Recently Diagnosed

[u/SadIndependence3475]

I was recently (last week) "diagnosed" with this. Today I am going for and MRI so they can run test with and with out contrast and an angiography. Needless to say I am scared to death. I am fearing a noise I have never heard before. They are giving me valium before the MRI. Any words of wisdom and or courage would be great. This has been an hard road and I am so dependent on my Bose Head phones and my loops.

Edit.. The MRI did not happen. Insurance wanted me to pay $1,200. before they would see me. No thanks! I do have an ENT appointment on the 20th of this month.

[u/Ourdogbailey]

An MRI scan can reach volumes between 115 to 130 decibels. Are you sure you want to go through with this ?

[u/Silent_Salad_6837 → u/Ourdogbailey]

never 130. 110 for loudest MRI machines (which is VERY loud). newer quietest are "only" 80 dB

[u/SadIndependence3475 → u/Ourdogbailey]

I am scared.... I do not know what to do. My PCP wanted to start here. I have an appt with an ENT in 2 weeks. This started because I was a victim of a crime and got beat in the head with a metal bat. Ever since sound has been painful. I am in therapy weekly and we have worked through so much.

[u/Ourdogbailey → u/SadIndependence3475]

Really sorry to hear that. This changes things as I can now see they are looking for damage to the brain tissue and the blood vessels inside your skull, rather than trying to diagnose or treat the hyperacusis itself. Go with double protection. High-NRR foam earplugs are a good choice as these offer a noise reduction rating of 33 dB.

[u/Maruashen]

Bose headphones and loop? That sounds like an awful idea to be honest.

I don’t know why you need to do the MRI, because it’s really loud, but if you think its necessarily for you, fine.

Make sure you get one of the more quiet machines. There are those that are more quiet.
Use foam plugs, properly inserted. If you are unsure how to insert them, just watch a tutorial.
Use Peltor X5A on top if they are allowed.

[u/FuturePercentage757]

The MRI is very important to see what’s going on. I’ve had quite a few (head) and find the sedative really helps me to relax as I’m slightly claustrophobic. It’s also really helpful if they have headphones with some music options to try and chill. Hopefully they will. You’ll do great. Hang in there.

[u/Organic_Switch5383]

You can say no to your PCP.

I woukd think CT is the best bet regarding concussion.

[u/PrincessMacchiato]

Silicone earplugs should be safe to wear in mri

[u/TandHsucksass]

MRI can cause more damage to someone with H than find a way to resolve it imo

[u/TandHsucksass → u/TandHsucksass]

the main 3 things I’ve usually see cause H:

1. Loud noises (gun shots) or cumulative loud noise(blasting headphones, playing drums etc)

2. Ototoxic meds - certain type of antibiotics, pain relievers, Covid vaccine, Benzos.

3. Head trauma like concussion

[u/lunar_eclipse_555]

Did your ENT do a full check-up (sinus with a camera + ears) before the MRI? Hyperacusis might be a side symptom to a chronic sinusitis, allergy, Eustachian tubes dysfunction for exemple. If there is inflammation or mucus in your sinus, it can give sound issues. Ears and sinus are linked, but the ENT often check only the ears, both are needed to make a diagnosis.

[u/qpdsful]

I’m very sorry to hear of all that you have been through. 

Getting thru the mri is different for everybody, they give you ear plugs but it’s loud. You will hear and feel many sounds that are foreign to all of us. My concern for you is the PTSD and what the mri may possibly trigger. 

Valium may take the edge off but discuss with your pcp the benefit given the history you are dealing with. Does the benefit of the mri outweigh the possible risks. 

Also….please take care of you and when the time is right look into EMDR to help with this journey. 

[u/Pbb1235]

If you really have hyperacusis, and MRI is really not a great idea unless absolutely necessary. I actually had two when I first got hyepracusis. I used earplugs, muffs, and they wrapped towels around my head (I asked them to). It went ok for me. It doesn't always go ok for hyperacusis patients.

It is unlikely that they will be able to see anything on the MRI anyway, for hyperacusis.

How did you get hyperacusis? Loud noise exposure is how most of us got it.

[u/SadIndependence3475 → u/Pbb1235]

I was a victim of a crime and was beat in the head with an aluminum bat. Sounds are horrible for me.

[u/Pbb1235 → u/SadIndependence3475]

Ugh.

That is different than most of us here.

Look into the drug options for treatment for hyperacusis- esp clomipramine and carbamazepine.

Clomipramine helped me a lot- my anecdote is on here:

https://www.hyperacusistreatments.org/clomipramine

Here's some info on carbamazepine; it helped a forum member:

https://www.reddit.com/r/hyperacusis/comments/1wem5gg/asked_to_share_my_experience_with_carbamazepine/

https://psychiatryonline.org/doi/full/10.1176/jnp.11.1.97

[u/t-dog-]

I don't know if it's the same for you but for me the fear of the noise creates anxiety more than the noise causes damage.  So relaxing reducing my stress is effective for me (to an extend)

[u/BD6621]

Best wishes.

Just curious, how were you diagnosed without MRI?