Any atypical sleep apnea people out there?

[Midwest_girl_in_an_E]

So I just had a visit with my internist this morning to discuss some concerning sleep issues. My SO notice a couple of nights last week that I was taking shallow breaths, then stopping breathing for a few seconds, then would take a gasp, and then would shallow breathe again. He didn’t know what sleep apnea was and offered this information to me without me asking–I hadn’t had any supsicisons.

I’m in the medical field and I know I’m not the typical sleep apena patient (30 yo, F, not obese), but I felt a little disconcerted when he seemed to brush off my concerns during my appointment today. He didn’t ask about my sleep habits and didn’t seem concerned that I have been really feeling crappy and unrested in the morning for months.

He basically said, “you aren’t the typical patient they teach us in medical school, but if you want the sleep study, I’ll send you.”

I guess I’m just wondering, are there any other nontypical sleep apnea patients out there? Am I really looking for the zebra in this situation?

[tarynls]

Yes. DH has central sleep apnea. He would take shallow breaths, stop breathing for over a minute, then start gasping & coughing…repeat, repeat, repeat.

Had 2 sleep studies and found a great sleep doc (actually a pulmonologist/critical care doc with a special interst in sleep). Doc explained that the more common form of sleep apnea is obstructive sleep apnea, & those patients are likely to be overweight, have a large neck circumference, etc…

However, in central sleep apnea, your brain is not correctly sending the signals to your muscles that ensure you keep breathing while you sleep.

Here’s a brief overview: http://www.mayoclinic.com/health/sleep-apnea/DS00148

Central sleep apnea: http://www.mayoclinic.com/health/central-sleep-apnea/DS00995

DH sleeps with a bipap machine (cpap was tried first but was not effective). The machine has a card in it that we take to the doc’s office every few months - they download the info off the card & let us know if an adjustment in pressure is needed. It’s amazing the amount of detail the machine records - it relays to the doc the number of minutes DH was in REM sleep, deep sleep, etc. If DH hasn’t initiated a breath on his own in X number of seconds, it also “knows” to deliver a breath via pressurized air through the mask.

Having said that, those cpap & bipap machines are NO FUN. The masks must fit pretty snugly so air doesn’t escape as they work by delivering pressurized air through the mask. DH would gladly throw the machine out the window if I let him

Find yourself a doc with a specialty in sleep medicine and get thee to a sleep lab! If you’re feeling tired and generally not well rested, there is always the chance you could fall asleep while driving. DH used to have to pull his truck to the side of the road and take 10 min. naps between stops (he’s a farrier).

[Midwest_girl_in_an_E]

Thanks tarynls. The internet has been very useful the last few days to do research, but personal experience is always great too. Did it take your husband two studies to get diagnosed or was the second one for titration of his breathing machine?

I’m worried about central sleep apnea, but was just really discouraged when I basically got brushed off by my internist. The more I read and think about it, the more I realize that I’m more tired daily than I think (trouble keeping eyes open in conferences, not reading journals in the afternoons to keep from getting too sleepy). And those are the kinds of things my doc should have asked about but didn’t really seem to care.

I think I’m going to trust my gut on this one, and get the referral to a sleep medicine specialist.

[tarynls]

The first sleep study, they woke him up in the middle of the night and put a CPAP machine on him.

The data recorded after the CPAP was put on made the sleep doc realize he might be dealing with central SA, so the second sleep study was done with him wearing a bipap machine the entire time.

Much bettter data while wearing the bipap = confirmed diagnosis of central SA.

One thing that was a real eye-opener: every time you stop breathing, then start with the gasping/coughing, etc… that response is actually your body waking up and realizing you don’t have enough O2.

In DH’s case, during the first sleep study, he was waking up 40+ times an hour. At times his O2 blood sats would be in the low 60’s. Not actually waking up and being alert, but the study showed he was no longer in deep or REM sleep. That’s why they put the CPAP on him in the middle of the night.

ETA: Might be helpful to start keeping a journal now until your appt. with the sleep doc - what time you went to bed, what time you wake up & how tired/sleepy you feel at various times during the day.

Also ETA: The titration of the machine was figured out by bringing in the data card from the machine. Doc would download the info off the card, look at it right away & have the resp. therapist come out to change the pressure settings if necessary (we could have done it ourselves but that would have voided the machine’s warranty - and they are not cheap, even with insurance!).

