Tag: Symptoms

Symptom list:

• Autophony – person’s own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
• Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
• Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
• Pulse-synchronous oscillopsia
• Hyperacusis – the over-sensitivity to sound
• Low-frequency conductive hearing loss
• A feeling of fullness in the affected ear
• Pulsatile tinnitus
• Brain fog
• Fatigue
• Headache/migraine

I struck out the things I wrote specifically about as far as I can tell. Want to get the descriptions in before December. So…

Pulse-synchronous oscillopsia. Yep, that’s the little dot in my eye that goes ping ping ping or ponk ponk ponk except with a little dot I can see instead of a sound but what’s really the difference between dots and sounds and touches.

Hyperacusis, over sensitivity to sound. Yeah. I think I’ve complained about the sound of my typing. And anything else I hear.

Low-frequency conductive hearing loss. I often wonder if it’s my hearing that’s worse or just the amount of other things I hear that make it harder to hear what’s around me. there you have it.

Fatigue. Yeah. Yeah yeah yeah. Oh yeah.

Headache/migraine. That was what started it all. The quest to find out why my head has been hurting since May of this year.

There. All symptoms written. Sorta. Mostly.

The symptom in the list is Autophony. I’m writing more generally about my auditory symptoms because today is a bad auditory symptom day. Is my typing so loud because I hear it through my fingers or because my hearing is super sensitive? I don’t know.

Noises outside my head cause feedback in my ear, make me dizzy, and sometimes makes my eye see little pulse circles.

Typing is making me sick. I have to stop.

Vertigo is an interesting symptom. My response to vertigo is part of why the experts think my SCDS is a birth defect that became worse  in the last year (probably due to head trauma or maybe just finally bad enough to notice). When they asked me if I was dizzy I said, “what  is dizzy?”

What is dizzy? I guess the best answer  is the feeling you get when you spin in a circle long  enough. That doesn’t feel very different from  everyday for me.  I mentioned I like being on boats and the technician running the vertigo tests was surprised. What can I say? I’m an adventurer. I also like the swoopy feeling of take-off and landing on a plane. I get the best adventures from the simplest things.

Balance is something I’ve always worked hard at. I was an awkward child who strove to be graceful. I took dance and gymnastics and played baseball. I didn’t mind being the worst at things because I just wanted to do them. Later in life I practiced more dance and yoga. I developed all sorts of ways of feeling where my feet were and how my body was to memorize where it should be. It was never a sensation I felt in my ears but more an alignment of sight and muscle. Needless to say I did well enough but never excelled.

I also didn’t think this was strange. The fact that spinning in a circle made little difference to how I felt  seemed like a sign of superior balance not a sign that I was constantly imbalanced. Sure it took six years to learn to ride a bicycle without training wheels and I was constantly spraining my ankles but that was a physical weakness of some sort right?

Looking back now my whole life has rearranged itself. Those times I collapsed from exercising? Maybe my blood sugar wasn’t actually low. When I broke out in a cold sweat and had to lay down at the state fair? Maybe it was the loud crowd and the spinning rides not a strange flu that had no fever and went away with bed rest.

I’m questioning the explanations of a lifetime and I have no facts to back any of it up. It wasn’t until August 25 of this year that I got the specialized CT Scan that showed there was a hole in my inner ear.

It’s very disorienting. It changes my reality too much. So am I dizzy? Yes. I get seasick when things move around me, even little things like light reflected from a car spinning past through the window. I lean on walls and lately have even started swaying which feels like the first step towards falling.

The technician at the surgeon’s office says the tests prove I’m dizzy whether I know the word for it or not. I really appreciate that. It’s like having a thermostat to tell me if it’s cold. Sometimes it’s cold and I’m not or it’s warm and I think it’s cold. A measure is a wonderful thing.

Being dizzy, for me, is not the world spinning around me like the movies make it appear to. Instead it is me spinning inside the world.

I normally catch every cold and flu. This year has been surprisingly light on “normal” sick while experiencing the “this can’t be happening” sick. I think because I’m resting up a lot and getting out a lot less.

A feeling of “fullness” in my ear is an every day portion of my SCDS symptoms. If I were a dog I would be shaking my head all the time. It feels like I have water or a cotton ball in my ear. It wasn’t until I was diagnosed and saw “a feeling of fullness in the affected ear” on the symptom list that I stopped compulsively cleaning a perfectly sparkly clean ear. Imagine a dish that appears clean but feels greasy no matter how many times you wash it.

Last night I woke up because my ear felt so full I could have sworn I was drowning. Four in the morning and completely adrift I cleaned out my ear. It didn’t help. I tried going back to sleep but kept waking up. Then I started waking up coughing. At about seven I sent a sick note to work and took some Robitussin. I slept well for a while, no more coughing, woke up around eleven and realized Robitussin is super dizzying (for someone with SCDS).

It turns out that while “there’s something in my ear” is the normal symptom there’s another level of it for SCDS with head cold. Let’s call it the “Star Trek Wrath of Khan Ceti Eel Experience.” I was tempted to link to the worm burrowing into Chekov’s ear but instead here’s a picture of Chekov knowing the worm is on it’s way there as it crawls across his face. An image search of “ceti eel” will give you all the graphic detail you need to sympathize. Or if you ever saw Wrath of Khan the only more memorable scene is Kirk screaming Khan’s name. I put forth that people focus on that scene to get the ceti eel scene out of their minds.

My ear is currently back to a feeling of fullness. More full than some days but not as bad as the four a.m. wake up.

Nausea is not listed as a direct symptom of SCDS. It’s a sub-symptom listed under Tullio phenomenon. Basically everyday life makes me motion sick. Like right now my monitors are shaking just a  tiny bit and the sound of my typing is like being on a boat during a storm.

I think my “favorite” symptom is one called “brain fog.” Seriously. Brain fog.

My original search for answers was based on what I considered my primary symptom: headaches.

I thought that the confusion and inability to focus was just a side effect of having a headache that lasted for months without a break. Then in discussing Superior Canal Dehiscence Syndrom (SCDS) with my doctor I found out that it is considered a symptom all on its own.

I mentioned this to a coworker and he said something similar happens to new parents. He says the exact same thing every time I tell him that brain fog is a symptom of SCDS. He’s a parent and good at repetition.

So yeah, I can’t think as well as I used to. Really, physically can’t think as well. I’m late more often, forget that I have to be places or call people or do things. I forget how to do things. People’s names when looking straight at them. Words. Putting thoughts together is an effort.

It became enough of an issue when I almost missed one of my doctor appointments that I sat Isaiah, my husband, down and had a talk. Now my husband comes from a very relaxed family and I love him for it. Our relationship has always been me organizing and him keeping me from getting stressed over organizing. We are a good partnership. He took on all my chores and takes wonderful care of me without hovering.

The talk*:

Me, “Isaiah, I’m not doing well. We almost missed that doctor’s appointment and I can’t be responsible for remembering them. I need help.”

Isaiah, “Ok, we’ll get you an iPhone.”

Note how adeptly he dodged being responsible for me. Good man!

*It should be noted that when I “quote” I am never really quoting, it’s always a paraphrase based on how I remember it.

Anyway, I have an iPhone now that I lean on for calendaring, note taking, reminder lists, whatnot. I’ve also starting taking a ridiculous number of pictures of the cats.  Brain fog. Yeah.