Just started using CPAP seriously and is very desperate

[benz42428]

This is actually the first post I've ever written in this forum, so let me introduce myself a little bit. I am currently a graduate student in a certain university in California. I was diagnosed with sleep apnea about 5 years ago when I was an undergrad (AHI about 46) and I was prescribed a CPAP for that. However, I never really used it, because whenever I did, I'd find it very uncomfortable and couldn't go to sleep. Then I would stop using i after a few days. After a while, when my sleep has become pretty bad and I realize I need to do something, I'd give it another try, and then give up. This has become a cycle for me for the last 5 years and I could say that my CPAP usage probably did not go above 15 days in total. One reason I did not take CPAP seriously at that time was probably because I felt I could "live" without it. Yes, it was not the healthiest way to live, but I could still go to school and my grades were good. Above anything, I thought I'd never sacrifice the feelings of being able to sleep naturally over anything. I guess I was wrong.
The reason I started to consider using CPAP again is because my sleep is now worse than ever. I could barely stay awake during the day. Also, doing research in graduate school requires a lot of critical thinking, long hours of work, and incredible amount of patience, none of which I could accomplish as long as I still have sleep apnea. So after two years of unproductive research, I decided that no matter what it takes, I have to fix my sleep apnea.
I started wearing CPAP everyday for the last two weeks. I got to say it has been one of the most painful periods of my life. I could not go to sleep very easily with the mask and the chin strap on my face (I am somewhat insomniac to begin with). And whenever I do fall asleep, I find myself unconsciously turning the machine off and removing the mask every night (I know this because I turn on the leak alarm and I never hear it). So I have been going to work in a zombie-like condition. As for today, I have not been able to fall asleep until 8 am in the morning. I have to remind myself that there is a light at the end of the tunnel, but I feel the prospect is very bleak for me. I have tried a few things that people suggest on this forum, like trying to lose weight, set alarm at night to wake up and check the mask, find the most comfortable mask, take sleeping pills, and etc. (I'm not saying the advice is bad though. In fact I do appreciate that there's any advice at all). Although I am aware that a lot of people take weeks or months to get used to CPAP, I have a feeling that no matter what I do, this is never going to work and in the end this is the life I have to live, that this is the final outcome of my life. I am in fact considering quitting graduate school and going back to live with my family.
I guess what I am looking for here is that I'd like to hear different experiences, like what you did go through before you started to gain benefits from CPAP and how did you remind yourself to not give up. Also, if you have any other advice, I'd appreciate them. Thank you in advance, and sorry if this all sounds like a whining.

[49er]

Welcome benz42428. Believe me, I totally understand what you're going through as my situation is quite similar.

Can you start off by using the link in my signature to fill out your equipment profile so the answers our best tailor to your situation? Also, please list the pressure you are currently at.

What is the severity of your apnea and have you considered a dental device? I was previously reluctantly recommending that as an alternative but for various reasons, i am more hesitant to do so. But depending on your situation, I might end up suggesting it.

Anyway, I am sorry you are a member of the "extreme struggle with cpap club no matter what you do." Hopefully, we can both find a way to exit it quickly.

