The Epworth Sleepiness scale is used to assess likelihood of sleep apnoea, and I find it confusing. I rarely feel 'sleepy' or 'drowsy', I have always been that way, possibly due to hyperactivity (ADHD) and/or chronic anxiety, PTSD, pick one. I only feel drowsy or sleepy occasionally, and when experiencing a crash or flare and feeling hugely fatigued I feel wired, not drowsy. That means when I complete the Epworth scale I score very low despite the fact that I am always 'tired' and have always slept very lightly, woken throughout the night, and rarely felt good in the morning. How does this make sense? Has anybody else had similar issues and suspected or explored sleep apnoea? Edit spelling
I have sleep apnea (tested) and would not describe myself as sleepy or drowsy. Did sleep a great deal on the first 10 years of ME but that was more of a viral feeling. In the mornings I feel terrible but well beyond 'sleep or drowsy'. My sister was refused sleep apnea testing as she didn't score for the daytime sleepiness although she snores very badly and feels awful in the mornings.
So we need someone to investigate how effective the Epworth scale is in identifying sleep apnoea in people with ME.
I was given the Epworth questionnaire when I went to the sleep clinic in 2008. It didn't make sense, I scored the lowest score despite having severe sleep issues. It doesn't measure severity of insomnia or poor quality sleep. You can be extremely tired but not sleepy.
That was one of my most amus/confus-ing moment in my medical history, trying to explain to sleep clinic specialists that I am not sleepy, nor tired, not somnolent, that fatigue means something else entirely. Much confusion ensued. I don't think I got across. It was pretty much a waste of time, frankly. But the poor vocabulary around symptoms is seriously one of the biggest issues in healthcare and I don't think it gets fixed any time soon.
Do you know if you snore? I think I probably do but when I’ve stayed in other peoples houses they say they haven’t heard snoring. I wondered about trying to record on my phone. I wake up every few nights with a dry mouth as if it’s been open. Also I’m overweight. So perhaps they would accept that as showing enough risk to justify a sleep study. I wonder whether they would consider sleep info from a Fitbit as any use. Surely they can’t say the questionnaire is infallible.
Maybe I should just say "yes I am sleepy all the time" and I have been known to snore, although its been 3/4 years since I shared a bed with someone! I also have funny jaw alignment which I think I heard can be related. So much prep going into planning for a simple conversation with a medical professional...I heard its up to a three year wait for the sleep apnoea clinic too
If fudging a bit on the Epworth Sleepiness questionnaire is the only way you can get a sleep study authorized, I'd do it. If you do have apnea, it's very important to have that addressed. Anyone can have apnea, whether they snore or not or whether they are thin or heavy. These days cpap masks are much better than they used to be, and many people use dental appliances to treat apnea instead of cpap. Vik Veer, a London ENT surgeon, has great youtube videos on apnea and alternatives to cpap.
I was thinking if the nurse practitioner does think it's worth following up I might try a mouth piece and pay for that myself, while waiting for the referral. I sure hope I have it, what an easy fix!
