I hate sleep apnea.
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blew away
oh you poor thing, we've been there too, we so understand.
husband has had osa for years, progressively worse until diagnosed in april.
husband nearly loses job for not being productive enough
then nearly gets killed at job because of overtiredness
becomes more caffeine dependent and takes ephedrine to stay awake
didn't spend much time with me for months
experienced severe depression
got more and more sick from sleep deprivation and low blood oxygenation
finally got in to doctor's office
ran tests and tests and tests
inquired with doc about sleep clinic
did sleep studies
finally diagnosed
waited forever for rx
got machine
got mask, and another, and another
medical bills now amount to way too much
finally picking up the pieces
it's not easy to say the least. the stress of this ordeal has taken a couple years off our lives, i'm sure it's doing the same to you. it'll take us a long time to recover the medical expenses and get our lives back on track. but at least it's got a name and it's got a treatment. you can get through it too.
no matter how hard things get and how many others see it, make em wonder while you're still smiling. even if it's really, really hard.
husband has had osa for years, progressively worse until diagnosed in april.
husband nearly loses job for not being productive enough
then nearly gets killed at job because of overtiredness
becomes more caffeine dependent and takes ephedrine to stay awake
didn't spend much time with me for months
experienced severe depression
got more and more sick from sleep deprivation and low blood oxygenation
finally got in to doctor's office
ran tests and tests and tests
inquired with doc about sleep clinic
did sleep studies
finally diagnosed
waited forever for rx
got machine
got mask, and another, and another
medical bills now amount to way too much
finally picking up the pieces
it's not easy to say the least. the stress of this ordeal has taken a couple years off our lives, i'm sure it's doing the same to you. it'll take us a long time to recover the medical expenses and get our lives back on track. but at least it's got a name and it's got a treatment. you can get through it too.
no matter how hard things get and how many others see it, make em wonder while you're still smiling. even if it's really, really hard.
I am not normally this...umm...hateful.
But lately, as the days go by, I am feeling more and more tired.
And I am pretty sure I know what the problem is, and how to fix it.
Afterall, I am a problem solver.
I do fear that CPAP is not working for me. Here is why. I complained to my doc about how I have been feeling, so she upped the pressure from 11 to 13. I asked her about APAP specifically, and she said that she doesn't know enough about it. I also asked her about the Remstar Pro 2 with the monitoring and she says that she doesn't believe the data about the apneas. Okay.
So, I would go more with this...except I found someone that the CPAP didn't work for them either.
I am sleeping 7-8 hours a night during the week, and more on the weekends. I sleep straight through the night; I do not even get up to use the bathroom. But I struggle with getting up. I feel soooo tired.
But my doc is amazed at how compliant I am. Who cares about that? I mean seriously? We should care how effective it is...
Sleep apnea is seriously kicking my a$$...and I cannot be more proactive about it. It is affecting my judgement, my well being, and god knows what else. My anxiety is through the roof. Yet after 5 years or so of meds from my psychiatrist, I know those are not the answer. They are not treating the cause.
The thing I hate the most is how it is causing me to feel things I don't want to feel. I mean, when I am driving, I go into a state where I just want to end it all...the pain, the suffering, the humiliation...but this state comes on instantly and uncontrollably. Trust me, 95% of the time I want to live.
And then there is my wife, I get so frustrated with her. She won't let me sleep. She doesn't think that its important, that the 7 or 8 hours I get should be enough. Even on the weekend. But I know its not.
My mask doesn't leak, there are no holes in my hose. The filter seems okay. I noticed a difference the first two days after the new pressure adjusment, but now I feel no difference. So, I am going to go see her again in the future, and she is going to bump up my pressure again...and again...and so forth...
In the meantime however, my braces are on. They have been on about a week. That means I could be under the knife in as little as 25 weeks.
How can it be expected to splint something open that is small to begin with?
