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New and Confused and Abused
#1
New and Confused and Abused
        Hi all,  
 I am new to this cpap stuff  and my last 6 plus months of life have been horrific for me.  A friend said they thought I should have a sleep study because they thought i had apnea,  Well i had the study and sure enough, seems I have the evil culprit. 
I also have to get m throat stretched at least once per twice a year, due to shrinkage. 

What my issue is I Have no help, I am on US Medicaid Insurance as I am disabled,  I am 56 yr  Female.  My cpap provider stinks as for help and my sleep doctor keeps saying i have to talk to the cpap provider.  I am beyond furious here and so confused as I do not understand half of this stuff.  It took me over 2 months to get my machine after the diagnoses...

The end of November 2017 I had left carpal tunnel wrist surgery, Then December I had the right wrist carpal tunnel surgery, March 2018 I had vaginal wall cancer cell surgery. May 1 2018 I had breast reduction surgery to help the back and neck issues I was having.  Then,  so be it, I blame apnea in a sense,  I had a massive heart attack along this road, and May 8, I had 3 stents put in.  

Now I am on 5 new meds,  lipitor, pepcid , blood thinner and heart med and a asprin.   I do not take pain meds, I took nothing with the above surgeries for pain.  So this 81 mg asprin I believe is sedating me beyond sedation as it knocks me out when i take it unless I stay awake and fight like hell or drink coffee all evening to combat it.  
Yes I am a smoker, and please dont tell me i need to quit, Thank You. 

I downloaded the sleepy head program and look but not sure what to upload here, If anyone can help me, I am not good with message boards but am going to try. 

Please Help...
I am Tired !!


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#2
RE: New and Confused and Abused
Hi Starberrylane and welcome to the forum! It's good you found out you have sleep apnea as you can now be treated for it and perhaps be on the road to better health. It is known that left untreated it can cause health issues, so good you now have your xPAP machine. It is not unusual to wait 2 months to get your first machine after diagnosis.

Sure sounds like you've had a bad time health-wise and glad you are doing something about it!

There will likely be people chiming in with helpful insight and suggestions from the SleepyHead charts you posted. Hold on for more replies and best of luck!
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#3
RE: New and Confused and Abused
Hi Starberrylane, welcome to the forum!

The last 3/4 of a year have been horrible!  (I've had some "issues" during that period, yet not nearly as difficult or serious as yours; still I can appreciate how overwhelming it is, and now apnea on top of it.  Phew!)

I'm no expert so I won't even look at the charts you posted (but thanks for doing so!)  As it happens, I've had some heart issues, and my doctor instructed me to take the low-dosage aspirin at bedtime; however he said if it interfered with my sleep I could take it during the day — I guess he heard about your problems Too-funny  Maybe you can take it sometime that it doesn't bother you to be so sedated?

As to posting your SleepyHead charts, perhaps this will help: Organize your SleepyHead Charts

Hope that helps!  Please keep us posted.
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#4
RE: New and Confused and Abused
Hi welcome to the forum I had a quick look at the charts. It would be good if you included the whole of the daily screen, as the details on the left hand side give us valuable data. It looks like your machine is running at the max pressure of 16 for a large part of the night and wants to go higher due to the large number of obstructive events.


A soft cervical collar may help reduce the obstructive apnea without needing further pressure increases
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#5
RE: New and Confused and Abused
Hiya, I really appreciate all the help, as I dont understand what I am doing at all - I tried to do the set up, maybe this will do better on the pic.


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#6
RE: New and Confused and Abused
Hello Starberrylane,

Welcome to Apnea Board!

I've read your first post several times and looked at your charts. And my first impression is to encourage you to find a sleep doctor that is not going to send you back to your CPAP provider (DME). This is a terrible cycle that gets you no where. If you have a primary care doctor, you may consult with him/her for a referral to a different doctor.

Do you have a copy of your sleep study? I would get it if you don't. You are entitled to the sleep study results by federal law as it is a medical record and it is your medical record. The reason you need this is to seek help from a different doctor and they will need that information.

