Hi Everyone,
I just found this site, and I love it! I have been reading over some of the post and have found everyone here to have more knowledge than most Doctors I have seen!
I have Sleep Apnea, And I use CPAP nightly, and have been for about three years now. Sadly though I still feel awful, and there are some days that I do not function at all. When I start to feel real bad due to lack of sleep, like not being able to use my machine due to a severe cold, or a migraine, I have blackouts. I was told these may be micro sleeps, but how can I get past those. I no longer drive, as I am afraid that I may have a blackout while driving. I even wear a medical alert bracelet, just in case something happens. I have talked to my Doctor, and he says that I just need to sleep, and that the sleep apnea should not be causing the symptoms that I am having. Has anyone else experienced anything like this? From family, I was told that I do not loose consciousness, but when I blackout I become combative and disorientated. I am not aware of that!
I just feel that using CPAP almost nightly, I should feel better. Any comments or advice would be appreciated. Thanks!
Would Love some input!
I am sure that I am not the best person to respond, but "just sleep" is great if your pressure is correctly titrated. If it is too low, you may not be stopping the apneas.
Your machine does not give any useful data. I would think you would want to get ahold of a machine that does, better yet an APAP for a couple weeks and see if pressure setting is your problem.
Beyond that, if you are not having apneas, maybe a second opinion from another doc looking at all of you not just sleep.
Your machine does not give any useful data. I would think you would want to get ahold of a machine that does, better yet an APAP for a couple weeks and see if pressure setting is your problem.
Beyond that, if you are not having apneas, maybe a second opinion from another doc looking at all of you not just sleep.
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SleepyDitz
- Posts: 16
- Joined: Tue Jun 19, 2007 9:59 pm
I second the need for a better machine and the software so you can see how you are doing.
You use a nasal mask, you may be mouthbreathing, if so you could be loseing your treatment out of your mouth. without the ability to keep the pressure in your airway, you can lose all that your trying get out of treatment. This is the most comon cause of mis-treatment using a Nasal mask. Jim
You can tape your mouth or use a FF mask to overcome this.
You use a nasal mask, you may be mouthbreathing, if so you could be loseing your treatment out of your mouth. without the ability to keep the pressure in your airway, you can lose all that your trying get out of treatment. This is the most comon cause of mis-treatment using a Nasal mask. Jim
You can tape your mouth or use a FF mask to overcome this.
Use data to optimize your xPAP treatment!
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
What Jim said -- you are probably mouth breathing.
If all else fails, perhaps you need another titration. Do you have insurance?
Also, what pressure are you using, and do you have a copy of your first titration?
I would definitely focus on the "mouth breathing" issue first.
If all else fails, perhaps you need another titration. Do you have insurance?
Also, what pressure are you using, and do you have a copy of your first titration?
I would definitely focus on the "mouth breathing" issue first.
_________________
| Machine: DreamStation Auto CPAP Machine |
| Humidifier: DreamStation Heated Humidifier |
| Additional Comments: Compliant since April 2003. (De-cap-itated Aura). |
Re: Would Love some input!
Hi Sleepy Ditz!
Yes, some days in my “before CPAP life” I did experience symptoms similar to yours. I am better now, not to extend I would like to be, but much better. And as I said – I am still learning how to manage SA. Still a lot of things I need to learn. My major priority now is getting software compatible machine and start analyzing my sleep for further evaluation.
Here you can read sort of my sleep apnea diary.
http://www.sleepapneasymptom.medgrip.com/cpap_mask.html
Sergey.
Yes, some days in my “before CPAP life” I did experience symptoms similar to yours. I am better now, not to extend I would like to be, but much better. And as I said – I am still learning how to manage SA. Still a lot of things I need to learn. My major priority now is getting software compatible machine and start analyzing my sleep for further evaluation.
Here you can read sort of my sleep apnea diary.
http://www.sleepapneasymptom.medgrip.com/cpap_mask.html
Sergey.
