Symptoms of hypersomnia + low AHI

[Dormeo]

Oh, Ratchick. Unbelievable. I'm so sorry.

[SarcasticDave94]

Here's a test that I want you to try regarding the Central Apnea. It's completely free, and despite me being the Sarcastic One, it's not based on sarcasm.

After the next 3 sleep sessions, BEFORE you look at any OSCAR (or any stats period), write down how you felt, detailed things like headaches, well rested or not, things like that.

Next, look at your data. How many sleep sessions? How long total? How many Obstructive events? Centrals? Not just the left panel AHI stuff, actual total events. Anything else that stands out, differences between nights might count. How did the data looks, the numbers and the tracer lines, is actually important.

Final step is find a relation with good or bad sleep on those 3 nights with data. Examples are, less well rested in the night with 6 CA versus the night with 3 CA, or better rest that lasted 7 hours versus 5. That kind of stuff.

Write your subjective take on these 3 nights then post that and a standard OSCAR for each. Let's see what happens.

[mhoffmann]

Just in order to give a brief update:

I've been to the hospital on Sunday due to severely worsened health (SSRI withdrawal, persisting diarrhoea, severe exhaustion and signs of malnutrition) - was sent back home with 2mg of Lorazepam and the Dr. didn't even bother to do a basic examination.

Had an emergency appointment with another doctor at my GP's office yesterday, where we also talked about the OSA and CPAP therapy; she urged me to get a revaluation ASAP, since the emerging central apneas don't look like they'd justify the CPAP therapy at all in my case.

Other than that, I got several appointments (long-term blood-pressure, literally all blood levels as well as some ultrasound [stomach & thyroid]) and she also suggested that my low liquid intake - which is at avg. 500 ml/day - may have a severe effect on the whole issue. However, she really seems to care and I feel like I'm in good hands here.

I feel a lot worse now - as soon as I am able to think clearly again, I'll reply to your answers

[Dormeo]

Mhoffmann, I’m very sore to hear about your illness and your poor treatment by the ER. But it’s good news that you have a new doctor who will pay attention. Keep us posted, would you?

[Ratchick]

Goodness yes, get your fluids up, and your electrolytes. That's going to cause all manner of problems, especially on top of GI issues causing more fluid loss.

Feel better soon.

[mhoffmann]

It has been quite some time since I updated this thread here - had several appointments in the meantime but the situation got only worse and worse; leaving me in a state where I can hardly focus on anything without an eugeroic (in my case: Dextroamphetamine or Lisdexamfetamine (pro-drug)), which also has other side effects, especially regarding the cardiovascular system and insomnia. 

What has changed: 

Regarding OSA: No more APAP. Today I got a prescription for a mandibular advancement splint and returned my AirSense 10 today. 

Regarding Insomnia: Got Eszopiclone (Lunesta®️) as pro re nata medication, no experience with it yet. Cannabis isn't working to induce sleep, nor is exhaustion. 
But good news for all EU citizens: Daridorexant (Quviviq®️), member of the Orexin antagonist group, will probably available soon in the EU (positive opinion from the CHMP) - so at least that's something to look forward to...

Regarding Hypersomnia: No one seems to care.

The appointment in the clinic was rather disappointing too: They are focused yet again primarily on my psyche, want to test for ADHD and I am getting some CBT focused on sleep problems, but really, I cannot stand that they take the easy path again.

In the meantime my new GP prescribed some Ramipril to treat high blood pressure but this really destroyed me more than it helped and therefore I cancelled it after only two weeks. 
She also recommended that I should see an endocrinologist, so that's up next in the endless cycle of specialities. 

There's still a path to travel on, but I really don't understand why no one bothers to do a proper diagnosis (stationary, a few days and it should be done) - it's really atrocious. 

For this week, I have planned to rearrange my bed room so that I can at least open one window shade at night so that I will have more daylight in the room - I currently have it down all the time (due to privacy concerns & one of the busiest roads here) but since they are only on the inside, they don't make the room pitch black anyway. 

Here's a test that I want you to try regarding the Central Apnea. It's completely free, and despite me being the Sarcastic One, it's not based on sarcasm.

After the next 3 sleep sessions, BEFORE you look at any OSCAR (or any stats period), write down how you felt, detailed things like headaches, well rested or not, things like that.

Next, look at your data. How many sleep sessions? How long total? How many Obstructive events? Centrals? Not just the left panel AHI stuff, actual total events. Anything else that stands out, differences between nights might count. How did the data looks, the numbers and the tracer lines, is actually important.

