Does it sound like I might have another sleep disorder on top of OSA?

[Thunderegg37]

This might be a bit long.

I'm a healthy 37 year old male. Not overweight, pretty fit/muscular, don't have a large neck size and virtually everything about me doesn't hint at sleep apnea. From my early teenage years until present, I have just been exhausted. Sleep 8, 10, 12 hours and I get up feeling like I'm falling on my face tired. It feels like I haven't even gone to bed yet after a full night of sleep. Most of my life has been tired for no reason. I've been to tons of doctors, had every kind of blood test and check. I literally feel too tired to drive properly, so I don't drive and haven't been able to. The times when I have before, I A) turned at the wrong time at an intersection due to not being focused and nearly got hit with someone else in the car. B) nearly hit a mailbox up the street because I overcompensated the turn. I feel "out of it" most of the way. I do my job because of repetition. Some days are easier than others. There are days when I struggle to literally count a small number of product at work (like 5 boxes of something, for instance). Other days, I can look at it and my brain does it automatically. As I go through each week, the end of the week seems to be progressively harder at work and I feel more and more tired. I'm probably getting "catch up" sleep of some type on the weekends when I sleep longer.

March 2018, I finally convinced a doctor to send me to an in-lab sleep study. I slept 2.75 hours for the whole study. It was the environment, I kept having to pee because all I could do was lay there trying to go to sleep in an odd place, etc. Their blanket was like sandpaper, their pillow was crazy high/stiff and I was uncomfortable. Should have brought my own. The result was 4.7 AHI, but 18 RDI (which I understand can indicate UARS simply because of the low AHI and high RDI that typically accompanies it as a symptom). 50 unclassified RERA events noted for just under 3 hours. I had about minutes of REM sleep during that time. Sleep doc refused CPAP on the basis that 4.7AHI wasn't sleep apnea. No central apneas or restless leg movement was noted. Snore index was 14.

Last year, I requested my own home sleep study (no doc was approval needed, but with legitimate lab-like equipment from a mail-order sleep center in another state). 5.2AHI. Lots of apneas/hypopneas. One apnae was up to 80 seconds. Most of them averaged 20-30 seconds. After mailing it back, that sleep clinic doctor translated the results and gave me paperwork that I gave to my ENT doc. She was floored that my sleep doctor wouldn't consider the home sleep study results to try CPAP, so she wrote a generic prescription for me. I asked for Air Sense 10 Autoset. I'm using the ResMed P30i nasal pillow mask. I first used the APAP mode to get an idea of my settings, then switched to CPAP mode to fine tune them. Settings are 7.8cm fixed CPAP. That's the setting where on some nights I get just a couple of apneas or hypopneas and maybe one or no centrals. Other nights I get several apneas, several hypopneas and sometimes a few central apneas. Both the in-lab and home study tested for central sleep apnea and neither showed I had it. My AHI usually averages 0.5 to a little over 1 with these settings. But I still feel AWFUL every single day. I fall asleep on the bus on a 30 minute ride on the way home. I fall asleep in the car on a 20 minute ride to the grocery store with a family member. My life has been nothing but tired, tired, tired. I fall asleep in my computer chair WHILE drinking a caffeinated soda.

I look at my data in Oscar. I have an extra home security camera with night vision and the DVR system is in my room connected to the computer. About every 20-30 minutes, I seem to just wake up and shift for no reason. I just open my eyes and then look up, wondering where I'm at. My work insurance kicks in a few months from now. In 2018, my insurance company paid $40,000+ for the surgery, sleep study, doctor visits, etc. So it isn't like I haven't been checking.

