Curious About An Odd Symptom

[Kamma]

I'm just wondering how many people experience pain in their ears and hyperacuity to sound when they get glutened.

When I was at my worst before getting diagnosed, I would get these pinching pains in my ears and sounds were unbearable to me. I also had extreme sensitivity to vibrations. Both sound and vibrations would cause vertigo. I had all the vestibular testing done which came back normal and I was diagnosed with Tullios Syndrome which is sound induced vertigo but since I have been gluten free, the hyperacuity is gone and vibrations dont bother me as much.

Anyone else experience this?

[ravenwoodglass]

I have had 'superman hearing' since I was a child and still do. I keep the TV on whenever I am awake and do the sleep feature at night so it turns off after I go to sleep. Otherwise I startle over every little noise. I won't keep a regular clock in my house anywhere because I can hear it even if it is downstairs and I am upstairs. That hasn't changed going gluten free.

My gluten ataxia which affected my balance and other things has resolved gluten free though.

[pricklypear1971]

I don't know if this is the same thing or not, but around dx time when I was getting shots of steroids to reduce the rash (DH) my adrenals went into overdrive...

As an example, a shower would overstimulate my senses - sound of water and sensation of water hitting my skin was too much.

After going gluten-free, the overstimulation would occur if I got glutened or my rash broke out.

So, gluten affects my adrenals (as well as steroids, which is why they are a big no-no for me).

[Kamma]

  On 1/23/2012 at 12:12 PM, ravenwoodglass said:

I have had 'superman hearing' since I was a child and still do. I keep the TV on whenever I am awake and do the sleep feature at night so it turns off after I go to sleep. Otherwise I startle over every little noise. I won't keep a regular clock in my house anywhere because I can hear it even if it is downstairs and I am upstairs. That hasn't changed going gluten free.

My gluten ataxia which affected my balance and other things has resolved gluten free though.

Ravenwoodglass, thanks for this. Experiences like yours and mine give new impetus to the words, "Silence is golden." Haha. When I would have to walk down the street during my worst times, I looked like a drunk reeling back and forth and the sounds of traffic rumbling and whooshing past me would give me waves of vertigo and make me cringe at the loudness of it all. I used to brace myself before going out the door and repeat the lines from the desiderata, "Go placidly amid the noise and haste and remember what peace there is in silence", over and over in my head while I was walking and tilting over. I hated sounds!

[Kamma]

  On 1/23/2012 at 12:35 PM, pricklypear1971 said:

I don't know if this is the same thing or not, but around dx time when I was getting shots of steroids to reduce the rash (DH) my adrenals went into overdrive...

As an example, a shower would overstimulate my senses - sound of water and sensation of water hitting my skin was too much.

After going gluten-free, the overstimulation would occur if I got glutened or my rash broke out.

So, gluten affects my adrenals (as well as steroids, which is why they are a big no-no for me).

It surely sounds similar, pricklypear. Running water and the toilet flushing would always get me as well. I'll have to look into the adrenal end of things.

[pricklypear1971]

Well, adrenal healing takes a while. Don't be shocked if you take 2 steps forward, one back.

Keep it clean (food, liquids), try not to eat too much sugar. I went through a hypoglycemic phase of healing. After that, I haven't had the adrenal issues I had previously when glutened. Maybe my body was adjusting.

[Kamma]

  On 1/23/2012 at 7:08 PM, pricklypear1971 said:

Well, adrenal healing takes a while. Don't be shocked if you take 2 steps forward, one back.

Keep it clean (food, liquids), try not to eat too much sugar. I went through a hypoglycemic phase of healing. After that, I haven't had the adrenal issues I had previously when glutened. Maybe my body was adjusting.

Hey! You mentioning the sugar thing reminded me of something that happened this week that I'd like to as you about: I rarely eat sugar, sweets, pop or anything like that but this week I baked myself a coconut merangue rice flour square thingy and stuffed the entire thing into my mouth. The next day I was depressed, anxious and kind of had that panicky feeling all day. I kind of made the connection a few days later that it was the sugar and made a mental note not to do that again.

Is that what you're hypoglycemia was like?

[pricklypear1971]

No, mine was a shaky, bottom-out feeling immediately when my blood sugar was too high or low. Like I was crashing fast and had to get food in there.

I was hungry every 2 hours, had to eat protein and slow carbs (turkey and an apple for example). Fiber helped a lot. Cuban black beans cooked with a zillion veggies over rice was the perfect food.

For some reason I could eat ice cream. Maybe the fats with the sugar???

But that's me...it could still be adrenal, just expressed differently. Or, you could have a problem processing sugars. There are others here with sucrose/fructose issues.

[ravenwoodglass]

  On 1/23/2012 at 7:02 PM, Kamma said:

Ravenwoodglass, thanks for this. Experiences like yours and mine give new impetus to the words, "Silence is golden." Haha. When I would have to walk down the street during my worst times, I looked like a drunk reeling back and forth and the sounds of traffic rumbling and whooshing past me would give me waves of vertigo and make me cringe at the loudness of it all. I used to brace myself before going out the door and repeat the lines from the desiderata, "Go placidly amid the noise and haste and remember what peace there is in silence", over and over in my head while I was walking and tilting over. I hated sounds!

I know what you mean about walking like your drunk. I used to compare it to walking on a ship's deck in the high seas. I got so bad I needed canes for support. For some reason I used to always feel like I was falling to the right.

The one good thing about hyper hearing is the birds in the woods. So many little voices singing pleasent tunes. I love being away from city noise and able to listen to nature and hear the rustles that tune me into a glimpse of a fox or a deer walking by. Big rustles make me walk much faster though.

[Kamma]

  On 1/23/2012 at 8:39 PM, ravenwoodglass said:

I know what you mean about walking like your drunk. I used to compare it to walking on a ship's deck in the high seas. I got so bad I needed canes for support. For some reason I used to always feel like I was falling to the right.

The one good thing about hyper hearing is the birds in the woods. So many little voices singing pleasent tunes. I love being away from city noise and able to listen to nature and hear the rustles that tune me into a glimpse of a fox or a deer walking by. Big rustles make me walk much faster though.

Yup, you never know what and how big the thing is that's making the big rustling noises.

...and yeah, you're right. The birds in the morning on a warm summer day are awe inspiring and peace bringing.

Funny, but I always would tilt to the right as well. Are you right handed by any chance? Wonder if that makes a difference.