Panic at thought of CPAP.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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robysue
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Re: Panic at thought of CPAP.

Post by robysue » Sat Feb 27, 2016 11:43 pm

Snoopchic wrote:I think I just feel taken advantage of since they didn't do the other test. If I knew the results, and they were severe, I wouldn't feel that way.
They didn't take advantage of you when they didn't do the second (daytime) test. What the lab did when they canceled the second test is part of a "differential diagnosis" process. A differential diagnosis is when a doctor (or team of doctors) is trying to decide which of several conditions/diseases is most likely the real cause for a patient's reported symptoms. In order to figure out which of the suspected conditions/diseases the real cause, the medical team runs tests in a specific order. If a particular test turns up positive, then any subsequent test is NOT run: The underlying disease has been identified and you start treating it.

Since the doc who ordered the sleep test originally scheduled you for a (potential) two part sleep test, it sounds like the doc thought you might have narcolepsy: The second (daytime) test is designed to diagnose narcolepsy. But narcolepsy, OSA, and a host of other sleep disorders all share many of the same symptoms, and among those common symptoms are excessive daytime sleepiness, excessive daytime napping, and the inability to get good, restorative sleep at night. So before a doc is going to diagnose anybody with narcolepsy, s/he needs to rule out other things like OSA, periodic limb movement disorder (PLMD), and a host of other sleep disorders that occur during the regular, night time sleep period. Hence if a doc suspects that a patient might have narcolepsy, the first thing that has to be done is the overnight sleep test, which is used to diagnose OSA, PLMD, and a whole slew of other sleep disorders. If any night time sleep disorder is found, there's no point in doing the test for narcolepsy: Until the newly discovered night time sleep disorder is properly treated, the daytime test (for narcolepsy) has a high chance of being what's called a "false positive"---i.e. the excessive daytime sleepiness caused by the night time sleep disorder can be severe enough to make it look like the patient has narcolepsy even though the patient does not actually have narcolepsy.

In other words, narcolepsy can only properly be diagnosed if the night time sleep is normal. Hence, the protocol for the second test to take place is that there is no evidence of night time sleep problems that could lead to the daytime symptoms that suggest narcolepsy. And your night time test turned up evidence of OSA. And that means your OSA has to be treated before a diagnostic test for narcolepsy can be run.

...I just hate that he doesn't want me to come to the apt until after they do the CPAP test with shoving stuff on my face If I knew everything first, I would feel like I could work with it. If he won't fax my results Monday, I feel like I will have to post pone the test. I need to know there is a true reason. I just don't trust anyone to just say it. I have to see it for myself. You guys have helped so much today! Thank you
It seems to be common practice to run the titration test as soon as possible after the diagnostic test turns something up. And then schedule a follow up either after the titration test or even a few weeks after PAP therapy has begun. I suspect the reason it is usually done this way is that most sleep docs want to get their OSA patients onto CPAP as soon as possible: There's the real hope that if patients start CPAP as soon as possible, then they'll start feeling better that much sooner. And the body will start repairing the damage done by years of untreated OSA that much sooner.

But I agree with you: It's not really fair to the patient to do it that way---the patient should be able to see the full results of their diagnostic test and ask the doc some questions before the titration test is set up. The one good thing I will say about my first sleep doc is that he did schedule an appointment between my diagnostic test and my titration test to go over my sleep study reports. But I didn't know enough then to force him to give me my own copy of the results that day. (I was also numb with finding out that my apnea was "moderate" rather than "mild".) And he didn't really give me much of a chance to ask many questions and I left that appointment with more unanswered questions than answered questions. And the doc tried to get me to sign a form allowing him to send my yet to be written script to the DME next door to his office. I knew enough to NOT sign that paper, and I'm glad I told him that I wanted to shop around for a DME of my choice and that I'd let his office know after the titration was done and I'd found a DME where they could send the script. He agreed to that, but he sure wasn't happy about it.

