My primary pulmonologist is a sleep disorder specialist. He thinks I have a sleep disorder. This is sort of akin, to me, to my cardiologist thinking I have a heart. Or in other words, when all you have is a hammer, everything begins to look like a nail.

It’s not that I’m disagreeing with him about having a sleep disorder at all. It’s just, he thinks I have obstructive sleep apnea and I do not think I have obstructive sleep apnea. Again, though, I’m not saying I don’t have a sleep disorder. The problem is, OSA can be treated with a CPAP machine, but some of the other sleep disorders are actually worsened by a CPAP. So let’s look at some honest-to-goodness facts.

Sleep apnea can cause: snoring, waking up gasping for breath, sleep arousals, waking up unable to breathe or feeling like you’re suffocating, excessive daytime sleepiness, irritability, waking up feeling un-refreshed. It can cause some other things too, but I want to focus on these, because these are usually the symptoms that send a person to the doctor, either because they noticed it or their spouse or partner noticed it.

Now, let’s consider this: I have several people who can confirm that unless I have a cold or am really congested, I don’t snore. Even when I’m really congested, they tease me and say my snores are ‘cute’. My son is the one most likely to make fun of me for this light snoring, but it happens very, very infrequently and is always related to a cold or sinus issue. I do not wake up gasping for breath, ever. Once I am able to get to sleep, as long as I don’t need to pee from the fluid retention, I do not show any signs of sleep arousals (and the EKG I had during the sleep study confirmed that). I don’t wake up feeling like I’m suffocating or can’t breathe. I rarely, if I have slept, wake up tired or have excessive daytime sleepiness. I do sometimes feel physically exhausted, but that’s my body being tired, not ME needing sleep. It’s not the type of tired that requires sleep – it’s more like the kind of tired your body feels after a workout, exhausted, a little achy, but not sleepy. I don’t nap frequently (only when I haven’t slept the night before–I sometimes have trouble FALLING asleep, just not staying asleep). Most of the time, I’m not irritable… unless you’re my son, then you’d probably think I’m a little cranky, and lastly, the folks who sleep with and around me or who have watched me sleep all say the same thing–I don’t stop breathing in my sleep, though they all also say I breathe very shallowly and rapidly during REM sleep.

Here I was, going along fine, and suddenly, my doctor thinks I have a sleep disorder and he’s willing to bet me that all of my problems, every woe I’ve had for the past seven years is due to this sleep disorder.

Well, my reaction to this was mixed. 1) it would be really wonderful if it were really, truly that simple and 2) I really don’t think this is a sleep disorder causing all my woes.

I know my body. I can tell you when something isn’t right and I’ve always been right. I can tell you by how I feel whether my PT/INR is low or high–and I’ve been right every time except one (and there was a reason for that one, we found out later). I know when my blood pressure is high, based on how I feel. I know when my blood sugar has dropped low (I never go high but sometimes I do go low). I can tell when I’m getting a cold before I show a fever or symptoms. Back when I still had a menstrual cycle, I know within hours of when I would start based on how I felt. I know how certain foods affect me and make me feel. The point being: I know my body. I know it well. We are in synch, my body and I (though we are rarely in agreement).

So when he said I had a sleep disorder, some part of me wanted to believe him and to hang my hopes that this would improve things for me. After all, I’ve watched my ex boyfriend, Mike, struggle with apnea that he refused to treat, and he was miserable. I’ve watched my mother’s second husband go from a cranky, tired, sick man to being a cranky, well-rested, well man who didn’t have to take naps any more. The CPAP probably saved his life. The cancer, though, didn’t do too much for him. I’ve watched my best friend drastically improve and have fewer migraines, more energy, better skin and hair, need less thyroid meds, and overall feel better when she got on her CPAP therapy.

All this to say: I WANTED THIS TO WORK!

So fast forward to the titration study, the night I spent at the sleep center to determine my numbers. First, my nose is tiny. He had a small nasal pillows, but even they were too big and leaked. (I’m currently using the xtra small, and they still don’t fit perfectly, but the large pediatrics are probably too small–le sigh). None of the full masks would seal, all too big for my face. Finally, we got a mask that would ‘work’ though it leaked, and then I tried to fall asleep. It took me about an hour, and that was on a night I was really tired. The mask kept sliding just a bit and leaking air into my eyes. It was awful. He had to feed oxygen through the machine to me too.

Finally fell asleep, managed to get about three hours. Around 3am, when he increased the pressure to 8.2, I woke up from the inability to breathe. I literally could not breathe. Woke up gasping for air. Woke up startled and scared and disoriented. Adrenaline rush. Confirmed PVCs on the monitors. Could not go back to sleep fully. Started to doze again around 4am. He turned the machine up again, and instantly, I was gasping for breath.

SEVERE RESTRICTIVE LUNG DISORDER

Now, when I took my pulmonary function tests, I had a diagnosis come back of severe restrictive lung disorder. My exhilation was poor. No, really? Well, so was my inhalation, but exhaling was actually hard for me. I would exhale fine, but not with a lot of force, so the machine wouldn’t ‘sense’ I was still exhaling and would start to push air through me, thinking I had stopped breathing. This, in turn, prevented me from taking in a full, deep breath. So then I’d take in a breath, and start stacking the breaths on top of each other, but I don’t have fresh oxygen reaching the lower lungs ’cause old breath is still in there, un-exhaled.

I tried to explain all this to the tech that night, but I honestly don’t think some of these techs know how to do anything beyond the rote routine they are taught. Anything outside of those standards requires something they don’t teach them. Don’t get me wrong, the guy was nice, but he didn’t seem to care one bit what I was telling him.

