Newly diagnosed CSA - waiting & what to do in meantime?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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mossytreesprite
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Newly diagnosed CSA - waiting & what to do in meantime?

Post by mossytreesprite » Wed Aug 20, 2014 12:10 pm

Hello,
I've had sleeping problems for over a decade, I gyrate my arms or hold them aloft, I mumble, scream, grind my teeth, and have frequent nightmares and paralysis, but over the past couple of years I've had such excessive daytime sleepiness, the ability to stay awake felt completely out of my control, which is quite a frightening feeling. I should have gone to the sleep doctor a long time ago, but I kept thinking it was just my fault for not being able to concentrate - that I should've just worked harder. I work as a scientist, so it's important that I am able to use critical thinking skills, but those have just not been present for quite sometime and it has definitely impacted my job. I did a take-home sleep test last week, and I was surprised (and honestly, kind of relieved) to find out that I have severe central sleep apnea (AHI of 31) and oxygen levels dipping to 60. I'm relieved to know that there is a real problem that has solutions - it's definitely taking a weight off of my constant feeling of being a failure.
I've read many posts already on this site, and the information has truly been very helpful. After receiving the initial diagnosis on Monday, I was told that I need to do the full laboratory sleep test, but when I called the clinic, they said the soonest appointments are 2 months out! I feel really frustrated - now that I know what's going on and how low my oxygen levels are at night, I really don't want to wait that long to start getting some relief. I have huge pressures at work right now, and I can barely function at the most basic levels. Plus I start weeping at the drop of a hat, which is embarrassing. I wanted to post a question to see if anyone out there knows of anything that might help in the meantime. Since mine is mainly central, I don't know if sleeping on an incline or something of that nature would help at all. I would be ever so appreciative of any ideas at all - to be honest, I feel quite scared. I have two kids, and they need their mother back.
Thanks for reading my post, I truly appreciate your time.
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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by unicorn soup » Wed Aug 20, 2014 2:04 pm

I'd find a new sleep Dr. I did three sleep studies in a row about a week apart to find that I have CSA. not to be discouraging but I was just told CSA can take a lot longer to treat than OSA. I've been on an adaptable servo ventilator for three weeks now with no improvement - though I am starting to get used to the equipment and higher pressures. Be strong and hang in there. It's your health, be very proactive and get a sleepy study somewhere else (check with your insurance first)

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by Canadian_Jesus » Wed Aug 20, 2014 2:37 pm

Yep, find a doctor that will help you out. Here in Canada, I had my sleep test about a week and a half after my doctor ordered it and my CPAP machine less than a month after that. Luckily for me, I live in Canada and didn't have to pay for a thing. But concerning the timing for your study, a helpful doctor should have you in for the study in a reasonably short time. Look around for other clinics. For me, I was in denial regarding my severe mixed apnea for about two years after my diagnosis, ignorantly thinking my main problem was insomnia. I was diagnosed in early 2012 and only started using my CPAP machine in April of this year when I started feeling like I didn't have the energy to live a normal life anymore. Hang in there and actively seek your treatment. Where there's a will, there's a way, and now that you know what your real issue is, a better life is within reach. Once you get your PAP, keep using these boards. Most of the information you need concerning PAP treatment is right here.

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by LSAT » Wed Aug 20, 2014 3:21 pm

There must be more than one sleep clinic in Portland. Check around and then check with your insurance as to who is in network. Some hospitals also have sleep clinics. Unusual if your doctor will approve only one specific clinic.

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by Trogdor » Wed Aug 20, 2014 3:28 pm

Is there another sleep clinic in your area? It sounds like you might even be willing to travel a bit to find a clinic that could take you right away.

I didn't have to wait long for my study but it still took me 3+ weeks to get the follow up appointment with the doctor and then another 3 weeks to actually meet with the respiratory therapist and get the machine. The worst part was that whole time knowing that I could actually be sleeping through the night. I probably hadn't had any real REM sleep for months or years, but that extra 6 weeks seemed particularly cruel.

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archangle
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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by archangle » Wed Aug 20, 2014 5:01 pm

First off, be glad you got here first before you get screwed by the sleep clinic and DME (CPAP seller). There are a lot of people in the process who will screw you over. Read the links in my signature line for help on not getting taken for a ride, wasting cash and getting poor therapy.

Don't be too afraid of CSA vs. OSA. It's not necessarily more harmful, but it may be harder to eliminate.