The fact that I had a consultation with the sleep doc after the diagnostic test and before the titration test did delay my titration test by a good two weeks. And the fact that I insisted on finding a DME that I wanted to work with delayed my starting CPAP for another 4 weeks after the titration study. That bugged the heck out of the sleep doc: His office was calling me on a daily basis asking me why I just wouldn't let them send the script to the place next door, which I knew would set me up with a brick. (I knew that because I'd called them and asked what kind of machine they'd set me up with.) It got so bad that hubby finally told them that if they didn't quit calling that I would find a different sleep doctor to prescribe my equipment. All told, I got my equipment 55 days after my diagnostic sleep study. That's considered a pretty significant delay, but I figured at the time that I'd been sleeping with the OSA for at least 3-5 years and it hadn't killed me yet and I wanted to make sure that I got the right equipment in order to maximize my chances of becoming a fully compliant full time CPAPer for the rest of my life.

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Snoopchic

Re: Panic at thought of CPAP.

Post by Snoopchic » Mon Feb 29, 2016 11:44 am

I just wanted to update that I cancelled my second (titration) sleep study that was scheduled for tonight. I refuse to go until they release my sleep study results. I feel even more that this is a scam now, since they refuse to send me the results. Now I feel even more stressed then before I'm supposed to see my sleep doctor tomorrow. And they told me they could tell me the results then. It's all I can do to not say I'll never go back, but I really want to see what they "decided" they saw. I can't find any proof anywhere that says sleep apnea really causes any issues. It all looks like a money making scam

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Re: Panic at thought of CPAP.

Post by WindCpap » Mon Feb 29, 2016 12:15 pm

For some people, getting used to the idea of cpap can be a little daunting. When I first scheduled my initial sleep study, I couldn't figure out why I was doing it since there was no way I would ever be able to use CPAP. I now use it every night, and there is no way I would want to sleep without it. I am the guy who had to order is pillow from Germany in order to get the exact right one.

Take some time to reconcile yourself to this. You have been living with it for a very long time, and rushing in to CPAP is probably not going to impact your long term health one way or another. The youtube videos I am linking to, really helped me. There was 8 weeks from my study until my diagnoses, and I really needed that much time to come to grips with the reality that I probably had sleep apnea. I actually left the doctor's office in tears because my titration wouldn't be for another 2 months.

https://www.youtube.com/watch?v=XvQqFXcMmxg
https://www.youtube.com/watch?v=9aAYdIktB3A

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Re: Panic at thought of CPAP.

Post by Julie » Mon Feb 29, 2016 12:18 pm

Hi, it is not a scam - if it were, the thousands of us here, some of whom at least are well educated medically and have long experience of the whole OSA/Cpap thing would not have gone on being scammed for so long... that's just nonsense. The fact is you personally don't yet understand very much about the issues yet, and are fighting back against the process and learning about it all, to your disadvantage - disadvantage yes, but not the way you believe. You must give people a chance to explain it all, must have some faith in your doctors, the lab, us, etc. You're cheating yourself now, and no one else is going to lose but you. Let us help, relax a bit and slow down... Roby Sue, if anyone, knows what she's talking about, never mind the rest of us, so stop trying to short circuit the process until you know more about everything. No one's scamming you - they're all too busy trying to help! You're not the only patient they have to deal with and have to write up reports for... and it all takes time.

IF, once you really have learned a lot more, you then decide it's a scam or whatever, you're free to not continue, but give your life and health a chance first!

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Re: Panic at thought of CPAP.

Post by chunkyfrog » Mon Feb 29, 2016 12:37 pm

No, it is not a scam. Apnea KILLS. Cpap works.
If your apnea is mostly obstructive, you could probably self titrate with an auto cpap.
But then somebody would be out the revenue from a titration that may be easily done
---if you are issued a machine that only costs a few bucks more than the brick they usually sell.
I agree that putting the titration study is best had AFTER your consultation.
Just believe that apnea is real; and cpap has made a world of difference for many of us.

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Re: Panic at thought of CPAP.

Post by Snoopchic » Mon Feb 29, 2016 12:53 pm

After I cancelled my titration study my doctor magically called me back. He said he thinks I really should go do it. I re set it up, but will still refuse a mask if told to put it on. I still can't stand anything near my face. I don't know what the point of it is if I'm going to refuse. I'm supposed to go see him tomorrow, don't know what to say when I go to that either :/ I just don't see how we can, as humans, all of a sudden not sleep at night!?! It's not logical. I deal in logic, and there is none to this. Anyway! I'll see how it goes tonight and tomorrow!

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Re: Panic at thought of CPAP.