Your charts indicate that you are experiencing mixed/complex sleep apnea. Your apnea is still considered untreated with an apnea-hypopnea index (AHI) of nearly 15. Less than 5 is considered treated or normal. The chart you posted is a snap shot of data that your machine collects about your breathing during a sleep session. Since we only have one session to look at I don't want to make any assumptions about your needs. I do notice that when pressure is higher you are experiencing central apnea and unfortunately you may need a different form of therapy. Like I said though, this is only one session.

I strongly encourage you to start a conversation with your primary care doctor to get some truly good medical advice instead of the back and forth that you have gotten. You don't sound confident with the treatment you are getting and it's time to change that up.

If you would kindly keep us updated by giving us details about your sleep study and posting more charts, that would enable us to give better advice.

You are just starting CPAP therapy and, for some, it can be tough. However CPAP therapy can be greatly beneficial to your health and quality of life. Stay tough and keep using your machine.

I look forward to more posts from you and best wishes.
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#7
RE: New and Confused and Abused
I can't address the CPAP machine much...since I'm a newbie as well...and the machine is kicking my butt for the most part.

Your med mix and evening symptoms strike me as a bit odd. Pepcid, a blood thinner and aspirin. Were these all prescribed by the same physician?

Do you get dizzy if you stand or move suddenly in the evening? If you are taking all three of these in the evening, your blood pressure may be dropping a bit too much. Something to look into at least.
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#8
RE: New and Confused and Abused
I think the preceding replies have some good advice for starters.  But while you're negotiating with the doctors and the DMEs, which could take a long time, you still need to be using the machine, so in any case you should get familiar with it and see if there are things that you need to tweak.

For instance, the chart that you posted shows that the machine is maxed out at a pressure of 16, so I would raise that upper limit to 20 if I were you, and check the results further after a night or two of that wider range.  However, if your doctor is jealous of his or her control over your machine's settings and will throw a tantrum if you change anything, then maybe you should check with the doc first.  Or maybe not; it really should be up to you, and it's significant that you're able to use Sleepyhead and/or Encore to demonstrate that the current settings are insufficient.  Any doc who has any sense (and not an insanely huge ego) should look at that situation and say "OK, go ahead and tweak the settings yourself to get better results."

As for getting any actual help from the RTs at the DME companies, ha ha, good luck widdat.  (I'm disgusted at the moment because I've just been having to deal with a runaround situation with my own randomly assigned RT at a DME, who seems to be incapable of the simple chore of reading data from SD cards.  Foo.)

OBTW, being on CPAP therapy for a while has been known to reduce the incidence of acid stomach and gastric reflux (as the CO2 buildup is slowly purged from the body), so it's conceivable that if you continue with CPAP for enough weeks and months, eventually you wouldn't need the Pepcid.  But that's merely a guess and I am not a doctor, etc.

Anyway, for starters, you need the user's guide for the Dreamstation Auto.  If you already have that on paper, great.  If not, here's a link to a PDF on the Philips web site; you can use your browser to download this file (not just view it in a browser window) and then you can print it, if not from the browser then from Adobe Reader or whatever.

http://incenter.medical.philips.com/docl...ction=Open

That will get you a file called DreamStation_CPAP_User_Manual.pdf, which also covers the Auto model.

Second, to go along with the user's guide, you can probably use (sooner or later) the clinician's manual.  At the top of the web page here on AB is a link to "CPAP Setup Manuals".  If you go to that page and scroll down to (or do a search-on-page for) the heading "Philips-Respironics DreamStation Series Machines", you'll see a paragraph of instructions for getting into the machine's setup mode, with a link to "setup instructions with pictures".  Copy & paste that paragraph somewhere to save it, or print it; same with the page linked to ("dreamstation-clinician-setup-instructions").  Also, back on the main "CPAP Setup Manuals" page, scroll down to the heading "SECTION THREE: CPAP Clinician Setup Manuals Available via Email", find the exact model name of your machine in the list under "Philips-Respironics Manuals", copy that line, scroll down some more to the section "HOW TO ASK FOR A MANUAL VIA EMAIL", and do that (send a message to the address given, with the model-name string pasted into the body of the message).

