FYI on dental solutions. Make sure you discuss (to death) with your dentist risks of TMJ caused by the dental device. A lot of insurance doesn't cover problems caused by TMJ. It is frequently an exclusion. Medical Insurance companies push that TMJ is a dental issue and won't cover and then dental insurance companies says that it is medical and won't cover. :evil:


Medicare covers TMJ issues.....I had some issues 2 years ago and x-rays were covered. The device that the Dentist wanted to make me use would have been covered at 80% but I refused to use it.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments:  S9 Autoset...APAP Settings 11-15

Back up mask is another Quattro FF and an F20
Buckwheat Hull Pillow (CPAPfit) from http://www.pur-sleep.com/

Rach.Eliz
Posts: 8
Joined: Mon Dec 26, 2016 2:36 pm

Re: Need response--my doctor won't help

Post by Rach.Eliz » Mon Jan 09, 2017 8:30 pm

I'm back with a boatload of organized data!

It turns out I had a pretty terrible week last week. I had about 3 nights where it was very difficult to fall asleep for the first couple of hours.

This night (Jan 3) you can see that I kept having RERAs, and at first, no other type of event registered. But I kept waking up until finally I gave up and got out of bed for awhile. I went back to bed and struggled with repeated events until about 1-2 in the morning, when I finally fell asleep for good (at least, I don't remember waking).

Image

Basically the same thing for Jan 2

http://imgur.com/KkHqYg4.png]Image[/url]

January 5 was really bad. I felt like my breathing kept getting out of sync with the machine (I use a Remstar Auto with Aflex). I was trying to breathe deeply and calmly, but I kept feeling like the machine was blowing at me before I was done breathing out, and the pressure was dropping off and going into "exhale" mode before I was done inhaling. I wonder if that's why it registered so many CA's? I couldn't figure out why it felt so out of sync. This night is actually one of the highest AHIs I've had since getting my machine 2 years ago. I was in and out of being fully awake. I finally went to sleep around 2 or 2:30.

Image

Some nights end up with a similar amount of events, but I don't remember waking up at all. This was the case on Dec. 27. It didn't keep me from getting to sleep at all.

Image

And some nights I sleep like a baby with hardly any events to speak of.

http://imgur.com/tMUOdTn.png]Image[/url]

As you can see, on the nights when I have clusters of events that keep me from falling asleep, they become much less frequent after I get down into sleep (which usually takes until 1 or 2 a.m., regrettably, since I have a 6 a.m. alarm).

Finally, I'm posting Jan 6 data because something very weird happened: on that day I didn't have to get out of bed at 6, so I tried to go back to sleep but the events started happening again and so I finally just gave up. The events almost never bother me once I've been asleep already. It's almost always upon first going to sleep at night. I was shocked that it was happening when I was trying to go back to sleep in the early morning.

Image

Oddly, these same symptoms also tend to happen every single time I try to nap during the day. They don't happen every time I go to bed at night (despite the fact that last week happened to be really bad almost every night), but they do happen almost every time I lay down during the daytime. I think perhaps it's because my body is less sleepy/relaxed during the day than during my nighttime routine, so I'm dozing more lightly and more easily woken up?

I should mention that when I got my original sleep study, it was not terribly thorough. I wasn't able to sleep much for the night (only 2 hours), but the AHI just from those 2 hours was so high that they diagnosed me and put me on an auto machine without even bothering to do a second sleep study to identify a titration setting. So the idea of setting my minimum pressure higher might hold some weight, as my sleep study did not measure exactly what pressure I needed; my doctor kind of estimated.

What do you all think? Anyone have any idea what it the world was happening with all those CA's January 5?

Julie
Posts: 15765
Joined: Tue Feb 28, 2006 12:58 pm
Location: Canada E.

Re: Need response--my doctor won't help

Post by Julie » Mon Jan 09, 2017 9:42 pm

Do you use the machine when you nap?

Not all clear airway events are dreaded centrals, some of the time (maybe most with very many of us) they are just what's called sleep-wake junk, usually as we're drifting off and just before awakening. If you have very many all night, often in clusters, that would be a different story, but while you have some, I don't think they're over the top.

The exhalation problem might be better if you use the Exhalation Relief (EPR, or Cflex) feature on your machine... it can tend to raise your AHI slightly, but depending on how you set it, can also help you adjust better to the machine so finding the right setting to balance things matters.

Btw, if possible next time, try to make the graphs a bit larger because even with enlarging on Imgur the left side table is hard to read.