Phonophobia

Hi all,

How many of you experience phonophobia and how does it present itself with you?
I’m becoming abnormally sensitive to sound (even my own voice) and I am “feeling” sound in the back of my head, rather than hearing it.
(If that even makes any sense!)

Heather

Hi Heather,

I experience phonophobia too. My sensitivity varies with my other symptoms. When everything else is flaring up, my sensitivy to sound goes crazy. The worst is when I am in a car with my husband or my mother. They tend to talk loudly when they are telling a story and it sounds like they are yelling through a megaphone right into my ear. It makes me cringe. My own voice doesn’t usually bother me. In the beginning of all this, back in October through December, I had ear fullness. Then it was like hearing loud sounds underwater. Very strange.

Cheers,

Marci

Aside from the motion intolerance, feeling like the straw man while walking, and whipping sensation both inside my head and what was in front of my eyes, when i was at my worst, the phonophobia was by far my most distressing symptom. It made me CRAZY!!!

I would hear the windows make tinkling noises if a car would drive by. I would hear the cat walk at the other end of the house. I would hear this hollow sound coming through all the vents in the house - ALL THE TIME. Once I went into the closet to try to get away from it.

I never felt it, as you describe it, but that whipping feeling i describe, if there was moderately loud noise, especially toward the end of the day, my head actually would whip from one end to the other - like my head was a punching bag.

The sound of water, running in a sink, in the shower, any sound of water, had a high tinkle to it.

All of this has calmed down quite a bit. I no longer hear the glass tinkle when people cut their lawns. God, last summer was noisy - and we live on 3 acres in the woods - most people have 10+ acres. The glass would even tinkle when an airplane would fly overhead. ugh! I thought I was going MAD!

When I say I feel it, it’s like today for example.
My head already is bugging me and I hear a dish hit the counter, from my Dad.
Well the sound actually goes right through my head. So I hear it, but then feel it in my head–sharp!
Then I jump since it makes me nervous.

I mean how insane is this???
I’ve had enough of today, so I just had a meeting with Mr. K! :smiley:

Heather

Hi Heather,
When you mentioned the dish hitting the counter, that was exactly the same for me when I had my Big Crash. I remember that I was just coming down with all this weirdness and I had my family visit for my son’s birthday. My brother was stacking the dishwasher and every single noise made me cry out for him to stop, that the noise was driving me nuts. It progressively got worse (as did all the MAV symptoms) until I couldn’t even tolerate my family’s voices, they had to whisper whilst they were around me. I had to turn the telephone onto speaker on the handset as I couldn’t put the phone to my ear and I had to wear ear plugs too. My husband even purchased those industrial head gear like they wear at the airport for me to wear around the house (not very attractive). With the phonophobia I also had acute sensitivity to the canals inside my ear. I had to do the ‘dizzy test’ where they flush water in your ears at the hospital to test for Meniere’s and the water flushing was just soooo painful. Fast forwarding 2 years and 3 months, I can answer the phone no worries and generally everything has drastically improved, conversations absolutely no worries, but I still don’t enjoy just flicking on the radio to sing to music, so there’s just a bit of residual I suppose. I haven’t even contemplated a rock concert yet, but that’s on my 3 (or maybe 4) year anniversary of my Big Crash!!! :stuck_out_tongue: I still get ear aches, perhaps just a second or two lasting but only a few times a month so the condition has enormously improved over time, so I hope the same for you. Oh, when I go to the gym circuit class now, the music is really loud, so I wear ear plugs and have no bother.
regards, Judy

I hear ya Judy - and people got real irritated with “all my sensitivies” and having to walk on egg-shells around me. (well, when I say “people” I mean my husband, cause he’s the only one who saw me).

I’m a sensitive person and before i got my diagnosis i think he was thinking i had just become even more hypersensitive than usual, which is true, but i with a real diagnosis for it, not just “crazy, annoying” me.

We’re a great couple, but we do have our nitpicks.

— Begin quote from “Julie”

I’m a sensitive person and before i got my diagnosis i think he was thinking i had just become even more hypersensitive than usual

— End quote

This makes me wonder… I have always been a bit hypersensitive too, of course that multiplied by at least 10 when the MAV kicked in. Some everyday noises have always been irritating to me. My youngest daughter is fidgety and I am always on her case to stop tapping this or clicking that. Even worse than that is my boss eating his vegetables at his desk. He chews with is mouth open and I swear all that crunching and slurping would drive me to violence if I didn’t have headphones to block it out. As soon as I hear the ziplock baggie open up, I race to my sound blocking headphones and click on the music. It drives me nuts!!! :evil:

I agree, dishes clanking together are the absolute worst now that my senses are on high alert. I have to go to different part of the house when the dishwasher is being loaded or unloaded. I can feel that noise in my head too, just like Heather. It is awful. The telephone is also trouble. I sometimes have to hold the telephone away from my ear, or turn the earpiece volume way down if I’m having a bad episode. Otherwise, there is this horribly loud background static or buzzing in my ear behind the voices.

Does anyone have sensitivity to cold air blowing in your ears?

I went through the cold air thing earlier this year. I didn’t even know why but I kept putting a scarf over my ears or my hood up to cover them.
Since when are ear issues MAV Marci? Were you DX’d with an inner ear problem as well?

