The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
Margy

Avatar / Picture

Registered:
Posts: 194
Reply with quote  #1 
Hi. This is my first post. I'm glad I found this forum, because there is nobody else anywhere near that knows about this, as far as I can tell.

I have had hyperacusis for maybe two years, but it has gotten worse in the past nine months. I searched the internet repeatedly until I found this forum and this site that has so much great information. Everything I have read on the main site confirms my experience.

I have read Dr. Jastreboff's book on TRT and hyperacusis, and will re-read it to get a good grounding in the topic. I have been trying to listen to some pink noise, slightly modified to more of a brown noise, which is more pleasant to my ears. I have been using the Apple ear pods, but I am unable to tolerate them for more than a couple of hours, and I know that the key to desensitization is low-level broadband sound for many hours in the day.

I read on this site and other places that it is important to have headphones that are open to outside noises, so I ordered some. I just hope they are comfortable enough that I can use them for enough hours without feeling like I am suffering through it, since I think the experience of suffering is part of the problem! Dr. Jastreboff emphasizes that it should not be aversive, but it should be pleasant if possible. I ordered some today that I hope will work.

I have the usual symptoms of everything seeming very much louder than it ever did before, and I have burning in my ears and burning in the nerves surrounding my ears and behind my jaws. In addition, I have something that I have not seen mentioned: My muscles in my scull are startling repeatedly with changing sounds, like when I talk (I am a teacher) and when there is water in the sink, crackling cellophane, etc. My temporalis is especially twitching; also the muscles at the back of my neck are pulling with changes in sound. This builds up over the day, and I am afraid that might be making me worse. But I won't protect my ears too much because that will make me too sensitive to sound; However, I can see why people are driven to protect their ears! I know I must have tonic tensor tympani, because I can feel that startle reflex make my ears burn. But I also feel the startle in those other muscles, which I have not heard of before.

This all started with repeated dental surgeries, which had me at such a nervous state that I walked many times a day to distract myself, and then sounds from the surrounding area kept attacking me just when I wanted peace. I looked to the outdoors for peace and comfort, but the loud, noisy humans were just too much. I know that's how it all got started. I was vulnerable to noise, my nervous system was in a state of near-panic, and I sought peace but was surprised by noise.

Does anyone have any similar experience with muscles going into little spasms, not just tensor tympani but also neck muscles, reacting to sound, especially changes in sound? Any advice on headphones that are lightweight and comfortable?
0
Rob

Registered:
Posts: 4,049
Reply with quote  #2 
Hi Margy and welcome.

Have you considered working with a doctor who is knowledgeable about treating hyperacusis? 

Rob
0
Margy

Avatar / Picture

Registered:
Posts: 194
Reply with quote  #3 
Hi Rob. I live in Nebraska and I would have to go a long way to get TRT help. I know how to do it. I suppose it would be nice to get LDLs done, but really I just want to do the reading and the thinking and work on it myself. It looks like working with a professional would be very expensive.
0
Rob

Registered:
Posts: 4,049
Reply with quote  #4 
Margy -

The loudness discomfort level test is inexpensive and a very valuable diagnostic tool.  It would be well worth it to find an audiologist in your area who can administer a frequency-specific LDL to you. 

Rob
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.