Newly Diagnosed; Seeking Info

So, I had a sleep test on 9/11. Is this appropriate, or what? Two weeks later, I get the results: yes, you're positive, go for a titration. Great, I'm freaking out as I walk out of the doctor's office -- just the week before I had my first post-surgical labs from my endometrial cancer surgery. I'm claustrophobic. I do not tolerate Things on my face or head. It's taken me seven years to tolerate light reading glasses -- and I love to read. Now I'm hearing that for the rest of my life, I'll be sleeping with a <bleeping> mask connected to a hair drier.

They had a cancellation at the sleep lab, so I had the titration on 1 October. Still don't have the results on that. If the pulmonologist who reads them runs true to form, my doc will get the results around Friday.

Titration went better than the actual test. Bed still squishy-soft and miserable for my back and gut and hips, but at least there was no carpet in the room, and they kindly got sheets from the hospital so I wasn't snorting and sneezing and gasping with a major allergy attack from the perfume on them the way I was the night of the original test.

I went up the day of the test and met with the mask specialist and spent about three hours trying to find a mask that will work for me. I think the one I ended up with MAY have been a Breeze. The upshot of it is that I don't have straps biting into my forehead and temples, or trapping me across my cheeks or strangling me around my throat. Feels like I'm wearing a Klingon forehead. Nasal pillows didn't work: they were VERY painful, so I have a cover-the-snoot which is going to drive the Dachshund Duo crazy when they can't give me puppy kisses. I can also state emphatically that the <bleeping> engineers designing these masks do not have long hair.

Specialist put some light pressure on while I was trying the masks -- and I could not breathe out against it. Could not. And I tried. I mentioned this; he looked doubtful, and said they could do bi-level, but that "most people" did not like it. I tried it, and liked it just fine.

As I said, the titration went a little better. The pulmonologist was apparently annoyed that I only had 4.5 hours on the initial test and seemed to think I ought to have a sleeping pill for the titration. Huh? Isn't the object to work with my NORMAL sleep pattern? I don't do sleeping pills. It would have been nice if they'd scheduled the test for my normal sleeping time -- midnight-thirty to around 9:30 am. Don't know why they're surprised when I have trouble falling asleep 2.5 hours ahead of my normal bedtime.

At one point, my breath was out of sync -- and I couldn't get it back in sync with the <bleeping> machine. It kept going faster and faster and I couldn't breathe that fast. I was hyperventilating. I pulled the mask off and tried to roll over, and got hit on the head with the wire-connection box. I was tired and cranky, and grabbed the box and threw it at the head of the bed, which fetched the technician. She rearranged the box, and made some adjustment to the flow, and I was able to go back to sleep.

I know I had to readjust the mask multiple times because I kept getting squirted with cold air. Around 4:30a I was awakened with my usual: severe pain in my hips. (This is why I saw the doctor who prescribed the test: chronic pain. She stated that disturbed sleep could be a cause of chronic pain; I pointed out that chronic pain could cause disturbed sleep.) Technician tells me it will be just about another half an hour. I told her I was in too much pain to go back to sleep. So she stopped the test and came in.

I could not roll from my right side to my back without help. I could not sit up without help. I staggered like a drunk, trying to get my balance and walk to the bathroom to get some water so I could take my pain meds. This was totally abnormal for me.

Tech said I got several hours of REM sleep and that they'd found the pressures suitable for me. I left the sleep center and went to the fitness center and did three hours of my water therapy exercises, which relieved the pain more than any meds.

So now I sit and wait for the formal results, probably waiting at least another week for an appointment with my pain doc, and then Ghu Only Knows how long before I get a machine.

What I'm hunting, after this long-winded semi-introduction, is information on what kinds of issues to discuss with my doctor (who admits that sleep apnea is not her specialty), and what kinds of questions to ask about what kind of machine would be most useful.

My inclination is to go with a machine that I can keep logs of progress on and make sure of what's happening, but I'm not sure what would be optimum.

In addition to this, we often take long car trips, and I need a machine that I can easily use in the car. Similarly, being in hurricane country, I need to be prepared for evacuations and power-outages.

Also haven't encountered, so far, any tips on introducing pets to a machine. (No, tossing them off the bed is NOT an option. Sorry. They're my fur children.)

