Just diagnosed with Apnea, not sure if it's really apnea

[Ric28]

First post here, so I'll introduce myself a little. I'm a 28 year old guy from the Netherlands and have recently been diagnosed with sleep apnea. I'm in decent shape and whenever my energy levels tolerate i'm often found in the gym. I've always been a tired guy in my life, this was actually the 3th time I went and got my sleep checked.
My Fitbit said I often had nights without any or a really small amount of deep and REM sleep, I also didn't dream a lot. The nights when deep and REM were really low were also followed up by a day of feeling totally shitty.

So there I went for another sleep examination, this time they said I did have apnea (they did say mild on the other examination but nothing to worry about. Don't know the AHI)

So now I had a:
AHI of 9
On my back 23

So I believe the AHI of 9 was a bit lower due to the fact I was wearing a belt with a small tablet, which made it almost impossible to lay on my back. It felt like I woke up around 20 times that night, but I guess this is mostly based on my gut-feeling.

They gave me a "Prisma Smart - Auto-CPAP - Löwenstein Medical", I wanted to upload the data here from Oscar but my model is sadly not included. I've been using the CPAP for 2 weeks now and what I can see is as followed:
I'm also using a "ResMed AirTouch™ F20 Mask"

P90 between 10 and 12.5
No leakage
Deep sleep indicator between 76min and 136 min
AHI around 1-2 per hour

So that's what's going on right now is that the first few days were amazing, especially the 2nd or 3th day. I felt like a "normal" person, with normal energy and normal feelings and motivated to do stuff. I also slept trough a night and the headaches were gone which was AMAZING!

The problem I have right now is that I wake up every 1.5-2 hours all the time at night. I also often feel panicky, like I had before and I can't really sleep past a certain time. Does anyone know a fix for this?
I also tried the "ResMed AirFit N30i QuietAir" but the doctor advised me to do a small nose operation where they burn a little bit inside the nose so I can breathe better, I think it translates to: Thermotherapy with a Celon device. They'll go with a burning needle in my nose and burn away some "useless" parts so I can breathe better throughout the day and night. Don't know it's a worldwide known procedure.

What I'm also really wondering if the following symptoms are related to Sleep Apnea, I know it's hard to say because everyone's different but you guys might've seen these before:

-Falling asleep mostly between 4-7pm after that I get some energy
- Tightness/pressure on the chest, this comes and goes and is sometimes more apparent than other times. Mostly whenever I feel stressed or anxious, then it gets worse. Pretty scary this one.
- Tinteling, mostly on my arms and legs
- Dissociation / derealization sometimes it feels like I can't see depth and I'm totally spaced out like I'm high on drugs.
- In the morning I can feel like I'm going crazy, this one is hard to explain but random thoughts rush trough my head and I can't handle too much stimulus like someone talking to me in the morning
- I'm just gonna put this one here, even though its far fetched but Visual Snow
- Falling asleep in the gym and yawning ALOT
- I have a lot of tension in my body, like my body is always in fight of flight mode. Even though my life is pretty stress free.
- Falling asleep when I meditate.

Besides that I also have some really common ones like:
- Forgetting a lot
- Always tired
- Headaches when I wake up
- Stuttering a little
- Snoring

So to sum up my questions:

- What can I do to stop waking up every 1.5 - 2 hours and is it something that happens often?
- Are my symptoms Sleep Apnea related or is it most likely something else?
- Should I get the small surgery on my nose, is it safe? Internet has mixed reviews.
- Is there anything else I can change about my CPAP and it's settings to make it "better" for me?

[rick blaine]

Hi Ric28,

When you say: "Are my symptoms sleep apnea related or is it most likely something else?" I think you are right.

As far as I can see, you are asking about three conditions: (1) mild to moderate sleep apnea, (2) slight but possibly significant nasal obstruction, and (3) hyper-ventilation syndrome.

The list of symptoms you post – from 'falling asleep' down to 'tension in my body' – and including the 'dissociation/ feelings of unreality' and 'visual snow' – strongly suggest the daytime breathing disorder known as hyper-ventilation syndrome, as described by Dr Claude Lum.

The remedy is to do specified breathing exercises for 10 minutes at a time, and for five times a day. And to keep that up until activity-appropriate breathing becomes a habit. And also that such breathing is a resource you can slip into whenever stressed.

The exercises are best taught to you by someone who knows what they are doing. So you should ask your regular doctor to be referred to a doctor or respiratory nurse or respiratory physiologist who specialises in treating HVS.

