Please help me to convince the doctor...... (UPDATED)
Please help me to convince the doctor...... (UPDATED)
Please help me to convince the doctor to get me sleep study.
Hello everyone.
I'm Yimeng. I'm 23 years old guy who study in Finland. I have been on the forum for 2 years since I started CPAP treatment, though I rarely post or reply. I've learned a lot from here. Thanks to you guys!
I've diagnosed OSA during my first sleep study, but there was only 2 central apnea event. Then, I started to use CPAP (Resmed S8 Elite II). To some extend the therapy helped a little. However, I still feel sleepy during the daytime. It's easily for me to fall into sleep during lectures. A year ago, I have bought S9 AutoSet out of my own pocket, because I suppose that the pressure needed always increases. The machine tells me that I have mostly central apnea. I contacted doctor, he told me that the machine is not accurate, he doesn't believe that the machine can distinguish between OSA and CSA, and he refused to give me a second sleep study. I have on average AHI 1.6 which includes 0 OSA, 1.6 CSA. It looks fine. But I still feel lack of sleep.
Last September, I've moved to Helsinki to start my first year master study in university. I fell into sleep everyday during most of the lectures. This really frustrated me. So, I went to doctor to ask for a sleep study. The doctor refused me, even I showed the data from my machine. She told me that AHI 1.6 is very good number which means I have been treated very well by CPAP therapy, the reason it shows central apnea is because the leakage. (I do have problem with mouth leaking. I have tried chin strip, it helps sometimes. I have tried some full face masks, but haven't found any suitable for me. Recently, I was trying to train my mouth to close during sleep, I have got some progress.) In fact, I suppose that the machine has showed the right data, because sometimes when there weren't leaks, the events are still central apnea. In recent few weeks, I start to wake up at midnight, can't fall into sleep again. I feel terrible during daytime, I cannot concentrate when reading.
I have made an appointment with doctor on next monday. please give me some advices for how to convince the doctor to order me a sleep study. I guess that the reason why doctors didn't order me sleep study is because of money. In finland, KELA(The Social Insurance Institution of Finland) pays part of the bill, though I'm not a citizen of finland. To get a sleep study in private clinic would cost more than 300 euros which my insurance won't pay for(pre-existing condition). In public hospital, it cost me about 28 euros.
Thanks for reading and suffering my poor English.
Here are some pics of typical nights. Though there are leaks, but when there is no leak, CSA event still happens. I doubt that does the machine always(I mean in most of the times) interpret the apnea as CSA when leak from mouth?
The first sleep study report:
Hello everyone.
I'm Yimeng. I'm 23 years old guy who study in Finland. I have been on the forum for 2 years since I started CPAP treatment, though I rarely post or reply. I've learned a lot from here. Thanks to you guys!
I've diagnosed OSA during my first sleep study, but there was only 2 central apnea event. Then, I started to use CPAP (Resmed S8 Elite II). To some extend the therapy helped a little. However, I still feel sleepy during the daytime. It's easily for me to fall into sleep during lectures. A year ago, I have bought S9 AutoSet out of my own pocket, because I suppose that the pressure needed always increases. The machine tells me that I have mostly central apnea. I contacted doctor, he told me that the machine is not accurate, he doesn't believe that the machine can distinguish between OSA and CSA, and he refused to give me a second sleep study. I have on average AHI 1.6 which includes 0 OSA, 1.6 CSA. It looks fine. But I still feel lack of sleep.
Last September, I've moved to Helsinki to start my first year master study in university. I fell into sleep everyday during most of the lectures. This really frustrated me. So, I went to doctor to ask for a sleep study. The doctor refused me, even I showed the data from my machine. She told me that AHI 1.6 is very good number which means I have been treated very well by CPAP therapy, the reason it shows central apnea is because the leakage. (I do have problem with mouth leaking. I have tried chin strip, it helps sometimes. I have tried some full face masks, but haven't found any suitable for me. Recently, I was trying to train my mouth to close during sleep, I have got some progress.) In fact, I suppose that the machine has showed the right data, because sometimes when there weren't leaks, the events are still central apnea. In recent few weeks, I start to wake up at midnight, can't fall into sleep again. I feel terrible during daytime, I cannot concentrate when reading.
