Sleeping With the Enemy: Insomnia and a Chronic Illness

There is a real and frightening unpredictability to my nights. It goes far beyond the normal worry over whether or not I will sleep. When my head hits the pillow, and sometimes an hour or so before, the sensations in my ears and throughout my head begin to amp up and plague me into the wee hours.

Some nights are worse than others, but I haven’t had a night in almost 2 years when I heard and felt peace and quiet. My days are the same, but the nights truly get to me. Without the distractions of housework and school, the symptoms that feed my insomnia have all the room needed to grow and take me over.

The early stages of Meniere’s disease

After nearly 2 years of visiting virtually every type of specialist out there, I am still dealing with what has been described to me as the early stages of Meniere’s disease.¹ On top of making my days miserable, my symptoms are robbing me of sleep and making me question my own sanity.

Sleep is hard enough to come by for this middle-aged mother of 2 young adults – it’s simply maddening to lie awake while hearing and feeling every sound around me reverberating through my head like so many big bass drums.

Pulsatile tinnitus

As  I try to drift off to sleep, I try with everything in me to find a position that will allow me to hear only the ceiling fan and my noisemaker. There just isn’t one. It hasn’t been possible for me to do that for almost 2 years. Why would I think any given night would suddenly be different?

The sound I hear, predominantly from my left ear, mimics the sound of my own heartbeat. It’s disconcerting to say the very least. It’s something I think about all day. To try to rest while dwelling on it – well, that’s just torture.

Experiencing hyperacusis

Over the last year, I have developed an interesting but equally annoying symptom that often shows up at night. I have the distinct pleasure of experiencing hyperacusis. Hyperacusis is an increased sensitivity to even the most normal and basic sounds in the immediate environment.²

This means that even the sound of a fan – the pulsing of its blades as they slice through the air – creates intense discomfort for me. Bedtime should be a release from this, but it isn’t. I toss and turn and try to come to terms with the fact that I need the noise in order to drown out the humming of the tinnitus, but the noise itself is creating a whole new set of problems. It’s a lose-lose situation and the perfect recipe for insomnia.

A long night ahead

So, I am looking at the clock. It’s 9:41 PM, and I have put off getting ready for bed because I dread it with every fiber of my being. As I type this, I am trying desperately to concentrate while I feel the pulsing of the oscillating fan bounce around in my head.

Today was a hard day. Virtually every noise has been painful – from the sharp sound of plates clinking together as I dried the dishes to the not-so-gentle-to-me hum of the air fryer. I know it will be a long, stressful night. I am at a point where I don’t even want to try to sleep – and that is a dangerous place indeed.

Do you have a chronic condition that impacts your sleep patterns? Share with the community in the comment section. We would love to support you.