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Please help me, central apnea or anxiety? I'm desperate.

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Raquel2 +0 points · over 1 year ago Original Poster

Hi guys, I'll start by saying I'm from a country that I think ignores completely central apnea. I'm a female, in my mid 30s, I'm fit, no health issues other than extrasystoles eventually (right now I don't have them).

The thing is that every now and then when I try to sleep I wake up abruply and the feeling is like if I "forgot to breathe", sometimes it happens a few times , sometimes quite a lot of times, if I finally make it to a more deep sleep I don't have this sensation anymore. When it happens sometimes I have like a little spasm in a leg or arm, and I make a little moan.

After reading about it I thought I had central apnea and went to a doctor, without any kind of test and just a few questions he told me I'm not "the typical patient " with apnea, and also I don't snore, and also he told me that patients with apnea don't wake up, its the partner who notice they aren't breathing. So I can't have apnea, what I probably have is stress and anxiety.

I wasn't happy with the little attention and visit another doctor who told me exactly the same . No snoring - no apnea and that patients with apnea don't wake up. And Lexatin was provided to me.

It isnt helping at all.

If it can help I made it to sleep with an oximeter, when I have the episodes my oxygen in blood goes down to around 80, even less, and my heart beat stays calm. I think if I had anxiety my heart beat should be high (but I don't know).

What I do know though is that my episodes are getting worst and worst since I'm afraid to go to bed.

People with central apnea please, are my symtons like yours? or you think it could be anxiety. Many thanks in advance because I'm desperate.

(excuse my English, is not my mother tongue).

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Sierra +0 points · over 1 year ago Sleep Patron

First, I am not a medical professional, just someone with apnea and have spent a bit of time trying to figure it out. From what you describe it sounds like you may have some heart issues and certainly having your blood oxygen going down to 80 is not normal. It indicates you are not breathing. These together could be indicators of central apnea. I have to disagree with the doctors that are saying you don't wake up with apnea. You may not fully wake up, but you can be aroused. There are events called RERAs that are Respiratory Event Related Arousals. Central apnea is when you simply stop breathing. There can be many causes, but one is low or erratic blood circulation. Your body depends on the CO2 level in your blood to determine if you are breathing deeply and often enough. If blood flow is slow it can make the control system unstable.

But, these are just thoughts on my part. What you really need is to get a sleep test to determine if you are having apnea events. This can be an overnight test in a sleep lab, or it can also be done with a take home sleep test kit. You bring the machine back in the morning and they review the data collected. Where I am, clinics often offer these home tests for free. You might want to do some searching as to which clinics may do this, and get a referral to the clinic.

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Raquel2 +0 points · over 1 year ago Original Poster

Thank you so much Sierra, you are very lucky to get the sleep test in your country if you want to. Here you only get it if you have obstructive apnea. When I mentioned central apnea I trully felt it was the first time they heard about it. They kept saying if you don't snore you dont have apnea.

I forgot to mention I was in the cardiologist as well , he told me other than my extrasystoles event, that can be common, I have no other issue.

What I do have is high blood preasure, what again they said its because of stress.

I'm a bit desperate, stress or apnea I'm in a massive lack of sleep and not being efficient at work, I can`'t take the car because I feel sleepy and I could be a danger to me and others.

I fully wake up, at least on a lot of my "non breathing" episodes, maybe there are some others that I don't realize.

In my country you don't get the test done unless a doctor says you must, I visited two and my both diagnose was anxiety so no test for me. They pretty much discarded me from the "I don't snore". Going to go to a third doctor, this time a neurologist instead a otorhinolaryngologist and cardiologyst and hope he will be understanding enough to say I need the test done. to confirm or rule out.

Forgot to ask if you guys snore? both doctors told me is nearly imposible to have apnea and not to snore.

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Sierra +0 points · over 1 year ago Sleep Patron

Snoring is typical for apnea in general which is also associated with being overweight. The tissues that can promote the apnea can also cause obstructive apnea. Yes, I did snore, and so did my wife. She has obstructive apnea, and I have mixed or complex apnea where the centrals are the dominant part. It is worth noting that the large proportion of apnea incidence is obstructive in nature. For that reason the screening tests are geared towards OSA or obstructive sleep apnea. Central apnea is different and can occur in younger and slim trim individuals. I would work on your doctor to try and get you in for a test. It may not be central apnea but you won't know until you get tested.

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PutSleepApneatoBed +0 points · over 1 year ago Sleep Commentator

Raquel2-

One problem is that sleep apnea is very heterogeneous and there are apparently several different “types”. A second problem is that there is a stereotype that the condition is prevalent in only middle-aged, morbidly obese males- and that stereotype is false and, IMHO, killing people. A third issue is that, yes, you CAN have sleep apnea without ever being told that you snore- or snoring only very rarely, because I did!