I have made an appointment with doctor on next monday. please give me some advices for how to convince the doctor to order me a sleep study. I guess that the reason why doctors didn't order me sleep study is because of money. In finland, KELA(The Social Insurance Institution of Finland) pays part of the bill, though I'm not a citizen of finland. To get a sleep study in private clinic would cost more than 300 euros which my insurance won't pay for(pre-existing condition). In public hospital, it cost me about 28 euros.
Thanks for reading and suffering my poor English.
Here are some pics of typical nights. Though there are leaks, but when there is no leak, CSA event still happens. I doubt that does the machine always(I mean in most of the times) interpret the apnea as CSA when leak from mouth?
The first sleep study report:
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Last edited by beylow on Sat Apr 21, 2012 2:17 pm, edited 9 times in total.
Re: Please help me to convince the doctor to get me sleep study
I think the fact that you feel lousy all the time should be enough to convince the doctor, but if it's not, is there no other clinic or doctor to see?
I was going to suggest you try a FF mask, but if you've tried some (which ones?) were they fitted properly? Maybe you need a different size, etc.... raising your pressure will make things worse though if you do have centrals or if you are mouth breathing.
A regular Cpap/Apap machine can't tell you if you have centrals, and you should be tested again, but ask your doctor if you can at least try out (rent) a machine that does address centrals (ASV or Vpap) for 1-2 weeks if only to prove that he's right). You can't just go on not getting treated!
I was going to suggest you try a FF mask, but if you've tried some (which ones?) were they fitted properly? Maybe you need a different size, etc.... raising your pressure will make things worse though if you do have centrals or if you are mouth breathing.
A regular Cpap/Apap machine can't tell you if you have centrals, and you should be tested again, but ask your doctor if you can at least try out (rent) a machine that does address centrals (ASV or Vpap) for 1-2 weeks if only to prove that he's right). You can't just go on not getting treated!
_________________
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Humidifier: IntelliPAP Integrated Heated Humidifier |
Re: Please help me to convince the doctor to get me sleep study
An AHI of 1.6...even if it were all "true" centrals is probably still within acceptable limits.
Remember the less than 5 AHI standard?
But you are still feeling crappy....
Have you thought about adding a overnight recording pulse oximeter to see if your oxygen levels are okay?
How many hours of sleep do you get? Do you wake up for any reason during those hours? If so..what reasons. Trouble getting to sleep? Trouble staying asleep?
Do you take any meds at all? If so what meds?
Have you had a complete physical work up which includes thyroid and Vitamin D levels?
All other possible culprits for feeling crappy evaluated?
Remember the less than 5 AHI standard?
But you are still feeling crappy....
Have you thought about adding a overnight recording pulse oximeter to see if your oxygen levels are okay?
How many hours of sleep do you get? Do you wake up for any reason during those hours? If so..what reasons. Trouble getting to sleep? Trouble staying asleep?
Do you take any meds at all? If so what meds?
Have you had a complete physical work up which includes thyroid and Vitamin D levels?
All other possible culprits for feeling crappy evaluated?
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Re: Please help me to convince the doctor to get me sleep study
Your AHI is low... very low for most of the people on this list.
What does the data say? What is your pressure?
Your in Finland. As an Aussie who has 4 very close Finnish friends.... are get you getting enough sun? Also don't dismiss depression.
Post your data. Let the people here let you know what they see. After that, get a SpO2 meter that can read all night. Compare that with the data from your CPAP and post data. Someone here can let you know.
A friend took her cat from Queensland to Helsinki. At least it was a very long haired cat but it was never in temps below 20 deg C (i.e. 68F)
What does the data say? What is your pressure?
Your in Finland. As an Aussie who has 4 very close Finnish friends.... are get you getting enough sun? Also don't dismiss depression.
Post your data. Let the people here let you know what they see. After that, get a SpO2 meter that can read all night. Compare that with the data from your CPAP and post data. Someone here can let you know.
