Karen Bell

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Hi I’m a 45 y/o female who was diagnosed with OSA a couple of yrs ago. I am on the hypopnea side. I have almost no full obstructions, but my AHI score is high – 55 altered/restricted breathing events per hour. No central apnea issues, no restless leg.

It took many years to get a diagnosis, and like Sydney much of my life has revolved around trying to get enough/good quality sleep. Having energy for work, for friends, for hobbies, for a positive outlook, have been defining in my adolescence and in my adult life. I didn’t fit the profile of a typical person who might have OSA. I was skinny, don’t have thick neck, did not loudly snore (did snore intermittently but not very loudly), don’t drink/use sedatives that would affect my sleep….none of the lot of the STOP BANG indicators weren’t there. I just would complain to the doctor about “feeling tired”, having anxiety. I ate an SSRI for 20+ yrs for the “heart-in-the-throat” baseline anxiety I always carried around.

What I did have was a very small recessive jaw (runs on my mom’s side of the family), an enlarged tongue, a low-lying soft palette, significant sinus issues I had surgery to correct when I was 11, and extractions/headgear and orthodontics which as I’ve learned here probably made my vulnerable airway worse. It was my latest dentist (who had done a stint in sleep medicine during her dental training) who clued me in to having a narrow airway and risk of apnea. Eventually I mentioned it to my primary care provider and thankfully she was attentive to the feedback and immediately referred me out to the sleep medicine department.

Its been 2 yrs now since my diagnosis. My treatment plan is CPAP. I am not a mouth-breather, so its a pretty basic nasal cushion mask. I tolerate it well and am compliant. Full credit to the Apnea Board for helping me with everything I needed to make starting CPAP successful: https://www.apneaboard.com/forums/ I wasn’t referred out to a respiratory therapist or anyone else for help selecting equipment adjusting the settings or anything. This website really made the difference in sticking with it.

Improvements since starting CPAP

-Executive function. My ability to be clear-headed and deal with novel problems, do higher level reasoning is much improved. It only took a couple of weeks to see improvement as well. Before CPAP my brain felt like it was a shambles, like I had rocks in my head. New/complicated work projects or personal projects felt completely overwhelming and were ignored. Now I am able to navigate things that come up in life much better.

-Mood. I had had a lot of baseline anxiety and from the very first night of CPAP therapy that anxiety completely disappeared. I was astounded. I decided to stop taking the SSRI I had been on for this anxiety for 20+ yrs, and am doing fine.

-Sleep experience. While I am asleep, no more tossing and turning (I realize I think I was trying hopelessly to find a good sleep position for my airway). I am also getting good amount of deep sleep instead of fragmented shallow sleep.

Problems I am still dealing with despite CPAP

-Dental work. My narrow airway gives me problems at the dentist, making it difficult to breathe when work needs to be done in the back of my mouth. I can’t wear the CPAP at the dentist so this is a problem to which I don’t have a solution. I just have an arrangement with my dentist that I’m going to hold my hand up if I can’t breathe, and explain before every visit to the hygienist whether they’ve worked with me before or not.

-Feeling unrested after sleep. I still really struggle with feeling like I’ve had enough sleep, and feeling fully rested. I also have delayed sleep phase syndrome though, so it is always a challenge getting the 8+ hours I feel like I need, especially on workdays with morning meetings. It may be as simple as that.

-Waking up. Similarly, I struggling with waking up. It is very difficult to get myself out of the bed with lots of alarms and snoozing happening. I also take a long time for my brain to “come online”…usually a few hours after waking before I feel fully alert. This is somewhat unique to me; I don’t know anyone else with this challenge. Have done career change and shift change to try to best accommodate but still struggle to perform any cognitively demanding work before noon.

-Energy levels. My energy levels are somewhat improved from where they were before CPAP but I still struggle with tiredness and lack of energy. I do not have the natural stamina of other people, so productivity, fitness and socialization are still challenging. Whether it is due to the ongoing delayed sleep phase syndrome and/or other unknown physical issues, I cannot say.

I am really grateful to Sydney for telling her story, and look forward to the documentary! Please feel free to use my story or reach out for more information if I may be a resource to others. I am keen researcher and very interested in sleep medicine, airway issues, and being my own advocate. Have watched every seminar video on the website! Thank you for the resources!

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