For three days after the sleep study, my chest ached, a deep, lingering ache that really bothered me and made breathing ever so slightly painful.

FAST FORWARD TO TWO DAYS AGO

So yesterday or something, the med supply folks came to my house and dropped off the CPAP for me. It’s an okay one, especially considering they aren’t charging me for it this month while we’re pending insurance changes. These folks rock.. you have no idea how helpful they’ve been through all my medical crap. I can’t say enough good about them. Anyway, they dropped it off. I had been up all night the night before, so I was going to take a nap and decided to try it. First, the ramp wasn’t working –we finally ‘broke into’ the machine’s clinician side and set the ramp–but I slept for six hours with the CPAP. During that time, I woke up about once per hour, around the 30 minute mark or around the 45 minute mark. 30 minute mark would put the ramp at around 8.0. That’s what I finally determined last night – once the flow gets up to 8.0, I can’t exhale out hard enough against the airflow to fully exhale. After about three or four breaths at that rate, I have to open my mouth and take a big deep breath in and a big deep breath out in order to not feel lightheaded and like I’m going to pass out.

I tried it again last night, and experienced the same thing.

I woke this morning, at 10:30, which is super, duper late for me! I’m almost always up around 6am, if for no other reason than to pee and go back to bed for an hour or two, and then I’m always up by 9am if I do that. But to sleep through to 10:30 shows just how exhausted I was. I woke up groggy and my head was pounding. My eyes were watering (something that we don’t know why it happens but that happens to me when my sats drop), and I was in a pissy mood. I mean, yelling and snapping at both my dog and my son this morning–something I don’t usually do, at least, not to the dog.

I have been in this fog all morning, exhausted. I’m sooo sleepy I can barely keep my eyes open. I wanted to lay down and take a nap, but I have  PT/INR this afternoon, and I haven’t had one in over a moth, so I absolutely must go, can’t miss it. If I fell asleep now, I wouldn’t wake, I know it. That’s how exhausted and tired I am, both.

CPAP CAUSES SLEEP APNEA?

So what ended up happening is, I didn’t have a single symptom of sleep apnea, but last night and the time before and at the study, I used a CPAP machine, and had all the symptoms of sleep apnea. The tech told me also that I was showing apnea events EVEN WHILE AWAKE! I was awake, by the EKG and was even talking to the tech, and I was registering apnea events. Now, that might be apnea, but that is NOT a sleep disorder when I am awake!

I did some extensive research this morning and I learned that if you use a CPAP when you don’t need one or if you use a CPAP at a titration that is too high for you, it can actually CAUSE something called ‘central events’, or in other words, central sleep apnea. Is it possible that this machine, because I really don’t think I have sleep apnea, is causing me to have sleep apnea? I sure do have all the symptoms of it now.

But the absolute worst part of it is that my chest is killing me. There is this dull ache, painful, like a muscle ache almost, all the time. Taking a deep breath in hurts. Additionally, since using the machine, I’ve started getting this cough, that kind of tickles at the top part of my chest, not quite into my throat, but when I cough, it hurts, but doesn’t clear anything. Not really a ‘dry’ cough, exactly, but a cough. The headache is probably the worst of all of it, and I’ve had it now for two days, and pain relievers aren’t taking it away.

WHAT DO I DO?

So I have an appointment with a sleep specialist that my pulmonologist who specializes in sleep disorders has set me up with. I won’t be seeing him until the end of May, so I have about a month to play with this, but with all my other health stuff and seeing as how lousy this machine is making me feel, how long do I give it to get better before I say, “Screw it, I need to sleep well again…” and go without it? How long to I give it a chance to work? What do I do? Do I need to request another sleep study and maybe go to a different tech or different sleep center? Do I need to just suck it up and use the machine, even though it’s making me miserable? What about the pain in my chest… I’m thinking that is worth looking into, but all they tell me is that machine is ‘inflating my lungs’ and that they haven’t been inflating that much, so it’s bound to be ‘uncomfortable’. But it’s not uncomfortable–it hurts. There IS a difference. Do I go to the ER for the chest pain and let them look at it, since the doc doesn’t think it’s important or do I make that appointment and force him to look into it? Either way, it’ll cost me a fortune without insurance. Do I just wait and see what the specailist says in May and either use or stop using the CPAP until then?

Tell me, my friends… what do I do?

 ~~~

I know my doctor and my family were putting such high hopes on this being the answer to my issues, to being at least a big piece of the puzzle if not the answer, but I can’t live like this. I have enough wrong with me, I don’t need a machine making it worse. I hate sleeping, always have. My mother says, even as a baby, I would lay in my crib for hours at night entertaining myself, always good and quiet, but not asleep. Even as a toddler, I’d get out of bed and join my parents late at night until 11 or midnight, and then finally fall asleep. I’m a late-night person who also likes early mornings by myself. I don’t like to sleep, but when I finally DO sleep, most of the time, I sleep well. Getting to sleep is the hard part for me, but once there, I don’t have a problem with my sleep.

But everyone was hoping this would be the answer. I sort of knew it wasn’t, but I was so eager to find solutions, I went along with this, hoping against hope that this would solve the problems, or at least, maybe, just maybe, improve them.

I never expected it would make things so much worse and so quickly.

What do I do?

Love and stuff,
Michy

 

PS: Want to hear something funny? I LIKE the CPAP set on about 5 when I’m awake with the oxygen fed through it. While awake, it really delivers the oxygen to me, deeply, more deeply than I can breathe on my own, and it clears my head and my eyes don’t water, and I feel more focused… that’s while awake and sitting up though. As soon as I lay down, I have a hard time exhaling against even the 5 setting. But sitting up, while awake, I like the CPAP.