Can anyone recognize my sleeping disorder?

Hi everybody, this is my first post and I desperately need your help, please bear with me.

My problem
Like most people here I have a sleeping disorder, but I can't seem to find any information on the internet that I can completely relate to on the matter. When I'm asleep I breathe in fine, but when I start breathing out the exhale gets blocked, then I release a little air, the airflow gets obstructed again and this repeats untill I finally release a strong releasing exhale. This continuous chain of fragmented exhales can repeat many times and I think the longest ones are usually around 40 seconds or so, but normally around 5-20 I think. Also upon each obstructed exhale I make a loud sound that sounds kind of like a E-E-E-E-E-E-E-E-E-E-E-EHHHHHHH. Obviously I'm not awake, this is what my girlfriend tells me, she sometimes bumps her elbow into me so that I wake up and exhale. Sometimes she is just annoyed and others she is concerned because I haven't released my whole exhale for a long time.This hppens whether my mouth is open or closed, and something is blocking the airflow on the way out, not sure exactly what. Sleeping positions don't matter and I never sleep on my back. I don't snore, I'm not overweight, I don't drink, do drugs or smoke. This has been bothering me my whole life, some nights are much better than others.

The problem is I never feel fully rested or energized. I need 8-9 hours of sleep to function and I have the hardest time getting out of bed. I have frequent moderate headaches, I'm sleepy much longer than other people at work/at the university. I generally feel fatigued but I never fall asleep during daytime. Over the recent years I've had vrying degrees of depression, irritability and mood swings, mild social anxiety. I was diagnosed with ADHD because I tend to forget things and I have problems managing my atention. I've been on medicine for 5-6 months and things have become a little better, but not much, sleep unaffected.

My dad has sleep apnea, and everywhere I read about it I notice that people with this condition have problems inhaling and have a lot of snoring. That doesn't sound like my case, which happens on exhale and consists of a chain of obstructed exhales.

What I have done so far
I tried to get this resolved in 2012 and he sent me to a sleep clinic. Then I didn't knwo what I know now, frankly I don't know if it matters, but they might have missed that. I had 2 overnight sleep tests done, the first was with a rubber wire through my nose and down my throat, the 2nd was a type of polysomnography. The problem I had was that it was impossible to sleep both times, but I think I got in 3-4 hours. The result was a "non-specified sleeping disorder" and like that I was sent home with no treatment or follow up, I didn't qualify for a sleep apnea because I didn't have enough apneas or something along those lines. ALthough my longest apnea that night was 42 seconds.

I'm seeing my doctor next week to discuss this, and ask him for more help. The sleep clinic I was sent to got closed down a year ago, and there's one a lot closer with a better reputation, so I'm going to ask him to send me there. But I'd like to come in more prepeared this time.

Other things that I'm not sure if are related
I don't know if any of these are related, but I don't think I should completely disregard them.
- I have a very weak and almost non-existing sense of smell
- Since I was young I've had stammering problems, although they've gotten a lot better in the last 10 years, but not gone.
- I underwent surgery as a baby to remove my uvula, my tonsils and excess tissue because my twin brother died of an unknown cause, but they found both our throats to be narrow.
- I might have a little narrow nose.

Thanks in advance for your time, excuse my english, I'm not from a native english speaking counrty.

Sounds a bit like asthma - trouble exhaling is a major problem. I wonder if you might have along with apnea or some other similar thing.

PLEASE see a doctor, a real one, in person.
This could be one of possibly several things, all of which should be addressed by a physician.

Get a copy of your sleep study - you have the right to have that - and post it here for people to see.

At night in bed if I am watching tv and I fall asleep without my cpap mask on I make those Exact noises. My wife will nudge me and tell me to put on my mask. Sounds like Sleep Apnea to me. When I had my sleep study I too could not sleep... I have insomnia/it was hard to get comfortable with all those wires hooked to me and I sweat and the suction things were coming off my body and the tech would come in the room all pissed at me.

chunkyfrog wrote:PLEASE see a doctor, a real one, in person.
This could be one of possibly several things, all of which should be addressed by a physician.

Absolutely, I have an appointments next thursday with my general doctor, who will probably put me in line for a sleep specialist. I'd just like to avoid falling between the cracks again, this time I want to come prepeared so that I can make sure that I get the help I need, especially if there's something less common that's causing this.

BlackSpinner wrote:Get a copy of your sleep study - you have the right to have that - and post it here for people to see.

Oh yeah, good idea. I'll ask for a copy on thursday, hopefully I'll get a copy and post it here.

ElvishKnight wrote:At night in bed if I am watching tv and I fall asleep without my cpap mask on I make those Exact noises. My wife will nudge me and tell me to put on my mask. Sounds like Sleep Apnea to me. When I had my sleep study I too could not sleep... I have insomnia/it was hard to get comfortable with all those wires hooked to me and I sweat and the suction things were coming off my body and the tech would come in the room all pissed at me.

Do you mean that you also experience both your airway blocking and make noises on your exhale? I hope your right when you say it sounds like sleep apnea, I would think that trained professionals would pick up on when my airways close. I always sleep through the whole night without awakening, but I guess my deep REM sleep is interrupted a lot. Anyway. Part of the problem with the sleep test is that some nights are much, much better than others. Not exactly sure what causes it, but high stress, demanding days usually end up in more apneas.

Julie wrote:Sounds a bit like asthma - trouble exhaling is a major problem. I wonder if you might have along with apnea or some other similar thing.

Hmm.. That's interesting. I don't know if I have astma, I've done one of those exhalation breathing tests done to me as part of an astma screening. My exhalation turned out to be weaker than expected by my specs, but I don't think it was really bad. But the reason they checked it out was that every single times (maybe 1 exception in my whole life) when I get sick it starts with an airway infection and ends with a bronchitis (even pneumonia two times).

I've never given it much thought, but shouldn't astma in turn mean that I should have the same exhalation problems while I'm awake? While I'm asleep it's not that my exhalation is weak, it's just that it's like it gets completely blocked.

The sound you describe sounds like what I've been told I sound like sometimes in my sleep. A few times I woke up during the exhale and heard the end of the wheeze. I just thought it was hypopneas. I decreased the exhalation relief just in case my exhale pressure wasn't enough to hold my airway completely open. I had a friend who always made a noise called stridor. Just from what I've read, it seems that whether the stridor sound is on inhale or exhale can help narrow down the probable location of the compromised air flow.

Be sure to get the detailed copy of your sleep report. It will have the breakdown of sleep stages, positions, etc. There may be clues in the reports. There is certain criteria to be met during testing to be reasonably assured the results are a good representation of your sleep. For instance, attaining REM sleep while supine. There's a difference been a study showing you don't have sleep apnea and a study not showing you have sleep apnea. I would want to know that. And that 40+ second event you mentioned - how low did your oxygen go? Sorry to hear you're having trouble getting your problems diagnosed. Hopefully the upcoming appointments will lead to some answers.