hello all,
well i`ve been diagnosed with severe sleep apnea, i`ve now started on a cpap machine with a smart card to determine what pressure I need. but I have questions this has taken a few years to get to this diagnosis and I have hit rock bottom with it. Im currently off work as I cant hardly function anymore. Im dizzy, very irritable, my vision is screwy, I cant focus enough to do anything anymore, weak and tired constantly, nausea at times. I was told I wake up about every 1.5 minutes and stop breathing for 15 to 35 seconds at each event.I`ve had eight million test done from stress test to mri`s on my brain, to gallons of blood work and everything comes back fine. i`ve told my dr I feel like i`m dieing I just feel that bad!! so from those of you that have traveled this path, what advice do you have to share? how long before I should expect to feel some relief? this is my first week on the machine but I dont notice any difference when I do get some sleep. what do you do when your just exhausted but cant sleep? I sleep around six hours every 2-3 days and toss and turn sometimes for whole nights. I guess at this point Im looking for a light at the end of the tunnel as Im 34 years old been extremely active my whole life. I work full time, i`m a vol. firefighter, atvs, snowmobiles, restore antique farm equipment, side building jobs in the summer months and now life has just stopped and I think my wife and son would like to disown me as I dont feel good enough to do anything anymore. sorry for the long post but I`m extremely frustrated and looking for others to tell me I havent lost my mind thanks all for any help and advice
its all new to me, and looking for help!
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battlin_blazes
- Posts: 72
- Joined: Mon Mar 07, 2005 7:03 pm
- Location: a cornfield in ohio
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HappyHoser
- Posts: 169
- Joined: Mon Jan 24, 2005 8:40 pm
- Location: Missoula, Montana
Welcome to the forum! You definately are not going nuts! The answer to your question of how long before you feel better is probably anywhere from tomorrow morning on. Some folks respond right away and others take a few months. You didn't mention but it sounds like you are tolerating the mask and machine. There are some very talented and informed people on this forum so don't hesitate to get specific with your questions, we all share the some basic background. The best general advice is probably just stay with it no matter how frustrating it may be at first, it will help you get your life back.
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| Mask | Humidifier | |
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Doug
HappyHoser
HappyHoser
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battlin_blazes
- Posts: 72
- Joined: Mon Mar 07, 2005 7:03 pm
- Location: a cornfield in ohio
they have me on a remstar auto, and i`m using an ultra mirage full face mask. i requested the full face mask as i really had issues with the nasal mask, i kept wanting to breathe through my mouth. so over all im getting along ok with them. a little akward and uncomfortable but getting better. i am just so ready to feel some kind of relief!!! i want my life back!! but my mind set is I know I have to get used to it and I will. Its just so frustrating as Im sure you all know. my biggest thing now is there are just nights that I dont sleep, my wife says she`s starting to feel like she has sleep apnea because I keep her up all night.I have asked my dr to give me something to help me sleep and im still waiting on that reply. it seems as if i`ll sleep a night and then be up the next night or two. crazy stuff but I know even though I feel horrible the diagnosis could have been alot worse.
Re: its all new to me, and looking for help!
Don't worry, we all THOUGHT we were crazy, sick, tired, and have all gone thru the doctoring, testing, missed diagnoses, on and on. But the point is they're some very savvy smart and fun people on this board (yes apnea problems can bring out humor). So keep reading the posts as they relate to you and just know you are NOT ALONE, ok?
It's best to go back thru older postings as they relate to any particular questions you have re: your machine, masks, sleeping etc. What your test #'s mean. You will learn a lot on the board.
I knew NOTHING and learned everything I needed to make informed decisions based on advice. Just a head's up, most of us may not be doctors, RT's, DME's, or anything else, so always be sure you have a dialogue going with a doctor you're comfortable with just to be on safe side.
Don't feel bad, I need a sleep med to go to sleep.It's just the way some of these sleep problems go.
I've only been pap'ing for 5+ wks, and do feel better. So give yourself time, patience and come to this board for understanding questions, and sometimes so good arguments as well!
OK?
Good Luck
GZ
It's best to go back thru older postings as they relate to any particular questions you have re: your machine, masks, sleeping etc. What your test #'s mean. You will learn a lot on the board.
