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What would you ask when getting a 2nd opinion?
First, I would like to thank everyone here for their help in educating me on my new way of life.
I was diagnosed with Mild/Mod OSA in August, had 2 sleep studies. The second was with a CPAP and nasal mask. According to my report, I did fairly poorly at all pressure settings. "On best CPAP 9.0, RDI 14.1., REM RDI 22.4" Ok, so what does the doctor tell me? Pick one of these 4 surgeries and good luck with that. Am I supposed to just take that and run with it ? Sorry, but after much research here and elsewhere on the web I look back at my visit with this doctor and say "hey, how come you didn't recommend a different machine or a different mask or both ?" Could it be that just the CPAP didn't work for ME ? I actually felt pretty good the next morning and didn't need a nap at all that day. Mind over matter?
I have a second opinion coming up on 9/24 with a different sleep apnea doctor in a different practice. My question for the group is: What questions should I ask this time around ?
I sleep every chance I get, I literally come home from work, eat dinner and go directly to bed. I sleep 8-9 hours every night and take 2-3 naps on my days off. My naps last from 2-4 hours each ! (Also, I have vivid dreams during my naps.) I work full time approx. 42 hours a week, commute time is 10 hours a week.
I am wasting my life away sleeping and I just want to be normal again. Any advice would be greatly appreciated :)
Thanks,
Donna B.
I was diagnosed with Mild/Mod OSA in August, had 2 sleep studies. The second was with a CPAP and nasal mask. According to my report, I did fairly poorly at all pressure settings. "On best CPAP 9.0, RDI 14.1., REM RDI 22.4" Ok, so what does the doctor tell me? Pick one of these 4 surgeries and good luck with that. Am I supposed to just take that and run with it ? Sorry, but after much research here and elsewhere on the web I look back at my visit with this doctor and say "hey, how come you didn't recommend a different machine or a different mask or both ?" Could it be that just the CPAP didn't work for ME ? I actually felt pretty good the next morning and didn't need a nap at all that day. Mind over matter?
I have a second opinion coming up on 9/24 with a different sleep apnea doctor in a different practice. My question for the group is: What questions should I ask this time around ?
I sleep every chance I get, I literally come home from work, eat dinner and go directly to bed. I sleep 8-9 hours every night and take 2-3 naps on my days off. My naps last from 2-4 hours each ! (Also, I have vivid dreams during my naps.) I work full time approx. 42 hours a week, commute time is 10 hours a week.
I am wasting my life away sleeping and I just want to be normal again. Any advice would be greatly appreciated :)
Thanks,
Donna B.
Views: 266
Replies to This Discussion
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Permalink Reply by Donna B. on
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Thanks j n k,
Yes, I have copies from both studies. I have sent those copies ahead of my appointment on the 24th. I have done lots of research trying to figure out my numbers but still am confused about what therapy is right for me. As I said, the first doctor didn't seem at all interested in pursuing any further therapies, just the surgeries. (I have excellent health insurance by the way)
And if there are so many different types of PAP machines, then why didn't they suggest them to me at my follow up after the CPAP study ? I didn't know then what I know now, otherwise I would have asked. Can I push for an APAP if this new doctor does not suggest it ?
Wow, as far as not eating before going to bed, that's a tough one for me. I get home around 6:30-7:00, eat dinner at 7:30 and then it's off to bed by 8:30-9:00p. I can barely keep my eyes open to eat dinner as it is. Thankfully I have a wonderful husband who cooks for me every night, if he didn't I would just go straight to bed !
Thanks,
Donna B.
j n k said:Did you get copies of the full versions of your sleep tests? Pouring over those can reveal a lot. The results of those tests would likely dictate what questions you should ask. I assume the second sleep doc will have a copy of those sleep tests to see, too?
If PAP therapy can help your sleep, the way to get it tweaked to the right pressure may be to see the data from your using an APAP for a few weeks. Evaluating response to therapy can be part of the diagnostic process.
From what you mention, my first suggestion as a fellow patient would be for you to find a way not to eat within three to four hours of going to bed. Going to bed with a full stomach can ruin the quality of sleep for many people, I understand.
