Newbie would like to hear success stories, please.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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zoocrewphoto
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Re: Newbie would like to hear success stories, please.

Post by zoocrewphoto » Mon Jan 06, 2014 1:29 am

jelopez777 wrote:I wish I could say using CPAP was a success for me because like others I did invest in this machine, but it caused too many sore throat problems for me that I had to stop. I first discovered I would rather use a neck brace but later I have stopped using it in favor of a much better alternative. I just discovered that using a dental appliance or oral appliance e.g. SnoreRx is much better. At first I did not want to even consider this because a colleague told me it causes salivating. It was only when I tried it for myself that I discovered he was wrong. Yes, initially it does but after a few days of trying it out, your mouth gets used to it and you won't salivate anymore. I discovered if you do not sleep on your side there won't be any salivating. At the "3 setting" I hardly snore and definitely there is no more sleep apnea. I dream and feel so much better during the day. I hope people who read this spread the word to at least try this alternative.

Did you have a sleep study with the dental device being used? If not, you have no way of knowing if your sleep apnea was reduced enough to be cured. Many dental devices consider success to be a 50% reduction. For somebody severe like me (ahi of 79), a reduction of 50% would leave me at ahi of 40, still severe.

Without cpap, I feel like I sleep okay, and I dream routinely. I didn't even realize how bad my sleep was until I had the sleep study and got to feel what a good night really feels like.

My mom does not snore, but her sleep apnea is so bad that she will stop breathing for over a minute at a time. I would never trust lack of snoring to mean no sleep apnea.

Please, get the sleep study and make sure it is truly working for you.

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dir1944
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Re: Newbie would like to hear success stories, please.

Post by dir1944 » Mon Jan 06, 2014 4:16 pm

ok, i'm a newbie. i got my machine and mask on friday, jan. 3rd. my machine is a fisher & payket auto with humidifier. it a very compact machine, about 7 inches square and around 6 inches in height. the mask i have is the very newest restironics nose pillow gel mask.
i got my equipment through apria. their personnel are very nice and their phone customer service is pretty good too. i spent 1 1/2 hours with the respiratory technician on friday and she was very thorough but my memory at 69 is not very good so i don't remember every word she said.

well, friday night was disaster for me. the machine is fine and completely silent. however, when i turned on the machine and put on the mask, i could hear my own breathing and it was deafening. i couldn't fall asleep because of it. then i noticed air escaping from the mask and i thought it must be broken and i wasn't getting all the air i was supposed to. well, i put the machine on around 8:45pm and it took an hour for me to finally fall asleep, i'm guessing. and then i woke up at 1am and was very uncomfortable, so i turned off the machine. it took me another hour to fall asleep and since i'm an early riser, i was up at 5:30am. i did not feel good. the first think i do is take my dog for an hour walk and when i started, i felt very short of breath but i could walk and i eventually got home. but i was a zombie all day. i felt like i had a hangover: dry throat, stinging eyes and just plain tired. well, apria does have a technician on call on weekends so i put in a call and he called me back in a few hours. he has sleep apnea and has been on a cpap machine for 7 years so he knew what i was going through. he explained that the escaping air was normal and for me not to worry about it, just ignore it. then he told me to put the machine and mask on while i was watching tv to get used to it. he told me about the mask he uses: a sleepweaver full nose mask. i told him i would like to try another type of mask and he told me i had 30 days to get a new mask, so i'd like to do that just for a basis of comparison and then i'll have two masks.

i did fall asleep faster on saturday and sunday nights but again, i woke up after on 4 to 4 1/2 hours of sleep. then i turned it off. i know i should be leaving it on all night and hopefully i'll get there soon. can anyone tell if they experienced what i have in the last three days? i guess everyone has their own time frame when they fall into place so i hope mine will happen sooner than later. thanks for your advice in advance.
cheers
david in phoenix
cheers
david

krb39
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Re: Newbie would like to hear success stories, please.

