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Mask horrors, questions, ideas
#31
(04-16-2015, 03:28 PM)JVinNE Wrote: I use an FFM, and I just switched from a ResMed F10, to an F&P Simplus
It sucks to have to use the machine, but it was scary without it. I have onset-central hypopnea, and my pulse ox would go off (alarm) at 70%. I'm thinking about having an MRI because I have a history of head injury, and I want to make sure my brain is OK. I remember feeling my first RERA episodes as far back as 2000. It just got worse with time.

I am in denial Unsure and I really do not want to use the cpap. My husband comments all the time ("when will life be normal again?"). I had status epilepticus back in 2012 and since then have been diagnosed with epilepsy. I have no head injury that the MRI can detect. I am still in denial with this diagnosis as it is hard to understand how at my age I would get this disease, now this! I will maybe try the chinstrap before I ask for another FM. Thank God my insurance has covered everything so far. I'm also researching to see any connections between my asthma, epilepsy and mild apnea with low SpO2.
Yes JVinNE try to get the MRI or a ct scan. I also read recently about thermography but it is used mostly in place of mammograms. Thinking-about
"Life is not measured by the number of breaths we take,
but by the moments that take our breath away.
"
Hillary Cooper
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#32
Update: I went back to my nasal pillows last night and used mouth tape (from Buteyko breathing source) and slept almost 7 hours straight! I scored a 97 on MyAir! I didn't use the oximeter either as I find that more stuff on me overnight keeps me awake. Not that I like the pillows either but it was much better than the FFM. My scores with the FFM were 57-75 with higher AHI. Most likely from the higher air leakage. I did download the Sleepyhead software but didn't look at last nights report yet. I have to get use to the software and understand it better.
"Life is not measured by the number of breaths we take,
but by the moments that take our breath away.
"
Hillary Cooper
Post Reply Post Reply
#33
Good for you! It will get easier after every night of use until you finally say to yourself, "See, it was all in my head." I went from dreading bedtime and the machine to loving it in two weeks. Still, I would be leery of the mouth tape. I promise that you will adjust to the chin strap and maybe you'll even be able to condition yourself to sleep without it after using it for a while. You just need to train yourself to keep your trap shut Smile
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#34
(04-22-2015, 11:20 AM)signal13 Wrote: Good for you! It will get easier after every night of use until you finally say to yourself, "See, it was all in my head." I went from dreading bedtime and the machine to loving it in two weeks. Still, I would be leery of the mouth tape. I promise that you will adjust to the chin strap and maybe you'll even be able to condition yourself to sleep without it after using it for a while. You just need to train yourself to keep your trap shut Smile

Thanks!
It's been 2 months for me and I still dread it. I am not giving up (yet) but I find that with my overall health I am sick of being sick. I've always had allergies, developed asthma in my 20s, anxiety in my 40s, epilepsy in my 50s....I don't want to get a divorce. What's next? I pray that I can be released from these ailments and this machine. I have to get back into exercise as when I did routinely I felt so much better.
When I get the chance I will get a chin strap to try but the less straps on my head the better.
"Life is not measured by the number of breaths we take,
but by the moments that take our breath away.
"
Hillary Cooper
Post Reply Post Reply
#35
(04-22-2015, 11:28 AM)Exhale Wrote: Thanks!
It's been 2 months for me and I still dread it. I am not giving up (yet) but I find that with my overall health I am sick of being sick. I've always had allergies, developed asthma in my 20s, anxiety in my 40s, epilepsy in my 50s....I don't want to get a divorce. What's next? I pray that I can be released from these ailments and this machine. I have to get back into exercise as when I did routinely I felt so much better.
When I get the chance I will get a chin strap to try but the less straps on my head the better.

All of those things.......... ALL of those things could have been caused by or exacerbated by your sleep apnea.

Change your prayer:

"Thank you God for the opportunity, knowledge, and equipment to receive the healing sleep my body deserves. I know that I am on my way to becoming the healthy vibrant child of yours that you so intended for me to be."

