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Are either of you feeling more rested when you wake yet?
Leaks are normal. Can you reset your mask to get rid of them? I probably reset my mask at least 5 times a night because I toss and turn so much. Of course your high pressure would make them impossible to ignore.
Just to share, I woke with the machine running and the mask on the floor a couple nights ago. I think I have been on the machine close to 12 years now. I know it is over ten. That is the first time that is happened in years. I slapped it back on and went back to sleep. Wonder what was bugging me. I haven't checked the read out yet to see how long it was off. I disabled the alarm, because it annoyed me when I wanted to take the mask off to take a drink of water etc.
I have also developed a whistle in the exhale port of one of my older masks. So there never is perfection, just improved health.
Also, some people experience weight loss with improved sleep. Most of us however, just find more energy so do more activities and eat more to compensate. Finding balance is key.
Seem to have solved the issue of nasal-throat dryness caused by the high pressures I have to use: I went off the allergy meds that were drying me out and irritating the tissue, added nasal irrigation (use warm filtered water and Alkolol solution) before bed and Biotene products (toothpaste is great, use it with my regular since I don't like taste), and crank the humidifier to the max setting. I've been able to tolerate pressures of 20, 21 without getting so dry that I can't swallow.
However, I still only managed an hour and a half wearing the mask to bed. Just couldn't stop the leaks, even with a mask liner, and get comfortable enough with headgear pressure on my head. Hard to get the pillows, mask position, neck position relaxed enough to fall asleep, though I got close.
Guess it will just take more time. May have to switch to another FFM, perhaps Quattro isn't The One. My sleep doc will help me with that when I go see him.
Anyway, I was encouraged enough by solving the dryness issue that I downloaded Sleepyhead software in hopes that I'll have something to report soon.
Oh yeah, I lost two more lbs, down 17 from my all-time high (during sleep study). The anxiety over this machine has had an unexpected benefit of depressing my appetite.
Edited by: ELLEN1159 at: 7/24/2013 (11:45)
Thank you Dan and good for you for lasting an hour! My throat and theback of the nasal pharynx feel like something is stuck back there, so I think a visit to an ENT is warranted quickly. For all I know I couldhave nasal polyps or something. If I could get a handle on the dryness and irritation from the air pressures, it would help tremendously.
Congratulations on wearing the mask at night! That is a big first step!
I appreciate your reply to my posting the other day. Even with what you are going thru you reached out to reassure me. Big Thanks!
I was able to wear my mask for just over an hour last night and even slept for about 15 minutes. I was glad that I didn't freak out completely when I woke up using it, but it was still unsettling enough that I took it off for the rest of the night. Will try to do better tonight.
Hope you find the new mask more to your liking!
In front of me, today, is My Own Everest.
Today is a gift.
That's why we call it the present
Texas is a state of mind. Texas is an obsession. Above all, Texas is a nation in every sense of the word - Author John Steinbeck
Resolved to try to go to bed with the mask on last night. I had adjusted the ramp to start at 11.5 for 30 minutes. I was just finding a relatively comfortable position on my side where the headgear didn't bother me too much, the leaks were minimal aroudn the eyes, and I had my chinstrap on and pillows just underneath to reinforce keeping my mouth closed. I notice some tension in my jaw and tongue because I'm not used to keeping my mouth closed inmy sleep. Was getting close to drifting off when the high pressures kicked in, and even having my humidifier set to 4 (5 was just too warm and stuffy inside that small Wisp mask) couldn't compensate for the scirocco winds assailing my upper palate and throat.. Within minutes my throat was dry and I was choking. Tried a couple of sips of water but that didn't do it.
I have allergies and I'm taking Allegra twice a day and using my Nasonex spray twice daily per the sleep doc's suggestion as a way of combatting the nasal congestion. The meds work well, but I'm thinking that the back of my throat and my upper palate may be irritated from the post nasal drip (wondering if allergy meds also dry you out?).
Probably a question for an ENT. Going to try the Quattro FFM today to see if that helps. I didn't like it because of the way my mouth would fill up with air (I know it's for mouth breathers and if you have allergies.) Maybe the nasal mask is concentrating the air flow so hard on my tissues that they are drying out and uncomfortable.
I freaking hate this machine. The only good thing about my angst is that for the past couple of days I've been too wound up to eat between meals, and I've lost another 2 lbs. Yesterday my total caloric consumption was just below 1200. That's never happened in my life.