Ask the office to put you on standby in case there is a cancellation. If it's a different office than your doctor, ask if he can help speed things up or find another sleep lab.

While you don't want to wait, presumably you've had this for years, so the risk of another month or two is probably not that high.

The doctors really want to stress how important this is, but they sure like to sit on their backsides taking their time getting their job done.

Changing your sleep position might help your apnea, give it a try.

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avi123
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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by avi123 » Wed Aug 20, 2014 7:12 pm

What kind of take-home test did you have? Was it a CPAP machine like Apnea Link, a WatchPat, or what? Who or what decided that you have a Central Sleep Apnea syndrome and not something else?

In my opinion your best bet is to drive at night to your nearest non private hospital and enter the emergency room. ER physicians are experts in Sleep Apnea diagnosis and treatment. They could test you and within 30 minutes of sleep decide what you have, and give you something to take home or on a temporary basis.

Another approach until you see a sleep doc could be to buy an Finger Pulse Oximeter with alarm. Enter this term into Google. When you go to sleep you put it on your hand finger and set it to sound an alarm if your SpO2 falls to let's say 89%. By waking up and breathing your SpO2 would return to normal.




About that Oxygen Saturation drop the fastest thing that you could do now is get a Pulse Oximeter to go on your finger which you set to sound an alarm if your SpO2 rate drops below 90% for example. Waking you up may sound rude but by breathing it would restore your SpO2 back to normal, till next time. This would be a temporary cure until you see someone.

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archangle
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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by archangle » Wed Aug 20, 2014 7:58 pm

avi123 wrote:In my opinion your best bet is to drive at night to your nearest non private hospital and enter the emergency room. ER physicians are experts in Sleep Apnea diagnosis and treatment. They could test you and within 30 minutes of sleep decide what you have, and give you something to take home or on a temporary basis.
That's the DUMBEST idea I've heard in a long time. Tie up an emergency room for a non-emergency condition that you've already been seen for?

Do you have any idea what an ER room visit costs these days in the US?

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by palerider » Wed Aug 20, 2014 8:22 pm

archangle wrote:
avi123 wrote:In my opinion your best bet is to drive at night to your nearest non private hospital and enter the emergency room. ER physicians are experts in Sleep Apnea diagnosis and treatment. They could test you and within 30 minutes of sleep decide what you have, and give you something to take home or on a temporary basis.
That's the DUMBEST idea I've heard in a long time. Tie up an emergency room for a non-emergency condition that you've already been seen for?

Do you have any idea what an ER room visit costs these days in the US?
ya know, I'd been ignoring avi lately, because I thought his ravings were just annoying, but I can see that they're *dangerous* in some cases *sigh*

I'm glad someone's watching for his crazy.

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by Ogeo » Wed Aug 20, 2014 9:55 pm

I want to re-state that you should call and ask to be put on the cancellation list. You just might get in sooner. (that is if you can't find another place to do it sooner). I still am not on a machine yet. My process is taking about a month so far. I had my in hospital sleep study on July 24th, then 11 days later had the titration study. The doctor that reads it was on vacation so had to wait until he returned. I had the doctor's office that read the study call me when the doctor had studied the results. They now want another titration study on a AutoSV. I have that done tomorrow only because I called the hospital. They initially said that they couldn't get me in until Oct and when I questioned about getting in sooner from a cancellation, she suddenly discovered that they had one and put me in that place. It wouldn't have happened if I hadn't taken the initiative to call them and keep on top of it. Good luck. In the mean time, read all you can. There is some great info on this site.

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by SleepyEyes21 » Wed Aug 20, 2014 10:37 pm

archangle wrote:
avi123 wrote:In my opinion your best bet is to drive at night to your nearest non private hospital and enter the emergency room. ER physicians are experts in Sleep Apnea diagnosis and treatment. They could test you and within 30 minutes of sleep decide what you have, and give you something to take home or on a temporary basis.
That's the DUMBEST idea I've heard in a long time. Tie up an emergency room for a non-emergency condition that you've already been seen for?

Do you have any idea what an ER room visit costs these days in the US?