I knew NOTHING and learned everything I needed to make informed decisions based on advice. Just a head's up, most of us may not be doctors, RT's, DME's, or anything else, so always be sure you have a dialogue going with a doctor you're comfortable with just to be on safe side.
Don't feel bad, I need a sleep med to go to sleep.It's just the way some of these sleep problems go.
I've only been pap'ing for 5+ wks, and do feel better. So give yourself time, patience and come to this board for understanding questions, and sometimes so good arguments as well!
OK?
Good Luck
GZ
battlin_blazes wrote:hello all,
well i`ve been diagnosed with severe sleep apnea, i`ve now started on a cpap machine with a smart card to determine what pressure I need. but I have questions this has taken a few years to get to this diagnosis and I have hit rock bottom with it. Im currently off work as I cant hardly function anymore. Im dizzy, very irritable, my vision is screwy, I cant focus enough to do anything anymore, weak and tired constantly, nausea at times. I was told I wake up about every 1.5 minutes and stop breathing for 15 to 35 seconds at each event.I`ve had eight million test done from stress test to mri`s on my brain, to gallons of blood work and everything comes back fine. i`ve told my dr I feel like i`m dieing I just feel that bad!! so from those of you that have traveled this path, what advice do you have to share? how long before I should expect to feel some relief? this is my first week on the machine but I dont notice any difference when I do get some sleep. what do you do when your just exhausted but cant sleep? I sleep around six hours every 2-3 days and toss and turn sometimes for whole nights. I guess at this point Im looking for a light at the end of the tunnel as Im 34 years old been extremely active my whole life. I work full time, i`m a vol. firefighter, atvs, snowmobiles, restore antique farm equipment, side building jobs in the summer months and now life has just stopped and I think my wife and son would like to disown me as I dont feel good enough to do anything anymore. sorry for the long post but I`m extremely frustrated and looking for others to tell me I havent lost my mind thanks all for any help and advice
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wading thru the muck!
- Posts: 2799
- Joined: Tue Oct 19, 2004 11:42 am
Battlin,
Do you know what the minimum pressure is set at on the REMstar auto? If it is set at the machine minimum of 4cm that may be the reason you feel you need to breathe through your mouth. Most people need a minimum of about 6cm to feel as though they are not suffocating. The way the auto works is that it stays at the minimum pressure until you need the increased pressure to prevent an apnea or another obstructive event. Do you know what setting the C-flex is at. What this does is make it easier to exhale. If this is not tuned on or set high enough this can also cause you to feel it's hard to breathe. I set mine at 2 or 3.
Do you know what the minimum pressure is set at on the REMstar auto? If it is set at the machine minimum of 4cm that may be the reason you feel you need to breathe through your mouth. Most people need a minimum of about 6cm to feel as though they are not suffocating. The way the auto works is that it stays at the minimum pressure until you need the increased pressure to prevent an apnea or another obstructive event. Do you know what setting the C-flex is at. What this does is make it easier to exhale. If this is not tuned on or set high enough this can also cause you to feel it's hard to breathe. I set mine at 2 or 3.
Sincerely,
wading thru the muck of the sleep study/DME/Insurance money pit!
wading thru the muck of the sleep study/DME/Insurance money pit!
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Guest
thanks all for the replies, thought i was goin nuts!! ahhh nevermind im already nuts!! but it is good to hear the stories of others in the same boat.
wadin,
I believe the machine is set at 5cm on the minimum, and I think the dr said it will go up to 20cm if needed? not sure though?as far as the cflex I dont have a clue its all greek to me. but I feel like its easier to breathe with the machine im not really fighting it too much just a little uncomfortable and akward getting used to having it on your face all night.
wadin,
I believe the machine is set at 5cm on the minimum, and I think the dr said it will go up to 20cm if needed? not sure though?as far as the cflex I dont have a clue its all greek to me. but I feel like its easier to breathe with the machine im not really fighting it too much just a little uncomfortable and akward getting used to having it on your face all night.
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wading thru the muck!
- Posts: 2799
- Joined: Tue Oct 19, 2004 11:42 am
battlin,
Sounds like you might feel more comfortable using a nasal pllow interface the the (ResMed-Mirage-Swift). This is what I use. It is much less obtrusive. Click on the link and take a look at it.
