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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 Terry Vella on
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Wendy, I feel for you, it took me about 6 months to get used to it and still haven't perfected it but it is getting better. For the leaks, have you tried a mask liner and hose lift, these helped me dramatically. I get acid reflux from foods I eat and the air when I breath through my mouth bloats my stomach, I am trying to learn to breath through my nose but that takes time. Have you looked at the foods you are eating? I get reflux from chocolate, onions, tomatoes, etc, I'm sure as a RN you have looked into these things.
The only other thing is I was similar to you going to work in a fog due to being sleep deprived but now feel much clearer. Hope you get a resolution soon.
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Thank you Terry. I will try putting my hose up higher tonight (should be able to attach it to the headboard & still be able to have it move with me) & I can make a mask liner this weekend. It used to be only spicy foods that caused heartburn, but after I started using the cpap, I have problems no matter what I eat & it progressed to acid reflux. I don't eat large meals, I wait long enough before lying down, have elevated my head with a wedge & 98% of the time I sleep on my side. I'm going to try & eat earlier so there is even more time before lying down. I think I'll get a chin strap too, and see if that helps. If I can knock out the dry mouth, reflux, bloat & pain by not breathing with my mouth open..... that would be great! I look so forward to actually sleeping & getting out of that "fog"!!! I know it will get better, just tired of it taking so long! Thank you again!!!
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Wendy, I also use a chin strap and it is OK but in the middle of the night if your mouth wants to open it will. I am being concious of breathing through my nose whether it when I'm eating, watching TV, just sitting around and before I go to sleep and as soon as I wake up hopefully I can train myself that way so I do it when I'm asleep as well. Do you think your nose may be blocked to cause you to bearth through your mouth? If so, people use a nasal spray and i use Vick Vapor Rub under my nose which seems to keep it open.
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Permalink Reply by Mary Z on
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Wendy, I understand your frustration. You should be able to get your short term disability continued for a while with a doctors note. It does take some of us longer to feel better than others.
Are you using an ASV machine? This machine senses when you do not take a breath and gives you one ( as opposed to those machines with timed respirations). These are used for central apnea and Cheyn- Stokes.
If you haven't been treated (tested and on medication) for yopur reflux I would urge you to do that. You know what harm comes from reflux and just diet and raising the head of the bed may not be enough.
Good luck, keep us posted.
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Thank you Mary. I am not using the ASV. I wish I would have found this site before I got my machine. I had asked about it in the beginning, but to be honest with you, I don't even remember what I was told! I really need to start writing things down.
For the reflux, I think I just need a different med, one that will strengthen the lower esophageal sphincter. I believe the force of the air has made it weak. I'm going to the Dr. on Tue, so hopefully I will get what I want.
Thank you again & have a great week!
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Wendy, there are other machines used to treat central apnea. Whatever you're doing doesn't seem to be working. If the doc decides to go with an ASV (they are very expensive) all that's needed is a new prescription.
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Wendy- you see your doc today. Be sure and tell us what's happening. Hope the visit went well.
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Hi Wendy, Write all your meds/maladys in list form . Look at all the side effects and see if they are an issue. Keep a log of what you eat when you do too, When you go to sleep and when you get up. What are your numbers?? AHI, AI, leakage? By putting it on paper you will be able to start to see patterns and hopefully solutions.Good Sleep,Chris
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I have gone through my meds before, even changed the times I take them, do w/ out for a a week (Dr. aware) & found meds weren't playing a part. I do need to make a log of all the things you have mentioned. Hopefully we will start seeing some relief. I have added raw apple cider vinegar to my prevacid ac & it seems to be helping in keeping the reflux down! My Dr. liked the idea of that addition. I just got my card back from the DME so here's to the changes being beneficial! I need to get my initial report from when I first sent in my card to be read too.
Thank you Chris! Have a nice rest of the week!
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Hi Mary, please see my reply to Chris. Thank you for checking up on me! I do appreciate it!!! I have been sleeping a lot this past week, but I'm hoping the changes will help! Have a nice rest of the week!
Mary Z said:
Wendy- you see your doc today. Be sure and tell us what's happening. Hope the visit went well.
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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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GERD does not cause apnea and apnea does not cause GERD, but you often see them together.
Low Vitamin D levels are also associated with OSA, but does not cause OSA. If you haven't had a physical and had your labs checked that's a good idea. I tke vitamin D but it has no effect on my apnea that I can tell.
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