Alternitaves

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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robysue
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Re: Alternitaves

Post by robysue » Tue Apr 26, 2011 10:47 am

We have:
johnnyd wrote:The dmv got involved after I nodded off for a few seconds while driving on an interstate, and crashed a van. I had been working very hard for a while with out resting and did not have the endurance I needed.
and:
johnnyd wrote:
LSAT wrote:Keep working on the CPAP...it takes time and a POSITIVE ATTITUDE. Next time you might kill someone (or yourself).
I almost killed myself while using the cpap. I burned a hole in my arm while working due to drowsyness. Does that sound safe? This sounds like one of those the cure is worse than the disease (at least to me)
I say this as someone who has had an extremely difficult time adjusting to the mask and for the first 4 months or so felt SIGNIFICANTLY worse than before starting CPAP and who NEVER had any problems with "driving while sleepy" until AFTER I started using the CPAP:

1) I understand how and why you feel as though the cure (CPAP) is worse than the disease. But you have NOW had a MAJOR accident that the DMV and your car insurance company will say is due to your UNTREATED sleep apnea. Hence the requirement that you obtain appropriate treatment: What documentation is the DMV wanting? A doctor's signature that you are being effectively treated for your OSA? In that case, you are asking for ways to convince your doctor that there's an effective way to treat your OSA that does not require CPAP. And that requires both you and your doctor to know exactly what the OSA diagnosis was: What was the AHI? What were the desats? How badly fractured was the sleep? So you have to start dealing with the DMV requirement by digging up those old medical records OR requesting your current PCP to refer you for a new set of sleep studies. Personally, I'd just request a new sleep study myself and start over with CURRENT information about how bad the apnea is NOW. And be aware: Until YOU know whether your apnea is mild, moderate, or severe, you have NO WAY of knowing what kind of treatment will satisfy the DMV. And you and your doc will have NO IDEA whether there are *any* treatments other than xPAP (and tracheotomy) that are medically accepted as effective for the severity of your particular apnea. And if your apnea is moderate-to-severe and the doc says "CPAP is the only effective therapy other than a tracheotomy", the DMV will insist on CPAP or the trach.

2) It sounds as though the last time around you got NO support from your sleep doctor in making the CPAP work. I honestly believe that most sleep docs make this assumption that MOST OSA patients will (magically) be able to adapt to CPAP within a few weeks if only they use the machine every single night. And when you don't, they don't seem to be able to handle it. And in my own case, I've occasionally felt as if I (as the patient) have been "blamed" for not adjusting even though I've been compliant. I've been fortunate to find a quality PA (who works for a crass, shallow doc) who has at least listened (most of the time) to my tales of how badly my daytime functioning has deteriorated on xPAP and has consistently come up with things for me to try. Without her help and the help from the people on this forum, I would not still be using xPAP---it has simply been way too disrupting to my daily life and there has been way too little (immediate) benefit. Some five or six months into xPAP, I have noticed that I don't wake up with as much joint pain as I used to, but that's hardly the major "I have my life back" response that many here have. So since you have one disastrous attempt attempt at adjusting to CPAP under your belt, it will be CRITICAL for you to build as strong of a support system as you possibly can before you start on CPAP again.

3) IF (more likely WHEN) you have to start CPAP again to satisfy the DMV, be very proactive in insisting that the sleep doctor (or his PAs or nurse practitioners) be very involved in helping you solve the daytime drowsiness that STARTS when you go back on CPAP. Don't simply allow them to tell you "It takes time:" In the initial meeting with the sleep doctor go through the whole story of exactly what happened when you seriously burned your arm at work due to drowsiness the last time you tried to use CPAP. As soon as daytime drowsiness becomes an issue, insist on meeting with the doctor---tell the receptionist that it is an emergency (because it is) and that you need the doctor to call you back. That you cannot risk injuring yourself or others on the job because of the daytime drowsiness that was NOT there before CPAP but now is there.
johnnyd wrote:archangle: I am not a commecial driver, but have to travel alot for work. This happened in NY state.
Do you live in NY or were you out-of-state? If you do live in NY, where? If we know the location (even broadly), there may be some people who can make decent recommendations of a better sleep doc than you saw the last time around. And depending on the location, you might also be able to find a decent in-person patient support group. Or not. But at least you'd know.
P.S. is it weird that I would yell "GAS, GAS, GAS" before I strapped the mask on?
I'd not describe it as weird per se. Anxiety issues, perhaps? An attempt at morbid humor, perhaps? Or simply you own way of (not) coping with the diagnosis and the necessity of doing the hard work that some of us have to go through to deal with this (awful) therapy that seems like a life sentence at times?