Your experience sounds very similar to mine. I am female, now 74, and have what is considered only “moderate” sleep apnea, but it was much worse than “moderate”.

When I self-diagnosed and finally got a PSG at age 56 (2004) I had an overall AHI of only 19–but during REM it was 83! That is, when I could even MAINTAIN REM sleep, which wasn’t often, because I was regularly desaturating below 60% during REM.
But, of course, I didn’t know that when I was your age.

In retrospect, I stopped dreaming at puberty (voice box descends in both genders, then, crowding the airway.) I noticed it at the time, but just thought that for some reason I had merely stopped remembering my dreams. I even asked my parents whether they remembered their dreams- Mom did, and Dad never did.

After I self-diagnosed 40 years later, I diagnosed Dad-(he had an AHI of 56!!) but by then he was 78 and, sadly, had sustained too much damage (stroke and dementia) to successfully achieve adherent PAP treatment. He died at 82 from a CV event. However, Mom, who dreams every night, is still living independently at 95.

My brother, age 70, whom I also diagnosed, but who won’t use his CPAP, is not doing so well and has had two heart attacks. BTW, my brother is, and my father was, of very normal weight. I was too, until menopause, when I went from normal to overweight.
But no one was obese. And I had apnea so severe that I couldn’t maintain REM sleep from the age of 12. As a young adult I had a BMI of only about 20.

By my late teens I had PVCs—-what you called extrasystoles—so severe that every other heartbeat was premature and not pumping blood. That is called “premature bigeminy”. I spent a lot of time with cardiologists who were seemingly mystified. I even spent a week in a hospital once undergoing many tests trying to get a diagnosis. They were looking for a “floppy mitral valve”. This was the late 60s and 70s. No one knew anything about sleep apnea that early. It was only discovered in a sleep lab in 1967.

You should also be checked for pre-diabetes. The PVCs can also be related to reactive hypoglycemia. And Sleep apnea is suspected of causing Type 2 Diabetes. The disrupted sleep causes insulin resistance and the hypoxia kills Beta cells which are highly susceptible to hypoxia.

I was trying to get diagnosed from about the age of 28. At that time, after surgery for a broken kneecap, I started waking up after 3.5 hours EVERY night, unable to return to sleep for about three hours. I also fell asleep early EVERY night “before my head hit the pillow”. That is also NOT normal. And although I described it quite accurately, dozens of doctors from different specialities completely missed the diagnosis.

This was the late 70’s. Although sleep apnea had been discovered in a sleep lab, doctors generally knew little or nothing about it and there was, as yet, no treatment. Since I was of normal weight, even had they diagnosed it, the only treatment they could have offered would have been a tracheotomy. CPAPs weren’t invented until the early 80s.

You’re on the right track with the overnight oximetry. But take it up a notch and record yourself sleeping- using both video and sound recording. Your apneas and struggles to breathe during sleep should become obvious. Take those recordings to the best sleep lab you can find, together with your overnight oximetry recordings and demand a sleep test.

It is possible that, like me, you don’t snore much because you are obstructing mostly during REM, which you can’t maintain. I suspect I go from having almost no apneas during non-REM to constant apneas during REM, such that I can’t maintain REM , but still have a relatively low overall AHI.

Are you awakening every night after about 3.5 hours of sleep? That is when the first major REM cycle occurs in most people. And you may be missing a lot of REM sleep. Do you dream?

And in what country are you located? I have contacts who may be able to identify some good sleep labs or doctors near you.

Do as much reading about SA as you can. I helped found the Alliance of Sleep Apnea Partners (ASAP) a non-profit dedicated to improving diagnosis and treatment and have written a number of book reviews which appear on the apneapartners.org website.

I’d recommend you read “Deadly Sleep” by Dr. Mack Jones, first. It’s available on Amazon, I believe. He is a neurologist turned sleep doc, who, after two years as a sleep doc, realized he had the condition himself. But because he was thin, to get the test, he had to game the screening questionnaire-(there are a couple of different ones) which as a sleep doc he easily knew how to do. He had an AHI of 27 and the book talks about his challenges in getting diagnosed and treated.

BTW, one of the problems with the screening questionnaires is that some of them tend to screen men IN, and screen women OUT. And they have never even been validated.

Anyway, keep me posted. I’ll try to help. I’m in the USA in the Eastern Time Zone.

