Sleep Apnea

[DizzyMe]

I have heard a lot of people talking about sleep apnea here. I have had a feeling since my symptoms started that something happens to me during sleep.

If I am in a light sleep just dropping off I wake feeling as if I have forgotten to breathe.I have also had episodes during deeper sleep where I have woken with my heart racing and pounding out of my chest and a sense that something horrible has just happened.

I have a POTS diagnosis and wonder if apnea is common with this.

I mentioned it to my GP once and she dismissed it saying if I am not waking gasping for air needing to sit up to breathe then im ok, but i wonder, is it that obvious if you have it?

I feel silly bringing it up again with my GP without good reason but I do feel that I forget to breath and even get the feeling when I am awake at times too.

Any experience?

Melanie

[issie]

Plenty of experience. I have apnea. There are two types of apnea. One is obstructive and mostly happens because the muscles in the throat relax and close off the airway and you can't breathe. There is also another type, it is called central sleep apnea. In this type your brain doesn't tell you to breathe. You basically don't get the signal and you stop breathing.

Your doctor is so wrong in what she told you. The only way to find out if you have apnea is to have a sleep study. There are also other type of sleep disorders that can only be seen with observation by trained professionals. So many people get diagnosed with chronic fatigue, when in fact ---they just aren't sleeping.

What you described is also what I do without my CPAP on. Another clue -- Do you have a short neck? It's funny, but anatomy plays a big part in this. Everyone as we age muscles in the throat relax. It depends on anatomy and that person.

Sounds like something you could rule out/in.

[mkoven]

it's worth a sleep study. I have apnea, and love my cpap. I don't fit the stereotypical image. i'd complained of similar symptoms, but it took doctor number four to order the study. i no longer have nightmares that someone is trying to kill me, have fewer headaches, and lots more energy.

[erik]

Apnea was one of the first things my doc suspected when I described most of my symptoms. He ordered a sleep study which didn't end up happening, but I bought a Pulse-Oximeter with which to monitor for any crazy fluctuations during my sleep (you can't diagnose apnea without the full instrumentation though). I ended up seeing my very large heart rate increase with that pulse-ox and discovering the wonderful world of POTS! But anyway, the cluster of symptoms can be pretty similar so it's probably something worth checking out. I guess it makes sense since apnea is starving blood/ox supply periodically... like POTS is theorized to do to some extent with flow abnormalities.

[dianne.fraser]

Melanie

I'm glad you brought this up! I have respiratory symptoms at night when my illness is at its most active or severe. During a really bad exacerbation of my illness I woke at night gasping for breath as though my body had forgotten to breathe. At the time, I was too sick to get out of bed, and I just lay there expecting to suffocate in my sleep. It resolved after about a week of bedrest.

My doctor stared at me blankly when I talked to her about it, then she organised for me to be tested for asthma.... Nope, I didn't have asthma. To be fair to her, my dysautonomia was undiagnosed at the time and this was just one more symptom that made no sense at all.

Last year my night-time respiratory symptoms returned and were a little bit different. I was waking during the night feeling as though the muscles at the back of my throat had collapsed, blocking off my airway; also, as I was drifting off to sleep, quite a few times I became aware that I wasn't breathing. It really freaked me out.

I changed doctors during this period, and my new GP ordered a sleep study which showed that, at the time, I was having little hypopnoeas - nothing to worry about. My new doctor trialled me on Lexapro, and I found it really eased my respiratory symptoms. The morning after my first dose, I felt as though my breathing was easier all round, and I'd had no respiratory symptoms at all during the night. Of course, after about a week on Lexapro I'd developed insomnia (a common side effect) - I stayed on it for about 6 weeks, but stopped it because I found it too hard to keep working while I wasn't sleeping. I guess the Lexipro not only reduced my respiratory symptoms, but it also gave me confidence that I wouldn't suffocate in my sleep, and this got me through the rough patch I was having.

Re waking at night with your heart pounding and feeling as though something horrible has happened - it sounds as though you've been having night terrors. I got those when I started doing a lot of exercise after not doing much exercise for a while. I would actually wake with my heart racing, and leap out of bed, panicked - it felt as though there was an intruder in my room.... One of my nephews (he has a similar symptom profile to me) also had them when he was about 11 years old and he was doing a lot of exercise at a tennis camp.

To doctors who don't have much exposure to dysautonomia I can understand that these symptoms might sound improbable, but they're all perfectly logical when viewed within the context of autonomic dysfunction.

With best wishes

Dianne

[nmorgen]

Where I lived in the States there were several sleep clinics. Some run by neurologists and others run by pulmonologists. I'm sure that is probably pretty typical. Just do a search on the internet or look in your local phone book. They usually don't require a referral, if your GP isn't willing to give you one. It is worth looking into. I had a sleep study 2 yrs ago and mine was so mild that I didn't have to get a CPAP.

[blueskies]

If you think you have sleep apnea definately have it checked. I thought I had it for years before I went to my gp a couple of years ago now and asked to be referred for a sleep apnea test. He rolled his eyes -- he really doesn't get this and thinks I'm some kind of unbalanced mental case, I can tell. But he gave me the referral and I had the tests and they found that during my night of sleep I go from mild to severe sleep apnea levels. I also have severe bruxism. And have episodes of alpha sleep where I shouldn't (I don't really understand that but I think it means I'm sleeping lightly when in deep sleep cycle or one of the cylces. At any rate it shouldn't be there.

So there. To my gp.

I bought a cpap machine and for 6 months it became my favourite bed companion. It did take a few weeks to get used to it but I was determined to keep that mask on. And I got wonderful results.

Then I had an anaphylactoid reaction to a med and have had chronic urticaria since. All sorts of types of urticaria. One type I have is pressure urticaria. I can't wear the freaking mask anymore because the straps leave deep read marks which hurt on my face. And I"ve tried loosening the straps drastically. It still happens.

Every now and then I try the cpap but am still getting the same results so will just have to put up with sleep apnea until the chronic urticaria goes away. Nearly a year and a half later it's still with me.

Meanwhile I use a wedge pillow. It helps a bit by keeping me on my side. Apparently when I'm in my light sleep stage I'm on my side and that's when my apnea is mildest.

Is anything ever simple with this **** dys.

tommorrow I'm going to go see gp and ask him to refer me for an xray, maybe ct scan because I've had a really sore shoulder for a year which I've not bothered to bring up with any doc because of all the other stuff seeming more important. Now the pain has travelled down my arm and across my back and making my neck more painful than it usually is. I bet he gives me the 'eye roll' again. He never learns. Sigh. I just can't work out how, after all this time, he is so skepitcal of me having a serious illness. I intend to change gps, actually. It's just that he's been in the right location for me, easy for me to get there that I've been lazy about changing docs.

blue

[DizzyMe]

Thanks for the replies.I am sure I will ask for a sleep study then, even if, as blue says, they think I'm nuts asking.They really should know by now that this isn't all in our heads!

Thanks Again.

Melanie