Your bed and night stand sound perfect to avoid rainout.
I don't know a lot about those smart machines, but it does make sense that if you are holding your breath while adjusting the mask the pressure would raise and would also raise if the mask is not sealed trying to go to highest available pressure to compensate. Shouldn't it lower the pressure though once you start breathing?
Keep trying and document your experiences so you can remember to tell the doc at your visit.
Haven't had issue with rainout yet, my mattress is higher than normal because I have it and the box spring on top of a metal bedframe that allows underbed storage, so I almost need a step stool to get into bed! Nightstand is lower than normal, too.
I went for a walk before attempting a nap this afternoon in the recliner. I guess I was alittle out of breath as I was putting the mask on, and my air starts blowing without me touching anything if I draw in some breaths in the mask, but the full pressure kicked in as I was putting the mask on and it just took my breath away. I felt like I was choking and couldn't breathe, and even though I tried to sllow my breathing down, I couldn't get over that suffocating feeling so I turned it off. Very strange. Yesterday was fine, today was not.
Going to try to sleep for a while tonight in the recliner with the mask on. I'll remove the hose before I adjust the mask so i don't get blindsided again by the wind tunnel.
Kale....Yummmm....The miracle food. I juice kale with celery, cucumbers, apple and lemon. It was medicine at first and then, I became addicted. It also makes my skin lovely soft.
Glad you got the chin strap. Isn't it nice to find the right people to help and advise. The secretary at my clinic was a cpap user. She was sympathetic. It helped.
If the humidifier is too high you will get "rainout" which is condensation in the tubing. I don't think it will get too hot. I have never experienced that. I do like breathing in a steam room, so I probably am not a good one to sympathize with the mask being too steamy.
If you do get rain out there are a couple of methods to run the water back to the machine. I keep my machine lower than my bed. Other's drape their hoses overhead so the half of the hose attached to the machine catches the condensation first.
Regarding the tissue removal surgery. Everyone that has had that who posted here just delayed cpap use. Losing weight and exercising all muscle groups seems to be the best protection.
Stopped in at the sleep center this morning with machine to speak to the administrator, who knows more about these machines than the docs who prescribe them (this woman is a treasure, so warm and compassionate but truthful as well). I asked about lowering the pressure and she recommended against it, saying that I would end up with what they call "air hunger", struggling to breathe, as bad as not doing the therapy at all. I guess right now I need those high pressures in my airway.
She suggested that I raise the humidity to 3 or 4 (2 was comfy for me yesterday, I'm worried that three to four will be too warm and stuffy in that small nasal mask) to combat the palate and throat dryness that makes me need to cough and swallow.
She also gave me a chin strap to use to keep my mouth closed so I could contine with the nasal mask -- the mask is key, as she says. I told her about the Chin Up adhesive strips (they arrived in today's mail) that work like Breathe Right strips to keep your lips mostly closed. She hadn't heard of them but wanted to know how they work out for me so she can tell other patients.
Lastly, she gave me hope that if I continue to lose weight I can absolutely lower my pressure needs. If I were willing to use a mouth guard and/or the tissue-removing surgery, I could lower them immediately, but my gagging reflexes woulnd't tolerate a mouth guard (had one for night-time bruxism that I stopped using 17 years ago) and I havent' heard very good things about the surgery (if I could afford it).
I need to get the excess weight off for a whole host of other reasons besides apnea, so I went to BB&B and replaced my broken Cuisineart blender with a Nutribullet so I can make my kale smoothies again. Yum.
So glad you thought about the humidifier yourself. The prayer/meditation is a great tool in so many aspects of our lives. I use that too.
You have what it takes to be successful. I am just really concerned about that max high number. What was the recommended number if you did not have a flex machine?
The journal idea is excellent. Especially if you write down what you ate/ when and also when you exercise. You will get and idea of what helps you sleep best.
Glad you got on top of the reactive nasal congestion. Our minds are very strong and can help us adapt as long as we keep trying.
