Hi Everyone .... I'm a Newbie with questions

Hi everyone,

As the subject line says, I'm new here. Hope my post is not too long-winded here.

I'm trying to get up-to-speed with all the terminology, etc. concerning apnea and the use of CPAP machines. It feels like a daunting task right now due to exhaustion and illness. Judging from some of the posts I've read here, you all know how that is!

I was diagnosed with late, fully-disseminated Lyme Disease a year ago and have been in treatment ever since. I went a long time before finally getting an accurate diagnosis of lyme. My primary care doctor and my Lyme doctor both feel that apnea is an issue for me due to this illness. As it's been explained to me, the infection can affect (or damage) the 10th cranial nerve. This nerve controls respiration. Evidently the Lyme can cause central sleep apnea because of this nerve damage. Also, the infection causes inflammation that can result in obstructive sleep apnea.

I know I've got a problem with sleep. I snore and wake myself up from not only the sound of snoring, but also from feeling my throat close off. My lungs also stop inhaling and exhaling. My poor husband is now waking me in the night when he happens to hear that I have stopped breathing. It's almost like my confused body thinks it's in some sort of contest for holding breath.

I have an order from my doc recommending a sleep study for a split night study.

Do any of you have any recommendations or experiences you could share on split night studies?

Is the split night study the sleep study of choice? Do you think I might be able to get more evaluation done doing the split night study as opposed to another approach?

I'm pretty much housebound right now due to my illness and feeling so sick. The thought of schlepping out for a sleep study is not a fun one, I must admit. I've been procrastinating on scheduling. If at all possible, I'd like to be able to get as much done with as few visits as possible. I'm expecting alot, aren't I? lol

Due to being misdiagnosed for so many years and become quite ill with the Lyme, I've developed a big distrust of doctors. I'm so afraid that any sleep doctor I see will be a disappointment or not up to the task of doing an evaluation.

Is there anything I should look to (or for) when meeting with the sleep doctor? Any special questions that I should ask in the beginning that might let me know the doc is ok or good?

In addition to my questions on whether the split night study is the best one to do and
my question on what I should ask the sleep doctor,
I have one more question, please.

Until I have my study done, I suppose there is no way of knowing what type of apnea I've really got. I'm assuming I've got both obstructive and central. But .... I don't understand how a CPAP machine would help someone with central apnea? The machine presumably can't make a person's lungs exhale and inhale, right?

How do the CPAP machines help the central apnea?

Thanks ever so much in advance. I apologize for the lack of organization in my post. Brain fog and fatigue has made writing kind of a challenge on some days!

I welcome all suggestions and advice.

Lymed

I can't answer your questions but you can start reading here - hope you can find something there that helps

viewtopic.php?p=22702

Jules, thanks very much!

Lymed

Hi, sorry you're feeling so awful. I know Lyme can really hit a lot of areas and do it to you. As far as centrals go, first you should know that when the study is done, a lot of us (if not all) have a few showing up on the report, but that doesn't mean we "have" central apnea, as centrals can often be seen when we first nod off. But even if you do 'have' them as a major diagnosis, there is a machine that's used just for that, just has a different name, so don't worry about it. Sleep studies, however, are not always pleasant - nothing will hurt, but they can be somewhat uncomfortable as you will be hooked up with various electrodes, etc. and then told to sleep possibly in somewhat noisy areas, possibly in positions you're not always used to (back vs front) as they're trying to find out what the worst readout on you may be (back sleeping is not good for apneas as more are usually produced, but they need to know how many). You may also have a hard time just trying to fall asleep, and/or feel you haven't slept a wink all night, but most people who think that in fact do sleep long enough for the test to register anything that matters. The split night is about - night one for general testing to see how many apneas you get in what period of time, and night two is to try sleeping with a mask (or masks) on to see how well the xpap (generic for Cpap) works and to what level of air pressure to set the machine to for everyday use. That may well be subject to change in future, as will what mask ends up being the best fit, the least 'leaky' (of air), etc., but that's really all the split business means. Your best bet is to go into this whole process (not just the study nights) without preconceived notions of anything - I'm sure you can hear stories that'll make your hair stand on end , but the vast majority of us manage not only to muddle through after a short adjustment period, but find we never, ever want to sleep without our machines again - not just from the intellectual knowledge of how it can save our lives, but there are psychological aspects (everyone's different) that can make it one of your personal 'routines', an interesting learning experience, and often even fun - especially if you continue hanging out on this forum!

WOW - you have a lot to contend with.

I can't answer all of your questions, but I do have some things for you to consider.

A split night study is one where if they determine early enough in the night that you have Obstructive Sleep Apnea (not sure what they do if you only have Central Apneas), they introduce C-PAP to try and determine the pressure you need to prevent these apneas. If they introduce C-PAP, you will be awakened in the middle of the night and you will have to relax and go back to sleep with a strange mask on your face. For me, sleeping at the sleep clinic was not too much of a problem (I think only because I was so exhausted I could sleep under almost any circumstances). Some people have trouble sleeping in the sleep clinic and they do not "clock" enough time with evidence of OSA for the tech to introduce C-PAP the same night. In those cases (and sometimes if a split night study is not ordered), if the patient has OSA, they have to go for a second study in order to determine a titration pressure.

Personally, I desperately wanted a split night study for 2 reasons:
1. I wanted to avoid the extra expense of a 2nd night in the sleep lab. Even though it was covered by insurance, it is quite expensive (or perhaps I should say ridiculously expense).
2. I didnk't want to spend a second night at a sleep lab if I didn't have to (not to mention the additional time before getting proper treatment at home).

However, for some people who have trouble getting any sleep at all, a second night may be needed. Unfortunately an incompetant sleep lab may even recommend a pressure with less than adequate time and results on C-PAP. Regardless of how much time you spend on C-PAP in a sleep study, I HIGHLY RECOMMEND you tru to get an auto adjusting PAP when you get a prescription from your Dr. This will allow you to get the optimal pressure when you're at home, relaxed, and sleeping in your normal sleeping environment.

I think most here will tell you it is WELL WORTH IT to have the sleep study done and get on PAP therapy if it is determined it can help you. Getting good rest will make a HUGE difference in how you feel each day. It is also essential so your body can heal! There are some docs that are willing to do an in-home sleep study. The information they can collect in home is not as comprehensive and I don't recommend it, however it is an option if for some reason you just can't get in to a sleep lab (it's certainly better than doing nothing at all).

I can't help with your other questions, but I'm very interested to see the replies you get from the very helpful people on this forum. You've come to the right place to lear more about OSA and everything that relates to it!

I wish you the best! Come here with any questions and keep us posted!