New diagnosis - Feeling impatient and in the dark

[Timefliesby]

Hello,

I've been perusing these boards since I suspected that I have sleep apnea. Sorry if this is long but I just wanted to
tell my story to people who actually understand what I'm going through. I've finally been diagnosed! I'm not even really sure with what severity but from what I understood, moderate sleep apnea. My sleep doc says during the early stages of sleep it is "mild" and during deep sleep it is "severe" - I stop breathing about 40 times per hour during this portion (at least that's what happened during my sleep study which was in lab and an awful experience).

I am probably not your typical sleep apnea patient. I am a 26 year old female student who is teetering on the edge of normal weight and slightly overweight based on BMI but I also have been experiencing a weight creep since graduating high school. I am also finishing my final year in pharmacy school and have worked in healthcare in the retail setting for about 7 years. So far this process has been somewhat overwhelming. I am well aware of the difficulties that sleep apnea patients face when beginning cpap therapy and even so, it's still daunting. I have been dealing with fatigue, needing to nap often, and serious mood problems. I have been dealing with anxiety and depression for years and have pretty much alienated myself from friends and family due to my never ending tiredness and irritability. All this time I have had so much emotional turmoil but I have managed to pull through. Luckily, I have a very supportive husband that has been amazing and also the one who urged me to be seen after witnessing me choking for a long time.... I finally listened.

I am very relieved to have this diagnosis and am clinging to the thought that treating it might help alleviate some of my mood problems. The other option is that I'm crazy and will need many medicated years working with a therapist to be a socially functioning person. This could very well be the case.

At this point, I am waiting for my doctor to contact me so that I can begin my home titration on an APAP. So far I don't think my doctor has done a very good job of explaining things to me. At first we decided to do in an lab titration with CPAP however it is unlikely my insurance will cover it as they prefer the use of an APAP. My doctor did little to differentiate the therapies and got me thinking that the in lab titration will be "better." After going home and reading the pros and cons of each therapy, I definitely feel much more comfortable with the idea of using an APAP. So I called the office back yesterday and have yet to hear anything. I know firsthand that healthcare is slow but I can't help but feel impatient. I know it's not the best attitude to have... But every morning I crawl out of bed I am reminded of how horrible my sleep is every night.

I guess I'm not really asking any questions here.. Just yammering. Encouragement would be nice and any specific pointers or thoughts based on my progress in this process. I will definitely be reading a lot more on here to learn more about masks and all the fixings I will have to tinker with once I actually get my machine.... Thanks for reading!

[Sir NoddinOff]

Welcome TFB. You've come to the right place, there are lots of young adults here with whom you can share perspectives and therapy tips. Fixing mood problems is often a big part of CPAP therapy. Be sure to get a data capable machine when the time comes... don't settle for anything less. Read this FIRST:
https://sleep.tnet.com/cmd

Type the manufacturer and the model number in the database, hit submit and in the last column to the right if it sez 'data' NO then don't accept it.

[GettingBetter]

Hello,

I've been perusing these boards since I suspected that I have sleep apnea. Sorry if this is long but I just wanted to
tell my story to people who actually understand what I'm going through. I've finally been diagnosed! I'm not even really sure with what severity but from what I understood, moderate sleep apnea. My sleep doc says during the early stages of sleep it is "mild" and during deep sleep it is "severe" - I stop breathing about 40 times per hour during this portion (at least that's what happened during my sleep study which was in lab and an awful experience).

I am probably not your typical sleep apnea patient. I am a 26 year old female student who is teetering on the edge of normal weight and slightly overweight based on BMI but I also have been experiencing a weight creep since graduating high school. I am also finishing my final year in pharmacy school and have worked in healthcare in the retail setting for about 7 years. So far this process has been somewhat overwhelming. I am well aware of the difficulties that sleep apnea patients face when beginning cpap therapy and even so, it's still daunting. I have been dealing with fatigue, needing to nap often, and serious mood problems. I have been dealing with anxiety and depression for years and have pretty much alienated myself from friends and family due to my never ending tiredness and irritability. All this time I have had so much emotional turmoil but I have managed to pull through. Luckily, I have a very supportive husband that has been amazing and also the one who urged me to be seen after witnessing me choking for a long time.... I finally listened.

I am very relieved to have this diagnosis and am clinging to the thought that treating it might help alleviate some of my mood problems. The other option is that I'm crazy and will need many medicated years working with a therapist to be a socially functioning person. This could very well be the case.

