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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hearing Loss

A myPHteam Member asked a question 💭
Sterling, CO

Hi all, I am going to see an ENT tomorrow because I recently experienced severe hearing loss in my right ear. I am thinking it is a result of severe, acute congestion- a side effect of one of my PAH medications. I have been on the medication for several years, and I have certainly experienced congestion with it, but never anything like this. My PAH team says hearing loss is not a known side effect of the medication. It feels like a deep-rooted clog in my Eustachian tube. I sure hope it gets… read more

January 7, 2025
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Answer Summary

Members shared their experiences with hearing loss while living with PAH, with one member describing sudden severe hearing loss that turned... Read more

Members shared their experiences with hearing loss while living with PAH, with one member describing sudden severe hearing loss that turned out to be idiopathic or virus-related nerve damage, treated with steroid injections that partially restored hearing. Several members discussed how inflammation from conditions like RA can affect hearing, while others connected hearing issues to medication side effects, caffeine intake, and fluid retention, with one member's PAH specialist theorizing that widespread edema including in the ear canals was the likely cause. A recurring theme was the delicate balance PAH patients face in managing symptoms like edema through medications like Lasix while protecting kidney function, alongside practical strategies like monitoring sodium intake, using saline nasal sprays for congestion, and finding small daily pleasures like coffee that make living with chronic illness more manageable.

A myPHteam Member

Well, it wasn’t good news. I have total hearing loss in my right ear. It is likely just idiopathic or nerve damage caused by an unknown virus. The good news is that it is not related to PAH or any of my medications. I received a high intensity steroid injection into my ear drum (OUCH!), and I return for a second injection in 2 weeks. About 1/3 of patients who get this steroid injection have their hearing restored or partially restored. Not great odds, but worth a try. This is a downer, for sure. But at least I have good hearing in my left ear. With the stuff that everyone here deals with, I am just reminded that we must count our blessings every day and be eternally grateful for the good stuff in our lives. Truly, life is good!
Thanks for checking in on me!

January 9, 2025
A myPHteam Member

My doc gave me permission to enjoy minimal caffeine…a cup of coffee and/or a glass of iced tea. My resting heart rate is usually in the 70’s. And when I exercise, it doesn’t get alarmingly high, so he doesn’t believe caffeine is a negative contributor to my PAH symptoms. I am ready one day to give it up entirely, but for now it is a simple pleasure that I look forward to every day. Also, as a college administrator, I need something to energize me to be able to keep up with those fast-paced college kids!

February 8, 2025
A myPHteam Member

Yes...all things considered, this is stuff you can deal with. I have significant hearing impairment just due to genetics and aging...I wear hearing aids that I purchased at CostCo.

January 9, 2025
A myPHteam Member

Hopefully your hearing will be restored.

January 9, 2025
A myPHteam Member

So what happened with the ENT visit?

January 9, 2025

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