Hi Mossy - I am new to OSA and treatment also, and am awaiting results from an in-home apnea test. I know this can be a frustrating process; the slow-downs to get care seem like forever when you know you have a problem. Like archangle, I'm not sure going to the ER is going to help you at all, and you may wind up with major medical costs you don't need. I went to the ER in June (this year) twice for sudden onset of dizziness, and told them I thought I had sleep apnea. They never tested me for that, nor offered to, and I seriously doubt that they would send you home with an apnea machine. Due to crappy HMO insurance, I've had to change primary care doctors twice since June; the first new doc would not give me a referral for an apnea/ sleep study no matter how much I asked, and frankly, I'm wondering still if I should consult an attorney about him! Like you, knowing I have many apnea symptoms that can significantly put my health at risk, I have been very worried about waiting to get in to get tested and get treatment.

My advice is to read up on the different machines that are used for CSA/OSA - there is TONS of great info on this site!! Also - listen to others like archangle and palerider who have 'been around the cpap block' for quite a while. If you start to read these forums enough, you will see who is active and on target with good information and suggestions.

Also - you can look into buying a used machine to start treatment before your next sleep study. I know there are CPAP machines with 'autoset' that automatically adjust the titration rate you need, as you need it; you may not need a titration rate from your doc, but palerider and archangle can probably inform you better on that, since I am not sure about CSA machines.

Your local DME may sell used machines; you can also look at secondwind.com, or other online sites for used machines. Because I am changing insurances in 2015, I have decided to buy a used machine now that I can later use as a backup if needed.

Hope this helps- hang in there! You'll be okay

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by archangle » Thu Aug 21, 2014 12:08 am

SleepyEyes21 wrote:Also - you can look into buying a used machine to start treatment before your next sleep study. I know there are CPAP machines with 'autoset' that automatically adjust the titration rate you need, as you need it; you may not need a titration rate from your doc, but palerider and archangle can probably inform you better on that, since I am not sure about CSA machines.
Treating central apnea on your own is a lot tougher than treating obstructive apnea on your own. Not that I recommend trying to treat obstructive on your own.

Doubly so for a newbie.

Doubly doubly so because you can make CSA worse with CPAP done wrong.

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by palerider » Thu Aug 21, 2014 7:47 am

archangle wrote:
SleepyEyes21 wrote:Also - you can look into buying a used machine to start treatment before your next sleep study. I know there are CPAP machines with 'autoset' that automatically adjust the titration rate you need, as you need it; you may not need a titration rate from your doc, but palerider and archangle can probably inform you better on that, since I am not sure about CSA machines.
Treating central apnea on your own is a lot tougher than treating obstructive apnea on your own. Not that I recommend trying to treat obstructive on your own.

Doubly so for a newbie.

Doubly doubly so because you can make CSA worse with CPAP done wrong.
As someone that has experience doing just that, i wouldn't say that it's much much more difficult than treating OSA.

however, it *IS* much more *expensive* than treating OSA, in that you need an ASV, not a cpap machine to ensure success.

setting up a S9 adapt isn't much more difficult than setting up an autoset, min/max epap, min/max ps, the defaults are a good place to start, like an autoset, and then check your data. I haven't used the PS 960 autoSV, and I understand it has a couple more settings, but the complicated stuff, the computer does for you.

secondwindcpap has used s9 adapt units, I'd check with them and make sure they were model 36037 and not model 36007 though.

the adapts are practially magical

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by BlackSpinner » Thu Aug 21, 2014 9:40 am

I would hammer on the doctors and check with your insurance about other sleep labs - Wave that 60% SPO2 reading. You really don't want that kind of reading, it means that part of the time at night is spent at slightly more then half the oxygen you need as a human to live. If you were in the hospital and being monitored, the alarm bells would be going off at 80% and the crew would be rushing to your side.
At worst case you should be offered O2 at night (though if you don't breathe it doesn't help much)

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Re: Newly diagnosed CSA - waiting & what to do in meantime?

Post by avi123 » Thu Aug 21, 2014 9:58 am

OSA is a disease like many others such as Heart arrhythmia, Positional Vertigo, Asthma, Urinary tract infection, etc. Where would you go for help during weekends and holidays if not to an emergency room in a hospital. U.S. physicians don't work after hours, and also not on weekends and holidays. So if you're choking during sleep at night and can't breathe, to where would go you for help? This poster named ArchAngel shows up on this website and interferes with members posts quite bullingly. When it comes to medical issues his interference is full of nonsense because he has zero knowledge in physiology, and pathology. On top of it, he never even once agreed to show his own OSA treatment results via graphs Stats, etc. Just words, and more words criticizing others.

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