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MY STORY - weepingwillow601 - 03-15-2013
Hello to everyone... I have been browsing the forums for a few weeks. Thanks to all for the great cpap knowledge that you've shared.I went for a sleep study on Feb 13 after canceling two previous times before in the last year. ( I didn't think I had a problem.) When I awoke the morning after, laying there with all those wires hooked up to me, I thought to myself that this had to be the craziest idea I'd ever had. I couldn't wait to get out of there. Drove an hour home with my hair sticking out everywhere, looking like a punk rocker from all the goop used to stick the electrodes to my head.
I didn't have daytime sleepiness. I did tire easily but I attributed that to my age (51), menopause, work related stress and extra weight.. I was diagnosed with hypothyroidism 3 years ago and blamed most every symptom I had on that even though my thyroid numbers have been back in range for 2 1/2 years..
I went on about my business after my sleepover and a few days later, at work, received a call to come back for another overnight stay asap to be fitted with a cpap. I asked the nurse that called if it was that urgent and she told me that yes, it was severe. I grudgingly headed back that evening after work..
The tech hooked me up with a nasal pillow. When I awoke the next morning, I stretched like a lazy cat from a long afternoon nap. I can't remember the last time I awoke stretching. She remarked "You did good! You had some deep sleep last night." Still puzzled as to what "severe" meant, I asked her about it as she unhooked me from my mess of wires.
She said you were moderately severe.. Your AHI was 46.3 and 62 in REM. I had never heard of AHI and didn't want to appear stupid, so I didn't ask any further questions. I requested a copy of my sleep study, researched my results and was in total shock at what I read.
Here it is:
Latency to sleep onset.....17.5 minutes
Sleep Efficiency .............92 %
patient sleeping 452 minutes
Of that time 3% was spent in stage 1
84% in Stage 2
0% in Stage 3
13% in Stage REM. ( can you really skip a whole stage?)
Patient had severe snoring
2 Obstructive apneas, 3 Central apneas, 0 mixed apneas and 334 hypoapneas resulting in AHI score of 45. These events are associated with Oxygen desaturation, the lowest O2 saturation being 76% in non-Rem and 81% in REM sleep.
The only place I see the numbers 46.3 is totals under sleep stage.
AHI 42.3 in Non Rem stage and 62 in REM. RDI is 43.2 and 65.9 under sleep stage.
RID durations (seconds)
Non REM
Apnea Avg 13.1 Max 17.1
Hypoapnea Avg 14.4 MAx 88.2
RERA Avg 15.8 Max 19.6
REM
Apnea Avg... 15.6 Max...18.7
Hypoapnea Avg.. 15.1 Max....48.5
RERA..... Avg 12.3 Max 13.6
Anyways, I'm a little over 2 weeks on my CPAP with a setting of 11 and took my SD card by DME to check yesterday. In those two weeks I went from a 46.3 to a .07.
The first 2 or 3 days on the cpap though, I felt horrible. More tired than I can ever remember being. After about the 5th day, I started taking my b/p readings more regular. Another shocker. Average b/p now is 120/72..
My b/p for( I don't recall how many years) usually is 150/90 or higher and that was with 2 b/p pills a day and 20 mg lasix daily. I went to my family dr a few days ago and he lowered me to one b/p pill a day. He said I might eventually get off b/p meds all together.. Woohoo!!! 
I hope the ankle swelling gets better, too.. Anyone have that issue?
I think this had been the best thing I could have done for my health. I wake up more refreshed and ready to go. No hitting the snooze button 3 times. Stretch every morning.. I can feel my energy returning with each day.. Feels great..
I only wish I had done it sooner...
Thanks for reading... I enjoy all the good advice I get from this forum..
RE: MY STORY - Sleepster - 03-15-2013
Thanks for posting your message. It appears that when you stopped breathing in your sleep your blood oxygen level dropped quite a bit. It's a good thing they took good care of you and got you on a good machine.
You're lucky.
You're also lucky that you adapted so well to CPAP therapy. Many people have a much harder time of it.
You've done yourself a great favor and have severely reduced your chances of heart disease and stroke.
All the best to you.
RE: MY STORY - cbramsey - 03-15-2013
Welcome to the forum!!! We are glad you joined us!!!
With respect to the edema (ankle swelling) you mentioned, that is a side effect of many BP medications.
Spend some time looking around the place. There is some great information here.
RE: MY STORY - weepingwillow601 - 03-15-2013
After reading some of the other posts, I do feel exceptionally blessed to have adapted so well to the cpap machine. Curious though as to what CFlex means. I see mine was set to the #3 but I don't know what it means.. ?
