Question for People with Severe Hearing Loss and Tinnitus

[Dominic1955]

I am interested in anyone out there with severe hearing loss and intrusive tinnitus, can I hear your story?
I notice that there are lots of T sufferers with no or minimal hearing loss I was wondering where are the people with severe to moderate hearing loss and T?
I have SSHL unilateral since 4/2016 and I just wonder what is the probability of habituation.
Dominic
Sorry having a very bad day today ( most days are just bad)

 

[Reinier]

@Dominic1955
I have moderate to severe hearing loss in my right ear.
Obviously everything is connected with the hearing loss. Tinnitus, hyperacusis and distortion.
I hate talking because of the distortion and thus am much more quit than I used to be. It is just increasing my anxiety.
My anxiety goes up almost instantly when my tinnitus goes up. And visa versa.
I just can't seem to habituate. It is more than one year now. (6/2015)

Not very positive, sorry.
I hope people with more positive stories will post too. I am sure they will.

 

[Dominic1955]

@Reinier you still have anxiety ? It killed me first 6 weeks(I contemplated suicide) but now it's gone. I don't have anxiety I am just annoyed at the T and H
I looking for anyone with a positive outcome
Sorry about your anxiety

 

[Reinier]

@Dominic1955
Fortunately, yes. There is still anxiety.
The first few months were pretty bad too. Every day was a fight and I was always happy to go to bed and reluctant to get up in the morning.
I believe personal circumstances made me more prone to anxiety. I was a Hi-Fi "freak". Audio was a real passion.
But, please don't let this get you down! There will be positive posts!

 

[Dominic1955]

@Reinier are u able to work?
And do you feel any better?
Sorry, I know people who habituate in 2 years
Hang in !

 

[Paromita]

I am interested in anyone out there with severe hearing loss and intrusive tinnitus, can I hear your story?
I notice that there are lots of T sufferers with no or minimal hearing loss I was wondering where are the people with severe to moderate hearing loss and T?
I have SSHL unilateral since 4/2016 and I just wonder what is the probability of habituation.
Dominic
Sorry having a very bad day today ( most days are just bad)

Sorry to know you are not feeling well today, are you getting a spike ? It should go down....
I am also having a spike today....I slept on my left cheek accidentally and got one...will need to take a Valium today I think...lets see...I am either having nueralagia or a joint problem but not able to diagnose...

 

[Dominic1955]

My T is so loud it's giving me a headache !
But I am still at work! Not giving up

 

[attheedgeofscience]

I notice that there are lots of T sufferers with no or minimal hearing loss I was wondering where are the people with severe to moderate hearing loss and T?

This forum does have a number of members with varying degrees of hearing loss. Some of these have significant age-related hearing loss, others have noise-induced hearing loss, and, a minority (probably) have sudden, severe, and non-recoverable hearing loss (whether idiopathic or not).

One specific member who matches your own case is @caffclifton. With hardly any exceptions I can think of, she is probably the most valuable member this forum has ever had. She suffered severe unilateral hearing loss in her early twenties (I have seen her audiograms). She went to her GP in the very early stages while a steroid intervention might still have been helpful. The GP failed to recognize the severity of the situation - which - is actually quite basic and straightforward (when sudden hearing loss has occurred): all you have to do is ask the patient to hold up a hand against the "good hearing ear" and ask the person if their hearing is muffled. No fancy equipment required. But that was too much to ask of a medical professional. Apparently.

Despite the sub-standard care she received, she has managed to regain her footing and truly enjoys her life to the fullest. Unlike the majority of the testimonials in the "Success Stories"-section, her story is genuine: anyone who has seen her Facebook newsfeed will agree. I honestly don't know how she does it - but at least she is proof it can be done.

Auris Medical - along with their AM-101 clinical trial - also have an on-going clinical trial for very acute stage sudden hearing loss called AM-111. The phase-II trial evaluation paper is attached. Given the very early stage intervention required to prevent cell death in the cochlea (which is the MoA of the compound), this trial is carried out at emergency wards only (i.e. you cannot "enroll" with the trial).