At this point, I am waiting for my doctor to contact me so that I can begin my home titration on an APAP. So far I don't think my doctor has done a very good job of explaining things to me. At first we decided to do in an lab titration with CPAP however it is unlikely my insurance will cover it as they prefer the use of an APAP. My doctor did little to differentiate the therapies and got me thinking that the in lab titration will be "better." After going home and reading the pros and cons of each therapy, I definitely feel much more comfortable with the idea of using an APAP. So I called the office back yesterday and have yet to hear anything. I know firsthand that healthcare is slow but I can't help but feel impatient. I know it's not the best attitude to have... But every morning I crawl out of bed I am reminded of how horrible my sleep is every night.

I guess I'm not really asking any questions here.. Just yammering. Encouragement would be nice and any specific pointers or thoughts based on my progress in this process. I will definitely be reading a lot more on here to learn more about masks and all the fixings I will have to tinker with once I actually get my machine.... Thanks for reading!

Hi TImeFliesBy,

You have a lot of things to be proud of here. You've recognized there was/is a problem and you've taken steps to get diagnosed and treated. It is a great benefit to you that you have such a good attitude about this, even while you may be struggling with fatigue and emotional tides.

I think you are going to do just terrific on the APAP when you finally can get a machine - even check into renting if you need to try out or save for what you want if insurance doesn't cover. Also there are gently used machines too.

If I had any encouragements to offer I think being extra kind to yourself would be a really nice thing right now. Maybe you deserve some new sheets or whatever makes you more comfortable at night before bed - bath bombs are nice treats, as are some those aloe infused socks. You've probably pushed yourself when you really weren't rested in the past, perhaps beaten yourself up as "lazy" - it is time to stop that noise too. Be the kind of person you want to sleep with for the rest of your life, because you are going to anyway - give yourself an opportunity to adjust and renew to the therapy.

Kind regards,
GB

PS - when you get set up with a machine, consider downloading SleepyHead and sharing your numbers/success. If you want to switch from auto to set pressure those numbers will be helpful to the experts here. Some folks do better on the set pressure. I like my auto well enough. Different strokes for different folks and it is always up to you.

[Timefliesby]

Welcome TFB. You've come to the right place, there are lots of young adults here with whom you can share perspectives and therapy tips. Fixing mood problems is often a big part of CPAP therapy. Be sure to get a data capable machine when the time comes... don't settle for anything less. Read this FIRST:
https://sleep.tnet.com/cmd

Thank you Sir NoddinOff! I think the issue here is that I'm still confused at how this process works. Once my doc says that APAP is ok does he generically write a prescription for an APAP and then I deal with the supplier to decide which one I want? Or does he say that I can only use a specific one? I have Medicaid right now since I'm a broke student and I know my insurance company deals specifically with one device supplier. When I spoke to him last time, my doc semi-eluded to the fact that he would get me "set up with a supplier" once we had insurance figured out. In other words, should I research to the point of knowing the exact kind I want (machine and mask) before talking to him next? Or is that something I can figure out later? Also as far as trying out masks, how does this work when dealing with the supplier. I guess I'm just all around confused. I know it should be easy to ask the doc all these questions but when I'm actually talking to him, my thoughts slip away and I'm never quite prepared.

[Okie bipap]

Welcome to the forum. You can get a lot of good information and help here. Some of the members have lots of experience and are willing to help you with problems you may encounter.

If your doctor prescribes an apap machine, it will be data capable. If he prescribes a fixed pressure machine, it may or may not be data capable. You won't need to worry about the choice until you get your own machine. If at all possible, try to get a data capable machine. As far as masks go, that is a very personal decision. What works for one person may not work for someone else. I can't use nasal masks or nasal pillows because I am a mouth breather at night. I was using a F&P Simplus mask, but switched to the Amara View mask about two months ago. Both are considered to be full face masks.

[BlackSpinner]

Yes call your insurance and get the details of who is in network NOW and how they pay for your machine (rental, purchase?)

Then call around to them and find out what machines they offer.
The machine you will use for titration may not be the one you end up with. However it should be. Lean on your doctor to write in detail on your prescription exactly the type of machine you want otherwise the sleazy used car sales guys, I mean the DME, will give you the cheapest brick they can get away with. Most insurance will pay the same for an auto with full data as for a barely functioning cpap.

[ChicagoGranny]

I have been dealing with anxiety and depression for years and have pretty much alienated myself from friends and family due to my never ending tiredness and irritability.

Well, you nailed one thing in that sentence, whether you realize it or not. You probably don't have what we typically think of as "mental illness". You have sleep apnea which is causing sleep deprivation which causes all kinds of "mental" shit. The solution is CPAP. There are lots of sources on the internet connecting untreated sleep apnea and "depression". Here is a simple article - http://doctorstevenpark.com/chicken-or- ... leep-apnea

The other option is that I'm crazy and will need many medicated years working with a therapist to be a socially functioning person.