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robysue
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Re: Alternitaves

Post by robysue » Tue Apr 26, 2011 10:59 am

johnnyd wrote: I would put on my mask when I started feeling drowsy, the problem was, after I would finally fall asleep (2 to 3 hours later, sometimes more) at some point in the night I would violently remove the mask from my face, (i would often wake up with the cpap mask still working on the floor with no idea i had removed it during the night.) I never woke up with the mask on me.
Sounds to me like the CPAP triggered a MAJOR case of insomnia in you. Did you ever ask the sleep doctor's office for SPECIFIC help in dealing with the INSOMNIA? Insomnia has been a MAJOR issue for me and I've written at length here about my trials and tribulations. It can be solved, but it takes some time and effort.
The other problem was i was way more tired during the day then i was before i used the treatment. I conveyed this to my sleep doctor, he told me to just keep trying.
In my humble opinion, the CPAP-induced insomnia MAY have been a major factor in why you became way more tired during the day after you started CPAP. That has been part (not all) of the reason I suffered a major crash-and-burn during the first three to four months on xPAP. At the end of my third month of CPAP therapy, I admitted to the PA the (bigger) problem was now the insomnia and she started working with me on taming the insomnia through behavioral therapy. Now that the insomnia monster is finally being tamed, things have been slowly improving. But all too often sleep docs do just say "give it more time". *sigh*
After I almost electrocuted myself at work, I stopped using the machine and felt ten times better. So there's my history. Now, does anyone know any alternatives to this treatment. Thanks
How long did you actually TRY to make the CPAP work before the accident at work? A week? A month? Two months? Six months? It's important to know just how long you stuck with therapy so that we on the forum have an idea of whether you had the time to sort out all the issues with adjusting to CPAP or not. It's one thing if you used the machine every night for five or six months; it's another thing entirely if you only used the machine a week or two.

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Janknitz
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Re: Alternitaves

Post by Janknitz » Tue Apr 26, 2011 11:58 am

I accutally gave the machine back to the doctor. ( he was lucky I actually walked out of his office and was not escorted out in silver bracelets).
OK, so you had a lousy doctor (welcome to the club!). So now what does the state require in order to get your driving license issue cleared up?
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robysue
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Re: Alternitaves

Post by robysue » Tue Apr 26, 2011 2:35 pm

A quick search of the NYS DMV web pages shows this link: http://www.nysdmv.com/license.htm#drivermed . The web page seems to indicate that a physician, a police officer, or a concerned family member or neighbor can all file a form with the state requesting that the DMV schedule a re-examination for the driver, or an evaluation interview with a license examiner. The DMV supposedly decides whether to act on each case independently. My guess is that in this case, the police that responded to the accident made the request since the cause of the accident was falling asleep at the wheel.

For physician-reported problems, the web page indicates "The DMV can require that the physician certify again in the future that the condition is controlled and not dangerous. If the DMV does not receive the required certification, the DMV can suspend the driver license until it receives the certification." My guess is that in cases reported by police officers and concerned citizens, the DMV can still require a physician to certify the condition is controlled and not dangerous.

I wonder what documentation johnnyd has been asked to provide.

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archangle
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Re: Alternitaves

Post by archangle » Tue Apr 26, 2011 3:12 pm

There is one alternative that has worked for a lot of people.

If you're overweight, losing a lot of weight may reduce the apnea. Yeah, a lot easier said than done. And some people who lose weight don't get relief.

There was a lot of talk about the "Pillar" procedure a few years back. Does anyone have opinions on that? It does seem that if it doesn't work, at least it's fairly easily reversed. I get the impression that success rates may not be that high.

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