Why can't the doctors be more proactive? Like me? I mean, this is serious...yet I have to choose my words carefully otherwise they may take my license or lock me up...who knows. In fact, my sleep doc told me when I found out I had this almost 2 years ago that it is so serious she has the ability to take my license.
I am just soo tired of dealing with this. I am tired of the people that I have to deal with not caring enough. I mean, I was told if my surgery doesn't work...at least I will have a better looking mouth.
What I feel like telling them...is if it doesn't work, I might be dead.
I am entitled to hate sleep apnea because if I didn't have it, I would not be the person I am today.
I mean, I remember when I was a happy go lucky kid....but then again, I was tired then too.
But lately, as the days go by, I am feeling more and more tired.
And I am pretty sure I know what the problem is, and how to fix it.
Afterall, I am a problem solver.
I do fear that CPAP is not working for me. Here is why. I complained to my doc about how I have been feeling, so she upped the pressure from 11 to 13. I asked her about APAP specifically, and she said that she doesn't know enough about it. I also asked her about the Remstar Pro 2 with the monitoring and she says that she doesn't believe the data about the apneas. Okay.
So, I would go more with this...except I found someone that the CPAP didn't work for them either.
I am sleeping 7-8 hours a night during the week, and more on the weekends. I sleep straight through the night; I do not even get up to use the bathroom. But I struggle with getting up. I feel soooo tired.
But my doc is amazed at how compliant I am. Who cares about that? I mean seriously? We should care how effective it is...
Sleep apnea is seriously kicking my a$$...and I cannot be more proactive about it. It is affecting my judgement, my well being, and god knows what else. My anxiety is through the roof. Yet after 5 years or so of meds from my psychiatrist, I know those are not the answer. They are not treating the cause.
The thing I hate the most is how it is causing me to feel things I don't want to feel. I mean, when I am driving, I go into a state where I just want to end it all...the pain, the suffering, the humiliation...but this state comes on instantly and uncontrollably. Trust me, 95% of the time I want to live.
And then there is my wife, I get so frustrated with her. She won't let me sleep. She doesn't think that its important, that the 7 or 8 hours I get should be enough. Even on the weekend. But I know its not.
My mask doesn't leak, there are no holes in my hose. The filter seems okay. I noticed a difference the first two days after the new pressure adjusment, but now I feel no difference. So, I am going to go see her again in the future, and she is going to bump up my pressure again...and again...and so forth...
In the meantime however, my braces are on. They have been on about a week. That means I could be under the knife in as little as 25 weeks.
How can it be expected to splint something open that is small to begin with?
Why can't the doctors be more proactive? Like me? I mean, this is serious...yet I have to choose my words carefully otherwise they may take my license or lock me up...who knows. In fact, my sleep doc told me when I found out I had this almost 2 years ago that it is so serious she has the ability to take my license.
I am just soo tired of dealing with this. I am tired of the people that I have to deal with not caring enough. I mean, I was told if my surgery doesn't work...at least I will have a better looking mouth.
What I feel like telling them...is if it doesn't work, I might be dead.
I am entitled to hate sleep apnea because if I didn't have it, I would not be the person I am today.
I mean, I remember when I was a happy go lucky kid....but then again, I was tired then too.
The ox is slow...but the earth is patient.
Tell your doctor to give you your prescription, get an auto machine with card and software, and treat this yourself. It's really not hard. xPAP DOES work -- it can't NOT work, it's a PHYSICAL thing. Airway open, you breathe; airway closed, you don't. xPAP keeps it open. It's really that simple!
_________________
| Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Using built-in humidifier + auto-climate-control hose 8-13 CM Unreated AHI: 111 |
Josh,
Your doctor is an IDIOT! This is YOUR therapy and YOU need to be able to monitor it. The nightly sleep data may not be 100% accurate, but it's better than "a poke in the eye with a sharp stick"....which is what you're getting now, from your doctor.
If you have your prescription (and you should have it), you can purchase what you need from CPAP.COM. Keep your present machine for a backup.