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SleepyDitz
- Posts: 16
- Joined: Tue Jun 19, 2007 9:59 pm
I love that you are all so willing to help!
I just had another sleep study done about 5 months ago, and I have my pressure at a 10, but since I still feel poorly I was wondering about the effectiveness of my machine and how I am using it.
Now... to get a new machine that will record Data, do I need a new sleep study? Will the Doctor have to write a prescription, or will this be out of pocket?
Right now, since I am unable to work and I have a young child, we both have medicaid.
I just had another sleep study done about 5 months ago, and I have my pressure at a 10, but since I still feel poorly I was wondering about the effectiveness of my machine and how I am using it.
Now... to get a new machine that will record Data, do I need a new sleep study? Will the Doctor have to write a prescription, or will this be out of pocket?
Right now, since I am unable to work and I have a young child, we both have medicaid.
You would need your prescription, to get another XPAP. You can get a APAP online with your prescription for CPAP. You would probably have to get it out of pocket.
The cheapest route would be tape your lips shut or get a FF mask that fits correctly. You should be able to get a new mask every 6 months. Jim
The cheapest route would be tape your lips shut or get a FF mask that fits correctly. You should be able to get a new mask every 6 months. Jim
Use data to optimize your xPAP treatment!
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
Re: Would Love some input!
[quote="SleepyDitz"]Hi Everyone,
I just found this site, and I love it! I have been reading over some of the post and have found everyone here to have more knowledge than most Doctors I have seen!
I have Sleep Apnea, And I use CPAP nightly, and have been for about three years now. Sadly though I still feel awful, and there are some days that I do not function at all. When I start to feel real bad due to lack of sleep, like not being able to use my machine due to a severe cold, or a migraine, I have blackouts. I was told these may be micro sleeps, but how can I get past those. I no longer drive, as I am afraid that I may have a blackout while driving. I even wear a medical alert bracelet, just in case something happens. I have talked to my Doctor, and he says that I just need to sleep, and that the sleep apnea should not be causing the symptoms that I am having. Has anyone else experienced anything like this? From family, I was told that I do not loose consciousness, but when I blackout I become combative and disorientated. I am not aware of that!
I just feel that using CPAP almost nightly, I should feel better. Any comments or advice would be appreciated. Thanks!
I just found this site, and I love it! I have been reading over some of the post and have found everyone here to have more knowledge than most Doctors I have seen!
I have Sleep Apnea, And I use CPAP nightly, and have been for about three years now. Sadly though I still feel awful, and there are some days that I do not function at all. When I start to feel real bad due to lack of sleep, like not being able to use my machine due to a severe cold, or a migraine, I have blackouts. I was told these may be micro sleeps, but how can I get past those. I no longer drive, as I am afraid that I may have a blackout while driving. I even wear a medical alert bracelet, just in case something happens. I have talked to my Doctor, and he says that I just need to sleep, and that the sleep apnea should not be causing the symptoms that I am having. Has anyone else experienced anything like this? From family, I was told that I do not loose consciousness, but when I blackout I become combative and disorientated. I am not aware of that!
I just feel that using CPAP almost nightly, I should feel better. Any comments or advice would be appreciated. Thanks!
someday science will catch up to what I'm saying...
Re: Would Love some input!
Find a way to use your CPAP during the colds and migraines!! Yes i suffer from migraines also, although they are much less since I started CPAP. There are also different types of migraines, and you may need to be treated individually for each. I used to be treated for 2 different types, Neuro and Vascular. For years I was only treated for the Neuro and half the time the meds didn't work, then 1 Dr. told me it was probably because those were Vascular. He proscribed a different med and it worked, over time I learned to identify which kind I was having due to symptoms. I only took the appropriate med and most of the time I was right. However I NEVER stopped using my CPAP during them, I tried a couple of times and it only made things worse the next day.SleepyDitz wrote: I have Sleep Apnea, And I use CPAP nightly, and have been for about three years now. Sadly though I still feel awful, and there are some days that I do not function at all. When I start to feel real bad due to lack of sleep, like not being able to use my machine due to a severe cold, or a migraine, I have blackouts.