Link: Swift
Sounds like you might feel more comfortable using a nasal pllow interface the the (ResMed-Mirage-Swift). This is what I use. It is much less obtrusive. Click on the link and take a look at it.
Link: Swift
Sincerely,
wading thru the muck of the sleep study/DME/Insurance money pit!
wading thru the muck of the sleep study/DME/Insurance money pit!
Swift Nasal Pillows
I used the swift as well with my apap. It's less ''intrusive'' than other types of masks, or other types of interfaces. I cannot abide any thing on my face, nose, forehead, whatnot, so once again for my, IN MY OPINION, the swift works out well. But I am also able to monitor my ap's/pop's because I have the software program so I can well document how much better I'm doing apnea-wise than my titration study.
I do like the apap theory and practice, as I'm not getting too much pressure which I don't want, rather, getting what I need, when I need it. Makes sense to me and works for me. IMHO.
Good luck, and keep posting, you will learn something probably new every day, at least I have.
Gailzee
I do like the apap theory and practice, as I'm not getting too much pressure which I don't want, rather, getting what I need, when I need it. Makes sense to me and works for me. IMHO.
Good luck, and keep posting, you will learn something probably new every day, at least I have.
Gailzee
wading thru the muck! wrote:battlin,
Sounds like you might feel more comfortable using a nasal pllow interface the the (ResMed-Mirage-Swift). This is what I use. It is much less obtrusive. Click on the link and take a look at it.
Link: Swift
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rested gal
- Posts: 12883
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Battlin', I have the same mask you have - ResMed Ultra Mirage FF (full face). It's the least prone to leak of any full face mask I've tried (I haven't tried the F&P FF mask though - don't really want to unless one just dropped in my lap, as other F&P nasal masks were leaky for me.)
Anyway, you have a very good mask. Although their are other good types of masks, the Swift being a good one, I'd stick with the FF mask you have until you get more at ease with this kind of treatment and don't feel a need to breathe through your mouth. Not that breathing through your mouth with a FF mask is a bad thing - just more drying, even with heated humidification - and can lead to greater incidence of tooth decay for some people.
Better to breathe through your nose - if you can, but some can't. If your nose gets stuffy after you've been laying down for awhile, you might want to keep on mouth breathing with the FF mask. A heated humidifier is a must for many people, with any kind of mask.
If your machine really is set at "5" for the minimum, that might very well not feel like enough air to you. I would have to have mine at 7 as a minimum to really feel comfortable. Actually, I have my range at 8 - 16, and the machine spends most of the time around 8,9 or 10. I have the same machine you have, Battlin - the Respironics Remstar Auto with C-flex (and a heated humidifier). I have the C-flex set at "3" to give the most pressure drop with each exhalation. That's a good machine.
It really can take awhile to get used to all the stuff you're having to use now just to sleep. At first it's kind of like trading off one kind of sleep disruption (apneas) for another - mainly something being on your face while you try to sleep, no matter how comfortable you are with it. Perhaps your doctor could prescribe something like Ambien for just a few days or a week, until you get more settled into the routine of this new way of sleeping.
I'd definitely get that lower pressure raised a cm or two, as soon as you can. But hey, I'm no doctor.
P.S. They may have you on one of the older Remstar autos, which is fine. The way to tell if it's the newest Remstar auto is if it has a blue sticker on top that says "C-flex". All the newest Remstar Autos come with C-flex and that sticker on top. C-flex is a very nice comfort feature that drops the pressure some every time you exhale. Easier to breathe out against.
Anyway, you have a very good mask. Although their are other good types of masks, the Swift being a good one, I'd stick with the FF mask you have until you get more at ease with this kind of treatment and don't feel a need to breathe through your mouth. Not that breathing through your mouth with a FF mask is a bad thing - just more drying, even with heated humidification - and can lead to greater incidence of tooth decay for some people.
Better to breathe through your nose - if you can, but some can't. If your nose gets stuffy after you've been laying down for awhile, you might want to keep on mouth breathing with the FF mask. A heated humidifier is a must for many people, with any kind of mask.
If your machine really is set at "5" for the minimum, that might very well not feel like enough air to you. I would have to have mine at 7 as a minimum to really feel comfortable. Actually, I have my range at 8 - 16, and the machine spends most of the time around 8,9 or 10. I have the same machine you have, Battlin - the Respironics Remstar Auto with C-flex (and a heated humidifier). I have the C-flex set at "3" to give the most pressure drop with each exhalation. That's a good machine.