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Raquel2 +0 points · over 1 year ago Original Poster

PutSleepapneatoBed, thank you so much, I'm in Spain, I've found that there is a sleep center who are specialists in apneas and other sleeping issues, is quite far from where I live but maybe it will be my only way to get tested.

I have to say that until the last 3 weeks when I started to really obsess about this, I used to have these episodes not very often, maybe just a few times in the month. I always remember my dreams, didnt have headaches (though im not prone to them not even now I have them) and I didnt feel sleepy. Aside the last 3 weeks, I tend to wake up once in the middle of the night to go to the bathroom.

3 weeks ago and certainly with me under some stress in my life plus a lot of heat in my country I had a hell of a night when these happened lots of times. Since I didn't know if i was really not breathing or was just a feeling that I had is when I decided to use an oximeter to sleep. Whenever I wake up I would go in panic seeing my levels of oxygen. My heart on the other side always kept a good heart beat.

There are people with the other apnea on my family, only one person, and the other apnea, the obstructive, and completely different symthons from mines, but reading online I found out about central apnea where I could fit.

My theory that means nothing is that I could have a mild central apnea, but now with the stress I'm having thinking about it is out of control..

Do you fully wake up when you have a non breathing episode? I honestly believe there is a bit of stress/anxiety going on in my case, but I know people way more stressed that I am and they don't suffer from this.

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PutSleepApneatoBed +0 points · over 1 year ago Sleep Commentator

You could have centrals, but there are also other possibilities. A friend of mine had something similar to what you are describing. He was Hypo or hyper ventilating shortly after he fell asleep. He was trying to adjust to using a CPAP, but it really interfered with his ability to achieve adherence.

You really DO need a sleep study. Preferably an in lab study, but often insurance will pay for only an HST. And centrals might also explain the lack of snoring. Obtaining good medical care when you are far from major metropolitan areas is a problem in the USA, as well. But going to the sleep lab location, if there is any way you can do it, may be your best option.

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Raquel2 +0 points · over 1 year ago Original Poster

I'm afraid I'll have to pay for it . My insurance doesn't cover it. In my country you get it for free only if you have a doctor saying you need it, saldly it wasnt my case.

I'll keep you updated when I know something in case is helpful to someone else in similar situacion because I'm in a living hell right now. In the meantime I'll try to disconnect from the topic in case doctor is right and is anxiety.

Sleeping well is so important...we don't appreciate it until we lose it. Thank you for all the info.

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PutSleepApneatoBed +0 points · over 1 year ago Sleep Commentator

Sleep Apnea is well known to create free floating anxiety. But the anxiety is the result of being effectively strangled or smothered all night- not the cause.

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Raquel2 +0 points · over 1 year ago Original Poster

I forgot to say my father has obstructive apnea, the most common one, and he uses a CPAP to sleep, which improved his life immensely. And also now reading you I'm glad he was dignosed to prevent certain diseases.

I know apneas can be hereditary, but don't know if I could get a central apnea from his obstructive apnea.

He had no problems to be tested , he used to snore a loooooooot, in a way you could hear him all over the house, he would fall asleep even driving...so it was easy for him to be tested.

In my case I was discarded in the moment I said I don't snore. Which is a bit unfair.

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Sierra +0 points · over 1 year ago Sleep Patron

Although the in lab sleep study is the best, it can be expensive if you are having to pay for it yourself. It also can be more stressful than doing the test at home. Here is a link to a video on the device that I used for diagnosis. Both my wife and I were diagnosed with a home test on this type of machine. They can detect central apnea as respiratory effort is measured with a strap around your chest, while air flow is measured with a cannula in the nose. Effort without flow is obstructive apnea. No effort and no flow is central apnea. They also measure oxygen desaturation. Together they are reasonably accurate. Some jurisdictions accept them as an official diagnosis while others may not. You would have to google them within your country to see how available they are. The driver where I am is that they do the test for free after a doctor provides a referral. But, if it comes out positive for apnea they then get the inside track on giving you a free trial of a CPAP and then the kicker - sell it to you for about $2400! One thing to keep in mind though is that if you do have primarily central apnea then a simple CPAP is not a good solution. You can't prevent CA events with more pressure, as is the case with obstructive apnea.

Phillips Alice NightOne home sleep test

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BreatheHappily +0 points · over 1 year ago

Raquel, when you used the oximeter. Was it a hospital one? I bought an overnight oximeter that cost quite a bit but was very unreliable.