Very unlikely.

CPAP should your solve problems.

So far I don't think my doctor has done a very good job of explaining things to me.

Typical.

So I called the office back yesterday and have yet to hear anything.

Don't be shy about calling them every day. The squeaky wheel gets oiled.

I definitely feel much more comfortable with the idea of using an APAP.

+1

I will definitely be reading a lot more on here to learn more about masks and all the fixings I will have to tinker with once I actually get my machine....

That's good, but don't think you have to know it all right away. One thing the forum can help you with is making sure you don't get stuck with a "brick" (limited-data machine), and instead get a machine that provides the data that will help you manage your therapy.

One final point, until you get your CPAP gear, avoid backsleeping. Sleep on your sides or stomach. Many people get some relief (But not a cure.) from sleep apnea by staying off the back. On the back, gravity is pulling the tongue and soft palate directly into the airway causing blockages.

You can pile up pillows against your back, put a tennis ball in the pocket of a shirt and wear it backwards, or one guy wore a small backpack with some books in it so that he could not roll onto his back.

A pillow between the legs can help you feel comfortable sleeping on your sides.

[Timefliesby]

Hi TImeFliesBy,

You have a lot of things to be proud of here. You've recognized there was/is a problem and you've taken steps to get diagnosed and treated. It is a great benefit to you that you have such a good attitude about this, even while you may be struggling with fatigue and emotional tides.

I think you are going to do just terrific on the APAP when you finally can get a machine - even check into renting if you need to try out or save for what you want if insurance doesn't cover. Also there are gently used machines too.

If I had any encouragements to offer I think being extra kind to yourself would be a really nice thing right now. Maybe you deserve some new sheets or whatever makes you more comfortable at night before bed - bath bombs are nice treats, as are some those aloe infused socks. You've probably pushed yourself when you really weren't rested in the past, perhaps beaten yourself up as "lazy" - it is time to stop that noise too. Be the kind of person you want to sleep with for the rest of your life, because you are going to anyway - give yourself an opportunity to adjust and renew to the therapy.

Kind regards,
GB

PS - when you get set up with a machine, consider downloading SleepyHead and sharing your numbers/success. If you want to switch from auto to set pressure those numbers will be helpful to the experts here. Some folks do better on the set pressure. I like my auto well enough. Different strokes for different folks and it is always up to you.

Thank you, GettingBetter, for your kind words. Your comment about feeling like a lazy person really resonates with me because I have been struggling with this for a long time. I have been able to compensate thus far by skipping class and doing "the bare minimum" when I was feeling exhausted through my studies. I have managed to do slightly above average but I am a perfectionist and always thought I could do better "if I wasn't so lazy." I'm now on rotations, which is kind of like medical school where we spend 4 weeks each (full time) at 9 different internship sites. I can no longer compensate in the ways I used to and things have been getting harder and harder. I feel like my preceptors (my mentors at these sites) feel like I just don't care because I have no energy or motivation to care. I wake up everyday and can barely drag myself to my internship, while I'm there I am irritable and in a fog. At my last internship I got scolded for being 5-10 minutes late everyday for 30% of my rotation. Which is definitely a horrible offense but I can barely get up in the morning sometimes. That rush that occurs with running late is the major adrenaline that helps me even show up some days. When my preceptor was scolding me I couldn't even talk because I was holding back tears in my embarrassment. I couldn't even explain my actions and anyway the excuse doesn't matter to them.

I'm going to try to be nicer to myself and try harder to explain to people what I'm going through. I just feel like "normal" people don't understand what it's like and that my excuse of sleep apnea is just that, an excuse. But either way, I'm glad to have one! It really explains a lot. I'll try to do nice things for myself, thank you for the ideas. I really hope I can start getting treated soon so that I can start feeling better.. even if it is only a tiny bit.

[Timefliesby]

Welcome to the forum. You can get a lot of good information and help here. Some of the members have lots of experience and are willing to help you with problems you may encounter.

If your doctor prescribes an apap machine, it will be data capable. If he prescribes a fixed pressure machine, it may or may not be data capable. You won't need to worry about the choice until you get your own machine. If at all possible, try to get a data capable machine. As far as masks go, that is a very personal decision. What works for one person may not work for someone else. I can't use nasal masks or nasal pillows because I am a mouth breather at night. I was using a F&P Simplus mask, but switched to the Amara View mask about two months ago. Both are considered to be full face masks.