It really can take awhile to get used to all the stuff you're having to use now just to sleep. At first it's kind of like trading off one kind of sleep disruption (apneas) for another - mainly something being on your face while you try to sleep, no matter how comfortable you are with it. Perhaps your doctor could prescribe something like Ambien for just a few days or a week, until you get more settled into the routine of this new way of sleeping.
I'd definitely get that lower pressure raised a cm or two, as soon as you can. But hey, I'm no doctor.
P.S. They may have you on one of the older Remstar autos, which is fine. The way to tell if it's the newest Remstar auto is if it has a blue sticker on top that says "C-flex". All the newest Remstar Autos come with C-flex and that sticker on top. C-flex is a very nice comfort feature that drops the pressure some every time you exhale. Easier to breathe out against.
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Janelle
Right now I have my APAP (420E) set at a minimum of 7. 5 was too low when I first started and 6 didn't seem like quite enough. I've been happy with 7 and the high at about 17.
It takes most of us, in spite of some of the polls that indicate otherwise, several weeks if not months to notice any real difference in the way we feel. As many have said, it took you a long time to get where you are and it's going to take some time to get caught up on your sleep deficit. And at first the change may be so small you may not even notice it.
I've been on APAP for about 3 months now, and I have just started noticing a real improvement in the just the last weeks. But the main thing that made me realize it was working, was not the hours of sleep I was getting (that varies from 2 to 7, most nights around 5) but whether or not I automatically "stretched" in the morning before getting out of bed. you know the arms above the head, back pulled in and chest out kind of stretch you used to do back in the early days of good sleep. I hadn't done that in years, I realize now and now I do most mornings.
I feel pretty alert during the mornings, but after lunch until only the last week or so, I was so sleepy I HAD to take a nap. I still couldn't drive very far without getting sleepy, so I take Focalin for when I have to make trips by car or need to be extra alert. I still have some sleep deficit catching up to do, obviously.
Catching up takes time, but it will happen. For each of us it is different. And a lot will depend on how comfortable we are with our treatment. I'm sure a lot of your problem right now is the unused to feel of the mask and the air blowing at you. This is normal. And it will take time before you body starts to ignore it. Kind of like living near railroad tracks with a 2 a.m. train. After a while, you don't even hear it. This is one of the wonders of the human body, its ability to recognize a constant irritant and tune it out. Ever wonder how meatpackers can stand the smell? Their brains tune it out after about 15 minutes. No lie! Unfortunately, our bodies are a little slower, or a lot slower, with tuning out Pap masks and the whole hose thing.
It takes most of us, in spite of some of the polls that indicate otherwise, several weeks if not months to notice any real difference in the way we feel. As many have said, it took you a long time to get where you are and it's going to take some time to get caught up on your sleep deficit. And at first the change may be so small you may not even notice it.
I've been on APAP for about 3 months now, and I have just started noticing a real improvement in the just the last weeks. But the main thing that made me realize it was working, was not the hours of sleep I was getting (that varies from 2 to 7, most nights around 5) but whether or not I automatically "stretched" in the morning before getting out of bed. you know the arms above the head, back pulled in and chest out kind of stretch you used to do back in the early days of good sleep. I hadn't done that in years, I realize now and now I do most mornings.
I feel pretty alert during the mornings, but after lunch until only the last week or so, I was so sleepy I HAD to take a nap. I still couldn't drive very far without getting sleepy, so I take Focalin for when I have to make trips by car or need to be extra alert. I still have some sleep deficit catching up to do, obviously.
Catching up takes time, but it will happen. For each of us it is different. And a lot will depend on how comfortable we are with our treatment. I'm sure a lot of your problem right now is the unused to feel of the mask and the air blowing at you. This is normal. And it will take time before you body starts to ignore it. Kind of like living near railroad tracks with a 2 a.m. train. After a while, you don't even hear it. This is one of the wonders of the human body, its ability to recognize a constant irritant and tune it out. Ever wonder how meatpackers can stand the smell? Their brains tune it out after about 15 minutes. No lie! Unfortunately, our bodies are a little slower, or a lot slower, with tuning out Pap masks and the whole hose thing.