Cathy, you are a living doll to help me. I've actually started to keep a bedside journal where I write down my anxieties and fears as a way of processing them out of my head. For example, Monday I had a root canal. I was a wreck the night before and the morning of, not worried about pain (I've had one before and the dentist numbed me up great), but fear of having all that equipment crammed in my relatively small mouth, having to keep my mouth open for an hour and a half, and that dang dental dam that my tongue pushes against. I have an intense fear of gagging, as well as claustrophobia. Well, in the waiting room I did my deep Lamaze/meditation/tai chi breathing, in through the nose, out through the mouth, slowly, and that helped. I also prayed (Jesus, his Mother, every saint I could remember from Catholic school!) for calmness and strength and bravery. Guess what? It wasn't awful. I didnt panic, gag, choke. It was a complicated, lengthy procedure but my worst fears never materialized.
I want to be like that with my machine. I did not use the machine at bedtime last night. I just couldn't. But I did attempt a nap today for a little over an hour ina recliner. I noticed that air keeps entering my mouth and wants to escape and the noise and sensation kept me from falling asleep, but I did rest and I kept the machine on despite the mouth burps/chipmunk cheeks. I tried putting the humidifier on 2 and that seemed to help my mouth and throat dryness a little, without getting too stuffy.
On the Cpaptalk forum, several people have suggested that I call my doc and ask them to lower the pressure a little bit so I can at least get used to falling asleep and get some therapy, and then gradually raise the pressures back up. They don't know that I'm not sleeping at all with it, and no sense waiting til Aug. 6 for my next appointment.
When I'm awake and using the machine I never see the number go over 20, even though it's set to a high of 25. I don't use the ramp anymore because anything less than 10 made me feel like I couldn't breathe. I am happy to notice that at least now, I don't have nasal congestion when I use the machine.
www.youtube.com/watch?v=bC7OtbY71-U The wisp is adorable. You can read in bed with it and no forehead divots. I can see why you might need cushions for the head gear though. This is much smaller than my nasal mask, less room for air diffusion. You might talk to your doctor about a different pressure if this is your primary mask.
This is my mask. The one on the head form is too big. Mine is not that big, but still a lot roomier than yours. www.cpap.com/productpage/comfortgel-
sk-phillips-respironics.html I want to try yours. Maybe next time. I also want to try a cloth mask, but they are expensive.
The easiest way to raise the bed is to put blocks under the legs by your head board. www.walmart.com/ip/Adjustable-Bed-Ri
rs/5148131 however, your blankets slide off the foot of your bed. I like lots of standard size pillows to toss around and shove where ever I need them to get comfortable. You might consider a foam wedge to use on top of your mattress. www.jcpenney.com/dotcom/bed-bath/sho
_17588969&cpncode=30-219964639-2 They have cheaper ones at Walmart, but the memory foam sounds heavenly.
Do not eat three hours before bed. Eating makes it harder to sleep even if it mentally relaxes you. Even water before bed can create problems such as aerophagia. Better to go to bed hungry. I dare you to take the Sleep Challenge on Spark People. www.sparkpeople.com/myspark/challeng
Glad you do not have the nasal pillows. The nasal mask has more pressure than the full face mask, but doctors don't generally adapt pressure between those two styles. I only use the full face mask if I have a sinus problem, but haven't needed it in years. You can eventually train your nose to behave.
Your throat may be dry because you are mouth breathing. That is where the chin strap helps. I like to use the saline spray for sinuses to lube them. My husbands doctor recommended KY Jelly for the nose to soften it when he was on oxygen. I also have a prescription for medical nasal spray, but hate it. Only use it as a last resort before I opt for the full face mask.
I had kind of forgotten how hard it is to cough and swallow while on the machine. Just pull the mask gently away from the face. The straps should be loose enough to do that and cough, swallow or talk. That is also how you reset the mask when you roll over and develop a leak.
Some leaking is natural. Most people cinch their masks down so tight they reshape their faces trying to prevent leaks when they roll over. Better to keep the mask loose and just reset it when you roll over.
Your flex pressure is still very high. Anything over 14 creates a wind tunnel. My step daughter has a flex machine and it kept ramping up to maximum. I don't remember how she solved that issue. I will look on Lanky Lefty for more info on that.
You have great goals for tonight. Sometimes it is just easier to master one thing at a time. Regarding the exercise, do you have a local swim pool reasonably priced. I highly recommend walking laps in that with a friend to exercise and get the blood flowing without damaging the back.
I repeat myself a lot, so as you are trying to grasp all of this, keep asking the same questions over again, till you get an answer that makes sense. I hope the others will pitch in with their experiences too.
going to do a little research now.