In the post-acute stage where recovery of hearing loss did not occur, or, only occurred to a limited degree, I believe in some cases that stem cell therapy may be of value.

 

[Lorac]

Hi @Dominic1955 ,
Sorry you are having a bad day. You and I are in the same boat with unilateral loss and T. It's a double whammy and it sucks. Sudden sensorineural hearing loss is a serious physical injury and it takes time to recover.
I don't get through any days without remembering that I have hearing loss and constant noise so maybe I have not habituated. I don't feel that most days are bad days now though so I guess I have habituated somewhat. I still have a few bad days but most are okay or even good, in spite of the noise and discomfort. It probably took me a year or more to arrive at that.
May I ask what branch of medicine you work in? I'm guessing you might have some patients who have had to learn to live with the aftermath of injuries. I think that part of our ability to endure has to do with the brain chemistry we were born with (but I'm not a doctor). You are not anxious anymore and that is great process! You are doing really well for being only three months in. Hang in there!

 

[Dominic1955]

I practice internal medicine, I have several patient like @caffclifton who recovered from SSHL they do not have recovery of hearing but they don't mind the T , unfortunately have some that are still struggling. @Lorac did you have vertigo too?
Dom

 

[Lorac]

I did have extremely bad vertigo at first. I could not even lift my head without vomiting. I received a shot to control the nausea during the first week. Then I had the Epley Maneuver performed on me by an audiologist after one month. That really seemed to help.
I really don't have much of a problem with vertigo now. I am so happy to have recovered my balance and coordination!
Did you also have vertigo?

 

[Dominic1955]

I got vertigo 1 month after my SSHL lasted 3 hrs, then I just felt unbalanced, I still feel slightly unsteady. Do you still have the blocked feeling in your ear?
Did you try TRT?

 

[Lorac]

I still have a blocked feeling but not as full and not as painful as it was in the beginning. Based on that, I really do hold out hope that the ear will feel normal again some day. If that were to happen, I think I could actually habituate.
I have this weird thing going on where I hear and feel a hissing noise in my deaf ear every time I hear sound in my good ear. I checked into the possibility of TRT but the masking sounds caused that hissing reaction too, so I decided against proceeding with TRT.
The Epley Maneuver cured the unsteady, unbalanced feeling for me. That was performed by the audiologist at my ENT office. You may want to give that a try.

 

[Dominic1955]

Thank u

 

[April]

Hi,
My hearing loss and tinnitus came on pretty suddenly after a whiplash incident. I'm not sure that was the cause, but my life was normal up to that point. Not a day goes by that I don't arrange my day around the tinnitus. The tinnitus can be so bad at times that it makes my right eye water and my face tingle. Fearing I was becoming a complete recluse as my home was an environment I could control, I made the effort to socialize more and I'm glad I did. I can forget about the noise a bit when engaged in an activity and despite having to wear hearing aids I still cannot understand words very well unless the person is close and facing me. So now I simply say I read lips and to please face me when speaking. I was really embarrassed at first but there are so many rewards in being with people that I got over it rather quickly. My tinnitus never goes away and I describe it as a 24/7 freight train sound. I will never give up hope that there may be a cure and neither should you. I'm not waiting around for that but have found ways to improve my coping abilities. I have to say that I am so glad that this forum is here and there are so many wonderful people that are willing to share their stories and keep updated information on any advancements posted.

 

[Dominic1955]

@April how long have you had this?
Dom

 

[April]

Since August, 2008. It was mild at first and I could still listen to music and the noise of my car was very soothing. I did know that the condition was slowly getting worse and tried to get my ENT find out why it was changing but he wasn't able to find the cause. By mid 2009 I could no longer listen to music as it was just raspy noise and my car noise was now an irritant. So bottom line it has been a journey in finding what I can do and participate in and what I should stay away from which would only cause problems.

 

[Dominic1955]

Do you have bilateral hearing loss? And is it sensisoneural ?

 

[April]

Yes, I have bilateral hearing loss and it is sensorineural but the tinnitus that is so distracting is on the right side. I'm hoping that since your tinnitus and hearing loss are relatively recent, in time you will be able to manage the 'new normal' better. I was a basket case learning to deal with it and it is a life changer but you will get better at coping . . .that is my voice of experience speaking.

