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Introduce Yourself!

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LexisMommy1991 +0 points · over 8 years ago

@TheresaS .. I do have a sleep specialist I see every 3 months. I am taking Nuvigil 250mg for my Narcolepsy but I am trying to find a dentist to help with getting a dental appliance for my sleep apnea. I have had too many sleep studies done over the past 8-9 years but I dread having them done since I have to have both the night and day study done at the same visit lol. My sleep specialist had went over the results with me and said the total apnea/hypopnea index was 6.7 events per hour, during the study I had 46 episodes of apnea/hypopnea with 4% oxygen desaturations or greater. The mean length of the episodes were 31.8 seconds and the longest was 86.0 seconds. I went into deep sleep within 23-24 minutes. my doctor says it is a mild sleep apnea.

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CalmAmethystLapwing3067 +0 points · over 8 years ago

Hello, my first time on the forum and first time with CPAP (2 -3 weeks in). I hope therapy gets better, it has been a real struggle for me. I average 2 - 4 hours per night before I give up and pull the mask off. I am investigating ways of dealing with 'rainout' (very annoying, btw) which started about a week ago. I have the nasal mask but I want to change to the full mask. Ugh....exhausting

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processman15 +0 points · over 8 years ago

I was diagnosed at first w/ severe obstructive (SO) sleep apnea following a sleep study in the Winter of 2013. Just this past June, after progressing from a straight CPAP to a BiPAP--and failing to qualify on either machine for insurance purposes--a further sleep study revealed the presence of central apnea in addition to the SO type. Undaunted, I was set up with an APAP machine---it's working really well in the early going. I have confidence that I will make it the 90 days that are required for me to receive the machine free and clear at no cost to me (I have state insurance who is paying for my rental of the device) and it is at that point that I can really tackle my apneas!

69 posts
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TheresaS +0 points · over 8 years ago

@processman15 - Welcome! I am happy to see you are having a positive experience with your machine and therapy in general. I look forward to hearing more about your experience as time goes on :-)

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CalmAmethystLapwing3067 +0 points · over 8 years ago

Last night was a bit better, made it four hours. Is it normal to have anxiety associated with the use of cpap? maybe I just have anxiety related to the lack of sleep. Night time is difficult for me, not relaxing at all.

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TheresaS +0 points · over 8 years ago

@CalmAmethystLapwing3067 - Some people do experience anxiety associated with using CPAP. What follows is what I advised my CPAP patients in the sleep lab, and especially the last few lines are so important. Understanding the physiology of your upper airway without AND with CPAP is imperative, and relaxation is key.

"“Take some big, deep breaths, completely relax. Put the mask on your face as you turn the CPAP unit on… Relax…Close your eyes, clear mind of all thoughts... Keep lips closed, but don’t tense lips…. Let pressure fill the back of your throat…

IMAGINE your upper airway being kept open by the pressure… Breathe with it, not against it……… Breathe slowly…Concentrate…Now, Relax...”

@CalmAmethystLapwing3067 --If you try this a few nights and are still having issues, please let me know.

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TheresaS +0 points · over 8 years ago

@pickle330 - I am checking in to see how it is going with your CPAP now. Have things improved?

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CalmAmethystLapwing3067 +0 points · over 8 years ago

Thank you

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dawnnnny +0 points · over 8 years ago

I'll share my experiences with hopes they may help. I started with my machine 5 weeks ago. The first week was terrible, primarily mask leaks. I did have some claustrophobia (minor) and I felt OVERWHELMED and INTIMIDATED by the whole process. It was like this new "friend" was controlling me and I didn't like it! LOL
But then, I found some fixes, primarily a mask liner which took care of the leaks. But there was still the feeling of "what are you doing to me" when that air would start up. But I can say that as I got into the 2nd and 3rd week, I started taking control. I think what Theresa said is key. You have to understand it to get beyond the feelings. I would dread going to bed the first couple of weeks. But now? I actually look forward to putting on that stupid mask and feeling that air! I went back to the first mask I used because the Quattro started hurting my forehead. I'm using the Amara View now which I like because it only covers my mouth/nose, the less equipment the better - but that was the mask I hated at first, so go figure. I could have easily given up that first week but I stuck with it, and I'm so glad I did. Best of luck to everyone, this sure isn't an easy thing to get used to. :)

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TheresaS +0 points · over 8 years ago

Thank you for posting & sharing, @dawnnnny :-)

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PoliteApricotSquirrel8324 +0 points · over 8 years ago

HI, I have had sleep apnea since 2009. I was falling asleep at my desk at work. Then I had to deal with the medical folks who knew just enough to send me for a sleep study and get a machine, but was afraid to up my flow rates. I am now being seen by a doctor who understands all this. I just got another sleep study at the end of last year/first of this year.

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pickle330 +0 points · over 8 years ago

Squirrel, Do you feel better now???? Are you able to stay awake all day???? AND, do you feel refreshed and good when you wake up??? I have been on the "mask" for 4 months and am still waiting for my change. I'm dieing to feel refreshed in the AM. GOOD LUCK TO YOU, PICKLE

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CarolSue2 +0 points · over 8 years ago

Sorry for the delay in answering your questions pickle330. I have still not gotten my machine. They told me after my titration that my doctor would get the results in about 5 days and if I hadn't heard from him in 10 days to call him. I did and he had not gotten the report on my titration. I threw a little fit so they called the sleep clinic and got the results. The next day the doctor's office called and left a message that they had "sent" a prescription to the DME. I haven't had a call from them to make an appointment so I guess I will be on the phone again Monday morning.

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pickle330 +0 points · over 8 years ago

Carol, after this experience, I am NOT a big fan of DOCTORS. AND it is amazing how so many people have this sleep problem. I tried to make an appt. with a specialist, I even went thru one of my Doctors to avoid the referral thing, now I have an appt. in the middle of November. It seams Dr.s must work in the summer around their 18 holes of golf???? Then cram 5 people for every appt. time. I hate having an appt. being on time; and sitting and waiting for over an hour. I guess they got you, and they know it.

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butts505 +0 points · over 8 years ago

30 years old. Pretty sure I've suffered from sleep apnea for a solid 10-15 years, but was just diagnosed last month. 4 days on CPAP and seem to feel a bit better. The lack of mental cognition and chronic fatigue was really getting to me. I've also been having low T problems and struggled to lose weight despite eating and training well. Hoping this solves all my problems.

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CompassionateMauveJay2331 +0 points · over 8 years ago

HI

My name is Simon Aucoin. It has been over 10 years of telling doctors about me stop breathing while sleeping but all were dismissed. I was finally disgnosed after visting a sleep clinic. I have been 3 night on the machine but i have not noticed an increase in energy levels yet.

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VersatileMagentaLlama0669 +0 points · over 8 years ago

Hi! I'm a 52 y/o female who was diagnosed last November with a mixed condition. OSA AND CSA. CPAP didn't help with my condition so now I am trying BIPAP, 2nd night. My question is about the central sleep apnea. My doctor seems unconcerned with looking further into the cause it. From all that I've read, it makes me think there's an underlying medical condition that causes central sleep apnea. Shouldn't my doctor rule out a medical condition while also treating CSA? Thoughts please.

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VersatileMagentaLlama0669 +0 points · over 8 years ago

Hi, I was diagnosed with central and obstructive sleep apnea. Tried the CPAP to no avail and just started using BIPAP. Just curious if your doctor knows what causes the central event to happen. My doctor doesn't seem to interested in looking for the cause. :( I would like to know if there's an underlying cause. Maybe I worry to much.

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