[Diagnosis] Massive bradypneas, scared

[silentsnore]

In addition to all great advice here, you could also try to setup a video camera to record your sleep. That might give you some clues as to what's going on.

As Sleeprider said (btw, all great advice as always), your condition/situation is perhaps too complex for this forum. Yet, who knows, there may be a simple explanation for all the recent events.

I am a skeptic by nature and don't trust machine generated data without the proper context, as machines can be fooled easily. Video recordings with corresponding SpO2 data will provide that context.

[thibaulthib]

Hi all,

My night was cahotic. I barely slept 4h and my sleep was sh*t. This is the first time it happens. I can see that the flow rate is ridiculously low.

I am still not hungry after 48h and I even foresee some CA. I am going to go to the sleep clinic in Singapore.

[Sleeprider]

Just be sure if you do a study that the method is to evaluate both CPAP and bilevel with the intention of the titration study being two-fold; 1) resolve apnea to less than 5, and preferably lower, and 2) to keep SpO2 above 92 percent by monitoring respiratory volume. Both criteria must be met for successful titration. Resolving apnea is not enough in your case. You must assure respiratory volume for efficacy.

[thibaulthib]

Just be sure if you do a study that the method is to evaluate both CPAP and bilevel with the intention of the titration study being two-fold; 1) resolve apnea to less than 5, and preferably lower, and 2) to keep SpO2 above 92 percent by monitoring respiratory volume.  Both criteria must be met for successful titration.  Resolving apnea is not enough in your case. You must assure respiratory volume for efficacy.

Thank you SO MUCH Sleeprider !

I just found this on the web called central hypoventilation syndrome.

I guess that is what is happening to me when heaving drinking. Have you ever heard of this before ?

Also, for what is worth, suddenly 3 years ago, I started not being able to swallow solid easily. before that, I was always the first one to finish my meal. now i am the last and I am always scared to choke while swallowing.

[Sleeprider]

That matches my assumptions. I never thought your condition was related to obesity and a central source seemed likely. Even in your last graph posted, the breathing pattern OA, CA, H all have more characteristics of central to me than obstructive. If you are prone to this kind of problem, the alcohol or any opioid could trigger it. Please be careful.

[thibaulthib]

That matches my assumptions. I never thought your condition was related to obesity and a central source seemed likely.  Even in your last graph posted, the breathing pattern OA, CA, H all have more characteristics of central to me than obstructive.  If you are prone to this kind of problem, the alcohol or any opioid could trigger it.  Please be careful.

The shape of my breathing pattern is just aweful since sunday indeed.

Something I want to add on: my mum has been doing "panic attacks" for the past 20 years every other day (she is 50yo, 155cm, 50kg) and she never found out why.

According to sleepyhead, her median tidal volume is also 260.

Could her and I possibly share the same syndrome ?

[thibaulthib]

Ok bad news...

Just has a massive panic attack in Jakarta where I am in business trip. So I ended up at the hospital.

It lasted 3h and was the scariest I ever got.

I have sent the following email to my pulmonologist in Singapore, I am seeing him on saturday:

Crazy things are happening to me for the past 4 days, and I am having panic attacks every single day since monday.

I am still using the CPAP every single night, but this weekend, after excessive drinking, I had during my sleep:
- Saturday: 10min of hypoventilation with a respiratory rate of 2 per min
- Sunday: 50min (at one go) of massive hypoventilation with a respiratory rate of 2 per min as well
It looks like a central hypoventilation syndrome. I will show you all the charts.

Since then, my respiratory flow is hectic and I am doing a lot of central apneas.

Also, since the use of the CPAP in march 2018, I have found out I have an extremely low tidal volume for a male: onstead of the 500ml average, I get only 250ml ! On saturday and sunday, it was worse: only 180ml.

I would need to meet with ASAP to do another sleep study with:
- run some lungs tests to confirm the low tidal volume
- minute vent and Sp02 results
- check if I need a BiPAP/VPAP ST/AVAP titration with memory of the number of breath per minute to insure the machine help me breathe when I literally don't
- check how drinking alcohol affect my oxygen saturation in the body, leading to hypoventilation

I am extremely scared by what is happening.