Another thing your doctor could do for you is to write you a prescription for an overnight pulse oximetry study.....to check your blood oxygen desaturations while you sleep. It won't cost you a thing. Ask her about it.
My sleep doctor thought I needed a pressure of 18 and maybe a "roto router job" on my throat to let in more air, too. But, I found that a pressure of 10 works very well for me. Maybe you get more pressure through a smaller opening....???
Anyway, hang in there and start "kicking butt" with your doc.
You might remind your doctor that she works for YOU.
Best wishes,
Den
Your doctor is an IDIOT! This is YOUR therapy and YOU need to be able to monitor it. The nightly sleep data may not be 100% accurate, but it's better than "a poke in the eye with a sharp stick"....which is what you're getting now, from your doctor.
If you have your prescription (and you should have it), you can purchase what you need from CPAP.COM. Keep your present machine for a backup.
Another thing your doctor could do for you is to write you a prescription for an overnight pulse oximetry study.....to check your blood oxygen desaturations while you sleep. It won't cost you a thing. Ask her about it.
My sleep doctor thought I needed a pressure of 18 and maybe a "roto router job" on my throat to let in more air, too. But, I found that a pressure of 10 works very well for me. Maybe you get more pressure through a smaller opening....???
Anyway, hang in there and start "kicking butt" with your doc.
You might remind your doctor that she works for YOU.
Best wishes,
Den
Last edited by Wulfman on Wed Aug 23, 2006 9:20 am, edited 1 time in total.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
As with any health disorder, if your treatment results are inadequate and your doctor is unresponsive to unsatisfactory treatment, then it's time for a new doctor. I'm sorry you're having such a rough time, Josh. But there is light at the end of the tunnel.
Just remember that Josh and only Josh is in the driver's seat of Josh's life. You are allowed to retain your doctor's advice if that advice seems to work. You are also allowed to find a different doctor who is more responsive to your feedback. Stick with it, Josh. The trip through that tunnel is definitely worth the drive!
Just remember that Josh and only Josh is in the driver's seat of Josh's life. You are allowed to retain your doctor's advice if that advice seems to work. You are also allowed to find a different doctor who is more responsive to your feedback. Stick with it, Josh. The trip through that tunnel is definitely worth the drive!
Wulfman's post reminded me of something I'd been thinking about recently.
Why is it ok for a doctor to order his/her customers (patients) around and keep everything cryptic and so forth, when any other professional hired to help someone has to follow his/her customer's wishes and such?
Why is it ok for a doctor to order his/her customers (patients) around and keep everything cryptic and so forth, when any other professional hired to help someone has to follow his/her customer's wishes and such?
_________________
| Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Using built-in humidifier + auto-climate-control hose 8-13 CM Unreated AHI: 111 |
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MandoJohnny
- Posts: 305
- Joined: Sun Apr 23, 2006 11:23 am
- Location: St Louis, Missouri
We all feel your pain and we are all there to some extent. For me, I choose to see the problem differently, for my own mental heath and feeling of well being.
I don't see apnea as the problem. Apnea is just a word, just a diagnosis.
The results of apnea are the problem. Restless nights, daytime sleepiness, major health hazards.
I am grateful I got diagnosed and treated. Now I don't have apnea, I have "treated apnea" which is not a problem, but rather a problem solved.
CPAP presents challenges. But I am grateful I have it, because is solves the bigger problem. Home CPAP has only been around for about 20 years and the ones today are better than they have ever been. The treatment before home CPAP was tracheotomy. I am very grateful I don't have to have that. I am grateful that I have a machine and mask that work as well as they do.
I can figure out a work-around for every inconvenience caused by CPAP. It may take some time and some effort, but I see it as a challenge, not a burden, because the result is worth it and it is within my capability.
I am grateful for a great, well-qualified sleep doc who listens and is very responsive. My DME RT could use some work, but that is just another challenge. I have learned how to get a fire lit under his backside when I need to, and the devil in me kind of enjoys that!
