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At What Point Is CPAP Ruled A Failure?
Hi! I am a 55 year old Grandmother of eight. I was officially diagnosed with severe sleep apnea over 25 years ago. But - Now that I know the symptoms I can readily see that I had sleep apnea as young as TWO years old. I know this because my father used to tease me unmercifully about how bad I snored as young as 2. I suffered through my entire childhood being ridiculed because I could NOT stay awake in class. Not to mention screaming nightmares, too numerous to count. I could go on and on with n entire litany of symptoms - I had them all but fifty years ago Sleep Apnea was unheard of. Now there are now rumors going around suggesting that SIDS - Sudden Infant Death Syndrom, is sleep apnea in a newborn whose brain is not yet mature enough to rouse the baby from an apnic incident.
Anyway, I have been on a self-titrating machine for over three years now. Fisher-Pakayl, I think, with a full face mask. I bought an oximeter finger probe to monitor my oxygen levels at night. I am averaging 119 events every night where my oxygen levels drop to below 86. And at least twice a night it is plunging to below 60.
I have already had 2 different throat surgeries that were basically worthless including the uvppp or whatever it's called.
I once went to an Orthodontist who told me I had the largest soft pallet of ANY of the THOUSANDS of mouths he had EVER examined and he had been in practice for over 48 years. He assured me this was a congenital defect and that no orthodontic device on the planet was going to fix it.
My CPAP machine is set with a range of 4 - 20. It wakes me up EVERY night blasting air out from under my mask.
After wearing this God-awful torture device for 25 years, the straps have literally flattened my facial features and distorted the shape of my skull. I can NOT get them any tighter!
Basically, I have had it! I am researching tracheostomys and consider there to be no other alternatives available unless one of you good folks could educate me as to what I am doing wrong. All input is valued and appreciated. Thanks for taking the time to read this. Kate.
Views: 926
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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A range of 4-20cm is not going to fix anything. Your sleep doc is failing you not your treatment. I suggest you find a new doc and start over.
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Permalink Reply by 99 on
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you need to strengthen your throat muscles it is a two to three years project at the earliest as it has taken years to arrive at where you are today
i take rock salt but carefully watch my blood pressure it is a very slow process
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Permalink Reply by Ernestine Webster on
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rock salt ? what is that suppose to do ? after having been treated for high blood pressure for over 40 years, since my late 20's i finally got a handle on my blood pressure since i have been n cpap for 8 months even though i do not sleep very well , could you please explain what rock salt is suppose to do , this is a new one .
99 said:you need to strengthen your throat muscles it is a two to three years project at the earliest as it has taken years to arrive at where you are today
i take rock salt but carefully watch my blood pressure it is a very slow process
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As I said, I have already had two failed surgeries. If 20cm makes my mask leak horribly, anything higher is just going to make it worse. I just don't think CPAP is a viable solution for me anymore. And as for strengthening my throat muscles with rock salt.....??? Would you tell that to a two year old? I seriously doubt I had throat muscle problems at the age of two. But thanks anyway.
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Apnea is a neuro-muscular problem. So if you snored at 2 then most likely you did have some airway, tongue, mouth size, or throat muscle issues. These problems would have gotten worse as you got older. It is possible that CPAP is not a viable solution for you. Unfortunately there is no way for you to know because your machine is not set up to be conducive to healthy sleep. An auto-pap range of 4-20cm is an exploratory setting. Meaning the machine is constantly adjusting and searching for your required pressure. In order for the machine to adjust from one pressure to the next you must have an apneac event of some sort. It could take the machine anywhere from 2 hours to the entire night to get to the required pressure. Thus you may never achieve the benefits at this range. It is also known that the algorithm used for these self adjustments will count things such as swallowing, moving, or just puases in your breathing patterns as events. This could cause the machine to raise the pressure higher than needed and interfere with your sleep as well. Lastly the pressure changes themselves could be interfering with your sleep.
I suggest you talk to your doc about a REAL titration study to assess your actual PAP needs.
RockRpsgt
Kate said:As I said, I have already had two failed surgeries. If 20cm makes my mask leak horribly, anything higher is just going to make it worse. I just don't think CPAP is a viable solution for me anymore. And as for strengthening my throat muscles with rock salt.....??? Would you tell that to a two year old? I seriously doubt I had throat muscle problems at the age of two. But thanks anyway.
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normal salt is poison but everybody needs salt
do you remember the old block salt of the 1950-60s these had no additives then came along free running salt, which is poison and were told to cut down to two grams a day max
well since that time health problems have increased across the board and in various guises including sleep apnea
salt is non soluble and excess should be excreted out provided there is no medical reason not to do so, some times medication interferes and we lose more salt through excretion
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Permalink Reply by Mary Z on
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Sounds like CPAP is failing you if you're using it all night, every night and still having as many events as you're having. It is not working for me ( after nearly four years) so I did a trial of ASV in the sleep lab. Don't know the results, yet. ASV may be an optiuon for you. My mask is moving my bottom teeth around so I don't doubt a change in facial features is inevitable for some of us.
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Yes. I'm at 100% compliance. what is ASV Mary? Where my mask hits just below my lower lip, it is pushing in my teeth, too. I've been wearing this thing for 25 years.
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Mary she is on auto-pap 4-20cm. PAP is not failing her. The sleep team is failing her.
Mary Z said:Sounds like CPAP is failing you if you're using it all night, every night and still having as many events as you're having. It is not working for me ( after nearly four years) so I did a trial of ASV in the sleep lab. Don't know the results, yet. ASV may be an optiuon for you. My mask is moving my bottom teeth around so I don't doubt a change in facial features is inevitable for some of us.
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That's why I am seriously considering a tracheostomy. I am soo fed up with the thousands and thousands of dollars these crappy doctors have bilked from both me and my insurance company back when I used to have insurance. Once sleep apnea became the
"diagnosis de jour " Suddenly every GP out there wanted a piece of the pie, whether they were qualified or not. I'm with you on this one.
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