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Scared newly diagnosed got sleep study results today - kfujioka - 09-05-2014
Hi. I am rather new to this forum. I just received the results of my sleep study today. ( I had the study July 20 this year but no one explained the results until today.) today I saw a sleep doctor for the first time. He showed me the study results. I have 86 apneas (events, they say) per hour! My oxygen level was only 40 percent. When I saw that number I felt faint. However when there were no apneas, it was 97 percent. (That must have been a short time.) No wonder that I am exhausted. Most apneas were Obstructive, only 12 were central apneas. The central apneas reduced to 0 when pressure was 10 (Incoming) and 6(outgoing). I have a bipap machine so the pressure is different when breathing in and breathing out. (Of course, you all know that. But this is new to me. ) My regular pressure is 12 incoming air and 7 breathing out air.
The sleep doctor examined my throat and said there is a lot of tissue in the back and my throat is narrow. My chin goes back a little. He suggested I see an ENT for possible throat surgery. Ugh! Sounds painful!
I had no idea my apnea was so bad. I have only had my machine since August 15th and I still haven't mastered using it yet. I can only sleep for 2 hrs max. I have tried several masks, at my own expense, cause the health insurance only pays for 1 every 6 months. When I am not stuffed I, use the Air fit P10. (I am comfortable with that one.) But I am often stuffed. Today the sleep doctor suggested the Mirage Liberty. (It just so happens that I heard about it on this forum so I ordered it online already.)
I am thinking that maybe the Hybrid mask might be good too. Whatever it takes, I will master this machine. What scares me most is loosing my life from not being able to master it soon. I feel so much pressure to master using the bipap machine since today's news.
In short, I am in shock due to hearing the results for the first time. I don't even know how I stay alive at night. ( I can't believe my reg. doctor didn't tell me anything. She is the one who ordered the bipap. When I went to her office for the follow up to the study in late July, all she said is, "You have sleep apnea. You need a bipap machine." I didn't know what to ask so I said nothing. Everything I have learned about sleep apnea, up until today, was from this forum. At the health provider, where I got the machine, they didn't tell me anything. A sales rep. showed me how to clean the machine but not how to use it.
Tonight my nose should be clear (I use Afrin spray 3 days on and 3 days off.) When I am using Afrin, my nose is clear.
But how can I keep,the mask on?
I was thinking that I can try the surgical tape to keep my mouth closed. (I take off the mask, I think , when I open my mouth.)
I heard someone on this board that uses surgical tape so I ordered it online and it arrived today. I tried it during the day and I noticed it can be easily removed by the power of my jaw opening but if my jaw is just hanging, perhaps it would keep my mouth closed. If my mouth stays shut, I might not even wake up and take off the mask, I am thinking.
Any moral support?
Anyone had throat surgery?
I will gladly do it (surgery) if it will really work. The sleep doctor, said it may remove all the obstructive apneas but I am skeptical. I actually researched that online. It is not always effective. If it would reduce the apneas by half or more, that would be good.
Any support would be appreciated.
Kim
RE: Scared newly diagnosed got sleep study results today - Galactus - 09-05-2014
Hi Kim, welcome to the wonderful world of Sleep Apnea. I also had much fun with the doctors and the dme and providers etc.
Some quick info on the mask situation. If you are buying masks and paying for them on your own you shouldn't be. They can exchange your mask for you within 30 days and if you push them they will. If you don't want to argue with them and are buying masks anyway look at teh suppliers list there are many that offer a 100% money back guarantee if you buy a mask and you have 30 days. Buy a mask try it, don't like it return it for an exchange for another until you find one you like. I settled on the P10 so far and I love it. I find the nasal pillows actually clear my stuffy nose for me. Many here use the nasal rinses of saline. As to taping one's mouth shut most people here suggest against it. Chinstraps seem to be the way to go. For me I kept using the mask while awake and finding how to keep my mouth aligned when I went to sleep to keep it closed, and I got it after some trial and error.
MORAL SUPPORT! HANG IN THERE!! WE'VE ALL BEEN THERE AND DONE THAT. I PROMISE IT GETS BETTER!!
All the best, and I hope you feel better soon.
RE: Scared newly diagnosed got sleep study results today - Tez62 - 09-05-2014
Kim, at least you got your results and you know that now you have the best treatment possible. I have heard the throat surgey is extremely painful and have only heard of a couple of people that say they have been cure. I have heard of people that had it and haven't been cured and regretted going through it but it is a personal choose. Personally I wouldn't use tape, I believe like you have found, our jaws a too strong when we are asleep. Try a chin strap or the next thing is a full face mask, they are not that bad but take a bit of getting used to. I wouldn't use the word 'master' the BiPap, we all have problems from time to time, I look at it that my CPAP is looking after me, we shouldn't fight it and we need it to work for us. This is now your best friend. Good luck with it and keep asking questions
RE: Scared newly diagnosed got sleep study results today - Peter_C - 09-05-2014
Moral support - you bet~! Finding a good mask is the toughest part. You might consider wearing mask and hose while watching TV or reading - the sooner you get to 100%, the better for you and your health.
