New the site with bilateral hearing loss-autoimmune

Hi All: I’m new the site with moderate slopping to severe bilateral hearing loss. 29 yrs old. I’ve suffered from bad hearing since my college yrs that has progressively gotten worse. I was diagnosed with Sjogrens Syndrome, an autoimmune disease, at 25. Over the last few months my hearing has decliined rapidly and despite having hearing loss a large portion of my life sans hearing aids I was able to function very well. Unfortunately, this is no longer the case as I am struggling on a day to day basis. I get headaches from straining to hear my co-workers, boss, friends, and dating partner. I also really dont bother to watch tv, music, ie because it is frustrating. I used to be able to somewhat hide my hearing loss from those who just meet me or had limited interation but now it is readily apparent. Most of all I am scared how much/little hearing aids will help. I can hear sounds but find the words very difficult to make out- not clear. I have been recommended the behind ear unit with the clear tubes into the ear. I go for a consultation on June 10th. Just wanted some feedback or moreover positive encouragement that hearing aids will not be 100% solution but at least provide some noticeable improvement.

Here are my results (pretty bad unfortunately)
250 500 1000 2000 4000 8000
R 50 40 25 40 60 80
L 50 45 45 50 60 80

My first day (a couple of years ago) getting a hearing aid (just got one at first, a mistake) was a very good day. I went out of the office onto the street and could not believe the sound. All the things I remembered hearing were back. They can make an amazing difference. I have a lot of confidence now going into the hardest, high noise, situations.

But, it’s not all good. It does take some time to get used to them. It also takes several adjustment sessions to get the hearing aids tuned just right, but it is very much worth the effort. After one adjustment session I noticed that ‘s’ and ‘ch’ sounds were overpowering the rest of the words. The word ‘church’ sounded more like ‘chshshschshsh’. I went back and it took the audiologist all of 5 minutes to fix it.

I can’t wait to put them in, in the morning. But go back and get any issue corrected by the audiologist!

Does Sjogrens Syndrome cause hearing loss?

You mentioned getting headaches from straining to hear colleagues. I have had HA’s for about 6 years - (note I said HAD, not worn). I did not wear them because I was very frustrated with the fit- they are RIC and just will not stay in my ears. Well recently, my boss asked me to start wearing them at work. I was a bit embarrassed and put off by the request, but started wearing them again. One thing I HAVE noticed is that it very definitely is exhausting to have to constantly concentrate and strain to hear what a person is saying in a conversation. For that reason alone, it was worth wearing them again, even though I am back to having to readjust them into my ear canals every few minutes. I am in the process of looking for new HA’s as we speak as I now find I actually LIKE hearing better! Go figure.
Anyway, I would advise you to see a good audiologist that sells a variety of top brand HA’s and go for it. In the end you will be glad you did.
Freq L R
0250 25 20
0500 25 30
1000 55 30
1500 40 50
2000 40 30
3000 60 45
4000 70 60
6000 60 65

Hi Kimby
I don’t have hearing aids (yet), so can’t impart anything of my own experience, other than I feel your pain re: straining to hear people (if they talk too softly - forget it!) :mad:. I understand your concern about whether they will work or not, but at least you are actively perusing a means of tackling your hearing problem - that in itself is positive! Worst case scenario is that a particular type of aid does not work effectively. It seems that most people being fitted for aids have a trial period. So if one type doesn’t seem to do the job keep working with the audiologist til you find one that does help. Good luck for June 10! :slight_smile:

I’m round the same age and like some of the other posters here spent all my vain teenage years and up to mid twenties not wearing the BTEaids i’d had since I was 7. Was totally over the audiograms etc. lost the aids constantly and just figured they were too much hassle. was not confident and struggled social situations for many years. But this was before digital. when i first got digital ones I still didn’t wear them until one day a really nice audiologist told me that if i didn’t start wearing them properly (i.e all day every day) before I was 30 my brain would lose the capacity to make the most of them as brains get older and less plastic and adjustible as we age.
Anyhow it was a nightmare when i first started wearing them ‘properly’ even though I had owned a pair since I was a child. Everything sounded much worse rather than better! The extra noises I heard were overwhelming and my brain could not make sense of all the additional information it was now receiving.
But slowly slowly…gradually building up use from a few hours to all day… my ears and brain started working well together and I heard so much more… I doubt I would be able to work now without them.
The worst period was the first two weeks with 2 new aids when i struggled to hear even my family (who I normally hear fine without aids)… I wanted to hide away in a cave! but I plugged on and it was so worth it.

Lots of people give up in the early stages but you need to go easy on yourself, persevere, see it as a project and if they have been recommended to you then I don’t doubt that you will have some improvement- not 100% but just being able to relax and not say ‘pardon’ all the time is amazing! and once you’re u sed to them listening to your entire music collection afresh is also ace!

Good luck!