Heather

i have always, my entire life, and worse as I get older, protected my ears and my neck from cold air. Even in the summer mornings, i put a hood up when I walk my dog. People must think I’m crazy. And since I project myself onto my dog, i find myself putting a sweater on my dog whenever I’m cold. I remember a few years ago, it was pretty warm outside and my dog had a sweater on. This big guy who cut our lawn saw her and said “I think she’s HOT!” I thought, “I think he’s right” I try to be more aware of my boundaries between me and my dog :slight_smile:

Did you HAVE to mention the chewing thing? You just spoiled my appetite - drives me crazy! And it was definitely worse when I was worse. I seem to be able to tolerate it much better these days.

— Begin quote from “Heather”

Since when are ear issues MAV Marci? Were you DX’d with an inner ear problem as well?

— End quote

I guess it has something to do with the tie-in of the vestibular system. No, they originally thought I had Meniere’s, but then determined it was MAV. I have always had ear sensitivity to cold. Cold air in my ears would give me an awful earache and headache. Now, it also kicks off serious vertigo. The ENG in January really messed me up. The clinic I went to uses cold and warm air rather than water. Having the cold air blown into my ears was worse than childbirth and the recovery was worse too. My hearing test and ENG were normal so I moved on from the ENT to a neurologist who diagnosed MAV.

— Begin quote from “Julie”

Did you HAVE to mention the chewing thing? You just spoiled my appetite - drives me crazy!

— End quote

Sorry! Did you know that celery has a distinct odor to it. Well, it does when it is being ground to a green stringy paste by someone who eats like a cow chewing its cud. I will never eat celery again. Is it on the migraine diet? Maybe if I could get him to eat all the things I am not supposed to, they will be easier for me to avoid! :stuck_out_tongue:

— Begin quote from “MarciM”

— Begin quote from “Julie”

Maybe if I could get him to eat all the things I am not supposed to, they will be easier for me to avoid! :stuck_out_tongue:

— End quote

— End quote

you may have found your cure :slight_smile:

— Begin quote from “MarciM”

The ENG in January really messed me up. The clinic I went to uses cold and warm air rather than water. Having the cold air blown into my ears was worse than childbirth and the recovery was worse too.

— End quote

How did the ENG mess you up and how did you recover?

Heather

The ENG threw me into a bad episode. I’ve been riding a roller coaster with this since October. I’ll feel really lousy for a week or two and then I will gradually come out of it until I feel around 80-90% of normal for a day or so then I’ll flare up again. Before the ENG, I had about two weeks of feeling not so bad. The ENG instantly stirred up the vertigo, nausea, migraine, and everything else. It also brought on a new symptom of tingling on my face, arms, and hands, which has never gone away. I now have it 24/7. The vertigo improved gradually over a few days, although it took a few weeks to come back out of the stupor. The ENG certainly didn’t cause my underlying problem, but it definitely exacerbated it. The recovery was through lots of Meclizine and sleep.

this is the second person i’ve heard of who is still waiting to fully recover from an ENG.

In the 21st century, is this the best these jokers can do to figure out what’s “wrong” with a person’s vestibular system?
Here, let us torture you so that after we tell you that your inner ear is okay, it will make you FUBAR.
What kind of “logic” is this?

Can you imagine what would happen to someone with extreme motion sensitivity?
I remember a theory I was working on called 'Taking On The Motion of X."
X, meaning whatever the stimulus is: water movement, car movement, vibration, etc.
It’s as if our brain becomes an academy award winning actor, but rather than play a “role,”
the brain actually becomes whatever it comes in contact with.
So what would happen to someone who can take on the motion of X, then has a rotary chair test?
Who’s to say the 360 spinning will ever stop for that person?
Who’s to say it won’t become a brand new symptom?

Heather

I’m gonna change the subject back to cold air in the ears -

My ears were never sensitive to cold air until all of this started. I grew up in Michigan (cold) and now live in northern Florida. As a kid, I ran around without a hat all winter long (when my Mom wasn’t looking), now I can’t go out if the wind is blowing when the temp. drops below 50 degrees. (Believe it or not, it does get cold here in the winter - (cold to me now is under 60).

My ears ache “extremely” bad. Abnormally bad!!! People look at me like I’m insane. But it HURTS. The pain does not let up until I go inside and warm up, and it goes away very slowly.

I never attributed it to the Migraine stuff, I wasn’t diagnosed with any ear disorders (except they tried in the beginning to say I had Labrynthitus). Anyone else have ear pain the cold???

Kim

Kim,

good to see you, i know what you mean by extremely bad. I get that with any kind of wind in my ears, warm or cold. and it takes a very long time to go away. I have a hooded sweatshirt with me 12 months out of the year.

Julie

How weird is this-- getting pain in the ear on the same side of the head you have eye pain and strain.
I have had some really weird eye/ear symptoms this year.

Heather

Kim,

You described my response to cold air in my ears perfectly. It becomes excruciating if I stay out in the cold too long. I grew up on Ohio (also cold) and don’t remember having this problem as a kid. I’ve had the pain response for several years, but the vertigo reaction just started this past winter when all my other symptoms of MAV began. It may not be a common trait of migrainers, but cold air in the ears is definitely a trigger for me.

Marci