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Frustrated with all this!
Hello, I'm new to the forum. I was diagnosed almost a year ago with severe central sleep apnea & have yet to find effective treatment. I am currently on Short Term Disability because I have continued to fall asleep during work, have cognitive problems which continue to get worse as time passes by.... ie... difficulty finding the right words, coming up with people's names that I have known for many years, forget to pay bills, forget appointments, forget what I'm told recently, forget to take meds that I need to take on time... you get the idea. I'm an RN and had no idea how bad sleep apnea can be! I don't even remember getting any training on it in Nursing school! I guess because most of us don't really deal with it in the acute settings which is where the majority of nurses work. I'm actually a Case Manager and I follow pt's with long term illness's so I have been exposed to it more & more in the past year. Many of the pt's I have are frustrated until they find the right setting with the right machine & the right mask, if they don't give before finding the right treatment. An effective treatment can take a long time from my experience.
Problems I have are:
* Leaking..... my current mask is Res-med Quattro FX & I actually have had the least amt of leaking with it).
* The gas I accumulate which causes my stomach to swell, be painful, & has led to Acid Reflux. I find myself bolting out of the bed with the most horrific burning liquid spewing up into my throat.
* I don't drive much by myself for fear of falling asleep! I only do it during the early afternoon when I'm most awake & stay within a couple of miles from my house (live in a very, very small town).
* Falling asleep at inappropriate times. I have been working at my computer & woke up with my head cradled in my hands so many times to find anywhere from an hour to several hours has passed! Not sure how I haven't fallen out of a chair! I just can'rt resist that uncontrollable urge to go lay down, from the time I get up until the time I actually lay down for the night. I could easily sleep all day, only getting up for bathroom breaks.... oh, & I guess food at some point!
* I get up on avg 3 times a night, which since using my current mask is an improvement, but I have to sit up until my stomach settles down. This can take a couple of hours!
I do all the things I'm supposed to in order to prevent reflux, but nothing is working.
Looks like I'm going to have to fight Short Term Disability to get any time off to get my treatment straightened out to where I can function. They gave me 2 weeks initially which isn't enough time to have appointments & give treatment changes a chance. Knowing that someone with the same profession as I am, is making this decision is annoying! Obviously, Sleep Apnea needs to be something that all nurses get educated on, especially those in a position to deny &/or approve someone time off to get appropriate treatment!
Any advice is welcome. I have enjoyed reading what I have on this forum so far.
Thank you!
Views: 367
Replies to This Discussion
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Permalink Reply by Wendy Smith on
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I never had GERD until I started using the cpap machine. Two of my MD's, my DME & myself agree it is the force of the air from the machine that causes swelling, discomfort & acid reflux. I have had less symptoms of GERD since having my machine setting turned down from a 10 to an 8, then up to an 8.5 now. I take prevacid ac depending on what I eat and if I have reflux during the night I take the raw apple cider & it helps tremendously! I really need to remember to take the raw apple cider vinegar 2 times a day no matter what! I asked in the beginning why I was getting a cpap if I had central sleep apnea and didn't get an answer. I have now been told it is actually mixed sleep apnea so I don't know if that makes a difference in the machine. I also found out the girl I was talking to at the DME advised me wrongly in regards to what type of machine I have. I send the card in to them, but it only shows compliance not any other readings. The owner of the company called me & has suggested I use another machine for 2 weeks to find out how many apneas I am having and whatever else can be read. He also had talked to me about a Sleep Latency Test. I passed on the info to my doctor. and asked her to call him and discuss it all with him so she can give him the orders. The DME has protocols it uses with a sleep doctor, but we've been having her read the reports and my PCP handle the rest because I live in a small town that is far from specialists. So, the DME will educate my PCP more on the protocols they have which will help her & me in the long run. I used to be aware that I was waking up every hour or more. Now, a couple of hours between knowing I'm awake is the norm...... hopefully that time will keep increasing and the times I'm unaware of waking up will decrease! What is DGL? I'm sure I'll think duh when you respond!
shiawase said:
hello to wendy and everyone!
sorry to interrupt but i have some questions. since your symptoms are similiar with mine. (forgetfull, gerd) the different was i have difficulty falling asleep but feel lack of sleep most of the time)
does your gerd cause by the apnea? cause i also have gerd. or does it cause by the cpap?
DGL and aloevera help with gerd. also avoid eating 3 hours before bed. and lift the head of your bed. (with pillows)
sorry i cant give any advice about the apnea since im still clueless also :(
did the cpap help you with your central apnea? i read cpap was for OSA not CSA?
i read that vit D could help with apnea, has anyone tried?
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Permalink Reply by Mary Z on
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Good luck Wendy. I did not know that the air pressure could actually cause GERD. The Sleep Latency test is a good idea. I had one for excessive daytime speepiness and found out I'm just a very sleepy person (hypersomnia).
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Hi Wendy,
The DME owner is on the right track, finding out your Daily numbers plus oxygen saturation levels will be helpfull. What position are you sleeping in? (back left or right side) is the head of your bed raised? Good Sleep,Chris
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I have to sleep mostly on my right side due to chronic pain issues, sometimes I can sleep on the left side. Head of bed is raised & sometimes I use pillows and almost sit up. I do think the DME is very helpful in my case. Thank you!
Chris H said:Hi Wendy,
The DME owner is on the right track, finding out your Daily numbers plus oxygen saturation levels will be helpfull. What position are you sleeping in? (back left or right side) is the head of your bed raised? Good Sleep,Chris
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Thank you Mary! Oooh,I don't know how I would handle just being a very sleepy person given my level of sleepiness at this point! I do look forward to getting whatever additional testing done to figure it out. :)
Mary Z said:Good luck Wendy. I did not know that the air pressure could actually cause GERD. The Sleep Latency test is a good idea. I had one for excessive daytime speepiness and found out I'm just a very sleepy person (hypersomnia).
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