Post by krb39 » Tue Jan 07, 2014 12:05 pm

I got a birthday greeting (thanks) from the CPAP team, and I realized it had been quite a while since I was on. Yes, I regard my therapy as a success story. I'll give some details, if they are of any use I am pleased.

I am now 75. Over most of these 75 years I have had good health. But we all age.

About a year and a half ago I had some issues, apparently I had a mini-stroke. Lots of MRIs, MRAs, CATscans and such later, it turns out I have a partially blocked carotid, hydrocephalus, and sleep apnea. This is not as bad as it might sound. The blockage is manageable, the hydro is asymptomatic and stable, and the apnea, well that's the story here. I mention the others because it seems at least possible that there are some interconnections. Oh, and also my brain has shrunk.

Anyway, while lying on a table being examined for my other problems I dozed and then awoke with a start. The doc said that she thought I should be examined for sleep apnea. I knew people who used the mask but I was always skeptical of whether they really needed it. A fad, perhaps. The doc and my wife convinced me I should get the exam. My wife had claimed before this that I seemed to stop breathing during the night but I tossed it off as just being the way that I slept.

At the sleep study I showed an AHI of 56 or so, which is not by a long shot the highest ever seen but I guess that over 30 is considered severe so I needed treatment. It's a mixture of obstructive apnea and central apnea so a bi-pap is needed. It has worked well. Last night my AHI was 0.9. Sometimes it is all the way up to 2.5. I can't recall far enough back to say when it last was at 3. And the AHI is all H, hypopnea, no apnea.

And yes, there is a great change in my energy level. Of course I am no longer 30, but I can have an active day and not collapse on the couch in the evening. My memory is better. My wife claims it is much better, which is not that she is saying it is now great but rather that before the bi-pap it was awful.

So for any newbie making it this far through this response, I say hang in there. It may take some time to find the right combination, but at least for me it has been well worth it.

Guest

Re: Newbie would like to hear success stories, please.

Post by Guest » Tue Jan 21, 2014 10:19 pm

I should start by saying that I went to my primary doctor specifically to request a sleep study, knowing I would likely end up on a CPAP. I had already made up my mind that if this was the recommended course of treatment I would make it happen, no matter what. I've known since I was a kid that I snored and have known it was likely apnea for at least a year prior to making this decision. My symptoms were pretty severe for me - I'm an over achiever by nature so being exhausted and laying around all day when not at work is not ok with me, nor is daydreaming about the next second I get to lay down and sleep... Anyway, I went ahead and 2 sleep studies later I got my CPAP on December 24, 2013. The following are some notes I jotted down the other day because I wanted to put to paper the difference medication plus the CPAP has made in my life. It's pretty dramatic I think.

Health stats: 38 y/o female. s/p Graves disease/radioactive iodine treatment in 2008 leading to hypothyroidism for life. Activity level: prefer to be active, love a clean house - but all that was gone with the constant need for sleep. I would nap 2-3 hours per day when able and still could sleep 9 hours at night, never feeling rested. I was irritable and exhausted physically and mentally. No other medical conditions. Height: 6' 0", Weight in November, 2014: 183-185. Current weight: 179

Before treatment for sleep apnea: fatigued by 1 or 2 PM daily, napped as often as possible (preferred daily nap), naps lasted 1-3 hours per afternoon with no relief in fatigue level, no exercise, exhaustion mode most of the time, total desperate mental and physical shutdown several evenings per month.

Since starting Nuvigil in November, 2013 (and increasing Synthroid dosage): 0 naps, started running a little bit with Jake (12.1 miles from Nov 13-Dec 23), had headaches daily but was not sleepy during the day anymore.

Since starting CPAP nightly on December 24th, 2013 (along with Nuvigil and Synthroid): 0 naps, headache continued for about 4-5 days, 0 headaches since first week on CPAP, ran 63.6 miles from Dec 29-Jan 19), completed a half marathon on Jan 19th in 2 hours 48 minutes with only 3 weeks of training (I decided to do the race exactly 3 weeks before the race date), more house organization has happened in last 1 month than in previous 1 year (lots left to do but we’re getting there), loss of about 4 lbs and 5% body fat due to increased physical activity (not just exercise; I’m not laying on the couch exhausted all afternoon and evening any more). The body fat % is what impresses me the most - my weight isn't really a concern. I'm excited to lower that fat % even more and am plotting my next race! It hasn’t quite been a full month yet, but I no longer wake up in the night due to mask discomfort (it’s hard to get used to and is not all that fun, but worth it).

parksje
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Re: Newbie would like to hear success stories, please.