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littlebaddow
- Posts: 416
- Joined: Wed Dec 08, 2004 12:21 pm
- Location: Essex, England
Welcome battlin
Everyone is different and will respond to treatment at their own rate, the common point is that perseverence is essential.
In my case, the improvement was slow and steady and it was a month or more before I realised I was feeling a little better. My wife was the first to notice. She told me I was snoring/snorting less at night, and that I was no longer so irritable during the day
It sounds like you've made a good start on the road to recovery - do keep at it.
Everyone is different and will respond to treatment at their own rate, the common point is that perseverence is essential.
In my case, the improvement was slow and steady and it was a month or more before I realised I was feeling a little better. My wife was the first to notice. She told me I was snoring/snorting less at night, and that I was no longer so irritable during the day
It sounds like you've made a good start on the road to recovery - do keep at it.
_________________
| Machine | Mask | |
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Airsense 10 & Airfit N20
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Guest
Please keep us posted Battlin'
I was very moved by your story. There is nothing like wanting to contribute to the world and to your family and being prevented by a disease like sleep apnea.
It sounds like you have the right equipment. Keep perservering and be patient.
And let us know how you make out.
As others have said, your sleep deficit is probably years in the making. Give it at least 2-3 months to see a difference. Patience is tough when you are suffering, but it is comforting to know that at least you are now doing something about it!
Based upon my personal experience, it was a couple of weeks before I started to get flashes of being rested. Every day is bit better...
Best of luck!
It sounds like you have the right equipment. Keep perservering and be patient.
And let us know how you make out.
As others have said, your sleep deficit is probably years in the making. Give it at least 2-3 months to see a difference. Patience is tough when you are suffering, but it is comforting to know that at least you are now doing something about it!
Based upon my personal experience, it was a couple of weeks before I started to get flashes of being rested. Every day is bit better...
Best of luck!
Best wishes and good dreams...
Hopeful
Hopeful
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Zees Pleez
- Posts: 77
- Joined: Tue Mar 01, 2005 9:08 pm
Be sure to ask questions about what pressure you were at most of the time, the maximum pressure it set and what the recommended constant is. If there is much variance (there usually is), you should ask the doctor if he will write the precription for APAP with a range starting just a little below the pressure where you spent the most time and ending just above the max that showed up. When you get titrated with an APAP, it makes it a lot more obvious that a constant flow is a compromise that is more than you need most of the time and less than you occasionally require.
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battlin_blazes
- Posts: 72
- Joined: Mon Mar 07, 2005 7:03 pm
- Location: a cornfield in ohio
the dr has agreed to put me on ambiant? (sp?) to try to get some rest THANK YOU!!!! so at this point im looking forward to maybe getting some sleep. can you tell me the difference in the apap and cpap im assuming apap is adjustable pressure and cpap is constant pressure? so to really confuse myself then what is the bipap?
hopeful,
I always thought I was a tough guy, lol. but at 34 I must admit this sleep apnea has just won the battle with me its broke me down mentally and physically. Im not sure I could fight my way out of a paper bag right about now!!!lol but Im determined to win the war, it just really upsets me because I know Ive been a horrible husband and father, losing my temper at times for no reason. so Im anxious to get back on my feet I have a wife of 15 years and 12 year old son that I owe alot for sticking by me because honestly Im not sure I could have put up with what they have!!! so to the families out there reading hang in there it is a rough road but trust me the moodiness and all the aggrevation is not intentional. unfortunately for me it has taken 3-4 years to figure this out..
thanks again to all it definately eases the mind knowing there is hope!!!!
hopeful,
I always thought I was a tough guy, lol. but at 34 I must admit this sleep apnea has just won the battle with me its broke me down mentally and physically. Im not sure I could fight my way out of a paper bag right about now!!!lol but Im determined to win the war, it just really upsets me because I know Ive been a horrible husband and father, losing my temper at times for no reason. so Im anxious to get back on my feet I have a wife of 15 years and 12 year old son that I owe alot for sticking by me because honestly Im not sure I could have put up with what they have!!! so to the families out there reading hang in there it is a rough road but trust me the moodiness and all the aggrevation is not intentional. unfortunately for me it has taken 3-4 years to figure this out..
thanks again to all it definately eases the mind knowing there is hope!!!!