Anyhow, Josh, good luck to you. Ultimately, all our problems are what we make out of them.
I don't see apnea as the problem. Apnea is just a word, just a diagnosis.
The results of apnea are the problem. Restless nights, daytime sleepiness, major health hazards.
I am grateful I got diagnosed and treated. Now I don't have apnea, I have "treated apnea" which is not a problem, but rather a problem solved.
CPAP presents challenges. But I am grateful I have it, because is solves the bigger problem. Home CPAP has only been around for about 20 years and the ones today are better than they have ever been. The treatment before home CPAP was tracheotomy. I am very grateful I don't have to have that. I am grateful that I have a machine and mask that work as well as they do.
I can figure out a work-around for every inconvenience caused by CPAP. It may take some time and some effort, but I see it as a challenge, not a burden, because the result is worth it and it is within my capability.
I am grateful for a great, well-qualified sleep doc who listens and is very responsive. My DME RT could use some work, but that is just another challenge. I have learned how to get a fire lit under his backside when I need to, and the devil in me kind of enjoys that!
Anyhow, Josh, good luck to you. Ultimately, all our problems are what we make out of them.
That's just my point......it's NOT OK. We're hiring them as part-time "consultants" to work for us. We need to be more proactive in all of this.JCraig wrote:Wulfman's post reminded me of something I'd been thinking about recently.
Why is it ok for a doctor to order his/her customers (patients) around and keep everything cryptic and so forth, when any other professional hired to help someone has to follow his/her customer's wishes and such?
(In my opinion)
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
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Anonymous CA
I don't have a spouse, but since I've been diagnosed I just KNOW that my friends and co-workers to not understand the depth of devistation that OSA causes. However, I printed out Josh's initial post and some of the replies and showed them to my friends and I think they FINALLY 'got it'.
Sounds to me like your wife needs to hear/see some of the problems the rest of us are having with CPAP -- we can't ALL be crazy people with character flaws!
Sounds to me like your wife needs to hear/see some of the problems the rest of us are having with CPAP -- we can't ALL be crazy people with character flaws!
This has been a popular post to respond to - owing to the fact that we ALL hate sleep apnea - me included.
I could be tempted to try to talk you out of it, or cheer you up, but instead I will just offer one thought -
It has been a tremendous relief for me to know that everyone here knows VERY WELL (I won't say 'exactly') what we are dealing with (OSA). That gives me comfort when I can't stand it. It helps me continue with diet and exercise which might help me go from 'severe' to just 'mild' apnea. When all the effort doesn't feel worth it, I hop on here and read and read and read the wise posts here from people just like me.
I hope it can provide some comfort to you too.
*hugs*
I could be tempted to try to talk you out of it, or cheer you up, but instead I will just offer one thought -
It has been a tremendous relief for me to know that everyone here knows VERY WELL (I won't say 'exactly') what we are dealing with (OSA). That gives me comfort when I can't stand it. It helps me continue with diet and exercise which might help me go from 'severe' to just 'mild' apnea. When all the effort doesn't feel worth it, I hop on here and read and read and read the wise posts here from people just like me.
I hope it can provide some comfort to you too.
*hugs*
Not working
Josh,
1) Tell your doc that the least they could do is order a two week trial on a loaner auto pap. That's as far as my nay-saying doc would go, and it revealed that my pressure had been inadequate for 8 months. Just because they don't know much about a subject doesn't make it not a good treatment. If they're not willing to learn about what could possibly help a patient, what good are they?
2) Those occasional overwhelming negative urges - any possibility they are medicine induced? Many years ago while depressed I nearly succeeded in accomplishing a life altering (ending) attempt under the influence of medications.
3) About that spouse... you're right, she doesn't understand. People form erroneous opinions when there is an absence of knowledge or experience on a subject. What would her reaction be if you printed out this thread in its entirety and showed it to her? Do you want to harbor anger towards her without giving her a chance to rise to the occasion? Only you know if that would help or open a hornet's nest. Just seems you're dealing with enough and this might be one area where you could get some relief. (Disclaimer - not a marriage counselor - couldn't fix my own!)
