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It finally happened. – iDunmed

I am a 21 year old male. For more than 12 years, I’ve suffered severe chronic sleep-onset insomnia, daytime fatigue, worsening attention span, hypotension, anxiety, the works. I had never even considered that they could all be connected.

My doctor always said worthless platitudes like “go on your phone less, blah blah blah.” I know plenty of people who see blue light before bed (I always dutifully put mine outside my room to avoid temptation at night), I know almost none who needs 3+ hours to fall asleep.

When investigating my hypothyroidism, I realized I had a peculiar pattern: my TSH was elevated, yet my T4 was completely normal. Based on this, I deduced that my symptoms were more likely caused by an under conversion of T4 to T3 (Antithryoglubulin antibodies came back normal, ruling out hashimoto’s). Causes include: chronic low grade inflamation, stress, elevated cortisol, and nutritional deficiencies. Now prior to me seeing an endo, I’d been on supplements containing thyroid specific nutrients – so it couldn’t be that. The most logical cause was cortisol. I have always felt stressed and anxious, and I had no idea why. I read about how dysfunction in the HPA axis could be caused by sleep disorders. I laughed that off – I couldn’t have sleep apnea. I’m not old and overweight like my father who has it and its hard for me to sleep – people with sleep apnea have a hard time staying awake, right? Besides I was tested when I was 8 and was fine. My hypothyroidism remained a mystery.

I don’t remember how exactly I came across UARS. But when I did, something clicked. Never had something so perfectly described me and encompass all my symptoms. This motivated me to go to a proper sleep doc and get a sleep study.

My take-home type 3 PSG showed borderline mild OSA – my AHI was 5 exactly. I asked my doctor about whether UARS was a possibility considering I matched the symptoms far better than OSA, and was told that since I didn’t have flow limitation during my study I couldn’t have UARS – and besides people with UARS have specific craniofacial characteristics. Except, I had precisely those craniofacial characteristics. Narrow palate leading to scalloping, small jaws, all a perfect recipe for upper airway resistance. The fact that flow limitation was absent was extremely confusing considering a stuffy nose while in bed has been a big complaint of mine.

I refused to believe I only had borderline mild OSA. How could I not have flow limitation? I always have terrible rhinitis when I’m in bed. All of this trouble motivated me to ask my doctor if I could be mailed my in lab PSG from when I was 8. When it finally came, what I saw blew my mind. My AHI (RERAs weren’t scored…🙄) as an 8 year old child, was 18. If you’re unfamiliar with the scale of severity for OSA in children, the classification of severe begins at 15. I was livid – my parents had always told me I had no sleep apnea. They had insisted I had none. It turns out, the doctor they went to for a “second opinion” told them most of my disturbances were hypopneas, therefore it wasn’t really sleep apnea. Nevermind 40 years of research showing hypopneas are just as damaging as apneas. The only “treatment” I received was a mild amount of palate expansion (didn’t even work, canines came in impacted anyway).

Since I met insurance’s arbitrary definition of OSA, I asked to be prescribed a CPAP. Upon receiving a CPAP, the first thing I did was get sleep and upload my data to OSCAR. I perused through my flow graph, and to my shock (not), nearly every single breath I had taken last night, WITH A CPAP, was flow-limited. My flow graph had the characteristic flat top on each breath. Not only that, but the APAP had been ramping the pressure so high my epiglottis was being pushed open and causing air to be leaked from my mouth. Now up to this point, I had been pushing for a type 2 PSG – someone on this site had linked a service that mails you a PSG and you hook yourself up to the EEG leads and you mail the device back in for analysis for a relatively low cost. I had asked my doctor for that since an in lab out of pocket would be to the tune of 17k. The short answer was basically no, I was fine. It was around then that I had read an interview with a sleep doctor who had mentioned a take-home type 2 PSG that didn’t require a doctor referral and could be bought on amazon that reported RDI accurately and could be used to diagnose UARS. I looked it up and it felt too good to be true – it used some technology that didn’t require EEGs so there wasn’t a bunch of tape on my head. I bought one, and the same day I got it I hooked it up and slept the best I could.

My results came today.

Full. Blown. UARS.

My diagnostic odyssey has finally come to an end. It only took a decade of insomnia, fatigue, declining attention span, and a stress disorder, but now I know the thing that is doing this to me, and I know I can be treated.

On the bright side, the letter about my PSG results from when I was 8 has the man himself Christian Guilleminault’s signature on it, so I think I’ll frame that or something.

/end rant

Some useful links if anyone might think they have UARS:

Hypothyroidism, UARS, and HPA:

UARS and Insomnia:

UARS and Attention Deficit:

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