Once you've got the manuals, you can do some browsing in the machine's menus and maybe experiment with various things.  For instance, newbies often find that what Philips calls Flex and Resmed calls EPR, exhalation pressure relief, can make a difference to how comfortable using the machine is at first.  That can be set to 0 (off) or 1 through 3, representing the pressure differential, or delta, during exhalation relative to inhalation.  When you're using the machine, if exhaling feels like you're trying to blow up a balloon, then increase the Flex setting by 1 and see whether that makes a difference.  If not enough, increase it again.  And so on.

That's all part of taking control of your own therapy and being proactive about the whole thing, which is the general approach recommended by everyone here at AB.  We apneoids often find that the sleepydocs are too busy and/or oblivious to help us in any significant way.  Even more often, we find that the RTs at our DME companies are effectively clue-free.  So we dig into the machine settings and the data and roll our own.

Good luck, and hang in there.  You can prevail.

And oh yeah, p.s.: here's my obligatory mask spiel.  If the mask that you're using gives you any major problems, first you can do a search here at AB for discussion threads about that specific make & model, read up on it, and maybe get some answers or workarounds or whatever you need.  But beyond that, it's important to keep in mind that there are dozens of CPAP masks in at least three main categories (full-face, nasal, nasal-pillows), and there's nothing saying that you have to stay with the one you've got, except possibly economic/financial constraints.  If you're able to get a different make & model from your DME at no cost to you or if you can buy one yourself (typically they're $75 to $100 retail, and of course never buy one from a DME at its outrageously inflated prices! ... always buy online from a discounting retailer; see the Supplier List linked to at the top of the page), then you can get away from whatever problems you're having with the current one.  Even within the same type, like full-face or hybrid, there are other choices, most likely from other manufacturers, that could turn out to be more comfortable or less leaky or whatever you need.  So the big point there is that you shouldn't blame CPAP therapy in general, or the machine, or yourself, if you have problems putting up with one particular mask for 8 hours every night.  It's possible that another mask would make all the difference.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#9
RE: New and Confused and Abused
And a p.p.s. about masks: I don't want to leave you with the impression that I think there's something wrong with the mask you're using, because I have no idea and haven't used that one myself. It could be perfectly OK for all I know, and if so, you're lucky to have found a good one early on. The thing is, most of us go through any number of masks in the first six months to a year, whatever ones we're able to get our hands on. The perfect one is elusive. Most of them seem to have some problem or other, and that differs from one mask to another and it even differs from one person to another with the same make & model of mask! That's just how it goes. It's all very subjective.

One reason for doing the searching & reading that I mentioned, in the discussions here, is that there are all sorts of workarounds with things like padding between the mask and face, fabric frame-wraps to reduce noise or to prevent skin irritation from plastic or silicone, hose-hangers to keep the hose out of your way, methods of stretching or shrinking headgear straps, and so on. There's a whole little world of do-it-yourself remedies. There's also the Mask Review forum, where you can read up on particular makes & models before buying, and the Mask Primer, which is the first link on that page under "Important Threads".
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#10
RE: New and Confused and Abused
Starberrylane, your problem can probably be improved dramatically and fairly easily at the cost of about $20.  We have had many members achieve dramatic improvements in very short order. For example, on just May 23, a new member, Snores of thunder Posted The Chart Below.  Looks familiar, huh?   He started using a soft cervical collar and today he reported his AHI is now often less than 1.0.  

You share in common a positional apnea problem that is created when your head and neck are out of alignment. This is made worse by the fact you may have some narrowing in your airway.  A soft cervical collar that can support your chin and prevent you from tucking your chin to chest will probably resolve most of your problems with no changes in your CPAP settings.  Try the collar, and if we still need to do some optimization, we can do that, however your events are mainly obstructive apnea and hypopnea with a lot of flow limitation. I don't think you have a central apnea problem in spite of that being flagged in your first post, but if so, we can deal with that AFTER you resolve the positional apnea problem.  You need a soft cervical collar.

[Image: attachment.php?aid=6129]
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