RE: MY STORY - cbramsey - 03-15-2013
(03-15-2013, 10:09 PM)weepingwillow601 Wrote: After reading some of the other posts, I do feel exceptionally blessed to have adapted so well to the cpap machine. Curious though as to what CFlex means. I see mine was set to the #3 but I don't know what it means.. ?
In case you haven't done it yet, you might want to find and download the CPAP manual for your machine.
You can find it here
http://www.apneaboard.com/adjust-cpap-pressure/change-cpap-pressure-settings-adjusting-your-machine-with-a-clinician-setup-manual
RE: MY STORY - JJJ - 03-15-2013
(03-15-2013, 09:27 PM)weepingwillow601 Wrote: ... The first 2 or 3 days on the cpap though, I felt horrible. More tired than I can ever remember being. After about the 5th day, I started taking my b/p readings more regular. Another shocker. Average b/p now is 120/72..
If you have edema I'd bet good money that one of the blood pressure pills you are on is a calcium channel blocker. Calcium channel blockers are famous for causing edema. Some are worse than others, and patients react to them differently as well. When I was on verapamil (a calcium channel blocker) I had a slight bit of edema, but when my doc switched me to amlodipine (a different calcium channel blocker) my ankles swelled up to balloons. And the older you are the worse the edema from calcium channel blockers.
Luckily I am now able to keep my blood pressure normal with an ace inhibitor and two water pills, so I don't need the calcium channel blockers any more. See if your doc can get you off the calcium channel blockers.
And if you are not on a calcium channel blocker, then disregard what I said above. But see your doc anyway, because you need to get the edema under control.
RE: MY STORY - jgjones1972 - 03-15-2013
Hi weepingwillow601,
You seem to be doing really well and have a good handle on things.
If you have any questions, don't hesitate to ask.
The stage of sleep you were missing in your sleep study was NREM3. This means non-REM stage three. This is what is often referred to as "deep sleep". Unfortunately it is very common for people with untreated apnea to miss out on this stage - which is very important for physical health. This is why the polysomnographer at your titration was pleased that you had gotten some "deep sleep" while using the machine.
Edema (the swelling of your ankles) is fairly common with untreated apnea and should go away fairly soon if untreated apnea was the only cause. My ankles started shrinking back down to normal size after a couple weeks of therapy and the edema was completely gone after about a month. Everybody is different though. If the ankle swelling doesn't start noticeably improving after a couple more weeks, it would probably be a good idea to check with your doc to see if everything else is ok.
You are reporting a great AHI! It just takes a while for a body to get over all of the abuse it has been subjected to over the period before treatment. Sleep deprivation, oxygen desaturation etc.
Here's to your continued success!
RE: MY STORY - jgjones1972 - 03-15-2013
(03-15-2013, 10:09 PM)weepingwillow601 Wrote: After reading some of the other posts, I do feel exceptionally blessed to have adapted so well to the cpap machine. Curious though as to what CFlex means. I see mine was set to the #3 but I don't know what it means.. ?
C-Flex relieves pressure on exhalation - so if your treatment pressure is set to 11 and C-Flex is set to 3; then the pressure is at 11 when you inhale and it drops down to 8 when you exhale.
RE: MY STORY - zonk - 03-15-2013
(03-15-2013, 10:09 PM)weepingwillow601 Wrote: After reading some of the other posts, I do feel exceptionally blessed to have adapted so well to the cpap machine. Curious though as to what CFlex means. I see mine was set to the #3 but I don't know what it means.. ?C-Flex pressure relief is comfort feature, reduce pressure at the beginning of exhalation and return to set pressure just before inhalation
3 provide most relief. experiment and see what best works for you
Try Flex demo mode on the machine and see which setting you prefer (off, 1, 2, 3)
Philips Respironics Flex Family: http://flexfamily.respironics.com/
The clinical manual is available via email, scroll down to section three
http://www.apneaboard.com/adjust-cpap-pressure/change-cpap-pressure-settings-adjusting-your-machine-with-a-clinician-setup-manual
PRS1 setup: http://www.apneaboard.com/pr-system-one-philips-respironics-setup-cpap-clinician-menu-instructions
SleepyHead software support PRS1 Pro 450 and need to install the patch for 460
The model number 450 or 460 printed on the label at the bottom of the machine [take the water tank out first before checking]
RE: MY STORY - trish6hundred - 03-15-2013
Hi weepingwillow601,
Thank you for sharing your story and WELCOME! to the forum.!
You have a GREAT attitude toward the CPAP therapy and that will go along way.
Best of luck to you .