Lyme Files: Tinnitus & Hyperacusis

Tinnitus
I had tinnitus. An endless high-pitch shrill in my ear at all time. To this day, even though it is mostly gone, I hate white noise, pink noise and make a very conscience effort to adapt to my husband's need to have a fan on while we sleep.

Wiki says:

Tinnitus is the hearing of sound when no external sound is present. While often described as a ringing, it may also sound like a clicking, hiss or roaring. Rarely, unclear voices or music are heard. The sound may be soft or loud, low pitched or high pitched and appear to be coming from one ear or both. Most of the time, it comes on gradually.In some people, the sound causes depression, anxiety or interferes with concentration.

I don't remember when it started. I do remember when I talked about it to family, they said my hearing must be so good because I am young that I can hear things.

I remember always hearing things.

Some were auditory hallucinations -  was probably 10 at the time they started. More on hallucinations later.

(I build suspense like champ!)

Tinnitus will drive you mad and it got worse and worse through treatment. Since my brother was at college, I said I would sleep in there because it must have been the air in the vents doing something or it was the sound created by the sound barrier of the highway close by.

I just heard this range of ringing all the time.

I heard it just as loud in his room but I wanted to believe so badly I didn't.

So, there it was. A constant, nagging ringing.

Even while I had  PICC hanging out of me and getting treated, I needed to tell those around me some of this was in my head. Because. . .for 10 years, everyone told me everything was in my head.

Hyperacusis
I also had Hyperacusis - and to this day still get it sometimes though much more rare and it's temporary.

Wiki says:

Hyperacusis (also spelled hyperacousis) is a health condition characterized by an increased sensitivity to certain frequency and volume ranges of sound (a collapsed tolerance to usual environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly or painfully loud to that person but not to others.

It would be a normal day, normal whatever and BAM, sounds hurts! Things don't get louder, I intellectually know they are not louder, but the sound hurts. It's like instead of going into your ear an you heard it, it hits all the nerves in your ears and makes you want to fold your ears back like a cat or dog or go "WHY ARE YOU TALKING SO LOUD?"

This included my own voice - my own voice hurt to hear.

I wouldn't matter how low the music/voice was, it just hurt. As if the sound hit a certain part of my inner ear or my brain and covered it in a fuzzy blanket of hurt. Your voice hurts. This music hurts.

One of the places I still get this is when talking on the phone. I have to always explain my fear of the pain coming from sound as, "I don't like to talk on the phone," because no one believed that sound could hurt. And just like the tinnitus - it seemed to unbelievable to disclose. It was just another "thing" that was "wrong" with Amanda.

So, yeah. The phone. I hate talking on the phone because it still reminds me how bad the pain was. I don't like the feeling of a phone by my ear. I still sometimes wait for stuff to click in and hurt again.

Excuses I use:

• It's hard to hear with the traffic. 
• Must be my phone. I need a new one.
• I don't know where they put the receiver.
• This phone isn't good for talking.
• I'm always in meetings, I can't always talk.
• It takes too long to access voicemail, can you text?

One time a friend called and it hurt and I told her not to call me anymore - but she didn't have texting on her phone yet. I just didn't have the words - the legit mental ability - to tell her it wasn't because I didn't want to be friends, I was just in pain.

The natural flow of Lyme destroys your relationships. Insanity might desctory relationships but ignorance always does. And no one knew about Lyme back when I was sick - and that was in 2007.