A friend took her cat from Queensland to Helsinki. At least it was a very long haired cat but it was never in temps below 20 deg C (i.e. 68F)
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Re: Please help me to convince the doctor to get me sleep study
Sent you a PM.
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Re: Please help me to convince the doctor to get me sleep study
Ditto Tim on the sunlight. A colleague of mine moved from central California to here in the midwest, and soon started developing increasing fatigue. Eventually it was determined it was vitamin D deficiency. He moved from a place with almost daily full sunshine to a place that has full sun maybe 60% of the time. So ask the doctor to have your blood tested for vitamin D (I can't remember the specific test) along with the things Pugsy mentioned... look at thryroid levels, cortisol levels, and testosterone.
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Re: Please help me to convince the doctor to get me sleep study
Vitamin D3 is what needs to be tested.... ask for the 25hydroxy D3 test, and optimal results should be between 50-80. The Vitamin D Council has excellent information and resources: http://www.vitatmindcouncil.org
In addition, get your thyroid panel done.... TSH, Free T4, Free T3 and Reverse T3.
B 12 is another vitamin to take for energy.....
In addition, get your thyroid panel done.... TSH, Free T4, Free T3 and Reverse T3.
B 12 is another vitamin to take for energy.....
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Re: Please help me to convince the doctor to get me sleep study
Just as an observation - my sleep study results showed a total AHI index of 21.3 with 97 events per hour - considered severe by my neurologist. From the time the sleep tech put me on CPAP in that same study, my AHI has been less than 1.0 - every night since (18-months ago) it's around .2, and neuro considers me a very successful user of XPAP therapy.-tim wrote:Your AHI is low... very low for most of the people on this list.
What does the data say? What is your pressure?
Your in Finland. As an Aussie who has 4 very close Finnish friends.... are get you getting enough sun? Also don't dismiss depression.
Post your data. Let the people here let you know what they see. After that, get a SpO2 meter that can read all night. Compare that with the data from your CPAP and post data. Someone here can let you know.
A friend took her cat from Queensland to Helsinki. At least it was a very long haired cat but it was never in temps below 20 deg C (i.e. 68F)
Do I feel like leaping out of bed in the mornings? Do I feel totally refreshed? NO! Yes, I feel better, and don't get sleepy during the day any more, but at least I know I'm getting enough oxygen to ward off the horrible complications of untreated OSA.
Yimeng - I think you should find another doctor who will take your lethargy more seriously - with that AHI level every night, you obviously have something going on that your machine can't tell you. An oximeter would be a good purchase for your own reference.
Good luck and keep us informed of your progress.
Cheers,
xena
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Re: Please help me to convince the doctor to get me sleep study
Hi Julie. Thanks for your reply.Julie wrote:I think the fact that you feel lousy all the time should be enough to convince the doctor, but if it's not, is there no other clinic or doctor to see?
I was going to suggest you try a FF mask, but if you've tried some (which ones?) were they fitted properly? Maybe you need a different size, etc.... raising your pressure will make things worse though if you do have centrals or if you are mouth breathing.
A regular Cpap/Apap machine can't tell you if you have centrals, and you should be tested again, but ask your doctor if you can at least try out (rent) a machine that does address centrals (ASV or Vpap) for 1-2 weeks if only to prove that he's right). You can't just go on not getting treated!
Last time when I visit doctor, she refused to order me sleep study, even I've told her that I can't keep awake during lectures.
Well, I was visiting public hospital which cost about 28€ every time. Indeed, I can go to private clinic to order a sleep study, but that would cost more than 300€.
Tomorrow, I will call the hospital to ask if I can avoid to have the same doctor as last time.
In helsinki area, there is only one public hospital which they treat sleep disorders. I can get mask from that hospital for free. But they only provide 2 different kind of FF mask, neither fits me. I think mouth leak is not a problem for me, it is somehow under control as I'm training myself to close my mouth during sleep.
I'm currently using S9 which is able to distinguish between OSA and CSA. That's where I start to suspect that I have central apnea.
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Re: Please help me to convince the doctor to get me sleep study
Hi Pugsy. Thanks for you reply.Pugsy wrote:An AHI of 1.6...even if it were all "true" centrals is probably still within acceptable limits.