Post by parksje » Sun Jan 26, 2014 8:15 am

Hi! I'm a new CPAP user, and it completely changed my life from day one.

First off, I'm not tired when I get out of bed. I got up the other morning, ate breakfast, and drove four hours to Atlanta with no drowsiness whatsoever. I used to get so tired driving that I'd slap myself, roll down the window in the cold, etc. I had put it down to "just getting old", but apparently I was just not getting any sleep. I have a lot more energy all day long, my focus and power of concentration is vastly improved.

Other dramatic positive effects: I used to bite my nails -- that has stopped completely. I forgot that normal people have to trim their nails sometimes. I used to constantly crave snacks and have my face in the fridge or cupboards all day, and used to get up a couple of times a night and eat a handful of pretzels or a bowl of ice cream or cereal, etc. Those urges disappeared overnight, to the point that I sometimes have to remind myself to eat at meal times. I find my clothes are getting looser.

I was playing racquetball with my kid the other day, and I stomped him. I was flying around the court like a demon, making shots that I never would have made just a couple weeks ago.

I used to always feel thirsty, and I would drink water all day long. I don't feel that thirst any more, so I have to be careful to not let myself get dehydrated. I found myself spacing out a couple of times and just feeling generally bad, and I realized that I had just let myself get dried out. So remembering to drink water is pretty important for me.

It seems to me that when I wasn't getting any real sleep, my body always felt like I was in a survival situation, and was constantly urging me to get food and water while I could in order to be prepared for whatever threat was causing me to not sleep. As soon as I started sleeping right, my body got the signal that the threat was over and stopped making those demands. I don't know that it's medically correct, but it's how I think about it.

I use a full face mask, and it is quite an adjustment to have to make. At first I was kind of claustrophobic, but I have talked myself into looking forward to the mask and hose as a kind of stairway to heaven, a way to escape to a happy place -- kind of how I imagine a junkie must learn to think of the needle. I used to wake up with really weird dreams that I could clearly remember. Now I wake up knowing that I have dreamed, but can't really remember them normally. I'm pretty sure that's a sign that I'm sleeping more deeply. I also used to get up to use the bathroom six or seven times a night, and that's down to maybe twice.

The best advice anyone gave me about CPAP was to buy the best machine I could afford. Before I ever used a CPAP, I was on a hunting trip and shared a room in the lodge with a guy who had an S9. He told me that a good machine was essential, and clued me in as to why a heated humidifier and heated hose are important, and how using a cheap machine would be more uncomfortable and would result in a higher chance of failing to continue the treatment. So I took that advice and got the best gear I could find, and I think it's probably the best $1,000 I ever spent in my life.

Good luck to everyone just getting started, and don't give up!

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Denial Dave
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Re: Newbie would like to hear success stories, please.

Post by Denial Dave » Thu Jan 30, 2014 5:50 am

I've been using CPAP for 15 months now. I started out with an AHI of 33 & an 80% oxygen level at the sleep study & over 100 periodic leg movements.

It took me 3 months to get my nightly AHI below 20. I was dealing with a Bi-pap level of 21 IPAP /15 EPAP along with claustrophobia, anxiety and aerophagia. Plus the wondrous adventures of finding the right mask and dealing with high pressure leaks.

PLM's were completely gone after 30 days of use. I have not had a need for middle of the night bathroom runs since starting CPAP.

Each month as my body & brain got accustomed to CPAP, my AHI would drop a little. It was a slow steady progress sort of like going down a flight of stairs one step at a time.

I was stuck in the 10 AHI level for quite some time, then it dropped to 3-5 and then 1-2 & now I’m seeing AHI of 0.5 on a regular basis.