Post by robysue » Mon Feb 29, 2016 12:54 pm

Snoopchic wrote:I just wanted to update that I cancelled my second (titration) sleep study that was scheduled for tonight. I refuse to go until they release my sleep study results.
This is not an unreasonable thing to do under the circumstances.
I feel even more that this is a scam now
CPAP is NOT a scam. And in-lab sleep tests are not scams. You just happen to have a lab with a bunch of receptionists (i.e. the people who answer the phones) who see their job as "protecting" the doctors from having to actually talk to people. That's a shame. But it doesn't mean sleep tests, OSA, and CPAP are shams.
I'm supposed to see my sleep doctor tomorrow. And they told me they could tell me the results then. It's all I can do to not say I'll never go back, but I really want to see what they "decided" they saw.
You have the right to a copy of your medical records. Let the doctor know that you want a copy of the full sleep study report for your records. Be polite but firm in your request. They typically run between 3 and 7 pages long, and the doc's office does have the right to charge you a minimal fee (usually up to about $1/page) for "processing" the report and getting it too you. The important part of the full sleep study report are the summary graphs that show exactly what kind of events were being scored and when those events occurred. The summary graphs also show you exactly what your sleep stage was all night long. These are important in order for you to understand your diagnosis.
I can't find any proof anywhere that says sleep apnea really causes any issues. It all looks like a money making scam
You are just not looking. CPAP is NOT a scam and untreated OSA leads to a tremendous amount of suffering in this country and a significant number of problems with co-morbid conditions.

In short: Having untreated OSA significantly raises the life time risk of many kinds of heart disease, stroke, and causing an automobile accident among other things. Untreated OSA may also cause high blood pressure, lead to (unexplained) weight gain, and increases the risk of type II diabetes. Untreated OSA typically causes the sufferer to have a large number of Quality of Life symptoms that start with severe or excessive daytime sleepiness and fatigue. People with untreated OSA are often exceptionally irritable because of the daytime sleepiness and many find it difficult to function at the level they want or need to. And over time, the OSA typically worsens and as it worsens, the daytime symptoms and their impact on the sufferer's life also grow

If you google the phrase consequences of untreated OSA, you'll get a lot of hits for scholarly articles about what kinds of issues untreated OSA can cause. Some that might be of interest to you include:

[http://www.sciencedirect.com/science/ar ... 1101911096]Comparison of the effects of sleep deprivation, alcohol and obstructive sleep apnoea (OSA) on simulated steering performance[/url] which shows that drivers with untreated OSA can be as impaired as drunk drivers.

Reduction in motor vehicle collisions following treatment of sleep apnoea with nasal CPAP which shows that successfully treating OSA with CPAP reduces an OSA sufferer's risk of causing a car crash drops to normal. It also cites data that shows that people with untreated OSA have a statistically significant higher risk of causing a car crash while driving.

Obstructive sleep apnoea and its cardio ... nsequences reviews the connections between untreated OSA and cardiovascular disease. Untreated OSA is implicated as a contributing factor in a large number cardiovascular diseases. The paper also finds that CPAP is an effective way to reduce the chances that someone with OSA develops cardiovascular disease as well as making it easier to treat a person with both OSA and cardiovascular disease.

http://hdla.cl/wp-content/uploads/2014/ ... l-Cost.pdf which shows the life-time costs of treating a person with undiagnosed OSA is dramatically greater than the costs of treating a person without OSA. The additional costs are caused by treating conditions that are either caused (directly) by the untreated OSA or are aggravated by the untreated OSA.

Obstructive Sleep Apnea and the Recurrence of Atrial Fibrillation shows that AF patients with untreated OSA have a much higher risk of having recurrent problems with AF---i.e. successful CPAP therapy makes it easier to treat AF in people with OSA.

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Re: Panic at thought of CPAP.

Post by robysue » Mon Feb 29, 2016 12:58 pm

Snoopchic wrote:After I cancelled my titration study my doctor magically called me back. He said he thinks I really should go do it. I re set it up, but will still refuse a mask if told to put it on.
The whole point of the titration test is to put the mask on your face and have the tech watch what happens. As you have events in your sleep, the tech adjusts the pressure to find a starting point for the pressure to prescribe for your CPAP therapy.