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Permalink Reply by 99 on
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do not forget to have your copies returned as they are your property
try going to bed on a bannana
Donna B. said:Thanks j n k,
Yes, I have copies from both studies. I have sent those copies ahead of my appointment on the 24th. I have done lots of research trying to figure out my numbers but still am confused about what therapy is right for me. As I said, the first doctor didn't seem at all interested in pursuing any further therapies, just the surgeries. (I have excellent health insurance by the way)
And if there are so many different types of PAP machines, then why didn't they suggest them to me at my follow up after the CPAP study ? I didn't know then what I know now, otherwise I would have asked. Can I push for an APAP if this new doctor does not suggest it ?
Wow, as far as not eating before going to bed, that's a tough one for me. I get home around 6:30-7:00, eat dinner at 7:30 and then it's off to bed by 8:30-9:00p. I can barely keep my eyes open to eat dinner as it is. Thankfully I have a wonderful husband who cooks for me every night, if he didn't I would just go straight to bed !
Thanks,
Donna B.
j n k said:Did you get copies of the full versions of your sleep tests? Pouring over those can reveal a lot. The results of those tests would likely dictate what questions you should ask. I assume the second sleep doc will have a copy of those sleep tests to see, too?
If PAP therapy can help your sleep, the way to get it tweaked to the right pressure may be to see the data from your using an APAP for a few weeks. Evaluating response to therapy can be part of the diagnostic process.
From what you mention, my first suggestion as a fellow patient would be for you to find a way not to eat within three to four hours of going to bed. Going to bed with a full stomach can ruin the quality of sleep for many people, I understand.
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99: Bananas make me burp and I think sleeping on one would be messy. :)
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Permalink Reply by Banyon on
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1) Do much reading before you run off and have surgery. Here some things to start with http://doctorstevenpark.com/sleepapneasurgery and http://www.sleepguide.com/forum/topics/uppp-up3-under-attack-this
2) You don't mention your AHI and this makes me think it is very low. You may have UARS and not sleep apnea. See this article http://doctorstevenpark.com/uarsthehiddensleepcondition
3) If you sleep on your back, immediately began sleeping exclusively on your sides or stomach. This may give you some relief but is unlikely to cure your condition.
4) Finally, you say you are "wasting your life", I say "your life is wasting you". If you are feeling guilty for all the time you spend in bed, STOP IT. This is not a condition you caused or wanted, but it is a condition that is controlling you at the present. You are doing the right things to overcome it by having a PSG, going for a second opinion, and participating in the forum. That is all that can be asked of you at this point.
Good luck and let us know what the second doc says.
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@Banyon,
I cannot find a notation for AHI on my reports. My Epworth Score is 20. 1st study (no CPAP) Respiratory data: 93 resp. effort related arousals account for an RDI of 13. Average event 21 seconds, longest at 38 seconds. REM sleep RDI elevated at 22., non REM RDI of 11.
2nd study w/CPAP and nasal mask: Not as detailed as first report. Nasal CPAP with pressure settings 5.0-11.0, I did poorly at all pressure settings. On best CPAP 9.0, RDI 14.1, there was no break down of the test now that I look more closely at it. Is there another report I did not get or need ??
Donna B.
I was able to listen in on Dr. Park's webinar on Tuesday night. He even answered one of my questions. He spoke about UARS and I think that may be what I have. I have had trouble breathing through my nose for years. I did have a Septoplasty in 2001 but the results did not last long. (I also have no sense of smell, the house could be burning down around me and I wouldn't know it)
I have a constant 'lump' in my throat and mornings are the worst. I sleep with a breath rite strip every night and sometimes put on 2 when I am feeling really exhausted. I mostly sleep on my side according to my reports (82%) and it helps to have a 20 lb dog snuggled into my back at night.
I find this very odd, I wake up every night at 3:15am. I look at the clock and go back to sleep. It happened at both sleep studies too. I find that those last 2 hours of sleep from 3-5am are completely wasted. I wake every morning at 5a to go to work and it just "feels" like I did not sleep at all those last 2 hours. I can get up on the first alarm but I feel like I have been hit by a bus. By 11:00am I am ready to go back to bed.