49er

This is actually the first post I've ever written in this forum, so let me introduce myself a little bit. I am currently a graduate student in a certain university in California. I was diagnosed with sleep apnea about 5 years ago when I was an undergrad (AHI about 46) and I was prescribed a CPAP for that. However, I never really used it, because whenever I did, I'd find it very uncomfortable and couldn't go to sleep. Then I would stop using i after a few days. After a while, when my sleep has become pretty bad and I realize I need to do something, I'd give it another try, and then give up. This has become a cycle for me for the last 5 years and I could say that my CPAP usage probably did not go above 15 days in total. One reason I did not take CPAP seriously at that time was probably because I felt I could "live" without it. Yes, it was not the healthiest way to live, but I could still go to school and my grades were good. Above anything, I thought I'd never sacrifice the feelings of being able to sleep naturally over anything. I guess I was wrong.
The reason I started to consider using CPAP again is because my sleep is now worse than ever. I could barely stay awake during the day. Also, doing research in graduate school requires a lot of critical thinking, long hours of work, and incredible amount of patience, none of which I could accomplish as long as I still have sleep apnea. So after two years of unproductive research, I decided that no matter what it takes, I have to fix my sleep apnea.
I started wearing CPAP everyday for the last two weeks. I got to say it has been one of the most painful periods of my life. I could not go to sleep very easily with the mask and the chin strap on my face (I am somewhat insomniac to begin with). And whenever I do fall asleep, I find myself unconsciously turning the machine off and removing the mask every night (I know this because I turn on the leak alarm and I never hear it). So I have been going to work in a zombie-like condition. As for today, I have not been able to fall asleep until 8 am in the morning. I have to remind myself that there is a light at the end of the tunnel, but I feel the prospect is very bleak for me. I have tried a few things that people suggest on this forum, like trying to lose weight, set alarm at night to wake up and check the mask, find the most comfortable mask, take sleeping pills, and etc. (I'm not saying the advice is bad though. In fact I do appreciate that there's any advice at all). Although I am aware that a lot of people take weeks or months to get used to CPAP, I have a feeling that no matter what I do, this is never going to work and in the end this is the life I have to live, that this is the final outcome of my life. I am in fact considering quitting graduate school and going back to live with my family.
I guess what I am looking for here is that I'd like to hear different experiences, like what you did go through before you started to gain benefits from CPAP and how did you remind yourself to not give up. Also, if you have any other advice, I'd appreciate them. Thank you in advance, and sorry if this all sounds like a whining.

[LSAT]

Go to the ANNOUNCEMENTS section at the top of this page and read some of the 500 posts under "success stories".
Adjusting to CPAP requires a positive attitude and patience.

[STL Mark]

Welcome to the forum. You are in the right place here at cpaptalk.com. There are many people here to help. My advise would be to check with your medical insurance company and find out who some of the equipment suppliers are in the area of your university. If you can locate one that has on staff respiratory techs that will work with you it sometimes makes it easier to find a mask and settings that are the most comfortable for you.

[benz42428]

Welcome benz42428. Believe me, I totally understand what you're going through as my situation is quite similar.

Can you start off by using the link in my signature to fill out your equipment profile so the answers our best tailor to your situation? Also, please list the pressure you are currently at.

What is the severity of your apnea and have you considered a dental device? I was previously reluctantly recommending that as an alternative but for various reasons, i am more hesitant to do so. But depending on your situation, I might end up suggesting it.

Anyway, I am sorry you are a member of the "extreme struggle with cpap club no matter what you do." Hopefully, we can both find a way to exit it quickly.

49er

This is actually the first post I've ever written in this forum, so let me introduce myself a little bit. I am currently a graduate student in a certain university in California. I was diagnosed with sleep apnea about 5 years ago when I was an undergrad (AHI about 46) and I was prescribed a CPAP for that. However, I never really used it, because whenever I did, I'd find it very uncomfortable and couldn't go to sleep. Then I would stop using i after a few days. After a while, when my sleep has become pretty bad and I realize I need to do something, I'd give it another try, and then give up. This has become a cycle for me for the last 5 years and I could say that my CPAP usage probably did not go above 15 days in total. One reason I did not take CPAP seriously at that time was probably because I felt I could "live" without it. Yes, it was not the healthiest way to live, but I could still go to school and my grades were good. Above anything, I thought I'd never sacrifice the feelings of being able to sleep naturally over anything. I guess I was wrong.
The reason I started to consider using CPAP again is because my sleep is now worse than ever. I could barely stay awake during the day. Also, doing research in graduate school requires a lot of critical thinking, long hours of work, and incredible amount of patience, none of which I could accomplish as long as I still have sleep apnea. So after two years of unproductive research, I decided that no matter what it takes, I have to fix my sleep apnea.
I started wearing CPAP everyday for the last two weeks. I got to say it has been one of the most painful periods of my life. I could not go to sleep very easily with the mask and the chin strap on my face (I am somewhat insomniac to begin with). And whenever I do fall asleep, I find myself unconsciously turning the machine off and removing the mask every night (I know this because I turn on the leak alarm and I never hear it). So I have been going to work in a zombie-like condition. As for today, I have not been able to fall asleep until 8 am in the morning. I have to remind myself that there is a light at the end of the tunnel, but I feel the prospect is very bleak for me. I have tried a few things that people suggest on this forum, like trying to lose weight, set alarm at night to wake up and check the mask, find the most comfortable mask, take sleeping pills, and etc. (I'm not saying the advice is bad though. In fact I do appreciate that there's any advice at all). Although I am aware that a lot of people take weeks or months to get used to CPAP, I have a feeling that no matter what I do, this is never going to work and in the end this is the life I have to live, that this is the final outcome of my life. I am in fact considering quitting graduate school and going back to live with my family.
I guess what I am looking for here is that I'd like to hear different experiences, like what you did go through before you started to gain benefits from CPAP and how did you remind yourself to not give up. Also, if you have any other advice, I'd appreciate them. Thank you in advance, and sorry if this all sounds like a whining.

