My apologies for a lengthy post that is so long.
Just like many others this is all new to me and I still don’t quite understand all of this or the severity of it, in my case. I’m 42 yo female with no health issues, other than this. Quick family background, my dad and aunt (his sister) both died in their 50’s from heart failure. As I learn more and more, I truly believe my dad died from sleep apnea. After becoming disabled after his heart attack, he never really bounced back 100%. A few years after his heart attack, he went hunting one day and never returned, they found him the next day sitting up against a tree as if he fell asleep and never woke up. He was a large man and could move a house with his snoring. Due to the family history, I always have a fear of not living past my 50’s.
I went to my doctor due to a blood test that showed my Vit D was extremely low and I’m always extremely tired and lately it’s been really bad, he asked me a series of questions, by time I was done, he gave me a script for Vit D and a referral to go see another doctor. I was given a date and time so I went not knowing what to expect. I was sent to see a pulmonologist. He had me complete a questionnaire and based on the questionnaire he had me do a sleep study at the end of April. Just a few stats from that study: Sleep efficiency 93.4%; Latency to stage REM 170 minutes; 54 abnormal breathing events: 7 obstructive apneas, 46 obstructive hypopneas, 1 central apnea; AHI 8.4; longest event 28.5 seconds, lowest oxygen saturation 86%; 232 arousals for no apparent reason, 36.1/hr of sleep; snoring index 5.6/hr of sleep. periodic limb movement; normal sinus rhythm.
A few days later, received a phone call from doctor’s office to schedule another sleep study using CPAP for obstructive sleep apnea. A few weeks later back for 2nd sleep study. Results as follows: Sleep efficiency was 77.1%; Latency to stage REM 374.5 minutes; 316 arousals for no apparent reason, 55/hr of sleep; snoring was noted. study incomplete due to emergence of central apenas consistent with treatment emergent central sleep apnea syndrome; period limb movement 7.7/hr of sleep; normal sinus rhythm.
This sleep study was on Friday, come Monday morning the doctor called me and said it was more severe than he originally diagnosed and I needed to go have an echocardiogram done and then if that was all good, I needed to return for another sleep study. (at this point I’m not sure what to think) I was scheduled for the echocardiogram, that came back fine and then a few days later I returned for an Auto SV BIPAP titration study.
3rd Sleep Study results: Sleep efficiency was 80.4%; 749 arousals for no apparent reason, 117.8/hr per sleep; snoring was noted; AHI 4.2 at EPAP min 10 cm, EPAP max 20 cm, pressure support min 0 cm, pressure support max 15 cm, max pressure 30 cm; rate at auto, 0 arousals noted at the optimum pressure with an index of 0 per hour of sleep; average oxygen saturation at optimum pressure was 94%, sleep efficiency at optimum pressure was 99%, periodic limb movement 30.2/per hour of sleep; normal sinus rhythm.
They prescribed a Respironics System One BiPAP auto SV Advanced 30 cm and it was noted that I have periodic limb movement disorder and some blood work done.
I’m assuming blood work was normal, they said they would contact me if there were any issues, never heard from them. I seen the doctor for the initial appt, seen a nurse assistant for the follow-up from all the sleep studies and they would not give me copies of the sleep test, they only gave me copies of the findings. When I asked for copies, they told me they do not give those out. I thought as a patient you are entitled to full results. I don’t have a follow-up til September.
I have been lurking on this forum for several weeks now trying to understand what all of this means. I have downloaded Sleepyhead and I do import the data periodically. I have no idea what I’m looking at but I’m still trying to figure it out from those on this forum and the Sleepyhead help info. I’m really confused by posts on this forum, it’s as if most start out on a CPAP and work their way up and some say it is nearly impossible to get or to start on the machine that I have been prescribed, however, there were no hoops to jump through that I know of for them to prescribe this machine to me, so I am still confused of how serious my condition really is based on the results from my sleep studies. Also, everyone states this machine is expensive, I cannot find a price anywhere and I’m still waiting for the paperwork to come through from the insurance to see the cost, curiosity gets the best of us sometimes. I have no clue as to what this is going to cost us.
I have used this machine since I received it and I look at the AHI everyday since that is an app (DreamMapper) on my phone. When I have time, I import the data into Sleepyhead. My AHI’s seem to bounce around, highest being 13 and lowest being 1.3 and everything in between. I’ve read they need to be 5 or less but I am interested in understanding all of it and not just looking at a number.
Interested in getting some insight from some of you with experience regarding my sleep studies and the machine I have been prescribed.
Looking forward to being part of this forum!
Hello afwife4. Welcome.
It takes awhile to learn about CPAP. One thing that caught my attention in your post was the assumption that everything was okay with your blood test because you had been promised they would call if something was wrong. Personally, I would get the results of that test. People fail to get critical information all of the time because they don't get test results due to an over sight or neglect. Besides, you are entitled to those results.
"....respiration,—a troublesome practice, but one which custom has rendered necessary to our easy existence...." Oliver Twist, Charles Dickens- 1837
I use FlashPAP to load data from a FlashAir III wifi sd card in my machine to my computer and display it with SleepyHead .
robysue's Beginner's Guide to SleepyHead
Welcome to ApneaBoard, afwife4. You're in a good place to learn about your condition and also about your machine.
Can you tell that you feel any different since you've started using your ASV machine?
The SleepyHead graphs and reports - yes, that is a lot of stuff. It's all extra information that most people who use CPAP therapy don't ever even poke their noses into, though. So there's absolutely no pressure as far as a time limit to understand it or anything like that. There's definitely a HUGE learning curve when you first start looking at the SH material.
I have a problem with low vitamin D levels, too. If you do a search of this forum for that topic, you can find a few threads where other people with the same problem have talked about it some.