I'm so glad to hear from you. I went for a 'split study" at my sleep center (wonderful staff, by the way, I lucked out), first half of the night diagnostic, then when I woke after three hours as I usually do, they put a Quattro FX full face mask on me. I had improvement only after the pressures were set at 20 or higher. I had 108 events and my oxygen saturation dropped to 69% just before I awoke from the diagnostic part. I did manage to sleep a few hours in the lab with the mask on but unfortunately, not at home since. They sent me home with the Quattro mask. Got my machine on May 6 but have not been able to sleep with it since I got it.
I went from Quattro to Amara mask, having problems with leaks, solved leaks with fabric liner, but still felt too stuff, claustrophobic, throat dry, you name it, to fall asleep. Went for followup to the sleep doc and they gave me the Wisp to try (regular nasal mask, no pillows). However, they said nothing about lowering my pressures; what they did do that helped a lot was fiddle with the "flex" pressure so I can exhale easier.
I find that I freak out with the initial blast, that takes my breath away, but after an hour my breathing gets easier and I'm comfortable with the machine (I'm sitting up watching tv). However, that' usually when my throat catches and I feel the need to cough to get more saliva down my throat before I start gagging. I bought some Biotene rinse but I dont' think it's enough to really help, especially all night long. I have GERD so I'm wondering if my throat is raw from the acid coming up? I have a bad habit of staying up too late (I'm unemployed right now) and of course I get hungry and need a snack to be able to sleep, and then I suffer from it when I wake up with mucus gagging me (the acid apparently goes up to my nasal passages and creates the mucus, then gravity brings it down when I wake up and am vertical). Someone suggested I raise the head of my bed four to six inches to see if that helps. I'm looking for something to put under my box spring to do that.
Yes, I am a hot mess. And completely confounded that I can't get comfortable with this machine. I have to go back to the doc Aug. 6, my 90 day anniversary of getting my machine, and I'm worried that the DME and insurance carrier will not cover me any longer for non-compliance.
I'll check out the link you provided. In the meantime, I'm waiting to receive these fleece covers for the Wisp headgear that I'm hoping will make tthe side plastic pieces comfortable enough for me to lay my head down and sleep on my side.
I am scared to death every night that I'm not going to wake up. My numbers are serious, and besides that , my sleepiness interferes with work and exercise and every other aspect of my life. Calorie restriction only goes so far, I need to be able to walk, and right now I can't go more than 15 minutes without my back hurting or feeling pain in my jaw.
I've resolved that for tonight I'm not going to eat anything after 7 p.m., I'm going to bed at 10, and I'll put the mask on and try to fall asleep.
Can't figure out why I was able, despite my discomfort and anxiety, to catch a few hours' sleep during the titration, but not at home since.
Thanks for taking the time to respond to me.
Hi Ellen, Welcome to the team. Quick story about me. I almost died from Sleep Apnea. I spent four days in the hospital and a couple months recuperating. That really motivates you to be compliant. First night on the machine and I woke energized, but I kept ripping the mask off in my sleep. It left sores on my face and the forehead piece did not flex. I had a hole in my forehead for about three years from the mask reshaping my face. I had to tie my jaw shut with an ace bandage. That was before chin straps. Remember the kid with the bad tooth in Little Rascals. That is what I looked like. I switched masks five times in the first six months. The masks were too big for my petite face so either leaked around my eyes or upper lip. I even tried the nasal pillows. They gave me a sinus headache. Finally, I found a mask that actually sealed and learned to live with the forehead divot. It took six months of war though to get a decent fit and it was several more years before the flex was added to the forehead unit. Okay so my story wasn't short. LOL.
Your pressure is really high. I have some concerns about the nasal pillows. Mask pressure for full face masks needs to be higher than nasal masks. What set up did they use in the hospital when you did the titration study with the machine and mask?
Anxiety_and_CPAP.html This link has some good ideas for adapting to the mask. My advice is to keep slapping that mask back on every time you wake and find it off. Also, purchase a chin strap. It will make the mask harder to take off in your sleep. Last of all think of it like new eye glasses prescription, new heels and an underwire bra. None of these things are comfortable, but the initial dizziness from a new prescription for glasses will pass as long as you wear them. A good fit on an underwire bra can be a blessing. Both comfortable and supportive. That is why a good fit on a mask is imperative. Forget the heels and get a good pair of athletic shoes so you can walk and exercise. I have lost 50 pounds on SP and have been able to lower my pressure down to 8-10. It is a blessing not to have the wind storm from the higher pressure. I have central apnea in addition to obstructive apnea, so will probably never be without a machine. If you didn't have apnea as a skinny teen, then, yes, you can train like an Olympian and find the success you seek.
Keep describing your problems, and I will keep researching information for you. The only reason I am knowledgeable is because I felt so alone when I got my cpap ten plus years ago. The techs made me feel bad for complaining about the forehead divot. I am determined none of you are going to experience that or end up in the hospital with an apnea event you didn't wake from.
In addition to exercising and losing weight there are throat therapies to help strengthen the palate too. If you are interested, I will send links to that info. In the meantime keep putting the mask back on at night.
Best of luck with this new venture to a healthier you.
Welcome! Altho I don't post often, I do think this is a GREAT grp for resources on apnea. I have a CPap but am now just using a mouth guard that I can use better. My face is thin and I cant get a good seal. WELCOME AGAIN!!
Thanks, Kimmer. I don't think I'm a candidate for an appliance due to the severity of my apnea (I think my sleep doc would have recommended it), although my son uses a Snore Guard appliance that pushes his jaw out and he loves it, no discomfort (yet). He's thin, though. I don't think I developed apnea until I started to get really overweight. I'm 255 on a5' 4" frame but there's no way I'm gonna drop 120 lbs. in a couple of months, so I'd best get used to this machine.
I'm used to being able to do anything I set my mind to, which is why I'm so frustrated that I can't get comfortable yet with my mask and machine.
I have joined Cpaptalk.net and they are wonderful there, but I need a safe place to talk about my efforts to lose weight and not need this machine.
Ellen, you came to the right place. GRAMMACATHY is an expert on this subject and she can guide you. I will also comment that my brother-in-law was like you; he could NOT wear a mask, no way, no how. He is now using a dental appliance and he loves it. Some people just can't conquer the machines.
Cathy, are you there? Help this lady out. I know it's what you do best. (Really, she is the greatest.)
Long Live Wombat Towers and all who dwell within!
My name is Ellen and I've been lurking on Sparkpeople off and on for a couple of years now. SInce my dx with severe sleep apnea in April, I've become committed to losing a tremendous amount of weight (My alltime high was 265 during my sleep study and I've lost 11 lbs. over the past month, mostly by changing my diet). I'm having a hard time adjusting to my machine and mask, even though I have a state of the art bilevel machine (my pressures are set way high, 25/15) and I'm on my third mask, my first nasal mask (Wisp), without pillows. I have been using the machine during waking hours to try to get used to the blast of air into my nose and throat, but it's like a game of Whack-A-Mole: no sooner do I solve one issue than another presents to impede my progress. I think I just don't want to use this machine, period, and I'm trying to lose as much weight as quickly as I can so that I don't have to use this machine (never mind that some overweight folks still need it even after significant weight loss). I feel like I'm okay while awake but I can't even manage a nap with the mask on. I've had my machine two months now and I'm worried the insurance carrier won't cover me if I'm not compliant by three months after delivery of the machine.
The issue I'm having now is not being able to sleep on my side comfortablly with the mask headgear (I can't sleep on my back and it's not recommended for apnea sufferers anyway.) I bought a special CPAP pillow with cutouts and it doesn't help, my neck is too short for my head to fall into the indentation, then the sides of themask press into my head. Usually after an hour or so my throat is so dry I need water so I have to remove the mask to drink.
I am 53 and have been searching for a full time job for nearly two years since my divorce (I was a stay at home mom for a long time) and working temp to survive. I am taking a month off from working after finishing a long term temp job because my sleepiness interferes iwth work. I was hopign to us this time to try to sleep when I can with the machine but I just can't fall asleep yet. Maybe I need more time during waking hours with it on so that it seems more normal to me. I've also had an issue with "chipmunk cheeks" (air filling my mouth with both nasal and full face masks) and my sleep doc warned me not to tape my mouth shut, but I found an adhesive strip for under the lower lip that is supposed to keep your mouth closed enough to prevent leaking but also allows you to breathe through your mouth in the event of a power failure.
I've never been through such mental and emotional anguish as I'm experiencing over not being able to get used to this machine. I know I need it to live yet that's not even enough to overcome my discomfort and anxiety. I know it takes a while for some people but I just can't visualize or imagine getting comfortable enoughwith this machine to actually sleep for half the night. I hope I'm wrong.