Final step is find a relation with good or bad sleep on those 3 nights with data. Examples are, less well rested in the night with 6 CA versus the night with 3 CA, or better rest that lasted 7 hours versus 5. That kind of stuff.

Write your subjective take on these 3 nights then post that and a standard OSCAR for each. Let's see what happens.

Sorry, I forgot you in the first revision of this post.
I haven't tried it like that, but I had several nights with an AHI of 0. These weren't better in any way.
No one of the doctors actually still thinks that the OSA is the cause of my symptoms - it's mainly supine anyway and I tend to sleep sideways at home.

I think it's an issue here too.  Back in the 1990s, my primary care physician couldn't figure out why I was deeply fatigued;  she did a lot of tests and finally referred me to a psychotherapist and -- thank goodness -- a rheumatologist.  The rheumatologist immediately diagnosed an autoimmune disease in the connective tissue disease family; the therapist was nice but I only saw her once!  She said it was natural to be depressed when you are deeply fatigued and don't know why.  I'm sure the same is true for hypersomnia/insomnia.

It's always the same, that's so sad to read.
I mean, I'd be totally open for the psychological aspect, but since my mood is actually pretty well under control with my medication, I don't believe that's an issue at all. 
And to be honest: I don't think that my lack of tiredness and trouble to fall asleep are in any way linked to my depression.
But good to hear that it turned out (hopefully well?) in your case!

Same here in the UK - mention you're depressed (especially if you're female) and EVERYTHING gets blamed on it (or anxiety). I think it's a problem all over, to be honest. I suffer with endometriosis - a really common disorder (i.e. affecting 10% of women and girls) - and I spent FOURTEEN years being told I was too young, I was just attention-seeking, I was depressed, I needed to see a shrink, I was just fat (despite my BMI being around 20 and at my adult height), etc  Three gyns told me this bullcrap. Dozens of GPs. You know how I got my diagnosis? By the 4th gyn telling me that I didn't have endo and he would do the laparoscopy (the keyhole abdominal surgery that is the only way to definitively diagnosed the disorder) just to prove me wrong.

Turns out I wasn't imagining it. My insides look like a frag grenade went off inside there. Organ damage, nerve damage, severe scarring and adhesions and bleeding, just... a mess. A dozen surgeries later and its now too risky to do more for only a few months benefit at most. So I have to live in constant pain, unable to have kids, lost my job, ended my marriage... So yeah. Not to hijack your thread but it's... a thing.

Just before I lost my job, I was in much the same position as you - in IT, spending 1/4 time working from home because I couldn't even sit upright because of the pain and lack of sleep. Trying to make sure I squeezed in those 40 hours so I wouldn't get my pay docked even further... It was so hard (at that point, I was sleeping maybe 5 hours total, but waking up every hour or two because of the pain, and this was before the dysautonomia and central apnea kicked my ass).

I kind of feel bad that I replied that late, especially since you shared so much of your personal story! That's really troublesome to read actually. Not being too familiar with female-specific diseases, this sounds literally like your doctors didn't give a damn; when even I know at least 2 women suffering from it from my personal contacts, I wonder why on earth a doctor would not just go for a simple diagnosis to rule it out as a possible cause. 

Let me guess, a lot of the damage could have been prevented if they had acted sooner? I am speechless and deeply sorry for you. This is nothing one should have to live through, especially when you sought help a dozen times. 

I guess I am on the edge to lose mine, if I am honest. Although my boss seems to understand that it's not a lack of discipline, I guess he cannot grasp what it really means to suffer from sleep disorders this bad. The only thing which protects me seems to be my above-average skill-level. But regarding working hours and stuff like that, he could easily fire me but since there's no suitable replacement, I still have my job. Still, that all bothers me and gives me distress from time to time, but I guess you know how all of this is. 

But anyway: Life just ain't fun if one is permanently exhausted and can't stick to normal working hours - and the last week I worked, I didn't even manage to get close to my 40 hours which made me pull the ripcord regarding work and go for a paid sick-leave. Also, my brain wasn't working anymore: I felt only tiredness, and I couldn't focus on anything really. I never had problems to get into a programming flow and now everything I experience in my life is a decline. That feels so bad considering that I am not even 30. 

Let's just hope the best for us all!

[Dormeo]

Thank you for the update and responses, mhoffman. How I wish you had better news to report! I will be keeping my fingers crossed for the Lunestra and the MAD device, as well as the new drug.

For me, one of the hardest things was to keep pushing the medical system for help while at the same time feeling that to make the slightest effort was nearly beyond me. So I admire your persistence; I wish it weren't necessary.