Banyon said:1) Do much reading before you run off and have surgery. Here some things to start with http://doctorstevenpark.com/sleepapneasurgery and http://www.sleepguide.com/forum/topics/uppp-up3-under-attack-this
2) You don't mention your AHI and this makes me think it is very low. You may have UARS and not sleep apnea. See this article http://doctorstevenpark.com/uarsthehiddensleepcondition
3) If you sleep on your back, immediately began sleeping exclusively on your sides or stomach. This may give you some relief but is unlikely to cure your condition.
4) Finally, you say you are "wasting your life", I say "your life is wasting you". If you are feeling guilty for all the time you spend in bed, STOP IT. This is not a condition you caused or wanted, but it is a condition that is controlling you at the present. You are doing the right things to overcome it by having a PSG, going for a second opinion, and participating in the forum. That is all that can be asked of you at this point.
Good luck and let us know what the second doc says.
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Permalink Reply by Mary Z on
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Hi,Donna. Something that helps me
with the excessive daytime sleepiness is a mild stimulant like Provigil or Nuvigil. Some people never get over
the daytime sleepiness, but for others provigil or nuvigil can get you over the hump, while you look for other answers.
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I have been hearing ads on the radio lately for Nuvigil. I thought it was only for people who work overnight shifts, at least that's what the ad promotes it for. No amount of caffeine can keep me awake at work and I really don't want to drink that much anyway.
Does it help with concentration and fuzziness ? I can't function after lunch and struggle to make it to 6:00p and then the drive home.
Mary Z said:Hi,Donna. Something that helps me
with the excessive daytime sleepiness is a mild stimulant like Provigil or Nuvigil. Some people never get over
the daytime sleepiness, but for others provigil or nuvigil can get you over the hump, while you look for other answers.
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Provigil and Nuvigil are marketed for people with who work odd shifts and cannot stay awake.
I take Nuvigil for excessive daytime sleepiness. It works pretty well, though I still don't have my CPAP where it should be and have to take naps at times. Still, it keeps me awake and alert through most of my day and I go to bed about 9:30 or 10:00 I also tried adderal in a small dose (20 mg) and it did not help at all. With the Nuvigil I can drive, go to appointments and not fall asleep and feel alert.
Donna B. said:I have been hearing ads on the radio lately for Nuvigil. I thought it was only for people who work overnight shifts, at least that's what the ad promotes it for. No amount of caffeine can keep me awake at work and I really don't want to drink that much anyway.
Does it help with concentration and fuzziness ? I can't function after lunch and struggle to make it to 6:00p and then the drive home.
Mary Z said:
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Thanks Mary, My second opinion is this Friday, I will ask about the Nuvigil. I am better prepared this time around thanks to all of you here on Sleep Guide. Thank you to all that have replied. :)
Mary Z said:Provigil and Nuvigil are marketed for people with who work odd shifts and cannot stay awake.
I take Nuvigil for excessive daytime sleepiness. It works pretty well, though I still don't have my CPAP where it should be and have to take naps at times. Still, it keeps me awake and alert through most of my day and I go to bed about 9:30 or 10:00 I also tried adderal in a small dose (20 mg) and it did not help at all. With the Nuvigil I can drive, go to appointments and not fall asleep and feel alert.
Donna B. said:I have been hearing ads on the radio lately for Nuvigil. I thought it was only for people who work overnight shifts, at least that's what the ad promotes it for. No amount of caffeine can keep me awake at work and I really don't want to drink that much anyway.
Does it help with concentration and fuzziness ? I can't function after lunch and struggle to make it to 6:00p and then the drive home.
Mary Z said:
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2nd Opinion today !
New Doc is giving me an A-PAP machine to try, I get it on Tuesday next week. I had to wait about an hour to see him so what did I do? I napped in the waiting room. At least I didn't drool. He said they would spend as much time with me as necessary to get me fitted properly to the right mask. I guess I am off to a good start, we shall see.
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Sounds like a good start, except for the wait. I don't know why some docs can't get it together to be on time. An APAP is a good machine, allowing them to find an optimal range of pressures for you. Good news about the mask- that can be the breaking point.
Mary Z.
Donna B. said:2nd Opinion today !
New Doc is giving me an A-PAP machine to try, I get it on Tuesday next week. I had to wait about an hour to see him so what did I do? I napped in the waiting room. At least I didn't drool. He said they would spend as much time with me as necessary to get me fitted properly to the right mask. I guess I am off to a good start, we shall see.
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