 

[Dominic1955]

Yes thank you , I am sorry about your bilateral hearing loss and T, when I first experienced it I was suicidal the anxiety was overwhelming. Anxiety is gone now but the noise is so intrusive it stops me from enjoying life

 

[April]

Yes, I totally agree that the tinnitus noise can totally stop you from enjoying certain activities that you did before you had it. Unless a person is experiencing constant intrusive noise they cannot possibly know what you're going through. It's a life changer but luckily this site is full of people who understand what we are going through.

There is a movie called 'Music Within' and is about how the American with Disabilities Act came into being. It's a true story about a man with tinnitus and hearing loss who got the ball rolling. Rather inspiring and a bit quirky. Here's the Wikipedia write-up:

https://en.wikipedia.org/wiki/Music_Within

Try to keep focused on your good days . . .

 

[Dominic1955]

Thanks

 

[Reinier]

are u able to work?

I am able to work. Unfortunately I can not yet pick-up every task. I still use ear protection in my right ear when I am around other people.
I also read that sometimes it can take 2 to even 3 years to habituate. I don't want to think too much about that. I want to change my mindset and assume I will habituate eventually.
I do hope your "spike" settles down soon.

 

[April]

Talking on the phone can be a challenge at times. It's not that I need the volume louder rather the voices sound muffled and its hard to distinguish words. Also, I don't think people without this condition realize how exhausting it can be to be around people for long periods of time. I'm good for about 3 or 4 hours but then I need to be home where I can be in total silence to let my tinnitus 'cool down' as I like to say. It never goes away but is exacerbated when I'm around noise of any type so my home is my refuge.

You'll get better with managing your tinnitus around people and in my humble opinion you're still in shock and getting used to your condition. It takes awhile.

 

[zeb]

I have pretty bad tinnutus in my left ear as well as majority hearing loss in same ear. Caused mostly by ketamine abuse but also very likely loud music. i noticed the tinnitus first before the hearing loss. was given some medication that did nothing and some device that played a sound supposedly to equalise the sounds in my ears, didnt do fuck all and i gave it up pretty quick. Wasnt given any treatement for my hearing loss, the doctors just checked my ears and said they werent blocked. Also my hearing loss got much worse about 6-7 years after the onset of my tinnitus. I was kicked in the head , pretty much as if my head was a football , after that i cld hear some really weird frequencies for few hours , since then almost total loss in left ear. tinnitus started when i was 24-25 i think, am now 40.

 

[Alex Senkowski]

I have moderate to moderately-severe HL because of otosclerosis, then to twist the digger further I was saddled with T on top of it. It sucks. Thankfully, my HL has stabilized and the T is reactive and doesn't bother me most of the time.

 

[GregCA]

I have moderate to moderately-severe HL because of otosclerosis, then to twist the digger further I was saddled with T on top of it. It sucks. Thankfully, my HL has stabilized and the T is reactive and doesn't bother me most of the time.

Have you considered surgery?

 

[Alex Senkowski]

Have you considered surgery?

I had surgery done on one ear; it was initially successful but wore off after a few months and left my hearing only slightly better than it was before the surgery but with the T now on top of it.

 

[Jkph75]

I was born deaf in one ear. I have had tinnitus in my"good ear" for 5 months now. They think that I had labyrintitis though they have absolutely no clue. My hearing ranges from 5-25db it keeps changing in each frequency, but usually around 10-20db so technically normal. Despite that my tinnitus is extremely loud. My neurologist said that is because I am only getting input from one ear. It's not fun.

 

[GregCA]

I had surgery done on one ear; it was initially successful but wore off after a few months and left my hearing only slightly better than it was before the surgery but with the T now on top of it.

Did you not have T before surgery?
What regressed in your hearing? is it the conductive or the sensorineural part (or both)?

My conductive losses got better, but the sensorineural part got worse, presumably due to otosclerosis making more damage.

I'm taking heavy doses of Fluoride. Are you also on meds to try to arrest it?