Discouraged

Hi. I have been gone for awhile because my insurance took my machine away. And then I had to move. I'm still trying to settle into my new place. Lots of stress and problems here. It's not a good situation but I am out of funds to change it.

As time has gone by, I feel like I have gotten more and more tired and my memory has gotten worse and worse. It's hard to focus. It's harder to figure out this forum than the last time I was here. I really am trying, but if I use up all my focus trying to find old thread or fix my profile, I will having nothing left to post my question.

I have 14.2 as my apnea score which makes me "mild." The nurse I saw today and the nurse I saw a year ago have both said to me that my apnea is only mild and could not be causing me to be as tired as I am. The nurse I saw today said, "Why should I give you another chance? Why should I put you in line ahead of somebody else for a machine?" I switched nurses because ht last one was so discouraging. This one was worse.

Something in my head said I should give a big talk about how motivated I am and how I'm going to succeed, but I'm not. And I'm a bad liar. Lying takes focus I do not have. I said I didn't know. What I am is exhausted. I am phobic about the machines. It took me a long time to get un-scared of the first one and then a long time to find a mask that fit because I and to beg to get masks to try. I'm only disability Medicaid, so I don't get to choose where to go. If the care is bad, too bad. I am stuck with it. I'm telling you this so you don't tell me to go somewhere else. There is no somewhere else to go.

So this nurse was telling me the apnea could not be causing the problem and telling me I needed to convince her I should get another try. She did write the script. So I'm on the waiting list. But if she is right, and the apnea is so mild it is not relevant, why am I trying again? The last try was very stressful. The more tired I get, the more stressed I get, the harder it is to face the machine. It's a catch 22. I would like to know if anyone thinks it is worth trying again. Can mild apnea cause serious problems?

Thank you.

Hi, so sorry for your trouble! Yes, even mild apnea can cause problems if paired with other ones whether physical or not. I suggest two things - first check with your doctor re any other possible issues that lab testing, etc. might unearth. Second, download Oscar (see Stickies) and follow info re what (and what not) to post in this thread (please) and experts will interpret results and get back to you with suggestions re adjusting this or that and why. Also, if on any meds, which ones please, and if you 'drink', don't do it before bed (or exercise much then). If there are any other issues that might be relevant (stress not necessarily Cpap related, and/or ?) please throw them in too even if they don't make sense to you.

My AHI at diagnosis was only 13; and I was ready to drop in my tracks.
That nurse is unsympathetic, and your health does not matter to her.
I am not saying she is "stupid", but that would be believable, but not an excuse.

onward60 wrote: ↑

Tue May 03, 2022 12:50 pm

I have been gone for awhile because my insurance took my machine away.

Everyone please note that the OP is NOT on cpap right now. No machine to get any data from. So using OSCAR advice isn't going to happen right now.
OP didn't use the first machine enough to satisfy compliance usage requirements and that's why they pulled it.

To the OP:
People complain of crippling fatigue with diagnostic AHI numbers in the single digits. Yours is really close to moderate degree in terms of official categories.
I don't know if sleep apnea is the culprit with your symptoms or not but it sure could be.

Julie wrote: ↑

Tue May 03, 2022 1:02 pm

Hi, so sorry for your trouble! Yes, even mild apnea can cause problems if paired with other ones whether physical or not. I suggest two things - first check with your doctor re any other possible issues that lab testing, etc. might unearth. Second, download Oscar (see Stickies) and follow info re what (and what not) to post in this thread (please) and experts will interpret results and get back to you with suggestions re adjusting this or that and why. Also, if on any meds, which ones please, and if you 'drink', don't do it before bed (or exercise much then). If there are any other issues that might be relevant (stress not necessarily Cpap related, and/or ?) please throw them in too even if they don't make sense to you.

Thanks, Julie. I remember you and your cute kitty!

I know I need to figure out how to change my profile. I will eventually. Probably. No machine and not likely to get one for months. Apparently there's a shortage? I do still have my assortment of masks.

I have had so many medical tests I can't remember them all. I don't drink (at all) or exercise before bed. I do take an off-label prescription sleep med (antihistamine) that I have tapered to almost nothing and should be off soon. I have taken others in the past and have tapered off all of them. The only thing I take regularly now is gabapentin for nerve pain and RLS. The RLS is not nearly as bad as it used to be. I can go weeks without noticing symptoms.

Up until a few months ago, I used MBSR very successfully to manage my anxiety and stress and help me sleep. I would startle awake but with the MBSR, I was able to fall back asleep. Now I am unable to focus well enough to do it like I used to.