My knowledge and info and history is old school, before the CPAPs were data capable. I didn't start learning until I joined here (notice my join date) - Learning to read your own data is core, as it seems everyone else only cares about is compliance. "AHI" and "LEAKS" are the two core factors to watch - gotta keep the leaks under control for your numbers to be accurate.
After over ten years on a nasal mask, I am now on a FFM (Full Face Mask) fulltime, as I can't keep air from 'hissing' out my lips.
I've had both throat and nose surgery. Would do the nose again in a heartbeat~! Am told that the throat surgery lowered my numbers somewhat, but once Mr Flappy is gone (they do not tell you this) it is way too easy to inhale food - and have coughing fits - so think on it and get a second opinion first would be my suggestion. But if your pressure is too high, the surgery can help lower it - think it lowered mine by like five points - rarely is it a silver bullet to get you off the CPAP.
Learn it, love it, put it on anytime, naps too - sooner you reach 100% compliance, the sooner you will stop fighting the mask. Play with the humidity setting - I like mine high, some do not - but my nose clears up with my mask on - stuff to think on and try.
Finding the perfect mask is tough for all of us. If you must use your own funds, try masks that offer FREE returns - Supplier #1 overs many with free returns at no cost, and really no hassles either~! I was without insurance and on a low fixed income, until this July for about 3yrs - so I feel for you.
Like everyone else, I can suggest masks that many people love, but you may well hate them - it is that hit or miss. Hang tough, when I started there were few choices in masks, and you made yourself fit the mask - mask liners, really tight headgear (truth is I have mask marks for the first 2-3hrs after waking) simply do what you gotta do to train yourself to love your dream machine. Tennis balls sewn into a T-shirt to keep you off your back? Sleep in a chair with the mask on for a week? Whatever works - make it happen
RE: Scared newly diagnosed got sleep study results today - archangle - 09-05-2014
Welcome to the board, Kim.
Don't panic. Stay with the CPAP. You lived this long with apnea, a few more months getting things perfect won't matter. Presumably, you've improved your apnea already.
Get the SleepyHead software if you haven't already done so. That way, you can check your own results and help figure out a lot of your problems on your own. You can check your data the next day after having a bad night.
Stop using the Afrin immediately. It will screw up your nasal passages and make congestion worse if you use it more than a few days a month. If you've been using it 3 days off and 3 off, you're probably already somewhat addicted to it and will need to suffer through congestion for a while until your nasal passages heal up. It shrinks your nasal passages, but it irritates them and they swell up more, especially after you stop using it.
Try Sinus Rinse. It's an over the counter saline rinse. You may also try one of the cortical nasal sprays. Nasacort is over the counter, or you might try prescription nasal corticosteroid.
Try a chin strap to help you keep your mouth closed. You can buy one or try the Ace bandage DIY strap mentioned in my links below.
!!!DO!!!NOT!!!GET!!!SURGERY!!! until you've exhausted all your CPAP options. There are lots of chop happy surgeons out there with delusions of grandeur and visions of dollar signs dancing in their heads. You might go with a tonsillectomy if you have enlarged tonsils and need one anyway, but avoid anything that involves the uvula or the infamous UPPP operation. Success rate is low, the doctor claims success when there's just a "50% reduction" in apnea. There are also a lot of bad side effects. Google for UPPP horror stories.
Don't panic about Central Apnea. It's not necessarily any more harmful than obstructive apnea, just harder to eliminate. Get SleepyHead and keep track of it yourself. Figure out your current AHI and CA numbers.
You can buy your own overnight recording pulse oximeter for $100 or so. Supplier #19 is one online seller.
I use the CMS-50D+ (The PLUS is important. The CMD-50D Doesn't record.)
What in particular stops you from sleeping after 2 hours?
Enough for one post. Stick around. There are ways to deal with most CPAP problems.
RE: Scared newly diagnosed got sleep study results today - Terry - 09-05-2014
(09-05-2014, 12:52 AM)kfujioka Wrote: The sleep doctor examined my throat and said there is a lot of tissue in the back and my throat is narrow. My chin goes back a little. He suggested I see an ENT for possible throat surgery. Ugh! Sounds painful!
Avoid the surgery until you've tried everything else you can possibly try.
The success rate for all the surgeries is terrible and it's entirely possible for you to end up in worse shape than when you started, and have non-repairable damage.
The worst that would happen with CPAP is your friend/spouse might make darth-vader jokes.
Even if there's no damage, it only works for about half the people that get it, and even when it works, often only works for a little while.
Terry
RE: Scared newly diagnosed got sleep study results today - surferdude2 - 09-05-2014
Hi Kim!
I also recommend Nasacort for your nasal stuffiness. It's safe and effective for daily use, year around if need be, whereas Afrin is damaging to the nasal passages if used long term and can have terrible rebound problems.