Thanks 49er for your reply. I'd fill out the information right away. As for the dental device, I do have it and it never really works for me even after several adjustments

[49er]

Welcome benz42428. Believe me, I totally understand what you're going through as my situation is quite similar.

Can you start off by using the link in my signature to fill out your equipment profile so the answers our best tailor to your situation? Also, please list the pressure you are currently at.

What is the severity of your apnea and have you considered a dental device? I was previously reluctantly recommending that as an alternative but for various reasons, i am more hesitant to do so. But depending on your situation, I might end up suggesting it.

Anyway, I am sorry you are a member of the "extreme struggle with cpap club no matter what you do." Hopefully, we can both find a way to exit it quickly.

49er

This is actually the first post I've ever written in this forum, so let me introduce myself a little bit. I am currently a graduate student in a certain university in California. I was diagnosed with sleep apnea about 5 years ago when I was an undergrad (AHI about 46) and I was prescribed a CPAP for that. However, I never really used it, because whenever I did, I'd find it very uncomfortable and couldn't go to sleep. Then I would stop using i after a few days. After a while, when my sleep has become pretty bad and I realize I need to do something, I'd give it another try, and then give up. This has become a cycle for me for the last 5 years and I could say that my CPAP usage probably did not go above 15 days in total. One reason I did not take CPAP seriously at that time was probably because I felt I could "live" without it. Yes, it was not the healthiest way to live, but I could still go to school and my grades were good. Above anything, I thought I'd never sacrifice the feelings of being able to sleep naturally over anything. I guess I was wrong.
The reason I started to consider using CPAP again is because my sleep is now worse than ever. I could barely stay awake during the day. Also, doing research in graduate school requires a lot of critical thinking, long hours of work, and incredible amount of patience, none of which I could accomplish as long as I still have sleep apnea. So after two years of unproductive research, I decided that no matter what it takes, I have to fix my sleep apnea.
I started wearing CPAP everyday for the last two weeks. I got to say it has been one of the most painful periods of my life. I could not go to sleep very easily with the mask and the chin strap on my face (I am somewhat insomniac to begin with). And whenever I do fall asleep, I find myself unconsciously turning the machine off and removing the mask every night (I know this because I turn on the leak alarm and I never hear it). So I have been going to work in a zombie-like condition. As for today, I have not been able to fall asleep until 8 am in the morning. I have to remind myself that there is a light at the end of the tunnel, but I feel the prospect is very bleak for me. I have tried a few things that people suggest on this forum, like trying to lose weight, set alarm at night to wake up and check the mask, find the most comfortable mask, take sleeping pills, and etc. (I'm not saying the advice is bad though. In fact I do appreciate that there's any advice at all). Although I am aware that a lot of people take weeks or months to get used to CPAP, I have a feeling that no matter what I do, this is never going to work and in the end this is the life I have to live, that this is the final outcome of my life. I am in fact considering quitting graduate school and going back to live with my family.
I guess what I am looking for here is that I'd like to hear different experiences, like what you did go through before you started to gain benefits from CPAP and how did you remind yourself to not give up. Also, if you have any other advice, I'd appreciate them. Thank you in advance, and sorry if this all sounds like a whining.