Here's the thing, you are not using your CPAP EVERY night. From what you said above, the only time you don't wear it is during cold and migraines, and these are the times when you don't feel great and have blackouts. Some people can't go without CPAP for 1 night or they start having severe symptoms immediately, I am one of those people, and it sounds to me like you may be as well! Then there are some people who can go days without wearing their CPAP and still feel no symptoms returning.SleepyDitz wrote: I just feel that using CPAP almost nightly, I should feel better. Any comments or advice would be appreciated. Thanks!
Since you have not stated that you are having problems with your mask/pressure and that your symptoms only occur after you have not used your CPAP, one can only assume that the answer would be to use your CPAP. Are you having the same feelings of being tired, no energy, falling asleep during the day? If so and you are using your CPAP daily, then there are other courses of action that you can take. Going out and buying a new machine when you aren't even using the one you have every night, and your symptoms are only occuring when you aren't, is a waste of money in my opinion.
Since you are on Medicaid, your changes of getting a better machine is probably zip.
Again, as Jim said, I think you should concentrate on whether you are mouth breathing or not.
I assume you've had several new masks over the years. Have you ever tried a full face mask? Or do you just get the same mask over and over again?
If you aren't willing to tape your mouth shut (as many here do), then get a full face mask and try it.
Then, if you can rule out mouth breathing and still have the blackouts, then certainly pursue other possible problems.
Again, as Jim said, I think you should concentrate on whether you are mouth breathing or not.
I assume you've had several new masks over the years. Have you ever tried a full face mask? Or do you just get the same mask over and over again?
If you aren't willing to tape your mouth shut (as many here do), then get a full face mask and try it.
Then, if you can rule out mouth breathing and still have the blackouts, then certainly pursue other possible problems.
_________________
| Machine: DreamStation Auto CPAP Machine |
| Humidifier: DreamStation Heated Humidifier |
| Additional Comments: Compliant since April 2003. (De-cap-itated Aura). |
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SleepyDitz
- Posts: 16
- Joined: Tue Jun 19, 2007 9:59 pm
I have asked about a full face mask, since I know that when I have a cold, having my mouth open when I sleep, it would be nice to have a full face mask. I was told that as long as I could use the mask I had, that I could not have a full face mask, since they are harder to use. I do not know what that would be... just that is what I was told.
I use my CPAP every night and feel bad, if I have a migraine the pressure of the air seems to make it worse. When I do not use the machine because of that... I know to stay home, I do not function well and I become grouchy! This only happens about once a week though, and other than that,, I use the CPAP every night for about 6-8 hours.
I am not on any medications, so that is not hindering me. I did get a chance to talk to a sleep tech at the clinic and he said my Index was 86, and that medicaid would not approve a new machine for at least 2 years, and I have had mine for just over a year.
I feel that I am learning a lot here, thanks!
I use my CPAP every night and feel bad, if I have a migraine the pressure of the air seems to make it worse. When I do not use the machine because of that... I know to stay home, I do not function well and I become grouchy! This only happens about once a week though, and other than that,, I use the CPAP every night for about 6-8 hours.
I am not on any medications, so that is not hindering me. I did get a chance to talk to a sleep tech at the clinic and he said my Index was 86, and that medicaid would not approve a new machine for at least 2 years, and I have had mine for just over a year.
I feel that I am learning a lot here, thanks!
I was saddled with that machine by my DME and was always having problems, Last year I bought myself a Remstar Pro 2 w cflex. What a difference that made. I sent it in for warranty work last week ( a week today) and I am in living purgatory from going back to the old machine. No relief in sight being set at 20cm
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I need more Coffee&Old Bushmills!
"Without Truckdrivers America Stops!"
I'm not always wrong,but I'm not always right!
"Semper Fi"
Yup, I am with Linda on the what to do first.