If you are not willing to even try to put a mask on your face, you are wasting your time and the tech's time.
I still can't stand anything near my face. I don't know what the point of it is if I'm going to refuse. I'm supposed to go see him tomorrow, don't know what to say when I go to that either
You absolutely MUST get some councilling for your severe anxiety. It is NOT normal.

I have to go teach a Geometry class. I'll write more when I'm done.

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Re: Panic at thought of CPAP.

Post by jilliansue » Mon Feb 29, 2016 1:28 pm

Hi! You have gotten lots of good suggestions here already. I second the idea of meditation and/or a cognitive/behavioral therapist, as well as anti-anxiety medication. I would like to add that hypnotherapy can help greatly with this sort of issue, and in a short period of time.

Good luck!!
Jill

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Re: Panic at thought of CPAP.

Post by Julie » Mon Feb 29, 2016 2:08 pm

Humans (and animals) are all different, like snowflakes, however much we may be similar. And the logic you talked about doesn't apply because of that... we're not machines, no engines or motors to calibrate, and what works for one may not work for another, but medicine that's been 'vetted' by doctors and scientists is at least tested until it's shown to help many people without killing them outright (science isn't perfect yet and may never be until humans become machines). But at least we no longer expect only mumbo jumbo and toads to cure us either. At least there are things that might help you, so try to meet them partway and stop telling yourself you can't... start doing the opposite.
Last edited by Julie on Mon Feb 29, 2016 3:31 pm, edited 1 time in total.

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Re: Panic at thought of CPAP.

Post by WindCpap » Mon Feb 29, 2016 2:08 pm

My opinion is that the you should call your doctor and tell him you need a little more processing time. There is not a lot of point in doing a titration if you will be fighting the whole time. With a little research and time, you will come around.

I would disagree with those who are saying your anxiety and denial are not normal. I had similar issues and worked through them but it takes a bit of time. Perhaps you can schedule your titration for a month or two from now and give yourself the time to get over the denial.

CPAP really does seam 100 times worse in your mind than it really is.

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Re: Panic at thought of CPAP.

Post by dvejr » Mon Feb 29, 2016 2:18 pm

WindCpap wrote: I would disagree with those who are saying your anxiety and denial are not normal. I had similar issues and worked through them but it takes a bit of time.
The OP has described her irrational terror at anything touching her face repeatedly and precisely. Her emotional condition is NOT "normal". I agree with those who think her crippling anxiety needs to be dealt with immediately, and before trying a polysomnogram.

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Re: Panic at thought of CPAP.

Post by Wulfman... » Mon Feb 29, 2016 2:26 pm

Snoopchic wrote:After I cancelled my titration study my doctor magically called me back. He said he thinks I really should go do it. I re set it up, but will still refuse a mask if told to put it on. I still can't stand anything near my face. I don't know what the point of it is if I'm going to refuse. I'm supposed to go see him tomorrow, don't know what to say when I go to that either :/ I just don't see how we can, as humans, all of a sudden not sleep at night!?! It's not logical. I deal in logic, and there is none to this. Anyway! I'll see how it goes tonight and tomorrow!
You're right.
It's not "logical" that you would allow your health to deteriorate when your daughter and family will need you in the future.

Do some Googling and research on "Obstructive Sleep Apnea" and become educated with what it is, what it does and how it WILL affect your health. It's definitely NOT a scam. You need to figure out if they have a mask that is very minimal on your face......there are nasal pillows that only touch your nares, so it's not like you would have to use a full face mask.


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Re: Panic at thought of CPAP.

Post by WindCpap » Mon Feb 29, 2016 2:53 pm

dvejr wrote:
WindCpap wrote: I would disagree with those who are saying your anxiety and denial are not normal. I had similar issues and worked through them but it takes a bit of time.
The OP has described her irrational terror at anything touching her face repeatedly and precisely. Her emotional condition is NOT "normal". I agree with those who think her crippling anxiety needs to be dealt with immediately, and before trying a polysomnogram.
The OP is describing a fairly common case of claustrophobia. She is still in the denial phase and trying the "I am the exception to the rule" defense. To the OP. Please forgive me for speaking about you in the third person.

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Re: Panic at thought of CPAP.

Post by Wulfman... » Mon Feb 29, 2016 3:21 pm

"The Seven Stages of CPAP" by forum member Mike Moran

viewtopic.php?f=1&t=6093&p=55459&hilit=+stages#p55459


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