Over-reactive reflexes that no one can explain. I have "the shakes" lightly and I have had them since I was a young kid. I recently had some emergency events a few weeks ago that put me in the ER twice, a few days apart. I was at home getting ready for bed, felt a "cold" feeling in my chest, my heart started racing (140+BPM), blood pressure shot up, I was having massive dumps of adrenaline in my body to the point where I was yawning massively on a regular basis and shaking so bad that I could barely walk properly. 5-6 hours at the ER. Every kind of blood test that they could do showed normal. Everything. They ever did D-Dimer to check for a blood clot, checked for heart attack enzymes, etc. My heart rate was up, blood pressure was 160-170 and my face was hot and flush red with a pressure feeling. This happened twice and put me into two different ERs. At first, they thought I was having a heart attack. I had EKG's 3 times at the hospitals, gave urine samples, everything. They were puzzled. I went to a heart doctor and had an Echo Stress Test, walked on the treadmill and they looked at my heart in real-time with ultrasound, took pictures, video, etc. He said I'm healthy as a horse, in spite of the chest pains I was having, the high blood pressure up around 170/100+, high pulse rate and flush red face. He noted that my symptoms lasted way longer than a panic attack since they hung around for 4-6 hours. Seems to be a "fight or flight" response, adrenal malfunction or something. My GP doctor was puzzled and pulled the generic "anxiety" diagnosis, wanting to give medication simply to lower the heart rate and blood pressure. Heart doctor warned that it was simply covering up the symptoms. Never had anxiety cause me any problems like that and I'm wondering if it is related to my OSA or maybe I have something else on top of OSA like Narcolepsy (without cataplexy) or some other sleep disorder. Last year, a neurologist said everything was normal for someone my age. I even had an MRI scan of my brain. All normal. If I lean back on a bed or attempt to do situps, when I get to the halfway mark, my entire body shakes violently. They don't know what that is, either. Today at my last doc visit, I was even tested for a super rare little tumor on the adrenal glands. My body is malfunctioning and it is so awful while the doctors claim it is "anxiety" and just want to give a med to suppress it. I also get a swollen tongue from time to time with some pretty deep teeth marks on it all the way around - marks from both the bottom teeth from front to back on each side and also the top teeth all the way around. This causes canker sores and they basically line up with the pointed area right where my tongue would touch a particular tooth. It varies, so it isn't like I have just one sharp tooth causing it in one place. It happens everywhere. Thyroid has been checked a number of times, as well. I'm prone to canker sores and have had them even on my throat before, so it is hard to tell when they will pop up, even on the tongue. Hard to also pin it on just the swollen tongue because of that. Other times, my tongue seems a lot more normal. I was diagnosed with Geographic Tongue one by a dentist, which shouldn't cause that swelling.

I'm thinking of having another overnight sleep study + Multiple Sleep Latency Test for Narcolespy when I get the money together. I don't experience any Cataplexy-like symptoms.

Have any of you experienced this in relation to any sleep disorder?

[Julie]

I'd see if I could get another neurologist involved, but one with some real expertise in sleep apart from anything else.

[kteague]

It could be that your various symptoms won't all be traced back to the same root cause. In these situations it can be helpful to address any known factors in hopes the picture will clear as some symptoms improve. About your sleep study results, it may be that with better sleep your AHI would have been higher. I wouldn't accept your results as the final answer. As one whose multuple tests had a hard time identifying all my issues, in your case I think I'd be hopeful further testing could be more productive. I'm not big on useless retesting, but am glad my doctors persisted in finding answers. In the study where no limb movements were mentioned, were your legs wired and none were present, or were they not mentioned because they weren't included? Having narcolepsy be ruled out seems reasonable if all other sleep disorders have been ruled out. Hard to get a meaningful MSLT if one hasn't slept in the night leading up to it. Taking some comfort items might help your sleep lab experience. Are you on any meds that could be causing side effects? I remember one med I was on (a dopamine med) caused random shudders. Not sure if that's similar to what you experience. Some of your symptoms like daytime fogginess and enlarged tongue may improve with treating any sleep disordered breathing. My large scalloped tongue returned to normal after some months on CPAP. I understand the frustration of having very real problems hiding from the doctors. Good luck with sorting things out.

[Miss Emerita]

I would recommend that you see a neurologist so that he or she can assess you for autonomic hyperreflexia:

https://www.healthline.com/health/auton ... erreflexia