Severe sleep apnea people, how did you survive before cpap?

Truthfully, I have not felt much different since starting cpap treatment. My Ahi was 85.1. The only reason I ever went to the Dr. about it is because my husband said I snored. I have never had high blood pressure, no diabetes in my family, I am about 30 lbs overweight. I first tried cpap last April 2012, I was so upset by it, I tried to use Provent for a while, but stopped because it was so itchy. I went back to cpap to see if it would make me feel better and stop bathroom trips which is one of the promises. Well, that one is just not true, as well as the promise of weight loss and getting up and feeling younger and less depressed, having better skin, looking younger etc....with c pap, I have an AHi of zero with a pressure of 5, and NONE of the promises came true! It is just Ok. I don't have any big changes in anything about my health. But, I don't snore, and I love to be in the same bed as my husband.

In fact, I went for another sleep study on 12/8 to see if I could use a dental appliance. (the doctor was willing to test me because she doubted the first test because it was an oximeter at home) The tested me for a while with nothing, and my Ahi was 35, which is still considered severe. The Dr. said that with adjustment the dental appliance will work for me (I am so happy) She said that with the appliance, I got down to about a 6, which is still considered mild apnea. I am willing to try this because I don't seem to be any different, no matter what my AHI is.

Truthfully, I am still confused about much of this. I think that as in all scientific experiments, your controls all have to be tightly controlled to ever get accurate findings. I think that the health care/DME folks are all in a hurry and just want that bottom line, so we all have to think for ourselves, which is why this forum is so great. If it works for you and you like it, Yahoo! I am still holding out hope!

Barely.

[quote="Reenee"]Truthfully, I have not felt much different since starting cpap treatment. My Ahi was 85.1. The only reason I ever went to the Dr. about it is because my husband said I snored. I have never had high blood pressure, no diabetes in my family, I am about 30 lbs overweight. I first tried cpap last April 2012, I was so upset by it, I tried to use Provent for a while, but stopped because it was so itchy. I went back to cpap to see if it would make me feel better and stop bathroom trips which is one of the promises. Well, that one is just not true, as well as the promise of weight loss and getting up and feeling younger and less depressed, having better skin, looking younger etc....with c pap, I have an AHi of zero with a pressure of 5, and NONE of the promises came true! It is just Ok. I don't have any big changes in anything about my health. But, I don't snore, and I love to be in the same bed as my husband.


Does your machine have data? It seems odd that you would have an ahi of zero all the time, so it makes me wonder if there was a problem with the machine, and you weren't really getting accurate treatment. I think I have gotten a zero twice in 7 months. It is often less than 1, but zero is rare. I have heard of machines getting stuck on reporting zero until rebooted. I know many long time users say they don't get zero that often either. Just close to it.

Slartybartfast wrote:Severe OSA doesn't always correspond to feelings of overwhelming daytime sleepiness/brainfog, etc.

When I was diagnosed with 73.4 AHI and oxygen desaturations of as low as 66%, having spent 20% of the time below 80% I felt "normal" and went about my daily job working with a bunch of people way smarter than I am in pharmaceutical research and development, and nobody knew there was a problem. I WAS sick a lot, but even my doctor didn't make the connection. A couple weeks before I was diagnosed I drove my pickup truck with an over-capacity load of antique diesel generator, tablesaw, machine tools, and a bunch of other heavy stuff 1100 miles nonstop for 19 hours, LA to Seattle and I was never even sleepy, thanks to frequent McDonald's ice teas and the use of their Bat-room (as with beer, you don't buy ice tea, you rent it).

But mid-morning after my initial study, I got a phone call from my sleep doc who said he had to see me that day. When I arrived, he said my condition was "life threatening" and he sent me home with a loaner CPAP until I could return for my titration study. The study was uneventful; I slept like a baby. Sleep tech awoke me at 0600 and apologized for waking me, saying I was sleeping so soundly. He said he had all the data he needed by 0200 but decided to let me sleep the rest of the night. Once I got on the hose I noticed a huge change in my alertness level, and I began to recall and understand the repetitive dreams I had had over the years of suffocating, drowning, being buried underground, etc. But even with untreated sleep apnea, I had been able to function normally at work and at home.

So severe OSA doesn't always manifest itself as fatigue and lethargy.

any changes noted in relationships at home or at work

how were work evaluations

Hi Zoo,
Yes, I have the Phillips Respironics System 1. When I got it, it was the only one that my Insurance would allow. I got it in August. I most have about 1.8 or up to 2 something, last night I had it on for 7.5 hrs and it was zero. My mask is the nasal pillows.
When I had a sleep study in Oct, the Dr. thought it was very odd that I was treated so completely with such a low pressure. (this cpap machine belonged to the sleep study company) So, so far I have had 2 tests with an oximeter, (one with nothing, and one with Provent) (By the way, the Provent results were pretty bad, AHi 20) and 2 overnight sleep studies. (one on Oct 11 with cpap and then on Dec 8 with somnomed oral appliance. Thanks for asking! It is all so very mysterious to me....

I know that for me the incidence of higher Ahi happens in REM which it appears is rare for me since my sleep is interrupted so much because of bathroom breaks but, who knows? I always have a hard time getting back to sleep after the break. I always ask for all of my sleep study results but this last time they were very hesitant to give it to me. I have signed all the paper work to get it, but have not received yet. Have a good evening.

Reenee wrote:Hi Zoo,
Yes, I have the Phillips Respironics System 1. When I got it, it was the only one that my Insurance would allow. I got it in August. I most have about 1.8 or up to 2 something, last night I had it on for 7.5 hrs and it was zero. My mask is the nasal pillows.
When I had a sleep study in Oct, the Dr. thought it was very odd that I was treated so completely with such a low pressure. (this cpap machine belonged to the sleep study company) So, so far I have had 2 tests with an oximeter, (one with nothing, and one with Provent) (By the way, the Provent results were pretty bad, AHi 20) and 2 overnight sleep studies. (one on Oct 11 with cpap and then on Dec 8 with somnomed oral appliance. Thanks for asking! It is all so very mysterious to me....

I know that for me the incidence of higher Ahi happens in REM which it appears is rare for me since my sleep is interrupted so much because of bathroom breaks but, who knows? I always have a hard time getting back to sleep after the break. I always ask for all of my sleep study results but this last time they were very hesitant to give it to me. I have signed all the paper work to get it, but have not received yet. Have a good evening.

Thanks for the reply. It makes a little more sense now, though it does seem mysterious, and your doctor seems to think so too. You might try posting some graphs here and get some advice. I would also complete your profile and add your equipment info. If you aren't getting REM sleep, then you may be getting a kind of false low since a night of good sleep with REM would probably produce a higher ahi. If you think you are having insomnia, you might do some searches for posts by robysue. She has some great posts on the topic as she suffered from it badly. That would help you with your sleep fragmentation which would then allow your sleep quality to improve. That is one thing that will make you feel like crap even if your numbers are awesome.

My AHI is 81 without CPAP. I now average around 3.5.

Survive? I didn't. I subsisted.

Hi Zoo,

Thanks so much. It is wonderful how you answered so thoroughly and thoughtfully. I will probably do all that you suggested soon, just need to get through all this time of year stuff. Last night ahi was 1.9. I think what you said made sense, I also thought that I may have had OSA for so long that I don't know any other way to feel. I have quite a few issues that I wish were solved by the treatment, but most of all I think I'd love to sleep all night with out the several trips to the restroom. Then the problem of taking on and off the mask, and putting it back on and starting all over again with it being cold and uncomfortable. This has been the biggest reason why I don't really enjoy it. Thanks again. To you and everyone else, PEACE.

I mentioned this in my introductory post. I was diagnosed as having severe sleep apnea. Before that, I was diagnosed with Adult Attention Deficit Disorder for YEARS. (Poor focus, reduced memory.) So I was taking 20mg of Ritalin, twice a day. When I totally lost concentration, mid-day naps helped. And really, it wasn't enough because I needed a third pill in the evening, but wasn't prescribed one. So sometimes I'd run out. (And then I'd have to listen to my other throw that in my face, telling me I was addicted to the pills. Hardly. Coming off of them was a breeze once I had the CPAP.)

I just didn't do a lot of things so much of the time because I didn't have the energy. The funny thing was that it didn't feel like being sleepy. Just a lack of energy and a lack of ability to concentrate, sometimes become quite severe. So, I survived before CPAP with reduced energy and concentration, using a fairly powerful stimulant each day to make up for the lack of sleep.

If you are actually asking in order to get some advice on how to get by without a CPAP machine, and you're looking at what I said, let me offer a different suggestion. Provigil. Of course, it is ungodly expensive, but it does a far better job of masking a lack of sleep than Ritalin ever did, and the side effects (being "pumped" or jittery) just aren't there. It is much cleaner. You are simply awake, not wired.

Darth Vader Face wrote: If you are actually asking in order to get some advice on how to get by without a CPAP machine, and you're looking at what I said, let me offer a different suggestion. Provigil.

Quite the opposite.

When I see people with high AHI, I can only imagine how miserable their life must have been. Even at my low numbers of 5.8 I was always fatigued and always tired. Probably because my sleep stages were being fragmented.

I think there needs to be a greater awareness for sleep apnea. They have all these walks, fundraisers, screenings and other things for cancer, aids, etc. Sleep apnea awareness needs to be more prevalent. If it were so, many of us might have been treated earlier.

i was diagnosed in july/august with an ahi of 21. I seemed to survive just fine, i'm trying to work out how to survive AFTER cpap. I'm more tired than i ever was in my life - hopefully things will get better over time - hopefully

One thing to remember is that AHI doesn't necessarily map to subjective experience. Another is that sleep deprivation only kills you slowly. It destroys focus, concentration, and many other mental and physical "edges", but you can still "go through the motions". If you have enough support, and/or a relatively non-demanding life situation, you can survive a long time that way. Untreated SDB is no way to live, but you can live that way.

I also agree with whoever said "Provigil". I've had SDB for 10+ years, and roughly 1/4 of my productivity during the last 7 or so (most of which I worked full-time) was due to provigil. And that's not even counting caffeine. I also have (or at least, had) very high natural energy, which I was still able to summon in demanding, high-pressure, high-excitement situations, until last year.

But I also empathize with cosmo - as someone with an AHI of 5 (down from 10-11 pre-MMA surgery), just starting CPAP, I'm struggling to get by in life, and find it hard to imagine having much worse sleep accumulated over even more years.

patrissimo wrote:One thing to remember is that AHI doesn't necessarily map to subjective experience. Another is that sleep deprivation only kills you slowly. It destroys focus, concentration, and many other mental and physical "edges", but you can still "go through the motions". If you have enough support, and/or a relatively non-demanding life situation, you can survive a long time that way. Untreated SDB is no way to live, but you can live that way.
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Plus in fact sleep deprivation studies show that people will swear up and down that the lack of sleep did not affect them even when the data shows it significantly affect their performance. One of the most interesting facts was that it affect their judgement. Sleep deprived people thought nothing of bombing schools and hospitals, didn't question orders, while they did when not sleep deprived. The military has done a lot of studies on the effects of sleep deprivation.

blackspinner - i went with your recommendation of pantyhose (sort of) for tying the fitlife mask down - I bought a box of above knee stockings at CVS ( 2nd box 50% off!!!!!) and it seems to work better, or at least as good as my sheep idea - thanks!

my AHI was 58. i was a wreck before cpap and had all kinds of exhaustion, irritability, anxiety, etc issues. i took naps during the day when my oldest two were at school and the baby was asleep. i also have a wonderful husband who let me sleep in for weekends for years and years. even with all that i was a mess and felt like i had a hangover most every day.