I'm seriously scratching my head, trying to figure out where I'm going to put the consarn thing. My night stand has two angled reading lights, the phone, my middle-of-night meds, a bottle of water, the heater fan which I need to alternate hot and cold air since my cancer surgery, and the book I'm currently reading. There's no place for anything else!

So, can people point me to reading material?

I'm a researcher by inclination, but there's entirely too much info available to sort out what I actually need at this point in time.

My thanks in advance.

-- Kiralynx

Welcome to the group Kiralynx.

I sympathize with you. Sleep Apnea isn't exactly easy to deal with. Strapping a mask to you face that blows air down your pipes isn't an easy idea to overcome. But I will say from experience, I am absolutely glad I do every night. My quality of life has greatly improved.

As far as reading and gathering info, One of the first places to look is at the "Our Wisdom" light bulb at the top of this web site. There is a wealth of collective knowledge there. Also, if you have ANY questions, feel free to post them here in the forums. You'll be surprised at how many friendly knowledgeable people are here.

Also https://www.cpap.com is a great source of info on CPAP products. Also a great place to purchase equipment if your insurance copay / deductible is high. Some report that the prices there were cheaper than their insurance co-pays.

As for machines, it sounds like you would do well with a data capable machine. In the Respironics line, there is the M-Series PRO (for straight CPAP) or M-Series AUTO (for an APAP - or Auto Titrating CPAP). Many people on this site also like the RESMED brand, but I'm not as familiar with those.

Good luck, and again welcome.
-craig

Also, forgot to mention: You commented on using your machine in the car. I can't speak for any of the other brands, but the Respironics M-Series units specifically state that you can't run them off of 12V while the vehicle is running. I suspect that is because the vehicle typically puts out about 14-16 volts while running. Sometimes higher.

Hello Kiralynx,

Welcome, and let me say you have come to the right place. I've been around here only 5 weeks and my health has significantly improved. Pull up a chair for awhile and yours will too. For the next couple weeks at least, you won't run out of valuable things to learn here. So put your research skills to work. Check out the light bulb at the top for many questions.

The way this works, is this forum is loaded with very experienced cpap users that share knowledge and make the whole therapy thing so much easier. You can ask any questions you want, ranging from what face creams to use, to how sleep in the bed pets adjust (and I hear they do fine).

When prescribed for you cpap can make a huge difference. Attitude is very important, as the physical adjustment isin't so hard.

To start with, get copies of all your sleep studies, titration and prescription. Your timing is very good, in that you can have input on the machine you will be using.....and you will probably want an auto machine with full data capability, as well as software to monitor your progress. I enjoy looking at my numbers in the morning, knowing the therapy is preventing my brain from being starved of oxygen. I don't think anyone would use cpap if it weren't required, however it's really a very small concession to make when you consider the huge difference in how well you feel!

Georgio

Craig-Tx wrote:I sympathize with you. Sleep Apnea isn't exactly easy to deal with. Strapping a mask to you face that blows air down your pipes isn't an easy idea to overcome. But I will say from experience, I am absolutely glad I do every night. My quality of life has greatly improved.

Sleep apnea can't be any worse to deal with than 32 years of Irritable Bowel Syndrome which resulted, among other things, in my gaining around 290 pounds. I got a handle on the IBS 7 years ago, and have lost 180 pounds. Without bariatric surgery, I might add.

Sleep apnea also can't be any more terrifying to cope with than my cancer surgery in April.

Craig-Tx wrote: As far as reading and gathering info, One of the first places to look is at the "Our Wisdom" light bulb at the top of this web site. There is a wealth of collective knowledge there. Also, if you have ANY questions, feel free to post them here in the forums. You'll be surprised at how many friendly knowledgeable people are here.

Already read all of the light bulbs. It's just taking awhile to assimilate the amount of information. One issue is that the format of the sleep report does not match anything I've found here, so I'm following some, but not all of the analysis.

I doubt I'd be surprised at the knowledgeable folk on a topic of passionate interest. I run a list for people following the very stringent eating method that I've used for seven years. (I call it an eating method because "diet" has all sorts of weird connotations these days.)

Craig-Tx wrote: Also https://www.cpap.com is a great source of info on CPAP products. Also a great place to purchase equipment if your insurance copay / deductible is high. Some report that the prices there were cheaper than their insurance co-pays.

I've been studying the various machines and looking at the masks. As I said, not one of the mask engineers apparently has long hair. I literally have no idea what the co-pay is likely to be.

Craig-Tx wrote: As for machines, it sounds like you would do well with a data capable machine. In the Respironics line, there is the M-Series PRO (for straight CPAP) or M-Series AUTO (for an APAP - or Auto Titrating CPAP). Many people on this site also like the RESMED brand, but I'm not as familiar with those.

Yes, I'm pretty sure I want a data capable machine. It's second nature to me to keep an event log and try to determine what I can do to make things more effective. It'll just take time to learn what I'm looking at and for.

Thank you for the welcome.


-- Kiralynx

Craig-Tx wrote:Also, forgot to mention: You commented on using your machine in the car. I can't speak for any of the other brands, but the Respironics M-Series units specifically state that you can't run them off of 12V while the vehicle is running. I suspect that is because the vehicle typically puts out about 14-16 volts while running. Sometimes higher.

I'd probably be looking to have a battery for the xPap. We already run one, sometimes two small refrigerators in the car because I cannot do fast food and the majority of what's available at roadside restaurants is contaminated with things I can't have -- sugar, starch, grains, potatoes, natural or artificial flavors, to name just a few items. So I carry safe food with me.

-- Kiralynx

Georgio wrote: Welcome, and let me say you have come to the right place. I've been around here only 5 weeks and my health has significantly improved. Pull up a chair for awhile and yours will too. For the next couple weeks at least, you won't run out of valuable things to learn here. So put your research skills to work. Check out the light bulb at the top for many questions.

Georgio,

Thanks for the welcome. My chief irritation at the moment is how <bleeping> slow things are moving. It took three weeks for the sleep clinic to schedule me, 8 days for the pulmonologist to read the original test, another week to get the appointment with the doc to find out what the pulmonologist said. Then I was lucky: sleep lab had a cancelation, so I got in for the titration a mere five days after seeing the doc. Now it's been a week, and I haven't heard what the results of the titration were other than what the technician told me.

Georgio wrote: The way this works, is this forum is loaded with very experienced cpap users that share knowledge and make the whole therapy thing so much easier. You can ask any questions you want, ranging from what face creams to use, to how sleep in the bed pets adjust (and I hear they do fine).

Again, I'm familiar with how on-line communities work. I've been participating in them for over 20 years. But thank you for the information. I've always said our Duo is entirely too smart for OUR good; they'll get a chance to prove it. My big male isn't going to like the cold air blast from the exhale on his rump, that's for sure.

Georgio wrote: When prescribed for you cpap can make a huge difference. Attitude is very important, as the physical adjustment isin't so hard.

Eight years ago, if you'd told me I'd give up grains, potatoes, sugar, starch, yes, beer, and even CHOCOLATE, and not mind, I'd've said you were nuts. But so it's been for seven years. When the result of a slip is hours spent squirting into the toilet, it very quickly becomes "No food is worth this!" I suspect that a day or days dragging because of errors in therapy application would quickly have the same effect.

Georgio wrote: To start with, get copies of all your sleep studies, titration and prescription. Your timing is very good, in that you can have input on the machine you will be using.....and you will probably want an auto machine with full data capability, as well as software to monitor your progress.

The only thing I have is my initial study summary, and the prescription for the titration. Still waiting for the results of the titration. As I noted elsewhere, the format is very different from any I've seen posted, and I'm not certain how to translate some of what I'm reading.

Georgio wrote: I enjoy looking at my numbers in the morning, knowing the therapy is preventing my brain from being starved of oxygen. I don't think anyone would use cpap if it weren't required, however it's really a very small concession to make when you consider the huge difference in how well you feel!

My question is -- does anyone "recover" from sleep apnea? Or is it a lifelong issue once it develops?

If mine is, in fact, linked to the hip and knee pain, I can pinpoint, literally to the day, when it became severe enough to cause the pain. Ironically, it did so in the first, astounding surge of weight loss when I modified the kinds of foods I ate, and dropped around 60 pounds in eight months. Yet not ONE of the physicians every mentioned the possibility of sleep apnea and chronic pain. "Just lose some weight, and it'll clear up," they said. Except that it manifested as a result of losing weight. Of course, they also claimed my cancer symptoms would clear up if I just lost weight -- fortunately, I took myself to a competent gynecologist, or it could have been too late. Although it's a fact that obesity and morbid obesity can be related to sleep apnea, ie, cause it, it also appears that apnea can cause obesity. So my question then, is, how is it related, and what causes weight loss when the apnea is successfully treated?

-- Kiralynx

Hello-- Kiralynx,

If you have the discipline to lose that kind of weight, make those kinds of changes in your life for your health and well being, and if you are diagnosed with apnea, and cpap is prescribed, you are a perfect candidate and you have come to the right place. Apparently apnea, and the associated oxygen starvation, is being linked to all kinds of maladies...some of which probably not yet discovered.

The initial process with the sleep studies, results and reports, and waiting for appointments can be slow and took me several weeks. Once you have your "titration" results, you can begin to take over your treatment, get some appropriate equipment, and start therapy on your terms.

I think the percentage of folks that recover from sleep apnea is very high for those that are on cpap, and relatively low for those that are not. None of us originally thought we would ever find ourselves here, but now that we are, have accepted our diagnosis, we have taken control of our therapy, and work together to make really surprisingly huge improvements in the way we feel, and the quality of our lives. The idea of using "equipment" to breathe at night is really foreign at first, but most here seem to make the adjustment relatively quickly.

Welcome again, stick around, post your sleep studies, you will get some good advice. And by the way, I'm only 5 weeks into this and a complete convert! Basically, I went from moping thru my day repeating over and over to myself, "I'm so tired"' to taking motorcycle trips out of town again.

Georgio

Nothing like talking to myself here. I'm currently very aggravated, since I stopped by the doctor's office after putting in 80 minutes of water therapy exercises and 50 minutes of steady swimming. (Not "laps," but very steady swimming). I do this three times a week for pain control.

Asked if they had the CPAP titration results back. Was told I had to make an appointment to get those. I said, "Yes, I know, but I wanted to know if you had received the results, because there's no point in making an appointment if you don't have the results."

Office clerk checked the computer and assured me they hadn't received them. I requested that she check my chart. No, she said, the only thing she had was a sleep study from 1 October. I told her that that was the CPAP titration report, since that was when it was done. She sent me to another desk to make an appointment.

The earliest the doc has an appointment is 4 November!! Jesus H. Frog and all his tiny tadpoles! We started this process the beginning of AUGUST!!

And once I see the doc who ordered this, then I may have to have a referral to yet another specialist with a concomitant wait time? I'm not looking forward to being a "hose head," but if this is what's required, why in blazes are the medicos piddling around like this?

(Sorry, just venting!)

OK, here was the initial sleep study report which I received.

SLEEP CONTINUITY MEASURES:
Total sleep times was 4.4 hours, sleep period time 4.7 hours, time in bed 6.6 hours, sleep efficiency 66.7%. Arousal index 20 events per hour. Number of awakenings, 97.

SLEEP ARCHITECTURE
The patient was awake for 131 minutes, stage I sleep 13 minutes, stage II 115 minutes, stage III/IV 45 minutes, and REM sleep 55 minutes.

RESPIRATORY EVENTS RELATED TO BODY POSITION.
THe patient spent 264 minutes in the supine position with 1 apnea and 71 hypopneas. The overall apnea plus hyponea index was elevated at 16 but worse in REM sleep at 32.

The patient had 71 desaturations with a mean duration of 25 seconds. The patient spent 5.5% of the total sleep time with a saturation between 80 and 89%.

Mean heart rate was 77 beats per minute.

IMPRESSION:
This study was positive for obstructive sleep apnea with a respiratory index of 16. The patient was awake a third of the night. Would recommend a CPAP titration study possibly with a sleep aide.


-- Kiralynx

Kiralynx wrote:Talking to myself yet again here. Earlier, I said, "The earliest the doc has an appointment is 4 November."

Hot diggity dachshund! I decided I would call every morning and every afternoon to see if the doc had a cancellation earlier than 3.5 weeks away.

Just called. I now have an appointment for TOMORROW at 11:30 AM!

I already know I'm OSA positive. I haven't seen the titration results -- I see those tomorrow. I do know that I was on Bi-Pap for the titration.

So, folks... what kind of questions do I need to be prepared to ask the doctor?

-- Kiralynx

Obtain complete copies of all your sleep studies.

Let the Dr. know that you have been researching therapy and that you want a "fully data capable" machine because you plan to purchase software to track your progress nightly. You also want an "auto" machine, because you understand they are more comfortable, produce a higher rate of therapy compliance.

(If you plan on insurance covering your equipment, you are going to want the Dr. to write you a script for the exact make and model of equipment that you want. You have to be carefull not to get stuck with an inexpensive machine you don't want.)

Georgio

I requested a referral to see a neurologist because I suspected sleep apnea on April 7th. I only got a machine on September 9th, and I STILL haven't got the correct one. They have to special order it and it'll take two weeks to get here.

You could be doing a lot worse! At least you're here and you're getting informed before you go in to speak with the doctor. You can make sure you get the exact right machine and not have to deal with this additional rigamarole.

If you're going Bipap... try to get a Bipap Auto. Very nice machine. Lots of options that can be tweaked on it.

Georgio wrote: Obtain complete copies of all your sleep studies.

Done -- and I can't do things the easy way. Turns out I don't have "ordinary" OSA, I have complex sleep apnea, because on the xPap, I had 28 central apneas which weren't in evidence on the original sleep study.

Georgio wrote: Let the Dr. know that you have been researching therapy and that you want a "fully data capable" machine because you plan to purchase software to track your progress nightly. You also want an "auto" machine, because you understand they are more comfortable, produce a higher rate of therapy compliance.

Regrettably, the doctor who ordered the study is a pain management doctor, not a pulmonologist or a neurologist. As a consequence, she didn't know quite what to put on the script, and neither did I, because I hadn't gotten as far as researching something like complex apnea. So she wrote it "as recommended," referring to the pulmonologist's recommendation that I have something capable of handling the centrals, which meant, among other things, an auto machine.

Georgio wrote: (If you plan on insurance covering your equipment, you are going to want the Dr. to write you a script for the exact make and model of equipment that you want. You have to be carefull not to get stuck with an inexpensive machine you don't want.)

I did ask the doctor's office how I was to proceed after I had the prescription. They did not know, but suggested taking it to the sleep lab where I was tested. I called them (they are just down the street from the pain doctor's office) and explained the situation. The lady I spoke to was quite helpful, looking up which DME my insurance worked with, and offering to fax sleep studies and prescription to them so I did not have to go chasing all the way across the city.

I then came home, and waited a couple hours, then called to be certain the DME had received my information. They had, and said their respiratory therapist would want to review it, and get back to the doctor with specific recommendations. I requested that the therapist also talk to me, as I had some definite ideas about what I wanted.

Next morning, I called again, and politely asked about the status. The therapist called me back shortly thereafter, and we had a fairly productive discussion, although I think it's going to take her a bit to get used to a patient who is prepared to research everything -- and who may have numerous questions she has never had to answer before. She was going to call the doctor and make her recommendations, and have the doctor write a script for those exact recommendations so the insurance doesn't have a canary over it.

Because of the complex apnea, the therapist is recommending a Respironics BiPAP Auto SV for me. <gulp> I looked it up, and am in the process of going over the manual which I found on-line. Things will probably become clearer when I have the actual machine in front of me.

Either I did not explain myself clearly enough, or she's not a computer person, because she did not seem familiar with the card reader and software. Hope I can persuade the insurance to cover those -- good records are a necessity, since the therapist said that she was not satisfied with my O2 levels during the sleep study, and may want me to wear an oximeter at home for a few nights. If the AUto SV doesn't fully bring the O2 levels up, she may want to add additional oxygen to things, a thought which thrills me not at all. I have enough trouble traveling by air with my special food issues without having to get clearance for oxygen.

If things go well, I might have my machine as early as Wednesday this week.

-- Kiralynx

fortomorrow wrote: I requested a referral to see a neurologist because I suspected sleep apnea on April 7th. I only got a machine on September 9th, and I STILL haven't got the correct one. They have to special order it and it'll take two weeks to get here.

Ouch! You have my profound sympathy on that! I swear, I've been sleeping worse than I was before the tests, because now I'm conscious that there's something wrong! On 7 APril, I was snoozing under anesthesia for cancer surgery -- and I've always feared general anesthesia. It may be that my subconscious was smarter than my conscious mind, given the dangers of apnea and anesthesia!

I certainly hope you get your proper machine soon!

fortomorrow wrote: You could be doing a lot worse! At least you're here and you're getting informed before you go in to speak with the doctor. You can make sure you get the exact right machine and not have to deal with this additional rigamarole.

Research is a specialty -- but I admit that it makes me a trifle nervous to be more informed about my condition than the original prescribing doctor!


-- Kiralynx