My Partner Suffers

Hi everyone. I'm writing here because I need to get things of my chest. I don't feel comfortable speaking about this to the people in my life, because they don't understand.

My girlfriend suffers from tinntius and hyperacusis, and I don't think it's possible to be more inhibited than she is now. She got tinnitus for about 6 years ago, and it's very sad to see what her life has become. From being a social and active girl, to becoming an almost totally isolated and depressed person.

When she first got tinnitus she was stressed about it, but she kept living as usual. Met friends and familiy often, went to school, did things she enjoyed, had dreams and visions of the future. But for each year that has gone by, the tinnitus and hyperacusis has gotten worse and worse.

She now has level 3/3 tinnitus, 8 different sounds in her ears, and hyperacusis. She is constantly afraid of being exposed for loud sounds that will lead to new sounds in her ears. So she's very isolated. She also has developed Tonic Tensor Tympani Syndrome (TTTS), so any sudden loud sounds are very painful.

Now things are bad, she is totally isolated and can't (almost) stand any sounds. If she drives car she needs to relax for at least a week before she can do anything else again. She only tolerates a few of her friends and familiy that aren't to noisy. Most people speaks to loud and are to careless in general for her ears.

She can't attend any family get-togethers (only christmas), and hasn't been with friends for over a year.

Another aspect that is very bothersome is that people around us don't understand. When I say that she cant come to dinners with family and friends, people tends to get annoyed. No matter how much we try to explain, people don't get it. And it's often me, when I try to explain things to my family, people get annoyed at. It's just so much frustration.

The last 3 years we have moved 4 times, because there's always some noisy neighbours or industry nearby. We are now going to move once again, for the fifth time in 3 years. Needless to say, it's very exhausting.

I could keep on writing about the negative stuff in hers (/our) life, but I guess you see the picture.

I just don't want her to continue with having a life like this, she has gone to a psychologist for years, but no improvement, things are just getting worse. I don't see any bright future, were she can do things she enjoy and we can do stuff together like we did before tinnitus and hyperacusis came in to our lives. We haven't gone out to eat at a restaurant or to the movies for at least 3 years.

I often feel that my family thinks I should leave her, which make me very sad. I love her and I'm never going to leave her. We've been together since we were 14 years old, we're now in our mid-twenties. Things are good when it's just me and her, but at this point there's no life for her outside the four walls of our home.

I just hope a cure will come someday.

 

Do you know what caused her tinnitus in the first place??

 

Maybe have her look into round window reinforcement for her H, it's helped people tolerate more levels of sound so that may boost her life a little.

 

She sounds exactly like me

 

I'm still trying to get my boyfriend to understand tinnitus and hyperacusis. Mine is no where near as severe as what your girlfriend is dealing with but I understand where you are coming from with people not getting it.
I will be completely honest. When I first heard of tinnitus I was like "why is this even listed under my patient's diagnosis". I really didn't think it was a big deal. Then I had it myself. Constantly.
My boyfriend is starting to understand why I can't always hear him. He started watching the hockey game more quietly. He now understands why I really hate whistling and has stopped doing it.
One thing I can suggest doing at your next family party, if you really are this frustrated, play them a bunch of "tinnitus sounds". Just turn off the music and play these sounds until someone goes "that's so annoying turn it off". Then you can explain that is what your girlfriend hears, all day, every single day. Sometimes that's the only way people can understand.
I don't know how you can try to get her to socialize again. Does she have anyone besides you who truly understands or empathises? I'm sure all sorts of things have been suggested to you guys for activities and I honestly don't have much to add. I can only imagine what your girlfriend is going through.
@123e

 

Yes it would help to know that cause of her tinnitus.

 

I have no answers because I haven't found them for myself..I will be anxious to read the responses that others will offer. Your love and loyalty is beautiful.

 

It really is.

 

She should consider sound therapy by wearing white noise generators. Ive read several cases of people with extremely severe H who got much better after such treatment.

 

What a beautiful love story. Thank you. You're great, I can't imagine how important the support you give her is.

I'm in the exact same situation as her, except I'm a guy

Everything you describe is exactly what I'm going through with my girlfriend. The symptoms, the noiy places and the need to move, the dinners I can't attend, the people who don't get it and the useless doctors.

I don't know what to tell, except you two are not alone.

2016 was awful for us. It's getting better even if my symptoms are worsening week after week. Something is growing in me that I want to use to live again.

 

does she carry around any type of hearing protection? I carry custom fitted musician ear plugs with me everywhere i go. The impact of sounds is reduced significantly but you can still hear everything. I travel the noisey streets and subways of NYC everyday with no issues. I am still in the early stages so I am no expert but if she doesnt have a pair i strongly suggest she get them.

 

If you love your partner, which it sounds like you do, then you should stay with her. It's very difficult for other people to understand what it's like. Most of them just see us as "overreacting depressed weirdos". You have a kind heart to have opened yourself up to really understanding her condition.

 

Your girlfriend may have the bad luck with her ears, but she has a big blessing in you. In here on TT people talk about broken marriages and relationships as a result of their condition. It's sad how a lot ot sufferers have to carry on alone.

Let us know what caused her T and H. Maybe the underlying cause can be treated. She may not be fully cured but her symptoms may improve.

Also, what treatments has she tried?

 

123 there is a synergistic loop between depression, anxiety, tinnitus and hyperacusis which creates isolation and phobia to noise. If your beloved can't pull out of this nose dive which sounds like she can't, my strong recommendation is medication to alter her brain chemistry to alleviate her depression and anxiety which intensifies her sound sensitivity. Debilitating phobias are paralyzing.

So until she has had professional counseling by a MD/PhD that can prescribe medication, she isn't even close to being all she can be. People react to tinnitus and hyperacusis differently based upon their brain chemistry which is a bell curve among the human population. There is much speculation that those that even contract tinnitus and hyperacusis are a couple of std. deviations toward the anxious and depressed side of the spectrum. Normalize her brain chemistry and her quality of life will improve dramatically.

Good luck