The need for and usefulness of (2) the physical procedure I can't comment on. And I will leave it to others to give advice on how you manage (1) the sleep apnea.

[Ric28]

I have heard before I'm not breathing well, I also tend to hold my breath sometimes during exercise. One of the biggest issues I face is the falling asleep, between 4-7pm, I just fall asleep. I tend to believe it has to do with how well my nights rest has been, depending on how well rested I wake up the tiredness is worse throughout the day. Do you believe this could also be due to the hyper-ventilation syndrome? I also tend to feel like my muscles are weak in a sense they're not well rested/numb)

I have an appointment tomorrow with my doc and will discuss this with her as well.

On the CPAP part, I do notice that the headaces are gone in the morning which is great but I do wake up after almost every sleep cycle. After 1.5-2 hours of being asleep and then again and again. This has became worse since using the CPAP. What could be the cause of this? Because I feel like, that if I would just sleep for 8 hours straight almost every night I would feel A LOT better.

[Julie]

What are the chances of your begging, borrowing a machine x 2 nites (one's not as reliable) to be able to see Oscar (and post here)?

[Ric28]

The plan is to ask my doctor tomorrow for the most detailed results she can get me, the ones I could get were VERY basic. Explain it to me like I'm 5 simple.

If it's not much I'll ask for a different machine so I can monitor the results better. Today was another day of me falling asleep at 4pm in my car (at a gas station) even though I was in bed for 8 hours. But yesterday I didn't really fall asleep so it's kinda strange.

I did experience some good days aswell on CPAP but I wonder what it is, I also see the machine sometimes at a pressure of 13-14 when I wake up in the middle of the night.

[Miss Emerita]

Please ask your doctor about hyperventilation syndrome. And please report the incident when you fell asleep in your car at the gas station. The doctor needs to hear specifics like that to understand how important it is to follow up on your complaints.

About waking up after sleep cycles: this is actually fairly common. If you just roll over and fall back to sleep, those wake-ups are not at the heart of your problems, I believe.

[Ric28]

Thanks and will do! I told them loads of details before and even though I sometimes feel heard all they say is: I don't know how I can help you. It's very frustrating. Sometimes I get suicidal thoughts but I'm also happy that there's good days aswell, it would be really hard without the good days but I don't give up hope.

What's also very strange is that I tried going on testosterone replacement therapy (TRT) and for the 3 months I had energy like never before and felt great! But then lockdowns happened, couldn't go to the gym and got extremely tired again. Now most days I can't even go to the gym because I literally fall asleep.

It's good to know that those wake ups are probably not causing the problems, but the hyper ventilation syndrome is known to make someone extremly tired around 4-7pm?

[chunkyfrog]

You don't need the gym to be fit.
There are plenty of things to do at home.
Things to lift, steps to climb, places to push against.
Stretches and range of motion can be done any place.
A pint of most any liquid is about a pound.
A liter is a kilo.

[rick blaine]

Hello again, Ric28,

Most of the time no one symptom suggests or indicates anything. The suggestion of hyper-ventilation comes when there's a cluster of symptoms. What I noticed is that you mentioned at least eight from the list that Dr Lum compiled and has made available to his fellow doctors in papers and journals.

The next step is a 'provocation test'. That is, the specialist doctor or nurse asks you, while you are in the safety of their office or consulting room, to deliberately breathe even more badly – to find out if (a) the symptoms you already have get stronger and (b) if new and previously unreported symptoms now appear.

The deletious effects on the patients systems can be further confirmed by analysing the gasses the patient breathes out, and this is done by having him or her wear a mask and breathe into a gas analyser, and also a spirometer.

You say you have told previous doctors "loads of detail" and they have not always responded. One of the things to note is that: not every doctor has been trained in HVS. One of the things that most animated Claude Lum when he was alive was to get his fellow clinicians aware just how prevalent HVS is.

If I can "channel" him, I would say this: IF you find yourself being treated by a medical professional who doesn't know much about HVS AND who has done all the usual tests on you WITH the result of 'nothing to find' – AND YET, you still have many of the symptoms on the HVS list – can they please (c) consider HVS as a possibility, and (d) refer you to someone with experience of treating HVS for their opinion.

And lastly for today, you ask again about feeling tired in the late afternoon. Could it be caused by this, could it be caused by that? What I know is that both untreated sleep apnea and HVS can lead to fatigue. So, with you, it may be one of the two causing it, and it may be the other – and it may even be both. (It could even be something else. )

The thing to do is test for both, and if necessary treat for both.