Eliminate any potential of mouth breathing/leaking,
Tape or try FF mask, Tape includes some sort of chinstrap either storebought or homemade (like and ace bandage)
Hard to do what I would as a next step with your machine since it doesn't collect data ( would want to look at data and possibly adjust pressure after checking your sleep study to make sure there isn't a reason it might be dangerous).
Then visit doc and investigate other causes of arrousals.
I am a snorer. My condition, is caused some by apnea, but even more by snoring which wakes me up. I can remember hearing it when I wake slightly from a deep sleep. I also used to go visit the bathroom 3 times a night, not that I really had to go. Just habit when waking up all the time. Now I don't make that trip often at all (even once a night).
If you decide you need and want to purchase a better machine out of pocket, your current prescription will do online. Make sure you get that in your hands for the future.
Look online, an APAP (tank model) is not that much $. You can use the same humidifier you have now. But I hear the software is getting difficult to get and it + card reader costs more than a new humidifier, so you might want the M series setup with the LED info if you have trouble purchasing the software. Or another brand where you can get software.
But you might just find improvement if you seal up that mouth or try a ff mask. That is the easiest and cheapest place to start.
The APAP out of pocket is most likely less costly (depending on copay and deductable) than additional sleep studies. And you can get data over time rather than just one night which may not be representative of your normal night.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, seal, Prescription, APAP
Eliminate any potential of mouth breathing/leaking,
Tape or try FF mask, Tape includes some sort of chinstrap either storebought or homemade (like and ace bandage)
Hard to do what I would as a next step with your machine since it doesn't collect data ( would want to look at data and possibly adjust pressure after checking your sleep study to make sure there isn't a reason it might be dangerous).
Then visit doc and investigate other causes of arrousals.
I am a snorer. My condition, is caused some by apnea, but even more by snoring which wakes me up. I can remember hearing it when I wake slightly from a deep sleep. I also used to go visit the bathroom 3 times a night, not that I really had to go. Just habit when waking up all the time. Now I don't make that trip often at all (even once a night).
If you decide you need and want to purchase a better machine out of pocket, your current prescription will do online. Make sure you get that in your hands for the future.
Look online, an APAP (tank model) is not that much $. You can use the same humidifier you have now. But I hear the software is getting difficult to get and it + card reader costs more than a new humidifier, so you might want the M series setup with the LED info if you have trouble purchasing the software. Or another brand where you can get software.
But you might just find improvement if you seal up that mouth or try a ff mask. That is the easiest and cheapest place to start.
The APAP out of pocket is most likely less costly (depending on copay and deductable) than additional sleep studies. And you can get data over time rather than just one night which may not be representative of your normal night.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, seal, Prescription, APAP
Last edited by snoregirl on Sat Jun 23, 2007 1:06 pm, edited 1 time in total.
I didn't mean to make my prior post to sound harsh, sorry if if did.
By not using your CPAP atleast one night out of the week, you are somewhat undoing all the good you did by being on it the rest of the week.
By saying you aren't on any meds, do you mean you don't take anything for your migraines? If that is the case, you should try getting something for them so that you can use your CPAP during those times.
In my state Medicaid will pay for a new mask every 6 months, I would advise calling yours and finding out how often they will for a new mask. If your DME won't let you get a full face mask, go online and get one and self bill to Medicaid, if they allow that. If not, then I would go to your Dr. and ask him to write you a script for one.
By not using your CPAP atleast one night out of the week, you are somewhat undoing all the good you did by being on it the rest of the week.
By saying you aren't on any meds, do you mean you don't take anything for your migraines? If that is the case, you should try getting something for them so that you can use your CPAP during those times.
In my state Medicaid will pay for a new mask every 6 months, I would advise calling yours and finding out how often they will for a new mask. If your DME won't let you get a full face mask, go online and get one and self bill to Medicaid, if they allow that. If not, then I would go to your Dr. and ask him to write you a script for one.