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NewmanBenjamIn +0 points · about 1 year ago

Hi there, it sounds like you're going through a tough time with these episodes you're experiencing while trying to sleep. It's great that you've taken the initiative to monitor your oxygen levels and heart rate during these episodes, as that can provide valuable information for doctors to understand what's happening. It's understandable that you're feeling frustrated and desperate after receiving dismissive responses from doctors, but don't give up hope. It's possible that you have central apnea, even if you don't fit the typical patient profile. It may be worth seeking out a sleep specialist for further evaluation. In the meantime, try to practice "5 4 3 2 1 grounding" when you start to feel anxious or stressed after your night episodes; it may help you to reduce your anxiety. Remember that you are not alone, and there are people who care and want to help you.

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PutSleepApneatoBed +0 points · about 1 year ago Sleep Commentator

Raquel2: I know of a neurologist turned sleep doc, who, two years after becoming a sleep doc realized HE had sleep apnea. But because he was slender, he had a very hard time getting insurance to pay for his sleep study. So, knowing what the screening questionnaires would ask, he simply gamed the questionnaires to get the study.

He turned out to have an AHI of 28. The stereotype that says that only middle-aged, morbidly-obese males have sleep apnea is killing people. But most sleep docs still subscribe to it, sadly.

None of the questionnaires are validated, and many of them will very effectively screen out young, thin women, or just thin people in general. I was misdiagnosed with anxiety and insomnia for decades, when all the time the problem was that I obstructed so severely during REM that couldn’t sustain REM sleep and I would regularly desaturate to 60%, which is life threatening.

There is a lot wrong with this field.

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BreatheHappily +0 points · about 1 year ago

I would get a proper apnea test from a medical provider either at home or in a hospital overnight. Many/most of the "continuous" oximeters on Amazon etc that measure your levels while asleep give unreliable readings, according to the reviews I have read. I bought one and tried wearing it throughout the day as a test. It would fluctuate wildly at times even though I was fully awake and the reading on my regular pulse oximeter was normal. The sensor would slip and light would get in unless I bound it too tight for comfort. Fortunately, I was able to get a partial refund. I don't think the oximeter functions on smart watches are much better, other than as a rough guide. If anyone knows of a reliable overnight oximeter, I would be interested to find out.

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Deepnap +0 points · 11 months ago

Hi Raquel2.

My symptomes are very similar to yours. I am 64, male, and have been diagnosed with sleep apnea about a year ago. To majority of apnea events are central in nature. Doktors have no explanation. I do not fit in the typical sleep apnea patient pattern. With CPAP I can manage to keep my AHI around 10.

My worst events are those you describe. As I relax and transist into sleep I wake up and notice that I have stopped breathing (Scary!). Sometimes my heart rate goes up to 120 or more. One or two such events occur in the first hour after going to bed. Then for the rest of the night no such events occur anymore.

I have started to notice some triggers. If I avoid them, things are much better. Typically, if I spend several hours watching TV, working on the computer or looking at my mobile phone screen, these events occur frequently. When I avoid those triggers after 6pm these events are less frequent.

Another trigger I noticed are many hours driving my car.

I typically get up around 4 or 5 am for a visit to the bathroom. I noticed from my CPAP recording device that when I go back to bed after those bathroom visits, my AHI score shoots up quite a lot. So in general the average AHI of around 10 over the whole night is mainly due to the last third of the night.

I think in my case it is self-induced mental stress that is a factor. So I am starting to explore medition, breathing stress management exercises.

There may also be a serotonin link. I had a genetic test taken (cost me 200 Euro). Apparently, I am very low on serotonin. So I hope by improving my diet and using above techniques, as well as taking L-Tryptophan supplements I can make improvements.

Also, and I have reported this in this forum, when I have a decent amount of alcohol (in the order of 5 pints of beer or a bottle of red wine), my overall AHI through the night drops to 4-6. Still, the last third of the night is manly responsible for this total average.

I have no blood flow issue in the brain.

Best regards Deepnap

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Deepnap +0 points · 11 months ago

I reguarly drink alcohol ... say 3 to 4 times a week. Totalling about the equivalent of 2 bottles of wine per week. I wonder if you have a similar habit. As one of my next experiments I will try to stop alcohol completely for 4 to 6 weeks and see if it makes a difference.

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Raquel2 +0 points · 11 months ago Original Poster

Hi guys, excuse me that I didnt reply at all, but I wanted to say what happened in case in can help to somebody, it was anxiety, a extreme case of anxiety, I no longer have apneas and I've been treated from anxiety, going to the psicologist and such. I wish you all good luck since I know how hard this was for me.

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raysmith45 +0 points · 11 months ago

Try elevating your head and shoulders for sleeping, Get a wedge to put under your pillow or use multiple pillows. Try using a recliner to be more upright. Good Luck

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