[RMJacobs]

I’m glad you decided to go ahead with the sleep study. The tech who did mine told me there are lots of people who don’t fit the typical profile for obstructive sleep apnea who have it nonetheless, or have another form.

Unfortunately I fit the profile just fine. Getting my CPAP turned my life around. I was doing all the things described above–couldn’t read in the afternoons (broke my heart!), had to pace during meetings at work, and driving was just awful. I got a lot of weird looks for driving with the sunroof and all four windows open and the stereo blasting in the middle of a Colorado winter, but you do what you have to.

My husband hates my CPAP (between that and my wrist splints, he says he sleeps with Darth Vader). But I say tough, because I’m sure stopping breathing 70 times in an hour was going to kill me one way or another.

Best of luck with your sleep study, and you might want to consider changing doctors!

Rebecca

[sdlbredfan]

Definitely get a new Doctor, and see a specialist. My DH also has the central type of sleep apnea. IMO, it is not necessarily ‘rare’ so much as under diagnosed.

[Bacardi1]

Hubby had sleep apnea. I noticed him stop breathing in the middle of night several times & nudged him to wake up. He did an overnight sleep test at a hospital & ended up with a C-pap machine. But - amazingly enough, at the same time he went on a diet & exercise regimen, & after losing some weight, the machine & his apnea disappeared. Something to think about.

[Midwest_girl_in_an_E]

Thanks everyone for the insights and support. I’m in the process of getting an appointment for the sleep specialist and the study. I think it’s the only way I’m going to really know what I’m dealing with. I’ll definitely keep the comments on the different machines in my thoughts.

I’m 5’11" and about 165 lbs…could I stand to loose a few pounds-sure, and I have lost about 10 this year. However, I just don’t think the obstructive type is my issue and I’m going to have to keep fighting the fact that I don’t match the "profile".

[Du_Hast]

Hi
I was diagnosed with mild sleep apnea/hyponea and severe RLS. I was concerend it was central just cuz of the RLS involvment. So I went to a sleep center had the study done for diagnosis and then came back a week or 2 later to do a second study for titration. My machine was an autopap, it automatically adjusts the airflow and mine had the card that kept track of everything. I hated the darn thing. I was constantly woken up by water drpping into my mask from consendation in the hose. I tried and tried to figure out a way to stop th consendation including using a fleece type hose cover, to no avail. I eventually quit using it. Ive lost 30 pounds after a change in medication and I feel like my apnea has resolved.
Interestingly my doc told me being overweight can cause it …but so can palate conformation.,
Ive read that the best thing to do is try as many different masks as you need, just keep trying them until you find one you like.
best wishes
Du

[Chall]

It seems to run in families. I think its way under diagnosed.
Imo it’s a stressor to the heart, and blood pressure. Good for you going for the test.

[back_in_the_saddle]

Imo it’s a stressor to the heart, and blood pressure.

Not just an opinion… stressor to the heart is a proven thing.

What kind of medications is your dh taking? I had these problems when taking something for allergies. (can’t remember what it was now)… one pill a day something… singulaire? Is that a small pill? What ever it was, it caused me to have a flat mood.

[LotsofSlots]

I do sleep studies. Yes, you do not have to be over weight to have it. I have done thin people who are in great shape who had it. You do not even have to snore. You said that there is witnessed breathing problems. You said you are tired and feel lousy during the day. Get a study. Do you have a headache in the morning? how do you feel when you wake up?
There are too many problems associated with Sleep apnea to ignore it.

[Midwest_girl_in_an_E]

[QUOTE=LotsofSlots;5948524]
I do sleep studies. Yes, you do not have to be over weight to have it. I have done thin people who are in great shape who had it. You do not even have to snore. You said that there is witnessed breathing problems. You said you are tired and feel lousy during the day. Get a study. Do you have a headache in the morning? how do you feel when you wake up?
There are too many problems associated with Sleep apnea to ignore it.[/QUOTE]

I’d say for the last six months or so I’ve been waking up saying I feel like I got hit by a truck. No headaches daily, but my Thygeson’s is worse, and my SO says I’m much grumpier in the morning. I’ve even found myself too tired to ride (I never thought that could happen!) The more I think about it, the more things I think of that could be related. I even had a full blood workup of my hormone levels a few months ago for low libido and am now realizing that it could be releated to lack of sleep!

