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Hearing aids

Psoriatic Arthritis Hearing Loss and Hearing Aids

If you’ve read my diagnosis story, then you might know that it largely revolves around hearing loss as one of my first “real” symptoms. I experienced sudden hearing loss, with little to no explanations from several visits to my first ENT doctor.

Even after my second opinion ENT, diagnosis of autoimmune inner ear disease, and subsequent pricey purchase of hearing aids, no one made the connection between my hearing loss and psoriatic arthritis.

Connecting hearing loss with psoriatic arthritis

I managed to receive a sort of backward diagnosis of psoriatic arthritis (PsA). Hearing loss was pretty much one of my first recognizable symptoms, only later to realize that it was caused by PsA. I suppose that is the beauty of hindsight (or hind-hearing would perhaps be more accurate).

Since then, I’ve worked very hard to spread awareness about the links between hearing loss and psoriatic arthritis. I spent too much time just floating in the sea of uncertainty while my body and joints suffered additional damage, prior to my diagnosis and treatment.

The consistency of hearing loss

However, even with proper diagnosis and treatment, living with PsA induced hearing loss and hearing aids is no walk in the park. If like me, you have hearing aids, then you know that one of the number one rules of life with hearing aids is that you must wear them consistently.

But the problem with this, in my experience, is that my hearing loss isn’t consistent! Which let’s be honest, is super annoying. The level of my hearing loss is very dependent on three things:

  • The amount of inflammation in my body
  • If my medication is actually working
  • The amount of permanent damage my ears have sustained

In practical terms, something an audiologist would understand, some days my hearing is practically non-existent (someone could be mowing the lawn and I could barely hear it) and other days, “good days”, I can actually hear the dishwasher running. Which usually results in me questioning my family, “What is that strange noise?”

The chore of hearing aids

So let’s think about how this applies to life with hearing aids. How am I supposed to consistently wear them, when my level of hearing loss is so inconsistent? Hearing aids are “programmed” correctly by experienced audiologists. Which works really well for typical hearing loss patients, not so well for those of us with fluctuating hearing loss from PsA.

If my aids are programmed for my “bad” days, then wearing them on the “good” days is next to impossible. Which as you can see, really hinders my ability to consistently wear my hearing aids.

Over the years, I’ve tried several things to manage this. Before noticing the pattern in my fluctuating hearing loss, I started going to my audiologist very frequently for adjustments. I spent a ridiculous amount of time (not to mention money) there.

If managing psoriatic arthritis wasn’t trouble enough

The more adjustments I needed, the more I thought I was truthfully losing my mind. The adjustments would be good for a few days, if I was lucky, maybe a few weeks. But then I would be improving on medicine that actually “worked” my hearing would improve, then I would stop wearing them because they would be too loud. And it just became a vicious cycle.

The constant time and money of running back and forth to the audiologist took its toll. I couldn’t juggle those appointments with all my other appointments as well as life with 3 young children. Eventually, I hit on a pair of hearing aids that can be programmed at home on your own computer, which was very helpful for a time. But with the amount of fluctuating I experience, even that became ridiculously tedious.

Does hearing loss affect everyone living with psoriatic arthritis?

I’d imagine (and maybe secretly hope a little) that I’m not alone. Of the hundreds of people that I’ve personally run across that experience PsA related hearing loss, I can’t be the only one that experiences the continuous fluctuations even sometimes on a daily basis. It is not only frustrating but unnerving and overwhelming.

I’m not the only one who suffers because of my hearing loss and hearing aids, without a doubt. My poor family doesn’t know whether to shout at me or talk relatively normally. It is understandably frustrating for them feeling like they aren’t being heard or having to repeat themselves over and over again. It really puts additional stress on our relationships.

Hearing loss is a part of psoriatic arthritis

The connection between hearing loss and psoriatic arthritis is one that certainly can’t continue to be ignored by the doctors and audiologists who serve our community. The stories that I’ve heard about doctors dismissing patient hearing loss as unrelated is absolutely absurd!

Every single part of the human body is subject to possible inflammation, why not the ear canal? After all, part of the ear is comprised of the smallest joint in the human body.

Have you experienced hearing loss? Does it fluctuate? Do you manage to get hearing aids to work acceptably well for you? Has your doctor done anything to help? I would love to know!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Sonoftadpole
    2 weeks ago

    I’ve yet to have an official confirmation of Hearing Loss due to PsA but I’m 99.9% sure that I will be. It’s evident that my hearing is goring and recent tests show profound loss in my left ear and major loss in my Right…for years now I’ve been complaining to my Derm and Rheumy that I noticed my hearing would go awry during major flares of my skin , connective tissues and joints…then I started noticing how my hearing would fluctuate bad flare or not …we’ll soon have it confirmed …I just hope having a confirmation will open a door to a possible treatment to prevent additional damage. otherwise I’ll be signing up for the nearest sign language course to prepare for future issues…Great article ….I will be sharing this with doc’s,

  • Sonoftadpole
    2 weeks ago

    I’ve yet to have an official confirmation of Hearing Loss due to PsA but I’m 99.9% sure that I will be. It’s evident that my hearing is goring and recent tests show profound loss in my left ear and I get the worse my

  • jw-ewing
    2 weeks ago

    I have the same thing. The tinnitus goes up and down and can get better in one ear then swap. I’ve started seeing some positive signs from my treatments, so that is a positive I’m hanging onto. I did have a seizure and mini stroke a couple months ago, so trying to find out why and how that happened. I have not been able to get rid of a headache since the seizure/mini stroke. Vision issues have just started cropping up also. Thank you to everyone that posts, you give me hope and remind me we are not alone.

  • Eric4406
    3 weeks ago

    Thank you for this article. I’ve been having hearing loss and tinnitus for about 6 months. It drives me nuts! It’s a constant loud ring.

  • Kcole11
    2 months ago

    I have hearing loss due to PSA. I helped my doctors diagnose. I started with severe vertigo decreased hearing. I rapidly so changes and was being worked up for brain tumor or acoustic neuroma. I had a very good ENT resident that listened and conferred with my Rheumatologist.

  • camarsha
    2 months ago

    Hi, thank you for this article. I am newly diagnosed although symptomatic for many years. For my first medication I am taking Otezla. The nausea is awful. Would you mind telling me what works for you as I am terrified to lose any more hearing and that’s my primary reason for seeking treatment now that I know it’s connected.
    Thank you

  • bbthodges
    2 months ago

    Leanne, you write the best articles and I relate so much to things you write about. This article about hearing loss really hit home with me. I have been wearing the same pair of hearing aids that I got from Beltone about 10 years ago because I just cannot afford to buy another pair even if I go to another place. I was diagnosed with PsA after I got the hearing aids so I have no idea if there is a connection with me. Over the years my hearing has continued to get worse. I even have a lot of trouble hearing when I wear my hearing aids. I would love to go to an audiologist and have my hearing loss caused by PsA and that some company would consider an approved medical condition and I could get some new hearing aids. I have investigated so many agencies to see if there is anyone that will pay for or even discount a pair of hearing aids. I am so sorry about your condition. It must be so terrible to have to deal with the changing. I will pray for you and wish that you will be better. I hope you and your family will have a very Merry Christmas and hope the New Year will be better.
    Brenda Hodges

  • Noel.martin
    2 months ago

    Hi bbthodges! Thank you so much for commenting and letting us know you like the articles. It lets us know we are doing something right! Hopefully one day PsA will be an approved condition and everyone can get the help they need. We appreciate you and your positivity! Best, Noel Psoriatic-arthritis.com team

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