If you're not sleeping on your side, doing so can make a huge difference in your AHI event count. I have always been a back sleeper but have had to adapt to side sleeping to make the CPAP work with the standard pressure equipment (< 20 cm wc). A high pressure requirement can ruin the CPAP experience for many folks, especially those just beginning with the therapy. I have managed to develop a half way position between side and back that allows me to get the benefits of side sleeping while keeping most of the back sleeping enjoyment, such as leg, hip and shoulder comfort. It requires me to place a firm oversized pillow in such a position (aligned with my back) that it supports me in a half way angle that approximates a 45° angle so that I can still keep the side of my face planted on my pillow (with no neck pain) while still being able to align my hips so as to be able to stretch my legs and not have to cross them. It's quick and easy to set up and it's giving me the best of both worlds. With this et up, I can alternate between the side sleeping position and the half-back position (sounds almost footballish) if/when I feel the need to change.
HTH and good luck in your quest.
RE: Scared newly diagnosed got sleep study results today - herbm - 09-05-2014
First, it's not easy getting over the scare, but recognize you are now STARTING to get therapy and that your events will come way down as quickly as you can 'stay on the mask'.
I have a ritual (or several) for clearing my nasal passages which I used at first to allow the P10 to work.
In my experience, once the airway was open, AND the mask was on with pressure it would hold my nose open pretty similarly to how it holds the throat open for therapy.
Though an inveterate mouth breather, this effect allowed me to very quickly start using the P10 with NO preparation (no ritual) and the side benefit is my congestion is practically a thing of the past.
Nasal lavage is your friend (sniffing saline through your nose) in this.
Talk to your doc also about Sudafed or similar (depending on your other meds etc.) which mine allowed and/or nasal sprays.
Nasonex or Flonase or some such, the one which is Fluticasone gave me quite a bit of relief and it's not like the decongestants where there is a tendency to become dependent. This one has recently gone OTC in the US (but I got my doc to prescribe it so the insurance would kick in.)
Don't dismiss decongestionants as a TEMPORARY solutions however -- you don't want to become (or remain) dependent but to get you started it MIGHT be worth using one briefly.
Back to nasal lavage which I and practically every doc also recommends in my experience:
This an be as simple as a cup of warm water with some salt added (see Google search for recipe and exact proportions), to adding some bicarb, to using a Netti pot (an entirely unnecessary addition in my opinion) to the SinuGator from Neilmed (see amazon).
SinuGator is the best I have found, less than $30, and comes with enough sample saline packs to get your started (but in the long run make your own salt/saline mixture.)
If you order a SinuGator do NOT wait for it to arrive but start the simple "cup of saline" method where you make the solution in warm water and SIP it through your nose.
How? Just place the cup ON your UPPER lip instead of at your mouth, tip and snort gently, spit and/or gargle until the cup of saline is gone.
Sounds weird, even gross but it is actually quite comfortable if you get two (or three) things correct:
Temperature should be WARM, not hot.
Saline must be close to body fluid in saltiness -- adding too little salt burns as much or more than adding too much. The trick is to get it "just right" but that is a pretty big range (I can usually just dump salt into the cup at this point and do just fine.)
At first, follow the (Internet) instructions for "isotonic saline" (just makes it about body fluid salty) and that will give you exact proportions.
Third thing (optional): Adding the bicarb acts a a "buffer" and makes it even more comfortable for some people.
Try to irrigate (or lavage) a few hours before bedtime to give you sinuses time to fully drain (lots of saline stuck on your nose can feel just as stuffy as mucus).
BUT if you wake during the night with a stuffed up nose, just GET UP and go clear it again.
I was willing to use saline, flonase, decongestant spray, and sudafed to GET STARTED but quickly weaned myself off all of them so that now I use Flonase on rare occasions and seldom even need the saline.
RE: Scared newly diagnosed got sleep study results today - trish6hundred - 09-05-2014
Hi kfujioka,
I would avoid the surgery. You might try a chinstrap instead of taping, there are plenty of other uses for the surgical tape.
You have a great attitude, just make your mask, (whichever one you choose,) & your machine, your friend instead of your enemy and you'll be fine.
RE: Scared newly diagnosed got sleep study results today - Homerec130 - 09-05-2014
It is said a journey of 2000 miles starts with the first step (followed by a flat tire and broken fan belt). You have taken that very important first step. You recognized you have sleep apnea and want to do something about it. I was diagnosed three years ago and am on my second machine. Using it at night is now second nature. Granted, there are some rough spots. I have one every now and again.
I use a full face mask (FFM) and have had outstanding luck with it. When my sinuses clog up, I use either flonase (covered under my insurance) or a saline spray. I have my humidifier set on low, but when really bad, I bump it up. I found that if I keep my filters changed, my allergies haven't been as bad. Guess it is all that filtered air.
In regard to surgery, I am lucky as my sleep doc is not a firm believer in it. He has said he has not seen enough data to convince him that in the majority of the cases, that surgery is the answer.
If your machine has a data capability, I would recommend downloading Sleepyhead to see your results. It may look like gibberish at first, but after a while, you will learn how to interpret the data. There are a lot of good folks on the board who can answer your questions.
In a nutshell - there is plenty of support here. All of us are on the same journey and willing to share what has worked and what hasn't.
Good luck on your journey,
Homer