I noticed that you have periodic limb movement disorder. I imagine you will find out whether your doctor wants to give you medication for it. I don't know how bad it has to be before medication is usually given.
This forum is very problem-solving oriented. I appreciate that about it. I think you can find lots of help for your health issues here.
Welcome to the forum afwife4! Glad you found us. Sounds like you are learning a lot just reading and as you post questions and receive answers you will learn a lot more! Good luck and keep us posted!
APNEABOARD - A great place to be if you're a hosehead!!
EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
Can't address all the issues you have but I will mention the wide range of your AHI. My sleep study was 7.1. The first month on therapy had daily swings from 13 to 2 and back to 12. Now, after 4 months and a few adjustments, my last 8 days were under 1 with two 0's.
A little patience and a lot of education goes a long way.
As far as I know we are entitled to the RESULTS and not always all the detail behind those results-that can be hours and housrs of plots and charts that IMHO don't mean a lot. The test results do mean a lot and it seems that you have those.
Many people don't sleep well during studies and it becomes difficult to diagnose directly to ASV, you on the other hand slept well and it was obvious that you were having complex Apnea with centrals (clear airway) that were being caused by CPAP-therefore you went directly to ASV.
basic CPAP $800 ish, BiLevel $1400 ish, ASV $4000 ish, total dart throws but give you a scale to expect-BTH ventilator is $10,000+ so it could be worse. All estimates will depend on machine, DME, insurance and negotiated prices.
It seems like you are getting good results for your first pass at CPAP settings and you may want to see how you settle in before decided to address your PLM, mine is not a big problem for me personally and seems to be controllable by how many blankets I have over my legs-temperature dependent
Your O2 numbers are just fine after CPAP (BTW CPAP is a generic name for all types of this therapy). after 4 posts you will be able to up load some plots (start looking into how to do this) and we will be happy to provide some insight.
As for how serious: I have talked with people that have O2 sats below 60-you are fine. Your starting apnea count is not high at all, but some are long (28 seconds) and your O2 was dropping below 88-you get to use CPAP. 2nd sleep study triggered way too many centrals (complex apnea ie treatment CAUSED the centrals) so you get ASV. If you got your machine a few weeks ago when you started "lurking" then you are still quire new and things ae still settling in, AHI does jump around even after a year
- there are most likely some adjustments you can make to control it better and become more comfortable with it.
As far as your family history, good to know and glad you are using CPAP-it works. From what I understand when an apnea happens your O2 level drops and your heart speed up to try and keep your blood O2 up, then when you start breathing again you heart really speed up to circulate the O2 and then it slows back down. this sudden fast/slow is not great for you heart and low O2 can cause nerves to die off in time, also not good. I would doubt that this has caused damage with you just because your O2 levels were never all that low or for very long-but it's very good to keep it that way-also of course not a Doctor here, but your Doctor seems knowledgeable and keeping on top of things.
Welcome to the order of the hose heads and good health to you!
WELCOME! to the forum.!
I wish you good luck with your CPAP therapy.
You'll get lots of help here, so feel free to ask as many questions to help you better understand all of this, I know there is a lot to learn, but you'll get there.
Hang in there for more responses to your post.
Thanks for the replies they are appreciated.
I was considering making a call to get the results tomorrow from my blood test, if time permits from work.
As far as feeling rested, some days not at all, some days part of the day and then I’m exhausted by time I get home from work. My husband and I have been looking at the data in Sleepyhead trying to learn little by little. It seems on the days I’m really really tired my ‘Timed Breaths’ are over 1,000 events per night and when they are between 200 and 700 I get through the work day and then I’m ready for a power nap. Can someone explain what the ‘Timed Breaths’ are and what triggers the quantity of them? I’m still very new and I’m sure it will all improve as I learn more and maybe some tweaking here and there. Good news is that I haven't really had any issues adapting to the machine or wearing a FFM.
As far as the periodic limb movement, they gave me an option for a medication or we could do the bloodwork first. I’m not one that typically jumps on prescriptions and I prefer not to take anything if I can keep from it.
Sleepyhead does show excessive mask leakage but when I had the DME check my data for mask leakage they are telling me that there isn’t any to be concerned with. I cannot feel any air coming out around the FFM and when I do feel the air which is rare (it wakes me up) I reposition to correct the problem. Large leak shows 0%, Total Leaks 0, but Leak Rate is mostly in the 95th percentile in the 40’s and a few higher than that.
My apologies for the delay in responding, I’m not on my laptop that much and I really don’t care for typing on my tablet when I use it, mostly just viewing.
I've been using a machine for a little over a month now. Although I tried a full mask, I am more comfortable with a hybrid nasal mask (Sleep Weaver) and a chin strap.
Most nights I go to sleep quickly and easily. When I wake up, I wake up very refreshed. Some nights (about one per week), I start the machine, then feel very claustrophobic. I feel like I can't breathe. If this lasts too long (more than a few minutes), I take off the mask and try to wait til I am more tired before putting it on again.
I am still having issues with a gassy feeling at bedtime as I adjust to the pressure. As well, I find myself producing saliva or moisture of some sort on my face at the side of my mask that I sleep on.
This morning, I woke up with the mask off my face. I don't know how it happened, but right away, I woke up.
Having said all this, there are mornings when I wake up wondering if I am still wearing the mask and if it is indeed on. I guess this should be my goal every night. What am I doing wrong the other nights?
07-07-2016, 09:16 AM
(This post was last modified: 07-07-2016, 09:28 AM by OpalRose.)
You may be mouth breathing. Is your chin strap coming off too? You may want to experiment with the chin strap. Try wearing it over the mask and then under...see what works best.
If your producing saliva, then your jaw is dropping and you are mouth breathing.