Each time the AHI dropped, I felt better. My wife noticed improvements in my personality long before I noticed any changes! Although, my middle of the night bathroom runs ended within the first 2 weeks.

These days I feel great!! I’m not sure that my energy level has increased… But I’m getting all kinds of projects around the house completed now that I’m not sleeping my life away with daily naps.

I saw my general practice doctor yesterday.... I've lost 25 pounds and my cholestoral is down 63 points since starting CPAP...

I couldn’t have done it without the support of my wife and the awesome folks and information on this forum.

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sleepy711

Re: Newbie would like to hear success stories, please.

Post by sleepy711 » Sun Feb 02, 2014 7:12 pm

I am a respiratory therapist and sleep technician with years of experience in a growing field. I published a book on iTunes (My Little CPAP Book) to help people with setting their expectations, knowing if the mask is actually working (many times it is not for various reasons) and more. If your apneas are low (visible on an auto PAP under info), you have good sleep hygiene (going to bed within the same hour every night and getting the magical number of hours your body actually requires) and the mask is sealing well and not bothering you to the point of excessive alertness, then you might have a problem with your neurotransmitters as well. Most sleep physicians are not testing these levels and many patients find they are still tired even after they have been wearing the mask. One thing just doesn't fix everything.

Don't get me wrong. Not suffocating in your sleep will prevent many problems and you should continue breathing while sleeping. I'm simply suggesting that you verify the machine is actually working (my book explains how you can verify this instead of taking your physician's word for it) and get your neurotransmitters tested. Sounds expensive but it is actually quite cheap and cheap to correct through a naturopath. (Probably about $1-200 to test and maybe $100 to fix with correcting supplements.)

There are many reasons your CPAP may not be functioning optimally. First get the book, go through and make sure you have done as much as you can then get your neurotransmitters checked. It usually involved spitting in a cup at a certain time of day and dropping off the container at the naturopath's office. Painless and simple.

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kismet210
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Re: Newbie would like to hear success stories, please.

Post by kismet210 » Sun Feb 09, 2014 10:31 am

Hi all!

My diagnosis was severe OSA. I thought I'd share my success so far with CPAP....1 year, 4 months and loving it!!

I'm probably missing some things...but especially if you're new to CPAP...keep reading!!!

I tested AHI's 46.4 in my first sleep clinic. Low compared to some people I know. It was still damaging my life. The first night with CPAP (at the clinic) my AHI's dropped to 1.2. Now it fluctuates from 0.0 to 2.5 depending on if I'm fighting a cold or have been out drinking (YES! That affects it!) or a multitude of other things that can affect your breathing. If I'm stupid enough to spend time around smokers I can count on seeing anywhere from 7.0 to 13.0. I experienced no trouble at all with mask from the first night. The clinic put a True Blue on me and that's what I still use.

The only side effects of CPAP have been all positive. Feeling daily like I'm slowly disintegrating...that doesn't happen anymore. Almost ALL of my previous symptoms have disappeared...actual sleep...a lot of memory getting better, but I still have some issues...my hair and skin looks so much better and I've been told my eyes look "alive", shiny, really alert. Speaking of which, some of the luggage under my eyes has disappeared too. My general sense of well-being has changed dramatically for the better. I don't fight to stay awake every moment of every day. I'm not afraid to drive, afraid I'll fall asleep behind the wheel no matter what time of day it is. My blood pressure has returned to normal. I'm back to the sweet loveable me (lol) that I was before the evil creature in the closet took over with horrid mood swings and a vicious temper. I haven't touched a TUMS antacid tablet since the first night with CPAP, compared to going through bottles of them in a month during the nights. No more fighting to stay awake at work. I can sit down to watch TV, read or go to a movie and stay awake. My focus is much better...very little S.O.S. (shiny object syndrome). The Nocturia (frequent trips to the bathroom during the night) has totally stopped (that happened immediately as did some of the other things). No more dry mouth and a sore throat upon waking up in the mornings. No more snoring. No more excessive perspiration during the night. No more morning headaches. My energy level is through the roof most days!

