The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
Shizune

Registered:
Posts: 3
Reply with quote  #1 

Hi I'm new and wanted to give this a shot. Sorry for the long post. Just wanna cover all bases.

Early June, I had exposure to some toxic chemicals from a spray sealant. The product in question is listed as a Category 2 in potential CNS/PNS and auditory organ damage. I mostly had breathing problems at first but not long after I experienced strange issues with my ears that have developed rapidly since then.

Week of June 7th and 14th- Noticed music was a slightly lower pitch. Burning sensation in inner ear. Everything else sounded normal, no sensitivity.

Week of June 21st- Noticed having a more violent reaction to sounds like dogs barking

Week of June 28th- Noise sensitivity increasing by the day. Spoons, doors closing, any sudden sharp sounds, even shifts in my air conditioner cause issues. Thunder and fireworks send me into a panic.

Week of July 5th- I noticed absolutely no issues and thought I was cured. Saw an audiologist who claimed that H from toxin exposure has a better recovery rate than those with acoustic injury. I was hopeful. Then a day later I played a game that involves loud music. Felt fine..until a few days later

I tried listening to music through my headphones at the lowest volume I can tolerate. Not long after I experienced ringing in my ears. Haven't listened to music since sometime in the week of July 12th, I reckon.

Over the weeks it's been up and down, but I haven't had a pocket of "good days" ever since. I got some Bose noise cancelling earbuds, and I've been trying to feed some softened pink noise through them a few hours a day. I am definitely more sensitive when I take them off though so I fear they may be doing more harm than good. I spend most weekends at hotels trying to "recover"

This morning, 7/21, I once again experienced ringing in my right ear (tinnitus?). Since then I've had it all day.

I am getting so many conflicting messages on the internet. Most docs say to expose yourself to environmental noise (which honestly doesn't bother me much at all) as possible to desensitize and not rely on earplugs. Others have been telling me to wear ear plugs AT ALL TIMES, even if a noise doesn't bother me (i.e. driving a car) because my hearing could become even more damaged. Now I'm paranoid even having my air conditioner running, which I can tolerate, has been damaging my ears without me knowing.

This is all so new to me and I'm terrified. I am waiting on a neurologist appointment since I have other damage from the incident, but I fear getting an MRI. The audiologist won't test me for H until I get a scan but it's a very safe bet I have it. He's also charging me out the wazoo for things I did not expect, and claims most insurances won't cover services, so I'm pretty nervous that my life is going to be destined to noise sensitivity and spending thousands for treatment regularly.

 

Any insight would be helpful. I want to nip this in the bud as early on as possible, especially since my case is still fairly mild. I cannot imagine living like this for years on end.

 

0
Aplomado

Registered:
Posts: 695
Reply with quote  #2 

Most docs say to expose yourself to environmental noise (which honestly doesn't bother me much at all) as possible to desensitize and not rely on earplugs.

This is correct

Others have been telling me to wear ear plugs AT ALL TIMES

NO NO NO NO!!!!
------------------------

I recommend that you wait on the MRI, it is unlikely to show anything at all, and they are very loud.

Go to another audiologist will treat you with sound therapy without demanding an MRI.

You can start doing sound therapy with pink noise on your own.  The website her sells a pink noise cd and has instructions.

0
EDogg

Registered:
Posts: 174
Reply with quote  #3 
Hi there Shizune,

I also have developed auditory issues (severe H, T and ear pain) following exposure from either toxins or super-allergen from a mold remediation on my prior home (three years ago). I am still trying to figure my case out. The course of events in my case sounds similar to yours. I have been thoroughly evaluated and have attempted TRT with an experienced audiologist multiple times. Sound desensitization, on its own, has not worked for me (limited by ear pain) and I likely need to solve some other piece of the puzzle in order to regain my tolerances.

I do think, in a general sense, that total sound avoidance with ears plugs muffs, etc. is not the right answer. It’s important to allow your auditory system to function as intended. As some have said here “the auditory system thrives on sound”. Depriving it by over using ear muffs and plugs will only cause your brain to turn up the gain. That said, when you have a complicated picture, sometimes you need to other treatment modalities to compliment sound desensitization. I would steer clear of Facebook groups and other forums that emphasize sound avoidance and rather focus on success stories. Figure out what has worked for others and might work for you. Complete sound avoidance will do nothing but feed into the vicious cycle of fear, anxiety and pain.