Lotsofslots–I keep reading that older age is also a factor. Have you seen many patients in their early 30’s?

[RMJacobs]

Another symptom that surprised me is having to urinate often during the night. I thought nothing of getting up three to five times a night. I mentioned it to a nurse I knew, and she said it was most likely due to my kidneys reacting to low oxygen, and to get my butt in for a sleep study immediately.

Sure enough, I no longer get up to pee at all during the night unless I’m really congested and my CPAP can’t do its job.

I do have a full face mask for when I’m congested, but I detest the thing and only use it if I am very desperate. During allergy season when I start to clog up, I usually sleep with a hot water bottle under my neck to try to keep my sinuses open, but sometimes that’s not enough.

Rebecca

[flashwhitelock]

LOVE MY CPAP. LOVE MY CPAP. Did I really shout love my CPAP. Yeah, took 3 months trying different settings, machines and masks but oh, once it was right, WOW. If you don’t fit the profile that doesn’t preclude apnea (or other things) Definitely get in for a sleep study and find out. It’s worth it to get your life and your energy back. Be aware even the type of machine affects how it works. Different machines have different algorithims for exhale relief and may not jive as well with your exhalation. Good source of info is the American Sleep Apnea Association. hunt around on their website and they have a great discussion board.

for anyone who can’t get their docs to consider apnea, think about getting a inexpensive pulse oximeter that will record your oxygen during the night. They are pretty cheap (75) and can be read on your own computer and printed out for your physician. Oxygen sats should never be below the 90% mark. Anything below warrants investigation. Once the doc saw my oxygen saturation, he sent me for a sleep study. Low and behold, I was right and had severe apnea. So much for not fitting the profile. Prior to that everyone attributed the problems to chemo, lyme, depression, possible esophageal tumor an d menopause. All previous diagnoses were wrong and it did turn out to be the apnea. I’ve had it all my life and never known. It became worse with weight gain but it’s definitely genetic with way too small a nasal passage and palate.

[Tiki]

I have sleep apnea and I’m not overweight. Couldn’t stay awake during the day and couldn’t sleep at night. The first CPAP machine I had, I loved. Got the script for it and was sent to a medical supply place to get it filled. The guy there said he had a type that most SA patients liked much better than the one written for, but it did the same thing, so that’s what I got. Finally, after about 9 years of using it, I couldn’t get the tubing for it anymore. Went back to the sleep lab to see what to do and they insisted I have another sleep study to see if I still had SA. Yup, I did. They prescribed a new machine and it was dispensed by the respiratory therapist at the hospital. Unfortunately, I got a prima donna queen of an RT who knew better than any patient what they needed. I HATE this machine, but I use it every night anyway as I really can’t sleep without it. Oh well. Sleep apnea sucks.

A word of caution. If you have ever been diagnosed with SA and you choose not to use your CPAP or BiPAP machine and are ever in an auto accident and someone finds out you have SA and don’t use the machine. Trust me!! You’re found at fault in any case of injury. Your insurance company won’t pay for damage to your car and NO ONE will pay your medical bills!!! It is VERY possible to fall asleep driving without even actually feeling sleepy. You just go to sleep.

BTW, they said my SA is not typical. My machine has a dial with which you can control the amount of humidity coming through the tubing. If it starts dripping all over my face, I just turn it down a bit. It has a heating element on it that is required to be on for any humidity to come through. The old machine I had just bubbled room air through the water reservoir. Liked it much better. The old one matched my breathing rate better and would force a breath if I stopped breathing. The new one just goes on at it’s own rate - which is not mine.

[Wraper2]

I have what is called complex sleep apnea. Both obstructive and central. My AHI (how often I stop breathing) is 71.3 times an hour. “outrageously high for a male, much less for a woman” (women usually have lower AHI than men)

Got my scrip filled at a medical supply center. It is a resperonics REMstar auto. It self adjusts to how much pressure I need to open up the air-way. LOVE it!!

I use nasal pillow instead of a mask, it is way more comfortable to me.

Go get a sleep study, especially if your insurance will pay for it. It will not hurt you, but could very well save your life!

As a side note… I have heard that people that use cpaps regularly and then stop have been know to ~not~ wake up. Apparently the body relies on the cpap to get air in and does not wake it’s self up. (not sure how true, but have been told by drs and nurses)