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yogini

Sleep Apnea diagnosis

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A couple of weeks ago I was diagnosed with moderate sleep apnea.  I usually wake up once in the middle of the night and that explains why.  I was given the option of getting a mouth guard or a CPAP.  I can also go to a sleep doctor which I might try to do next year.  Because of the holiday I haven't had a chance to research what this means. Just wondering if anyone else has this and what treatments you may follow.  My dyautonomia is largely improved.  I'm wondering if I treat this if I will feel even better and closer to normal.

Edited by yogini

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I likely have it.  I do know a couple of friends that have heart disease and credit the machine with helping them, in one case significantly. His ventricle actually is getting smaller.  

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My hubby has "mild" sleep apnea. His event were 14.9. 15 makes moderate. He has a cpap. He hates it. He actually hasn't used it in about a year because he sleeps so badly on it. He is due to go back though and try the mouth guard thing. 

His sister also had it. Really bad. They took out her tonsils and adenoids and she no longer has sleep apnea. 

People I know that use the machine are about 50/50. Some love it. Some hate it. Medicaid usually pays on the machine for a year and then it is yours. But you have to use it that first year or they will stop paying on it. Thought that was an interesting insurance quirk. Be close and friendly with your medical supply store though. In the beginning it may be rough trying to find a good fit for the mask. 

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I also have moderate sleep apnea.  I have 21 events per night and my oxygen levels are always under 88 when I sleep. I tried the machine and just put it under the bed. It's been there for 2 years now. Can you tell me how your friends heart size became smaller. I also have an enlarged heart and should be using the machine, but with 9 medications, insulin injections, and all kinds of other issues it would be for me like living inside a hospital 24/7. I have dreams where I'm choking and then just snap myself awake. I also have dreams where I'm not breathing and I can hear someone call my name and then it wakes me up. I think those are long apneas where I am choking in my sleep. I have some central apneas too. My blockages are severe a in I have to be on the highest pressure setting they have (and you can only get the hither pressure setting on a BIPAP machine) and it was set up to force me to breathe whenever my brain would not send a signal for me to breathe. I hate the d*** thing. But once the ticker starts to suffer from lack of oxygen for many years, then it becomes a serious problem.  I would try and use the machine as it might make you feel better and help with your overall health. I can handle the lower pressures like 25-16, but when that thing hits 21, it's too much. It's like having a vacuum cleaner on my face. 

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5 hours ago, blizzard2014 said:

I also have moderate sleep apnea.  I have 21 events per night and my oxygen levels are always under 88 when I sleep. I tried the machine and just put it under the bed. It's been there for 2 years now. Can you tell me how your friends heart size became smaller. I also have an enlarged heart and should be using the machine, but with 9 medications, insulin injections, and all kinds of other issues it would be for me like living inside a hospital 24/7. I have dreams where I'm choking and then just snap myself awake. I also have dreams where I'm not breathing and I can hear someone call my name and then it wakes me up. I think those are long apneas where I am choking in my sleep. I have some central apneas too. My blockages are severe a in I have to be on the highest pressure setting they have (and you can only get the hither pressure setting on a BIPAP machine) and it was set up to force me to breathe whenever my brain would not send a signal for me to breathe. I hate the d*** thing. But once the ticker starts to suffer from lack of oxygen for many years, then it becomes a serious problem.  I would try and use the machine as it might make you feel better and help with your overall health. I can handle the lower pressures like 25-16, but when that thing hits 21, it's too much. It's like having a vacuum cleaner on my face. 

Do you use the adaptive pressure or straight pressure? Originally they had my hubby on the adaptive. The doctors thought maybe straight pressure would help the feeling of choking. But he never tried. A friend of mine uses the straight pressure and he said it is much better. 

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My teenage son has sleep apnea, POTS, and EDS. Sleep apnea was the first thing his doctors figured out and treating the sleep apnea has been life changing for him. My son had mild to moderate sleep apnea (AHI 14.8). Most concerning to me was that my son was also diagnosed with hypoxia, his O2 dropped the 70s and was under 88 for over an hour while sleeping. Like most on this forum figuring out my son’s health issues was an uphill battle. By the time we got my son’s sleep apnea diagnosis he had been struggling so much in school that we had to get him designed home bound midway thru the school year and continue his educate at home. Because my son was being educated at home I could see the tremendous improvement in his cognitive abilities once he started using CPAP.  It wasn’t easy to for him to get used to the CPAP machine, but my son stuck with it because it helped him so much. My mom also has sleep apnea, her’s is severe (AHI 64 during REM). My mom loved her CPAP machine from the moment she put the mask on, with CPAP splinting her airway open for the first time in years my mom was able to sleep and wake feeling like she was well rested. My mom also has high blood pressure, which has improved significantly since using CPAP.