Remember the less than 5 AHI standard?
But you are still feeling crappy....
Have you thought about adding a overnight recording pulse oximeter to see if your oxygen levels are okay?
How many hours of sleep do you get? Do you wake up for any reason during those hours? If so..what reasons. Trouble getting to sleep? Trouble staying asleep?
Do you take any meds at all? If so what meds?
Have you had a complete physical work up which includes thyroid and Vitamin D levels?
All other possible culprits for feeling crappy evaluated?
I know that AHI under 5 is normal maybe theoretically. In my case, I do feel crappy. Several month ago, I have been using a recording pulse oximeter, but feels very uncomfortable with something on my wrist(CMS-50F). I cannot remember the exact number, I think I have several events the O2 desaturation under 90%.
Normally I sleep about 8 hours. Recently even 5 ~ 7 hours, because sometimes I wake up during the night and cannot fall into sleep. I'm not taking any medicine but Colostrum and Omega-3. No physical work up at all, I always find some excuses to not go to the gym.
I haven't find out any reason other than apnea which result the crappy daytime.
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Re: Please help me to convince the doctor to get me sleep study
Hi tim. Thanks for your reply. I will upload some pics.-tim wrote:Your AHI is low... very low for most of the people on this list.
What does the data say? What is your pressure?
Your in Finland. As an Aussie who has 4 very close Finnish friends.... are get you getting enough sun? Also don't dismiss depression.
Post your data. Let the people here let you know what they see. After that, get a SpO2 meter that can read all night. Compare that with the data from your CPAP and post data. Someone here can let you know.
A friend took her cat from Queensland to Helsinki. At least it was a very long haired cat but it was never in temps below 20 deg C (i.e. 68F)
I'm using auto mode. The range is between 8.4 to 17.
In winter it's hard to get sunshine, always cloudy or dark. In summer, I get too much sunshine.
I use to get a little depression few years ago. Later, I realized that when you are busy all the time and having a purpose to achieve, you really won't have time to feel depressed, you feel full-filled. That's my way to get rid of depression.
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Re: Please help me to convince the doctor to get me sleep study
Thanks Grand-PAP.Grand-PAP wrote:Sent you a PM.
Replied your PM.
_________________
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Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Last edited by beylow on Sun Apr 22, 2012 12:40 am, edited 1 time in total.
Re: Please help me to convince the doctor to get me sleep study
You could be waking up from the machine itself--8 to 17 is a pretty wide setting, and it forces the machines to "chase your apneas". The pressure changes could be what's disturbing your sleep.
If you can print out your data, we can help you narrow that range and you can see if that helps you sleep better and feel more rested.
If you can print out your data, we can help you narrow that range and you can see if that helps you sleep better and feel more rested.
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Don't Pay that Upcharge! http://tinyurl.com/2ck48rm
Re: Please help me to convince the doctor to get me sleep study
Thanks Janknitz.Janknitz wrote:You could be waking up from the machine itself--8 to 17 is a pretty wide setting, and it forces the machines to "chase your apneas". The pressure changes could be what's disturbing your sleep.
If you can print out your data, we can help you narrow that range and you can see if that helps you sleep better and feel more rested.
I used to have a narrow range of pressure between 10.4 to 12.8. It turns out that I feel uncomfortable to begin with 10.4 when I go to bed. I also used ramping, but I'm not sure how long does it take for me to fall into sleep, so that if the ramping is over before I fall into sleep, I start to feel uncomfortable, especially I feel the air blows into my stomach. Actually, I'm with narrow range, I still get that much CSA and crappy day.
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Re: Please help me to convince the doctor to get me sleep study
Thanks IndyDave and Emilia.
Normally, I eat lots of vegetables, and sometimes I use multi-vitamin pill. So, I'm not suppose to lack of vitamin.
Of course, it's a good suggestion, I will talk with doctor about this.
Normally, I eat lots of vegetables, and sometimes I use multi-vitamin pill. So, I'm not suppose to lack of vitamin.
Of course, it's a good suggestion, I will talk with doctor about this.
_________________
Mask: Mirage™ SoftGel Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |