Anxiety of getting diagnosed & treated with NO SLEEP DOCTOR

[cigarbat]

You don't need a sleep doc, unless you can't change a light bulb on your own.

I did the online sleep study at home. Bought the S9; had it fedXed overnight, got it on Saturday May 26th.

I woke up on May 27th, after only 5 hours of sleep and felt like I was 20 years old again!! After so many years of fatigue I looked forward to using the machine every night.

Just go with it. Accept it and that it will change your life......The first week I went from 5-6 hours of sleep to now (after almost 2 weeks) I am now up to nearly 7 hours of sleep...Had a few difficult nights, but got beyond it.

It is truly a miracle. From everyone I've seen, most people fine tune it on their own to find what works the best - even then, I've increased the pressure (with a 30 minute delayed start time) and it seems to be even better.

for the first time the last two days 7 hours of sleep, and apnea of less than 2. It's not rocket science.....

[archangle]

You don't need a sleep doc, unless you can't change a light bulb on your own.

I did the online sleep study at home. Bought the S9; had it fedXed overnight, got it on Saturday May 26th.

I woke up on May 27th, after only 5 hours of sleep and felt like I was 20 years old again!! After so many years of fatigue I looked forward to using the machine every night.

Just go with it. Accept it and that it will change your life......The first week I went from 5-6 hours of sleep to now (after almost 2 weeks) I am now up to nearly 7 hours of sleep...Had a few difficult nights, but got beyond it.

It is truly a miracle. From everyone I've seen, most people fine tune it on their own to find what works the best - even then, I've increased the pressure (with a 30 minute delayed start time) and it seems to be even better.

for the first time the last two days 7 hours of sleep, and apnea of less than 2. It's not rocket science.....

For many people, it's nowhere near that simple. Lots of people DO need help to get it right.

[kaiasgram]

Thanks for saying that, archangle.

[zoocrewphoto]

Nan, you give me too much credit -- I'm not so brave, in fact I'm totally fear-based at the moment. It is only the image of the pine box (in other words, fear of expiring in the middle of the night and the feeling that I have no choice if I want to keep breathing at night and functioning during the day) that is keeping me going and fighting to get on top of this and to become friends with "the machine." But yes I am determined! Thank you again, I will be here for sure, trying to get and give help.

Courage is NOT a lack of fear, but doing something important despite the fear.

I have the same machine, and it was an excellent choice. It will allow you to review your data and make adjustments as needed to get it right. Not sure if all machines automatically come with a card or not, but it is a standard SD card. If you need to buy one, you can get one for about $10 at any Walmart or similar store.

[sylvie]

I like to put my challenges into little mental boxes in my mind and when the time is right for me, I pull one out and deal with it and if not finished, I put it back into its little mental box and tuck it away for later. That way they can't all team up on me and are dealt with on my terms. I prioritize them based on Importance and Urgency. I tackle the Important and Urgent ones first, then I'm left with the Important and not urgent. Nice! You can work on your own pace for sure on those. If they are not important (or I don't have any control over them) forget about em, and purge any notion of dealing with issues that are neither important nor urgent !

MaxDarkside, I love your advice. Perfect.

[MaxDarkside]

MaxDarkside, I love your advice. Perfect.

Thanks. Much of it is not mine, but what I've gleaned from studying Stephen Covey, Hyrum W. Smith (Franklin day planner), Tony Robbins and taking Dale Carnegie courses. Some of it I got from a management development training program at a large USA manufacturing company and later I needed when I started my own company and hoards of "issues" come at me from all directions at once, each screaming for attention. Such a philosophy/method of dealing with them is important to be effective and not have an anxiety explosion. Anyone faced with seemingly overwhelming issues should get to know the names above. I suggest looking them up and maybe reading some of their books.

The Important / Urgent part came from here:
http://en.wikipedia.org/wiki/First_Thin ... %28book%29

[wagepc]

I had a similar experience -- had a sleep study which managed in another state. The doctor there diagnosed the apnea, and I could have just gone along and taken whatever treatment they prescribed; however, I like to have a LOT of information about stuff like this, and I wasn't getting any medical feedback other than the statistical report, which I requested.

So I found a sleep clinic where the doctor is IN Even so, in the end I had to lobby for the machine I wanted (ResMed Autoset s9.) Also, the doctor in the second clinic said the group that ran my initial sleep study is not accredited.

My mom used to say, "Free advice is worth exactly what you pay for it." Furthermore, she didn't give advice unless one asked. I believe you've asked for advice, so here goes:

First of all, feel free to let go of anxiety. You have a huge support team here with folks (other than myself, a newbie) who have vast experience. Knowing that you have sleep apnea is a giant step toward getting better. But the bigger step is the one you've already taken: asking questions about what to do next. You're obviously committed to getting treatment.

Second, be your own advocate. Figure out what you need and don't be afraid to ask for it. This is your health, and no one knows better than you how you feel.

Good luck!

[Maxie]

The links at the top of the page are very helpful, especially the one on dealing with change. The post on change was one of the first things I read on this forum. Sometimes the change is the hard part but with the support and encouragement from people on this forum I feel that I am adapting quite well. I do have short periods of about 5 minutes of despair when I think I can't handle this but thankfully the despair periods are brief and getting less frequent. I think as you move on and see how much help and support you can get from this forum your anxiety level will continue to go DOWN! I also think it's important for you to keep posting your progress so you can receive encouragement and also to mark your milestones as you move forward. Best of luck!

[Pugsy]

Okay, I think I have a grasp on your situation now.

SleepyHead has a Mac version available. See the links in my signature and be sure to read the "User Guide".
To use ResScan on a Mac you need to set up a Windows environment and no sense in doing that work if you don't want to.

As long as you have plain vanilla OSA there is no reason why you can't learn what you need to learn to manage things adequately yourself. The machine is easy to set up and use. It is a rare person who can't manage that part.
Evaluating your reports....will seem overwhelming at first due to all the different graphs that are offered but you really only need to understand AHI (breakdown and what it means), leak line graphs (stay under 24 L/min and you will be fine) and the pressure line graphs. Put all the other stuff on the back burner for now.

I have a little tutorial of sorts started and a link for it is in my signature. I think a lot of your questions will be answered there. If you have other questions we can sort them out as they come up.

Pressure settings of 6 cm minimum and 10 cm maximum are very modest pressures. EPR of 3 means that the pressure will drop on exhale 3 cm but at the minimum pressure of 6 it only drops to 4 cm because that is as low as the machine will go.
No problem unless you happen to feel like you are suffocating because for some people that just doesn't seem like enough air movement for comfort. While we won't suffocate it sure can feel like we are. Easily fixed if that presents a problem to you. I don't know if any of your anxiety is related to that or not but just thought I would mention it.

APAP maximums.....just a ceiling for the pressures and unless the maximum is repeatedly reached for some reason they are a non issue. It is the minimum pressure that is the most critical setting to evaluate. APAP mode doesn't increase the pressure in a blink of an eye, instead it goes up in stages and if it takes too long to get to where it needs to be then the events come and go while the machine is increasing the pressure. So we give the machine a bit of a head start with the minimum. At your prescribed settings the low shouldn't be an issue because it appears that your pressure needs are not that great (you are lucky). If you happened to need say 16 cm pressure to deal with events then that 6 minimum might be too low.

So for now...get the provider manual for the S9 Autoset. If it doesn't come with the machine you can request it here
http://www.apneaboard.com/adjust-cpap-p ... tup-manual or send me a private message with your personal email account and I will send it to you as email attachment.

Let's get you comfortable with the machine and its functions...get you some sleep so you have some reports to evaluate and then work from there.

Mask fit and comfort are really the hardest part to all this therapy. If leaks and discomfort disrupt sleep then we don't have good sleep for the machine to work its magic on.

Bear in mind that your minimum pressure of 6 cm and any EPR might seem like there is not enough air movement...so even if your pressure needs are indeed minimal that the comfort factor of air flow may not be ideal. It depends on the person.
So if you experience any anxiety due to "suffocation" feelings then you might benefit from a little more minimum pressure just for comfort (even if not needed for apnea events). Pretty much any problem you might encounter has been met by someone here on the forum so don't feel alone.

A word about centrals...we all have a few here and there. This is normal. They are only an issue if they present themselves in large numbers consistently. We cross that bridge if/when we need to. No sense in worrying about them unless there is a need.

[pats]

pats -- Wow, I should have moved to San Diego before getting sleep apnea! Your experience sounds light years better than what happens up here (Sacramento area). I even asked the RT, after starting into a panic attack when he put the nasal mask on me and fired up the machine, "Aren't there some different types of masks I could try?" to which he replied no, and "you'll get used to this." I could see online that he read the email I sent him during that titration week, but he never replied. I am considering calling Member Services about all this, but I wanted to get my Rx in hand first. When I told my primary about my experience with the sleep medicine dept and how awful it was, she said "It was even worse three months ago."

One silver lining about not having DME covered in my Kaiser plan is that before I even turned the titration machine back in I was online researching cpap.com prices and calling them for info about how to order equipment and accessories. When I brought the titration machine back to the hospital I included a downloaded cpap.com prescription form with fax number and a very nice note asking them to fax the Rx right away, which they did -- though this also required several calls from my primary in addition to my own efforts. At least I won't have to wait weeks for a prescription (the Kaiser info sheet you get at the beginning of titration says the process can take up to six weeks). My equipment is being Fed-exed and I should have it tomorrow.

Maybe I'll ask for a Provent prescription and see what happens! Thanks for your post.

In my case a printed prescription, with a copy of the sleep study reports, arrived in the mail within days of the end of the titration study.

I think you should contact member services about the non-reply to e-mail.

Also, here are a couple of tips for dealing with Kaiser:

1. Be specific about what you want. If you want to discuss your treatment with your sleep doctor, call the sleep clinic and ask for an appointment, explaining that you have questions about your treatment.

2. If all else fails, remember the magic words "I want a second opinion". It's not something to over-use. I've used them twice, during well over a decade as a Kaiser patient. Both times, the result was a consultation with a specialist who changed the treatment plan from the original recommendation to what I thought would be better. In one case, I was disagreeing with something my PCP had recommended. I am still on very good terms with her - she did not seem to resent the request for a second opinion, and my current treatment for the condition is question is the one the specialist recommended.

Of course, following either tip will cost you whatever your plan charges for an office visit.

Kaiser does save money by applying mass-production assembly-line techniques to common conditions. Before my home sleep study the RT explains that if the results were really clear in either direction, she would be able to give us results immediately. My results were borderline between treating and not treating, so I had to wait a few days for a doctors' meeting to review them. Sleep doctors generally make their decisions based on the results of sleep studies and titrations, along with medical history, not on physical examination of the patient, so Kaiser sleep doctors sign off on X-PAP prescriptions without having necessarily seen the patient, just the study results and medical history.