Over the long term sleep apnea can cause a whole host of health problems including cardiovascular issues. Sleep apnea can also keep you from getting a restful nights sleep. Although most sleep apnea patients aren’t aware of it when you have an apnea your brain is triggered to wake up to breathe, these frequent awakenings often prevent people from getting enough deep sleep. CPAP is the gold standard treatment for sleep apnea. Unfortunately in sleep medicine all the money is made up front with expensive sleep studies, the follow thru care after CPAP is prescribed is more often than not inadequate. I believe many more patients would be successful with CPAP if they were given better follow up care. Simple things like a different mask, changes in pressure, or heated hose can often make CPAP comfortable for patients. There are some great online forums that really helped me problem solve some of the problems my mom and son experienced with CPAP (I like apnea board and CPAP talk).

 

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1 hour ago, Colomom said:

My teenage son has sleep apnea, POTS, and EDS. Sleep apnea was the first thing his doctors figured out and treating the sleep apnea has been life changing for him. My son had mild to moderate sleep apnea (AHI 14.8). Most concerning to me was that my son was also diagnosed with hypoxia, his O2 dropped the 70s and was under 88 for over an hour while sleeping. Like most on this forum figuring out my son’s health issues was an uphill battle. By the time we got my son’s sleep apnea diagnosis he had been struggling so much in school that we had to get him designed home bound midway thru the school year and continue his educate at home. Because my son was being educated at home I could see the tremendous improvement in his cognitive abilities once he started using CPAP.  It wasn’t easy to for him to get used to the CPAP machine, but my son stuck with it because it helped him so much. My mom also has sleep apnea, her’s is severe (AHI 64 during REM). My mom loved her CPAP machine from the moment she put the mask on, with CPAP splinting her airway open for the first time in years my mom was able to sleep and wake feeling like she was well rested. My mom also has high blood pressure, which has improved significantly since using CPAP.

Over the long term sleep apnea can cause a whole host of health problems including cardiovascular issues. Sleep apnea can also keep you from getting a restful nights sleep. Although most sleep apnea patients aren’t aware of it when you have an apnea your brain is triggered to wake up to breathe, these frequent awakenings often prevent people from getting enough deep sleep. CPAP is the gold standard treatment for sleep apnea. Unfortunately in sleep medicine all the money is made up front with expensive sleep studies, the follow thru care after CPAP is prescribed is more often than not inadequate. I believe many more patients would be successful with CPAP if they were given better follow up care. Simple things like a different mask, changes in pressure, or heated hose can often make CPAP comfortable for patients. There are some great online forums that really helped me problem solve some of the problems my mom and son experienced with CPAP (I like apnea board and CPAP talk).

 

What is a heated hose?

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16 minutes ago, StayAtHomeMom said:

What is a heated hose?

Most CPAP machines have a humidifier. When the moist air travels from the machine thru the long hose that connects the machine to the mask the moisture in the air can condense causing rainout (water in the mask). A heated hose prevents rainout because if the air is kept warm the water vapor doesn’t condense. I believe that most machines are set up to accommodate either a heated or regular hose. The heated hose is more expensive, but a doctor can specify a heated hose in the persciption so that insurance will cover the extra cost. Alternatively you can by a fleece hose cover of Amazon for about $10 (not quite as good as the heated hose but works good for preventing rain out).

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35 minutes ago, Colomom said:

Most CPAP machines have a humidifier. When the moist air travels from the machine thru the long hose that connects the machine to the mask the moisture in the air can condense causing rainout (water in the mask). A heated hose prevents rainout because if the air is kept warm the water vapor doesn’t condense. I believe that most machines are set up to accommodate either a heated or regular hose. The heated hose is more expensive, but a doctor can specify a heated hose in the persciption so that insurance will cover the extra cost. Alternatively you can by a fleece hose cover of Amazon for about $10 (not quite as good as the heated hose but works good for preventing rain out).

That's kind of neat. Didn't know about that. 

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Thanks everyone.  My doctor said most patients get the CPAP and don't bother using it.  My doctor suggested getting  mouth guard - I grind my teeth and needed the mouth guard anyway, and when it is designed a special way it stops sleep apnea.  I think there are other ways of treating too.  I need to sit down and do some research.  Dysautonomia is about not enough oxygen to the brain.  When I am tired my dysautonomia is worse, so I think treating this can only help.

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If I were in your shoes I would consult with a sleep doctor/ pulmonologist  before making any final decision on treatment. There are a number of drawbacks with mouth guards to consider. First of all they are expensive and aren’t always covered by insurance. The generic buy them online guards don’t work, and ones purchased thru a dentist are expensive. My brother has mild sleep apnea and looked into having his dentist make a mouth guard, the dentist quoted him $2500 and his insurance would not have covered a penny of the cost.  Mouth guards used to treat sleep apnea often work by opening up your mouth by pushing your teeth forward which can create problems with your teeth and jaw. The other major drawback with a mouth guard is that it is not as nearly as effective as CPAP at preventing sleep breathing events and the only way to know if the mouth guard is working is to get another sleep study. My son’s APAP machine records data on his breathing when he uses the machine,so it’s easy to evaluate treatment and make changes when warranted.