Write that down, use some of that mouth tape to affix it to your bathroom mirror and begin to enjoy the new you.
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#36
Keep at it. You are starting your recovery to give your body the healing it needs.
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#37
Progress: 2 nights in a row zero events using nasal pillows and tape(sorry I don't have a chinstrap yet). Usage per night was almost 5 hours. And better yet....I had a vivid long-ish dream Dreaming last night that I actually remembered! Not sure if it was before or after I removed the pillows but it is nice to know I dreamt!

My prayer is to follow God's lead and He will determine my path.
Trust the LORD with all your heart, and do not rely on your own understanding. In all your ways acknowledge him, and he will make your paths smooth.
Proverbs 3:5-6


Thank you everyone for all your knowledge and advice. Happy Eyes
"Life is not measured by the number of breaths we take,
but by the moments that take our breath away.
"
Hillary Cooper
Post Reply Post Reply
#38
(04-17-2015, 11:59 AM)Exhale Wrote:
(04-16-2015, 03:28 PM)JVinNE Wrote: I use an FFM, and I just switched from a ResMed F10, to an F&P Simplus
It sucks to have to use the machine, but it was scary without it. I have onset-central hypopnea, and my pulse ox would go off (alarm) at 70%. I'm thinking about having an MRI because I have a history of head injury, and I want to make sure my brain is OK. I remember feeling my first RERA episodes as far back as 2000. It just got worse with time.

I am in denial Unsure and I really do not want to use the cpap. My husband comments all the time ("when will life be normal again?"). I had status epilepticus back in 2012 and since then have been diagnosed with epilepsy. I have no head injury that the MRI can detect. I am still in denial with this diagnosis as it is hard to understand how at my age I would get this disease, now this! I will maybe try the chinstrap before I ask for another FM. Thank God my insurance has covered everything so far. I'm also researching to see any connections between my asthma, epilepsy and mild apnea with low SpO2.
Yes JVinNE try to get the MRI or a ct scan. I also read recently about thermography but it is used mostly in place of mammograms. Thinking-about

Hopefully my doctor will allow the scan. He's tough on me sometimes, and he thinks I'm over-reacting. He told me I didn't have sleep apnea, just anxiety. He was WRONG. I want a new doctor, but it's tough to find a considerate and extremely good one around here. I keep looking. He also misdiagnosed me on another thing that I ended up needing surgery for.

By the way, I have zero shame about being on my ASV Bilevel machine. I'm thankful to have it. Now I need to get my backup battery / cable situation dealt with.

My only complaints about it are that if I use auto tube/humidifier, I get dry mouth, and if I raise the humidity past 4, it's like sleeping in a steamy bog. Wink



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#39
(04-23-2015, 07:59 AM)Exhale Wrote: Progress: 2 nights in a row zero events using nasal pillows and tape(sorry I don't have a chinstrap yet). Usage per night was almost 5 hours. And better yet....I had a vivid long-ish dream Dreaming last night that I actually remembered! Not sure if it was before or after I removed the pillows but it is nice to know I dreamt!

My prayer is to follow God's lead and He will determine my path.
Trust the LORD with all your heart, and do not rely on your own understanding. In all your ways acknowledge him, and he will make your paths smooth.
Proverbs 3:5-6


Thank you everyone for all your knowledge and advice. Happy Eyes

PS. I feel bad that your husband made a passive-aggressive comment at you. You don't deserve to be treated that way. You're going through a lot, and I think you deserve total kindness, consideration, and love.

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#40
(04-21-2015, 08:11 AM)Exhale Wrote: Update: I went back to my nasal pillows last night and used mouth tape (from Buteyko breathing source) and slept almost 7 hours straight! I scored a 97 on MyAir! I didn't use the oximeter either as I find that more stuff on me overnight keeps me awake. Not that I like the pillows either but it was much better than the FFM. My scores with the FFM were 57-75 with higher AHI. Most likely from the higher air leakage. I did download the Sleepyhead software but didn't look at last nights report yet. I have to get use to the software and understand it better.

Congratulations! It takes a while to tweak it to your needs, but once you get it just right, it is wonderful! I hope you start feeling better and adjusting to therapy.
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