[Miss Emerita]

I’m very sorry and concerned that you sometimes think about taking your life. If that happens again, please google “suicide hotline” and call one of the numbers you’ll see. Don’t worry about whether you’re “serious enough” to call them. Just call.

Meanwhile, let us know how the appointment with the doctor goes.

[kteague]

Looks like you're getting some good leads on possibilities to rule out. Sometimes there can be more than one contributor to a person's symptoms, and it can be a process to identify them all. The good thing is, once an issue is identified and addressed, the narrowing down of residual symptoms can give clarity on where to look next. Sleep issues can cause so many of the symptoms you experience.

I'll toss out a couple more possibilites to consider in the ruling out process. One is limb movements. They can cause frequent wakings and unrefreshing sleep. This would be suspect particularly if your sleep is restless, you wake with your legs moving, and you change positions a lot. Another is narcolepsy. A few of your symptoms made that cross my mind.

You may have already gone down this path, but any nutritional deficiencies need addressed. Have you had your Vitamin D and other basics checked lately? Are you on any supplements or meds that could cause side effects on your symptom list?

Sorry I don't have answers, just questions that will hopefully give you some things to talk to your docs about. It can be discouraging and frustrating when we don't readily get the help we need, and it's hard to persevere when we're so depleted of energy. The maddening thing for me was when the docs would get a negative test result they would say it with an air of dismissiveness. Finally got to the point where I told my GP that telling me one more thing I don't have wasn't enough, and that I needed him to keep looking till he could tell me what I do have. Make "So, what's next?" your mantra. Good luck working through things.

[chunkyfrog]

Anxiety can result from apnea--and sometimes from the treatment (at first).
Your symptoms sound so much like anxiety attacks, I had to mention it.

[Ric28]

You don't need the gym to be fit.

I know, but it's something I enjoy doing. I like to get into a better shape but the tiredness is making it extremely difficult.

The next step is a 'provocation test'. That is, the specialist doctor or nurse asks you, while you are in the safety of their office or consulting room, to deliberately breathe even more badly – to find out if (a) the symptoms you already have get stronger and (b) if new and previously unreported symptoms now appear.

The deletious effects on the patients systems can be further confirmed by analysing the gasses the patient breathes out, and this is done by having him or her wear a mask and breathe into a gas analyser, and also a spirometer.

I'm very much open to this idea. I don't believe my doctor knew what HVS was, she said she knew but I think she just fitted the words together. She said something around the line: yeah good idea to find someone to help with your beathing
I also like that their are tools that will help with figuring out if I have HVS. Otherwise it's hard to grasp if it's really that.

What I think myself is that I sometimes stop breathing or well hold my breath.

I’m very sorry and concerned that you sometimes think about taking your life. If that happens again, please google “suicide hotline” and call one of the numbers you’ll see. Don’t worry about whether you’re “serious enough” to call them. Just call.

Meanwhile, let us know how the appointment with the doctor goes.

Thanks for the concern, I would never do it and I don't feel as bad. But there are days that those thoughts cross my mind, especially if it would keep getting worse. I have a pretty great life I'd say, if I could get rid of the always being tired.

L Finally got to the point where I told my GP that telling me one more thing I don't have wasn't enough, and that I needed him to keep looking till he could tell me what I do have. Make "So, what's next?" your mantra. Good luck working through things.

Thanks for the advice, I also keep telling myself this. I don't mind going from place to place, even when loads of people don't take me serious. I am leaning towards my breath next, to hope that's gonna be the fix.

[Ric28]

So I was at the doctor's yesterday and I was kinda expecting it myself, since my sleep felt alright the last few days but I was still extremly tired. The mask is not really bothering me, I only woke up a few times but went back to sleep right after. But It feels like my symptoms are not from the Sleep Apnea. She advised me to keep using my CPAP because it's doing something, I also feel that way. Especially the dizziness/headache in the morning is gone. And I'm kinda used to it already so I don't mind using it even if it helps a little.

She also gave me detailed resulsts from my last 2 weeks, I could not get these myself since I don't have the according software but I do have the results. Only downside is, they are in Dutch but I believe they're quite clear. I have more information if these 3 nights aren't enough, but from what I could see (as a newbie) this would be enough.

If anything needs translation I could do it but I guess Google Translate could work aswell. I don't know what we're looking at, the doc said it all looked good so.

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[chunkyfrog]

Export to an image hosting site--then link from there.
This forum has posters in many countries.
Edit your first post, and put "Dutch" in the title--a speaker may notice.