I was afraid to start dating (I'm separated) and decided that I would put myself on a dating site and talk about being on CPAP before even meeting someone to weed out the guys not deserving of the wonderful person I am and wow...met a lovely man who said he wasn't going to let a little thing like that stop him from getting to know me...and it hasn't. It's such a pleasure to go out to dinner and not want to take a nap on the bench seat between courses!! Lol!

Although OSA had nothing to do with the break-up of my marriage...(we both snored heavily) the best thing that ever happened to me was leaving and going to stay with someone who recognized what was happening, told me I needed to get tested, but asked me to leave their home because I was keeping everyone else awake nights. It was a terrible feeling at the time but I'll be forever grateful to them. I'm alive again and living! Sadly the gentleman of that house has since been diagnosed himself with both Obstructive and Central and I try to help him out whenever I can.

Try to stay positive, inject some humour into your treatment...I've named my machine...I carry a picture of my machine and mask in my phone to show people...I wrote my story out for our internal newsletter at work because I work for a trucking company and wanted to share my positive experience, especially with our drivers. People have some very strange ideas about being diagnosed and the treatment itself...I keep a printed copy in my car and replace it immediately when I've given the copy to someone.

Well, now that I have bent some ears and hopefully given some positive help and perhaps a positive outlook to people who are new to this life saving-giving treatment...when you put the best friend you've ever had in your life on at night...try to relax...think only positive thoughts...the benefits you'll experience and what you'll gain far outweigh having to use CPAP in the first place....

Keep smiling!

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sleepydc
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Re: Newbie would like to hear success stories, please.

Post by sleepydc » Sun Feb 16, 2014 9:37 am

I was diagnosed with sleep apnea and started CPAP in August 2013, and write this in February 2014. I don't want to jinx myself, but things seem largely to have settled down and I'm getting a lot of benefits. I found this web site to be really helpful, and reading the "success" stories helped me during some of the rougher moments. I hope that this little contribution might encourage someone else....

I was diagnosed with moderate sleep apnea. I think I'd probably been symptomatic for maybe 5 years or so, and the symptoms started getting much worse in the months before the diagnosis -- tiredness, lots of naps, some morning headaches, etc. I was lucky to have "caught" the diagnosis before any really bad effects had set in, though.

Now, for the most part and on most nights, I sleep really well. I actually dream again, since I now have REM sleep. I wake up a bit groggy at times because I'm actually coming out of deeper sleep, rather than just skimming the surface. I have more energy; don't have to nap anymore; and notice that my body "aches" repair better and I have fewer of them. (Yeah, you actually have to be asleep in order for sleep to do you good. And sleep does you good). It's made a big difference, and I can only imagine the health issues I'm preventing by using the CPAP on a regular basis.

I've been lucky inasmuch as I've only had to contend with apnea, and not other sleep issues or health problems that affect sleep issues. Everyone has a different experience, of course.

Although my experience in getting used to the equipment and finding a good mask setup was luckier than many, it was still not easy. In fact, initially I hated the equipment; felt awful wearing it; and felt sorry for myself every time I had to put it on, wear it, or take it off. There were also a lot of adjustments with pressure, finding the right type of mask and then right mask, etc. And there were lots of emotional issues to wade through for me: accepting the diagnosis, accepting something that would require me to wear equipment for the rest of my life in order to do the simple act of sleeping, etc. It was a bear.

But I stuck with it, and along the way in adjusting and coming to be really greatful for CPAP I learned (or remembered) a few things about life/living that have been helpful. In no particular order:

1) "It doesn't have to be perfect." That applies to life, as well as CPAP. Even now there are a few times when the mask slips or there's a leak or some kind of adjustment needs to be made in the middle of the night. Some mornings my face wakes up with more pressure marks or a.m. wrinkles than others. But when is sleep ever perfect, or perfect permanently? Even before apnea I'd find myself waking up occasionally for whatever reason. For me, learning/re-learning to accept that "it doesn't have to be perfect" helps me simply make the mask adjustment I need before falling back to sleep. I don't need to get caught up in the experience of waking up, or catastrophize it or make it all about apnea or the mask or whatever. That also helps me let go of the temptation to keep expecting perfection from cpap, or to chase perfect "numbers" from analyzing the machine's data.