I am under a ton of stress. I have been for many years since I got sick (neurological stuff) and my husband left. I was thrown from very comfortable middle class into poverty. I manage to launch my kids and get them out of poverty, but they have emotional scars pretty bad.

What stopped me from using the CPAP the last time was pandemic difficulties and the stress of needing to move in with my daughter because I ran out of funds and couldn't work. Moving in with her required major remodeling to her house. If I wrote all the things that went wrong with that, it would take pages. Some things are still not fixed. Some things may not be fixable. It has been tiring. All that said, this creeping fatigue started before that. It's like every few months I look back and see that I am more tired I was a few months ago and could do less than I could a few months ago. This is odd right now because I have winter depression that should be lifting. I should be getting more energy not less.

I have been referred for neuropsych testing but I have been on a waiting list for nearly a year. I'm pretty sure they are looking for dementia, though they don't say that. My mother died of dementia last week. I don't remember her being exhausted like this. In fact, I remember her being a pain because she would get her walker and escape from her assisted living! It was only when she broke her hip that she became unable to escape.

Sorry for rambling. My editing skills aren't what they used to be.

chunkyfrog wrote: ↑

Tue May 03, 2022 1:08 pm

My AHI at diagnosis was only 13; and I was ready to drop in my tracks.
That nurse is unsympathetic, and your health does not matter to her.
I am not saying she is "stupid", but that would be believable, but not an excuse.

Thank you for sharing this! I am phobic about the machine and mask. It took a lot of meditation and practice to be able to tolerate it on my face. Having her say it wouldn't really help made me wonder why I should add all that stress back into my life. Stress is likely to hurt my sleep. The last thing I want to do is lose sleep! I am in worse shape now that the last time I tired and less able to tolerate the stress.

Pugsy wrote: ↑

Tue May 03, 2022 1:12 pm

onward60 wrote: ↑

Tue May 03, 2022 12:50 pm

I have been gone for awhile because my insurance took my machine away.

To the OP:
People complain of crippling fatigue with diagnostic AHI numbers in the single digits. Yours is really close to moderate degree in terms of official categories.
I don't know if sleep apnea is the culprit with your symptoms or not but it sure could be.

This is what I need to know. That it could be! I tried to get the nurse to say this, but she refused. The best she would say, at the very end when I pressed her again, was it could be a part of it. And then she reemphasized that I needed to look for another cause. I wonder how she is going to get my insurance company to allow another machine if she writes something like that into my pre-auth.

Your post touched my heart as it reminds me of my life several years ago. As much as I did have difficulty adjusting to CPAP life, let me tell you, it became my security blanket. I dreaded nothing more than waking up with an event with my heart pounding and feeling like I couldn't catch my breath. Since 2006 I have been able to lay down and sleep without dread and fear, and I have CPAP to thank for that. Hopefully soon your appreciation for what CPAP can do for your quality of life will override any concerns about using CPAP. Before I got my sleep issues in some semblance of order, there was concern about my cognitive decline. I could not longer safely cook when alone and had to curtail my driving. Once my disability outlived my funds, I moved in with family.

I echo the others who say mild sleep apnea can be very detrimental to one's well being. Not sure if you have copies of any sleep tests, but it is not uncommon for test results to not fully appreciate the severity of a case. Because apnea events are often worse in REM sleep and while supine, to get your worst case scenario the night's sleep would need to include some time spent in REM while supine. If that doesn't happen, which is not unusual, the results could be short of what really going on. Without seeing the details of your report, I wouldn't assume that mild diagnosis is accurate. And there's even more to it. Maybe you didn't have too many events per hour, but if they were prolonged or if your oxygen dropped a lot, those few could be quite problematic. I hate to see doctors being dismissive, often with incomplete information.

You mentioned RLS. Any chance your sleep study showed periodic limb movements? If so, they can disrupt sleep too. That's a whole 'nuther conversation.

Please do pursue getting your machine and work toward using it. Getting some quality sleep will give you the strength to take on more as you get more rested and restored. Over time you will see if that helps your cognitive issues improve. Mine did - tremendously. Still not always the brightest bulb in the pack, but then again, I'm over 15 years older so I cut myself some slack. Good luck going forward.

kteague wrote: ↑

Wed May 04, 2022 4:58 am

Please do pursue getting your machine and work toward using it. Getting some quality sleep will give you the strength to take on more as you get more rested and restored. Over time you will see if that helps your cognitive issues improve. Mine did - tremendously. Still not always the brightest bulb in the pack, but then again, I'm over 15 years older so I cut myself some slack. Good luck going forward.