You don’t have much to loose by trying CPAP first. The way it works is that for about the first year your insurance technically rents the machine (instead of paying the entire cost of the machine up front they pay monthly rental payments). Once you receive the machine you have 90 days to become “compliant” which is defined as using the machine a minimum of 4 hours a night for 21 of 30 consecutive days. If you can’t tolerate CPAP and don’t use the machine they will take it back and the rental is ended. If you do use the machine the “rental” payments are rolled over into a purchasing deal and after about a year you will own the machine.

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1 hour ago, Colomom said:

If I were in your shoes I would consult with a sleep doctor/ pulmonologist  before making any final decision on treatment. There are a number of drawbacks with mouth guards to consider. First of all they are expensive and aren’t always covered by insurance. The generic buy them online guards don’t work, and ones purchased thru a dentist are expensive. My brother has mild sleep apnea and looked into having his dentist make a mouth guard, the dentist quoted him $2500 and his insurance would not have covered a penny of the cost.  Mouth guards used to treat sleep apnea often work by opening up your mouth by pushing your teeth forward which can create problems with your teeth and jaw. The other major drawback with a mouth guard is that it is not as nearly as effective as CPAP at preventing sleep breathing events and the only way to know if the mouth guard is working is to get another sleep study. My son’s APAP machine records data on his breathing when he uses the machine,so it’s easy to evaluate treatment and make changes when warranted.

You don’t have much to loose by trying CPAP first. The way it works is that for about the first year your insurance technically rents the machine (instead of paying the entire cost of the machine up front they pay monthly rental payments). Once you receive the machine you have 90 days to become “compliant” which is defined as using the machine a minimum of 4 hours a night for 21 of 30 consecutive days. If you can’t tolerate CPAP and don’t use the machine they will take it back and the rental is ended. If you do use the machine the “rental” payments are rolled over into a purchasing deal and after about a year you will own the machine.

I needed the mouth guard anyway for grinding my teeth.   My dental insurance rejected coverage when it was submitted earlier this year, so I was going to use my flexible spending account for it next year.  Now that I got the prescription I will try to submit under  health  insurance. The cost without insurance is $750, which isn't that bad anyway and with FSA, it's 1/2 that, and it will kill two birds with one stone.  I think everyone's insurance works differently for the CPAP.  I have decent insurance so I think it would be covered, but I am not in a rush.  I just have too much going on through the holidays so will do some research and decide in the new year.

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9 hours ago, StayAtHomeMom said:

Do you use the adaptive pressure or straight pressure? Originally they had my hubby on the adaptive. The doctors thought maybe straight pressure would help the feeling of choking. But he never tried. A friend of mine uses the straight pressure and he said it is much better. 

I have a ramp up feature that starts low and goes to full pressure in 45 minutes. The only problem is that even if I am exhausted to the point of drunkenness, as soon as the pressure setting goes high, it wires me up like I'm on crack. I can't sleep unless they give me meds and the sleeping meds only keep me asleep with the mask on for maybe 3 hours at best and then I wake up and take the thing off. I know I need to start using this, but as some have stated I had very bad follow up from doc's and also from the medical device company so I became extremely frustrated and dropped the sleep doctor. The doc said lowering the pressure would not work and he is right. I saw my titration study. All events continued until the pressure hit 21. Maybe the pressure was 24, I don't remember if it goes that high. They had to switch me to a BIPAP machine and higher pressure half way into the titration study. My throat has a lot of resistance. 

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31 minutes ago, blizzard2014 said:

I have a ramp up feature that starts low and goes to full pressure in 45 minutes. The only problem is that even if I am exhausted to the point of drunkenness, as soon as the pressure setting goes high, it wires me up like I'm on crack. I can't sleep unless they give me meds and the sleeping meds only keep me asleep with the mask on for maybe 3 hours at best and then I wake up and take the thing off. I know I need to start using this, but as some have stated I had very bad follow up from doc's and also from the medical device company so I became extremely frustrated and dropped the sleep doctor. The doc said lowering the pressure would not work and he is right. I saw my titration study. All events continued until the pressure hit 21. Maybe the pressure was 24, I don't remember if it goes that high. They had to switch me to a BIPAP machine and higher pressure half way into the titration study. My throat has a lot of resistance. 

I would see if they would be willing to turn off the "ramp up feature". That was my hubby's next step. He kept pulling his off in his sleep because he could breath. 

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Colomom, I'm on those forums too! Great advice.

 

I have a CPAP and have had great difficulty dialing everything in-mostly mask fit but other issues too. I did like the airway splinting from the first night, and could see that this would help me. My sleep is still bad but I don't have the horrible events waking me often like I did before CPAP. For me, it was well worth persisting for years and trying more tweaks to get it right. The forums helped with this. 

 

With these modern machines, you basically have a sleep study every night you use them, which is pretty awesome. My sleep apnea is gone with this therapy-I average less than 1 event per hour while on the machine, and my pressure is only at 6. It's silent and the exhalation relief makes it pretty comfortable. My asthma has improved a ton since I started using this-side benefit!

 

I hoped this would be a magic bullet that'd fix all of my problems, but it still definitely benefits my life.

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My dad was given the choice of losing weight or using a cpap.  He gave the cpap back after one night and worked at losing weight instead (which did decrease is snoring).

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