2) "You can adjust to a lot more than you think you can." I'm no Marine or tough guy. I don't like pain or aggravation, and I've managed to stress over the years about what in reality has been a very blessed and fortunate life. That said, there's some real truth to how resilient the human spirit can be. At some level, if you let it happen, you can adjust to more than you think you can. Living organisms are programmed to do that, even as they are also programmed to dislike change. Yeah, when you first put the mask on, it's uncomfortable and it sucks and you don't sleep well. And ditto for the second and the third night and so on. But I am amazed out how comfortable it has become for me now. Mostly just by letting it happen. I'm amazed at how my body has come to accept wearing the mask; at times I find myself checking to make sure it's still on.

3) "Attitude is huge." I cursed the equipment and myself for being "weak" at needing it. And everything in between. And then at some level I came to realize that how I chose to look at it was huge. It's wonderful to have a diagnosis for a harmful condition, as opposed to not. It's wonderful to have equipment that actually makes the symptoms go away, and that doesn't require surgery that might or might not work. It's wonderful to be the beneficiary of countless others who had to invent cpap, use cpap, and adjust cpap over the years until the machines today are so much better than the ones before. It's wondeful to be able to do something positive for yourself that affects a third of your life. Think about it -- by working through and adapting to cpap, you are automatically improving a third of your life! And that third, in improving your sleep, greatly benefits the other two thirds. The mask isn't any different than when I first put it on -- my relationship to it is.

To any newbies (or anyone else) that might be struggling with apnea and cpap: hang in there! There's nothing special about me or my experience; you can make it.

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Last edited by sleepydc on Thu Nov 20, 2014 9:39 am, edited 1 time in total.

brivers222
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Re: Newbie would like to hear success stories, please.

Post by brivers222 » Wed Mar 05, 2014 2:44 pm

I had my sleep study on Feb 7th where they found after a short 1hour w/o machine that I have SOA, with a count of 90. I was prescribed a CPAP from SleepSolution Inc. and was given the Philips ResMed System One with Humidifier. Also was given the Amara Mask which I am currently using. A Mirage Quattro is on order and being shipped soon.

So far have been using the machine for just under a week now and I have to say I really like what it has done to my sleepyness. The only problem is that I was messing around with the CFLEX setting and put it on 3.... The reduction of pressure appears to be allowing me to snore again (albeit not anywhere like I was). Tonight i will turn it off as I was doing fine without it. Averaging 8.7hours a night of therapy and no naps yet!
Machine: PR S1 REMStar 60 Series Pro
Humdifier: PR S1 Heated Humidifier
Mask: Simplus FFM , Quattro™ FX FFM
Pressure: 10cmH20
Untreated AHI: 90.4
Treated AHI: 1.4

Mabutu
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Re: Newbie would like to hear success stories, please.

Post by Mabutu » Sat Mar 08, 2014 12:51 am

hello everyone many thanks to all who help us newbies overcome sleep apnea, been lurking here since mid last year.

"you stop breathing in your sleep " said an old girlfriend about 2008 (when i was age 39 ). I shrugged it off, but somehow her comments resonated within. Over the next few years i noticed a gradual lethargy culminating in 2013 with a PROFOUND afternoon tiredness and irritability . Then 2013 came headaches. Headaches?? What the hell i never had headaches in my life !! Now all of a sudden i was getting headaches, and i started drink 6 coffees a day just to keep away. Double shot lattes .

Mid 2013 my tiredness got so bad i couldn't be bothered cleaning my house: almost to the point i had to rappel from room to room there was so much junk on the floors. And the depression : i just wanted to die in my sleep sometimes. I lost all interest in my usual hobbies. Stop playing records . Stopped watching movies. I had developed, anhedonia

So i did some reading and , can't remember how i discovered it, stumbled on the disease Obstructive Sleep Apnea. Thats another thing , my once superb memory was being annihilated . I came top 1% of my senior year in high school , and over last few years i was forgetting where id park my car. People would greet me by name at the airport and i couldn't remember who they were.

My sleep study showed destauration to 88% on air.AHI about 7. My worst Obstructive apnea lasted 45 seconds according to my sleep study.
Interesting because a few weeks later i borrowed a finger pulse oximeter and held my breath for 30 seconds and the oxygen saturation stayed at 99%

The first week of CPAP was interesting: vivid dreams . And a sudden energy boost. The dreams are still vivid. But the "euphoria"/energy boost has waned a bit

My headaches vanished almost immediately . Within a month i was down to ONE coffee per day . Sure i get a bit dozy in the afternoons, but nothing like the profound exhaustion i used to have before. Pre cpap id fall asleep talking to people. I could not do long distance drives without pulling over every hour for snooze or rest

My anger levels and generalised irritability have improved. I no longer "snap" at people who annoy me.

I kept ripping my mask off in the first month subconsciously . Now my "mind" accepts it and i can sleep all night with the mask .

Ive experimented with various masks . Found that too much heat , too much humidity was causing an itchy face and nasal congestion (for me) .

My AHI gradually reduced from 3.5 in early december 2013 to 2.0 today . Curiously they are almost all central events (i assume caused by the CPAP)

I assume Sleepy head logs these centrals as "clear airway events" and the resmed s9 machine calls them centrals. They last about 15 seconds each .

I feel better now compared to pre cpap and hope to get even better

My Nurse printed my data for my specialist and it showed a 95th Percentile for pressure of 8.3 (what ever that means)

Ive lost 10 kilos since CPAP in 3 months .My exercise levels did not change. My once "Jeckyl and Hyde" maniacal cravings for chocolates at night has gone. Pre cpap I couldn't resist chocolates , Sweets, breads, carbohydrate foods (especially at night for some reason) . Now i have no temptation . A few months ago i was found positive for Hyperinsulinemia , and my respiratory specialist said Sleep apnea can cause this .

one final thing. SNORING !!!! 2 years ago i developed horrendous, window shattering snoring. So bad id startle myself awake from the sound . That all went from CPAP

I posted because i read about people ripping off heir masks and giving up. I hope they find encouragement

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Debjax
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Re: Newbie would like to hear success stories, please.

Post by Debjax » Sat Mar 22, 2014 2:42 pm

Success stories, eh? Hubby and I have just "celebrated" our 5th anniversaries on CPAP. We don't (really can't) sleep without them. Seriously. We've tried after arriving at a destination so late/early that we were too pooped to take the few minutes and set the machines up....and then got back up within minutes to set them up anyway. We just got our second machines, leaving the originals as backup and travel units.

If you are having problems adjusting, hang in there. My husband hated it for the first 2 weeks, but kept at it for me. He would take his mask off during the night in his sleep. Then, that third week - voila! He was sold on it and has not missed a night since. Hang in there, it's really great.

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Jaz1943
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Re: Newbie would like to hear success stories, please.

Post by Jaz1943 » Sat Mar 22, 2014 3:59 pm

Before I had my Bipap machine I had severe sleep apnea, 63 events per hour which meant I wasn't breathing for 8 seconds every hour, severe acid reflux which woke me up every night, and severe snoring. Since I have had my machine I no longer snore, no longer have acid reflux, and am slowly getting my apnea under control with AHI now at 9.5 average. Working with my sleep therapist I hope to get it below the holy grail of 5 in the future.
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brm2000
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Re: Newbie would like to hear success stories, please.

Post by brm2000 » Sat Mar 29, 2014 1:40 pm

I don't normally submit to these things, but using CPAP has been a life saver for me and I would like to share the good news. The issue was that I was misdiagnosed when I had my first sleep study. My first doctor was not a sleep specialist but a liver specialist who was literally 90 years old. He said that due to the fact that I had moderate sleep apnea, I should try to lose weight, he did offer the machine, but said weight loss was the first step. My next step was to see a ENT and he said that I had a deviated septum, and that a CAT scan later, he would do an operation that would fix that. So I waited and thought about my options and did not get the CPAP. Instead I tried to lose weight by diet and exercise. Since I was not sleeping properly, I was always tired and forcing myself to exercise and had a ravenous appetite. I looked tired and never seemed to lose weight. My primary care doctor remarked that at times my heart rate was too slow in the morning and ordered an EKG, everything turned out fine, regarding the heart. I had high blood pressure that never seemed to go down regardless of the medication I was on, and exercise.

Fast forward three years, a new primary care doctor, and a new sleep study. This time I was diagnosed as severe having an AHI of 62 and oxygen levels below 50 percent at times! As well as having periodic leg movements, and sinus bradycardia, night sweating, night time urination, snoring, stomach issues and being just plain miserable. In the intervening period, I had not gained much weight, but felt much older. The new sleep doctor was going to pull my licence, if I fell asleep at the wheel, but I convinced him I did not, which was true. I had somehow bulled myself through with the sleep apnea and had acclimatized my self to having less sleep. I was just barely surviving, but I was doing just fine IMO.

After getting the Resmed S9, with a nasal mask, it was a world of difference for myself. I have been 100 percent compliant for one year to this date. Except for when there was a power failure, and the next day I felt miserable. My setting is at a water pressure at nine, and medium humidification. I use a set back of two, which works for me, and 15 mins. of ramp.

The recovery happens in stages, for the first three months your brain and body recover as you sleep through the night, but you just feel better in general. However after that, is when the real changes occur, as the benefits become permanent and solidify. You will notice that your memory comes back, and that you have greater self control, and at this stage, other people start noticing. With myself, there was a severe positive personality change, I realized that I had been very anxious before treatment. As well, all of my exercising started to have dividends like muscle growth and energy that never occurred previously to the CPAP. For myself it was starting a new life and I noticed that people sometimes did not know how to take the new me, as I behaved somewhat differently.Thats what sleep does for you! No more teeth grinding, night sweating, lethargy, night time urination, snoring choking stomach issues, better skin, heart issues resolved, blood pressure stabilized, memory returning, all because of Cpap!

To make a long story short, get to a sleep specialist if you can and get a sleep study if you can. If for what ever reason, you can't afford either try to get an auto titrating machine and see if you need it. Just do it. Try different masks, if yours does not work, I was lucky and just had to get a larger mask do to proboscis issues and research, research, research. I can not speak more highly of these forums and scour the net for advise. Be your own advocate, as is often stated this is a woefully under-diagnosed phenomenon.

Moni
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Re: Newbie would like to hear success stories, please.

Post by Moni » Tue Apr 01, 2014 5:39 pm

Mabutu could have written my story! The last few months before I insisted on a sleep study, I had a migraine every day and all the retching caused broken blood vessels in the back of my eyes (which at first the doctor said was caused by "uncontrolled BP", but no). I couldn't think straight, couldn't remember the simplest things fell asleep at the wheel doing 70 mph and crossed over the center line with my family IN the car with me. Luckily my husband grabbed the wheel. It happened so fast I did not even realize I was getting drowsy so I could pull over. I stopped driving. I run my own business which really suffered from my inability to get anything done and if it got done, a certain percent was WRONG. I was constantly bumping into things, falling into things, banging my head and shoulders into door jambs. My "fibromyalgia" was out of control. I had a nap pad on the floor in my office. I was trying to "eat myself awake"..anything to get energy and packed on some pounds.

Been on CPAP for about 8 weeks and I can definitely feel myself coming alive and some brain cells firing back up. My first night on CPAP I slept for 11.5 hours and have been slowly decreasing since then. I am losing some weight, by diet and starting exercise. I don't think about when or where I can take a nap from the moment I wake up. I am not in constant pain. Heck, I may not even have fibromyalgia after all. I have been going downhill now for at least 7 years but hopefully I can turn it all around this year. I am months and months behind on just about everything, but I know I will catch up.

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