Kathy
1) Tell your doc that the least they could do is order a two week trial on a loaner auto pap. That's as far as my nay-saying doc would go, and it revealed that my pressure had been inadequate for 8 months. Just because they don't know much about a subject doesn't make it not a good treatment. If they're not willing to learn about what could possibly help a patient, what good are they?
2) Those occasional overwhelming negative urges - any possibility they are medicine induced? Many years ago while depressed I nearly succeeded in accomplishing a life altering (ending) attempt under the influence of medications.
3) About that spouse... you're right, she doesn't understand. People form erroneous opinions when there is an absence of knowledge or experience on a subject. What would her reaction be if you printed out this thread in its entirety and showed it to her? Do you want to harbor anger towards her without giving her a chance to rise to the occasion? Only you know if that would help or open a hornet's nest. Just seems you're dealing with enough and this might be one area where you could get some relief. (Disclaimer - not a marriage counselor - couldn't fix my own!)
Kathy
_________________
| Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
First off...I want to thank everyone for your posts...I read each and every one, despite my hectic schedule.
Kathy,
To answer number 2, I am on 0 medications right now...excpet at this moment I am on Brominifex for a cold...I have been med free for 8 months or so. I have been on a whole slew of them, to no avail. I do want to point out one thing...there was a time when I first started CPAP therapy that I felt the best that I have in my whole life. That was before I got the UPPP. I am very reluctant now to try meds, because my doc has tried to push them on me soo much. I really think the root cause of my symptoms is my lack of sleep, and I am out to prove that. But that is not to say that I am not open to suggestions...
Afterall, I do not feel refreshed when I wake up.
To be honest, I think I am in fight or flight mode...I am fighting sleep apnea as hard as I can. But sometimes when I lose, I go into flight mode and seek out any means possible to end it...of which I have no control. And when I was on my meds, they didn't help one single bit either.
All,
Here is a link to my X-ray...I want to share this with everyone
http://ahhhh3.spaces.live.com/
Kathy,
To answer number 2, I am on 0 medications right now...excpet at this moment I am on Brominifex for a cold...I have been med free for 8 months or so. I have been on a whole slew of them, to no avail. I do want to point out one thing...there was a time when I first started CPAP therapy that I felt the best that I have in my whole life. That was before I got the UPPP. I am very reluctant now to try meds, because my doc has tried to push them on me soo much. I really think the root cause of my symptoms is my lack of sleep, and I am out to prove that. But that is not to say that I am not open to suggestions...
Afterall, I do not feel refreshed when I wake up.
To be honest, I think I am in fight or flight mode...I am fighting sleep apnea as hard as I can. But sometimes when I lose, I go into flight mode and seek out any means possible to end it...of which I have no control. And when I was on my meds, they didn't help one single bit either.
All,
Here is a link to my X-ray...I want to share this with everyone
http://ahhhh3.spaces.live.com/
The ox is slow...but the earth is patient.
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Guest
Hi! I am newly diagnosed and don't even have my machine yet. I am in tears reading all of your emotional outpourings and your loving support too! I am scared and taking the first steps. I don't know what is osa and xpap? I am really hopeful that I will feel a noticible difference and will be motivated to "take back" my life! I need to lose weight too! I have been feeling paralized to do anything about anything and then I'm overwhelmed and anxious.
I can relate to Josh's poem as well as those of you who are offering help and support for him. you should all be proud! You've provided a safe place to get feelings out and a warm environment to deal and cope...
Is there a more appropriate place to start a thread for my questions or other comments?
Thanks,
Sleepy
I can relate to Josh's poem as well as those of you who are offering help and support for him. you should all be proud! You've provided a safe place to get feelings out and a warm environment to deal and cope...
Is there a more appropriate place to start a thread for my questions or other comments?
Thanks,
Sleepy