Thanks 49er for your reply. I'd fill out the information right away. As for the dental device, I do have it and it never really works for me even after several adjustments

Sorry to hear that Benz that the dental device didn't work. Well, we can strike that from the conversation then.

Have you had a recent sleep study by any chance?

What masks have you tried in an attempt to make pap therapy work? What do you find uncomfortable?

It is very tough to do, especially when you are exhausted but it really helps to try to isolate what the issues are. In my situation, I need to find a comfortable full face mask that doesn't leak at high pressures which is going to be a challenge. But at least I know what i have to do. It took me awhile to come to that conclusion because I was trying to get by with a lower pressure by using a neck collar that is no longer tolerable.

Are you a mouth breather or do you breath through your nose?

49er

PS - Forgot to ask if you have any nasal obstruction or congestion issues.

[chunkyfrog]

Another sleep study may be indicated; 5 years is enough elapsed time; and if your weight has changed (up OR down)
then a new titration may be needed. Many more masks are available now, and some of the newer machines are better
than what was around 5 years ago. Too often patients are issued the bare minimum machine and a poorly-fitting mask,
then are given the blame when it is too difficult to adapt. Many of us have had to FIGHT for appropriate treatment.
This can be a challenge, especially for women and anyone with gray hair--we are too often considered incompetent, etc, "blah, blah".

[Todzo]

Most people who find that they cannot use CPAP therapy do so within the first several weeks of trying. You seem to have done and are doing that. If you are ever successful in using CPAP therapy I believe that it will likely be after an extended time (some talk a year or so to get used to CPAP therapy) and that during that time your performance is unlikely to improve.

For your own enlightenment I would encourage that you look into the medical literature concerning CPAP usability (they call this by such oppressive names as “compliance” or “adherence”). You need this information to do your own good strategic planning. Look for objective data for times longer than a year.

I think your idea of taking a year or so off from school to deal with your health issues would be a wise choice. You will not produce your best work while you do not have good sleep.

If I were you I would work hard on those things which I have come to believe cause sleep apnea. Pursue an active lifestyle (with the help of a personal trainer if you can). Learn to eat well (with the help of a dietitian if you can). Stay away from GMOs, “cides”, preservatives, and growth hormones in your food. Learn to feed and seed your microbiome well. Respect your circadian rhythms. Reduce your intake of violent media. Tune your stress levels to your personal best output.

I think your chances of being able use CPAP would improve in a less stressed environment.

HTH,

Todzo

[MagsterMile]

Another sleep study may be indicated; 5 years is enough elapsed time; and if your weight has changed (up OR down)
then a new titration may be needed. Many more masks are available now, and some of the newer machines are better
than what was around 5 years ago. Too often patients are issued the bare minimum machine and a poorly-fitting mask,
then are given the blame when it is too difficult to adapt. Many of us have had to FIGHT for appropriate treatment.
This can be a challenge, especially for women and anyone with gray hair--we are too often considered incompetent, etc, "blah, blah".

I hear you Chunky Frog. Sometimes I feel like I must be 'invisible' to people since I'm a woman and have gray hair. I have to keep fighting for recognition of my sleep apnea. Benz: don't give up. I almost did (several times). Now I'm sleeping around 5-6 hrs each night. That's up from my initial 2 1/2 hrs. Your mask can make you or break you. I suffered through a horrible mask fit for six or more months and lived like a zombie. That's all changed now and I'm getting my life back. Don't give up. There are a lot of people who want to help you here at this forum.

[DavidCarolina]

Youre young, smart, and you know you have to get "compliant" (we all hate that word). So you have more going for you than you think.

So.......youre claustrophobic, but also struggling with logistical aspects of brain fog during the night. Some creative thinking along with some
experienced veterans who've been there WILL help you. Try these. Each solution is individualized, through trial and error. Every one of us
has overcome obstacles, life isnt easy.

--sleeping pills can be a serious detriment for some. Perhaps you might ask your doctor about and ssri like efexxor or klonopin. Or valium or xanex. Small dose. Sleeping pills can put you into too deep of a consciousness that is just not conducive to healthy sleep long term.