As mentioned above, be very careful about MRIs. They can be very loud. If one is necessary, make sure to wear properly inserted ear plugs (I used Mack’s 33 dB NR for my MRIs) and look for machines that are quieter. The best on the market are the Canon/Toshiba Vantage MRIs with Zen pianissimo technology. Mine peaked at 85 dB. Most conventional units peak anywhere from around 100-120 dB.

All the best,
EDogg
0
Shizune

Registered:
Posts: 3
Reply with quote  #4 

Hi everyone,

 

Thank you for taking the time to reply.

 

@Aplomando: Luckily I managed to find another audiologist (thanks to this site, no less) who said she can do a hearing test on me without a scan first.

 

@EDogg: I am sorry you've been suffering for 3 years now because of this. Although it's nice to find someone else who has these issues due to toxin exposure (opposed to acoustic injury) it still worries me and my heart goes out to you.

 

Have you been doing TRT for all these 3 years? I'm sad to hear it hasn't worked for you. Do you experience any other neurological issues due to the exposure?

 

Oddly enough yeah, I tried to do softened pink noise with my Bose plugs and I actually felt worse/more vulnerable afterwards. I'm trying to only protect when I truly need it. I'm trying to focus on the positive success stories but I still can't help but wonder what exactly *does* damage your ears beyond the initial exposure, and what does actually need to be avoided, if anything. I tried to go into restaurants twice this week and I thought I was going to die. I hear stories of folks eventually being able to go to concerts, I hear of others never being able to listen to music again. It's hard to imagine myself doing either at this point.

Not sure about MRIs just yet but yes the audiologist I am seeing this week also advised against them. But I'll keep the ear plugs in mind.

I want to know more about your story. Have you just been seeing the one audiologist? How many other doctors have you seen? Did your audiologist say that toxin exposure has a better healing time than acoustic injury? I can't seem to find anything online backing this up.

I recently had a very traumatic experience with a neurologist who not only didn't believe in my hyperacusis (going so far as to asking why I had earbuds with me if 'sound upsets you so much'), but refused to give me any sort of scan because of it, among other things. It seems quite commonplace for this issue to not be taken seriously or believed in.

Another thing I'm worried about, and I'm not sure if you've experienced the same, is potentially taking medication that is ototoxic or will exacerbate the issue. I've had a lot of docs so far write my issue off as anxiety and tried to push stuff on me. Of course, when I express concerns of ototoxicity, they accuse me more of anxiety. It's a never-ending battle and I feel like I'm about to give up, even though I'm only 1.5 months in. Have you been on any medication that you suspect may be making it worse?

Sorry for such long reply! I do appreciate anything any of you have to say. Please let me know when you can.

 

-Shizune

 

 

 

0
EDogg

Registered:
Posts: 174
Reply with quote  #5 
Hi Shizune,

I tried TRT for about 5 months, starting at very short periods and slowly working up. I kept hitting a wall of pain so I ended up stopping. I wasn’t getting where with it as my ears were irritated and not accepting of most sounds. There’s something else going on with my auditory system and I do plan to resume TRT, or something like it, once I have figured out what it is and how to treat it. I have no doubt that sound desensitization works.

I have not seen any evidence that chemical injury responds any different to sound therapy than acoustic injury. My audiologist seemed to think they respond similarly, if I recall correctly.

It is a shame that your neurologist was so dismissive. I’d recommend you find another one if you require a neurologic work up. Neurologists run into patients with hyperacusis not infrequently, as it is also seen in patients healing from traumatic brain injury, MS, post-brain surgery, etc. My neurologist has been very understanding about it, particularly when it came to finding a quiet MRI machine. I have other neurologic issues that warranted imaging.

Feel free to Search my earlier posts to find out more of my story. You can also direct message me anytime.

I understand your caution regarding ototoxic medications. This topic is quite the quagmire and very much depends on how one defines ototoxicity. If you are referring to medications that can cause permanent, lasting damage to the auditory system, then the list is quite small. If we include anything that can or could cause temporary spiking of tinnitus in some people, the list becomes ridiculously long. The ATA list of ototoxic meds includes everything under the sun just short of deionized water. I don’t believe that is the case. Here’s a link to Dr. Stephen Nagler’s website regarding ototoxic medications to avoid:

https://drnagler.supporttopics.com/post/drugs-to-avoid-7554899

All the best,
EDogg



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.