If you are not back to Singapore before this saturday, can you refer me to your best colleague please ?

[thibaulthib]

Hi all,

Some news from my side: I am still at the hospital in Jakarta and waiting to feel better before going back to Singapore.

Sleeprider, as per all we have discussed, I suspect I have actually one of this disorder/syndrome: OHS, CHS, or ROHHAD.

What I can tell you about myself:
- Around 7 years old, I did my first asthma attack. I have been taking Ventoline quite a lot, and even more while doing sport.
- I got treated for premature puberty when I was 10yo, until 14yo. I took Decapeptil (Synthese hormones)
- I am 170cm. In june 2010, I was 70kg. In september 2010, I was 80kg. I took on weight 10kg in 2 months with no reason!
- In june 2011, I was 90kg. 10 kg more in 10 months with no apparent reason
- I was really short of breath, could never breath at 100% even after taking deep breath. Was heavily relying on Ventoline.
- At that time, I was snoring a lot, having headache, being depressed etc. But I did not know it could be sleep apnea, so I went to see a neurologist which found out I had ADHD (probably due to the lack of sleep because of sleep apnea)
- I stayed at this weight for 5 years. And suddenly after moving to Singapore, I slowly lost it and am now back to 70kg.
- Since I am in Singapore, suddenly 3 years ago, I started not being able to easily swallow solids. I was always the fastest to eat the meal, now I always finish last. And every time I swallow, I am scared of choking and I make weird faces because I am trying 2, 3 or 4 times before being able to find the right time to swallow.
- When I did my first panic attack, it was in Singapore in march 2018. The blood check they did during the attack revealed I had no phosphate/sodium in my blood! They have hence been treating me for that, for 1 week, to level up the phosphate level.
- Sobre, I am having many events of hypoventilation throughout the night, but of course nothing as harmful as when drunk, which is way worse.
- In general, I must admit I have a shallow breath when awake, and it seems it is confirmed by my very low tidal volume. Basically, 260-280ml in average.
- Today, I am back to 70kg but I guess I kept many of the symptoms which got developed earlier on.

I will go see my pulmonologist first on saturday, but some of you are able to enlighten me even more before the appointment, I would be really greateful.

PS: What should be a normal flow rate form (in L/min) for a healthy male?

Thank you so much guys,

Thibault

[Sleeprider]

I can't judge your needs, but you would clearly be better off with bilevel (BiPAP or VPAP), and if you are prone to central apnea or periods where you don't try to breathe, then the bilevel needs to have a backup rate so it switches to higher inhale (IPAP) pressure to ensure you get a breath. Any kind of central disorder that causes you to not breathe spontaneously needs diagnostic attention and it sounds like you are hooked up with doctors that can provide that. As suggested before, an inexpensive oximeter could go a long way towards determining if you have a problem.

While you are in the hospital, are you monitored for SpO2? Oxygen? CPAP?

[thibaulthib]

I can't judge your needs, but you would clearly be better off with bilevel (BiPAP or VPAP), and if you are prone to central apnea or periods where you don't try to breathe, then the bilevel needs to have a backup rate so it switches to higher inhale (IPAP) pressure to ensure you get a breath.  Any kind of central disorder that causes you to not breathe spontaneously needs diagnostic attention and it sounds like you are hooked up with doctors that can provide that.  As suggested before, an inexpensive oximeter could go a long way towards determining if you have a problem.

While you are in the hospital, are you monitored for SpO2?  Oxygen? CPAP?

Thanks Sleeprider, indeed I can notice 2 things:
1) My shallow breath even when sober, with a low tidal volume (260-280ml)
2) The fact that alcohol does not help at all for the central apneas. Yesterday, I still had some. It means I still haven't recovered from my past weekend.

The hospital I am right now is... How to say... Just somewhere where to sleep I guess, from the stone age. I was 1h30min away from Jakarta when my panic attack happened so now that I feel better, I will get back to Singapore. And check this all.

Thibault