--are you getting enough physical excercise? Get as much as you can! Walking for an hour before dusk and empty your mind of stress. Turn that cell phone off and stop multi tasking.

-when you put the mask on you might prefer pulling it on and off your face at the bottom and breathing normally for awhile. This is a "transition" of sorts to getting used to the pressure.

-much of the claustrophobia is actually breathing HOT air. Position your cpap near a cold air source, and i mean COLD if you can. AC unit. Get a warm blanket and breathe the COLDER air even if youre using heavy humidification. Or, if desperate, turn off the humidification and see how that works. Breathing heavy hot air is claustrophobic.

--consider the BIGGEST deepest full face mask you can find. They make full face stuff now. Experiement in breathing through mouth AND nose. Make sure your nose is unstuffy. You need a clear airway.

--use a fan for air movement. Makes a nice difference blowing on your skin.

--DONT use alcohol and avoid MSG and aspartame. I wont get into the scientifics but they will impair breathing. Coffee may be keeping you awake? The idea is to get very tired and to sleep quickly.

--SWIMMING might help. It regulates my breathing every night. I swim at around 8 pm. Im very very relaxed for hours afterwards and my breathing is
regulated. There is a rythm to using the hose with your breathing and swimming or even yoga might help you.

--if you fail, keep trying. If you have to set an alarm, set it for an hour after falling asleep and then get the mask on when your exhausted. Youre less likely to have high ahi LATER in your delta/rem cycles.

--NEVER sleep on your back if you can help it.

--Is your bed big enough? Perhaps you feel confined on a small bed? King size is best.

[oak]

david wrote:

Perhaps you might ask your doctor about and ssri like efexxor

As one who is trying to GET OFF Effexor due to insomnia, I DO NOT recommend SSRI's or SNRI's for a person who says he already has insomnia. see recent thread about antidepressants

[mgaggie]

david wrote:

Perhaps you might ask your doctor about and ssri like efexxor

As one who is trying to GET OFF Effexor due to insomnia, I DO NOT recommend SSRI's or SNRI's for a person who says he already has insomnia. see recent thread about antidepressants

I agree with Oak. Effexor not only causes insomnia it can inhibit and or disrupt REM sleep ( I'm lucky if I got 5 mins REM during my three studies)

[kaiasgram]

benz, I may have missed this if you mentioned it, but what machine have you been using (one of the S8 series machines?), and at what pressure(s)? Have you been able to look at sleep data from your machine, and do you know if your apnea is being successfully treated while you are on the machine? Figuring out what discomforts might be causing you to take the mask off at night could be really helpful. For example, if you're on an auto-adjusting machine with a wide range of pressures set, the fluctuating pressures could be disturbing your sleep -- some people are sensitive to the pressure changes and do better with a narrower range or even with a single set pressure. Let us know more about the machine and pressure settings and what you know so far about your AHI during the times when you have been able to use the machine. If your apnea has not been well controlled or you don't know if it has, that could be another problem contributing to how you're feeling. Out of control leaks can also cause sleep disruption.

Hang in there, you've come to the best place for help.

[49er]

david wrote:

Perhaps you might ask your doctor about and ssri like efexxor

As one who is trying to GET OFF Effexor due to insomnia, I DO NOT recommend SSRI's or SNRI's for a person who says he already has insomnia. see recent thread about antidepressants

I second this big time who feels that being on antidepressants for years has contributed to my sleep cycle being extremely messed up.

49er

[Todzo]

david wrote:

Perhaps you might ask your doctor about and ssri like efexxor

As one who is trying to GET OFF Effexor due to insomnia, I DO NOT recommend SSRI's or SNRI's for a person who says he already has insomnia. see recent thread about antidepressants

I second this big time who feels that being on antidepressants for years has contributed to my sleep cycle being extremely messed up.

49er

Looking back at my SleepyHead data and looking at the sleep times chart I was amazed to see a clear "Non-24-hour sleep-wake disorder (Non-24)" pattern. I think you are right about the connection between circadian sleep cycles being messed up by SSRI SNRI drugs. Thanks for the information.

I am very glad to be rid of them. They should be limited by law to short term use.

take care,

Todzo