Thanks for the information! That's why I was leaning toward an overnight titration because I could at least try out some masks. In the beginning of home titrations, I'm assuming they just give you one and if it doesn't work you have to get another and send the old one back? But I'd probably have to take Ambien for another overnight study, as I only slept 4 hours during my first. And I'm pretty sure I'd be so konked out that I wouldn't even notice what was on my face. I will definitely do some research into machines and be prepared when I talk to the office next.

[Timefliesby]

Yes call your insurance and get the details of who is in network NOW and how they pay for your machine (rental, purchase?)

Then call around to them and find out what machines they offer.
The machine you will use for titration may not be the one you end up with. However it should be. Lean on your doctor to write in detail on your prescription exactly the type of machine you want otherwise the sleazy used car sales guys, I mean the DME, will give you the cheapest brick they can get away with. Most insurance will pay the same for an auto with full data as for a barely functioning cpap.

Thank you BlackSpinner, and great idea. I'll call my insurance next week to get the information so that I'll be prepared. Does the doctor's office typically supply the machine for the titration or does the supplier do that?

[BlackSpinner]

Go and talk to the counsellors for students. You have a serious medical condition and they should be helping you deal with it with your teachers and such. You may need some time to get adjusted to the treatment. You don't need to do this alone and this is what they get paid to do - to help students with medical issues navigate the system.

[BlackSpinner]

Thank you BlackSpinner, and great idea. I'll call my insurance next week to get the information so that I'll be prepared. Does the doctor's office typically supply the machine for the titration or does the supplier do that?

It depends but it is usually a supplier called a DME (Durable medical equipment) Call your doctors office and ask for the details. It is totally ok to be OCD about all this. Make a list of questions so you don't get side tracked. Note that sometimes a doctor will also have a DME as part of his practice but you are not required to use it. You have the right to get that prescription in your hand and to take it where ever you want.

[Timefliesby]

That's good, but don't think you have to know it all right away. One thing the forum can help you with is making sure you don't get stuck with a "brick" (limited-data machine), and instead get a machine that provides the data that will help you manage your therapy.

One final point, until you get your CPAP gear, avoid backsleeping. Sleep on your sides or stomach. Many people get some relief (But not a cure.) from sleep apnea by staying off the back. On the back, gravity is pulling the tongue and soft palate directly into the airway causing blockages.

You can pile up pillows against your back, put a tennis ball in the pocket of a shirt and wear it backwards, or one guy wore a small backpack with some books in it so that he could not roll onto his back.

A pillow between the legs can help you feel comfortable sleeping on your sides.

Thanks ChicagoGranny for the encouragement. I really hope you are right and that many of my mental problems will be alleviated by using a CPAP. When I discussed this with my husband, he joked, "wow, what if you're a completely different person?!" Well, I hope so. I hope a really happy and well-rested version of myself. Thanks for the pointers! I will bug the office for sure. Also, I am naturally a stomach sleeper. That is why my doctor thinks I didn't start having major problems until my adult years. He said that due to my throat and neck anatomy, I likely had sleep apnea all my life. However, when I was a kid I could tolerate sleeping on my stomach more. He told me that as we age, most people start sleeping on their backs more since it's more comfortable. This is totally what is happening to me. I fall asleep on my stomach, wake-up on my back. My husband tries to flip me while I'm choking on my back but oddly I am completely dead to the world and unarousable. I think I will try to sleep on my side and stack pillows against my back. That might help in the meantime. Thanks again for your kind reply.

[Timefliesby]

It depends but it is usually a supplier called a DME (Durable medical equipment) Call your doctors office and ask for the details. It is totally ok to be OCD about all this. Make a list of questions so you don't get side tracked. Note that sometimes a doctor will also have a DME as part of his practice but you are not required to use it. You have the right to get that prescription in your hand and to take it where ever you want.

This weekend I'm going to sit down and write down all my questions and concerns so I am prepared. And you're right about the school thing. I didn't really think about it until now but I'll let my advisors for my program know what's going on. In case things get worse before they get better. I'll just send them a quick email and say hey I'm dealing with this and might need help later. So far I have managed to pass all my rotations but that doesn't mean I will pass future ones, especially if I continue to be late despite my best efforts.

[ChicagoGranny]

However, when I was a kid I could tolerate sleeping on my stomach more. He told me that as we age, most people start sleeping on their backs more since it's more comfortable.

This may help you - http://www.uarsrelief.com/sleeppositions.html. I used the Falcon position for a long time. Then I finally got CPAP and can sleep in any position without having apneas.