Thank you. I really appreciate this. After my first failure and with my claustrophobia and with being more tired than I was before, I'm having a hard time working up the mental energy to try again. I had to move in with family, too. Living with family is really, really not good, loss of autonomy, another layer of stress.

What I need right now is hope. This is the only place I'm getting that.

I am so glad you are doing so much better much. I'm happy for you!

Onward 60, as others have said, your "mild" apnea can most definitely wreck your sleep, whether you are aware of it during the night or not. In the average hour, you are experiencing 14 disruptive events. That's an average of about one every four minutes. Even if the events don't fully wake you up, they can easily disrupt your sleep "architecture." That's the orderly transition through the various stages of sleep throughout the night, which we need to feel restored and rested the next day, and which we need for our long-term health.

When you try again, please come by and let us know how we can help. I have certainly read posts by people who tried once, quit, and then tried again and stuck with it. There are so many people here who would be happy to offer advice and encouragement so you can stick with it going forward.

And for what it's worth -- your posts are clear and focused. I also think you're coping with great resilience in the face of huge challenges. My hat's off to you.

Miss Emerita wrote: ↑

Wed May 04, 2022 11:46 am

Onward 60, as others have said, your "mild" apnea can most definitely wreck your sleep, whether you are aware of it during the night or not. In the average hour, you are experiencing 14 disruptive events. That's an average of about one every four minutes. Even if the events don't fully wake you up, they can easily disrupt your sleep "architecture." That's the orderly transition through the various stages of sleep throughout the night, which we need to feel restored and rested the next day, and which we need for our long-term health.

When you try again, please come by and let us know how we can help. I have certainly read posts by people who tried once, quit, and then tried again and stuck with it. There are so many people here who would be happy to offer advice and encouragement so you can stick with it going forward.

And for what it's worth -- your posts are clear and focused. I also think you're coping with great resilience in the face of huge challenges. My hat's off to you.

You are so kind! I compare what I am now to what I used to be and am discouraged. I used to teach 5th grade and sub at all grades. Who was that person? It is hard to look back. I wish I had appreciated my strength when I had it. I'm approaching retirement age so I will ever have my own classroom again, but I ought to be able to sub a bit. I miss working.

I will definitely be back. You all were so helpful during my first round. The timing just wasn't right. I have no idea if/when I will get my machine, but at least I know I won't be trying to do a renovation, deal with endless problems in my new space, and trying to downsize from a 3-bedroom house into a very small in-law suite! So, it's got to be better!

I read my medical notes from the visit. Just wow. So many inaccuracies and omissions (particularly of rude things she said). I am wondering about how to deal with this provider if I have to go back. I was thinking about asking my daughter to go with me or putting a recording app on my phone. Then I realized, maybe I don't have to go back. After you got your script, did you have to go back?

onward60 wrote: ↑

Thu May 05, 2022 1:42 pm

After you got your script, did you have to go back?

Yep...so sorry but most insurance will require a face to face visit with the doctor and proof of compliance within a set time frame after you get the machine. Medicaid normally follows Medicare guidelines and Medicare says there must be a fact to face prior to the 91st day after you got the machine...along with you must use the machine for at least 4 hours a night for 70% of the nights within a 30 day period withing that first 90 days.

Pugsy wrote: ↑

Thu May 05, 2022 2:23 pm

onward60 wrote: ↑

Thu May 05, 2022 1:42 pm

After you got your script, did you have to go back?

Yep...so sorry but most insurance will require a face to face visit with the doctor and proof of compliance within a set time frame after you get the machine. Medicaid normally follows Medicare guidelines and Medicare says there must be a fact to face prior to the 91st day after you got the machine...along with you must use the machine for at least 4 hours a night for 70% of the nights within a 30 day period withing that first 90 days.

Thank you, but what a bummer. Do you have to keep going back again and again after that?

onward60 wrote: ↑

Thu May 05, 2022 6:00 pm

Do you have to keep going back again and again after that?

Not usually. It all depends on what your medicaid requires. After initial face to face and proof of compliance they don't usually do much after that. Maybe once a year verify that you are still using the machine and depending on what machine you get they might be able to do that without seeing you. New machines now can do the compliance stuff on the internet cloud thing.

Medicaid is state funded insurance so what it requires can vary widely state by state.