Tinnitus

[Yanks7]

I was diagnosed PV with positive Jak2 in November, 2022. Hydroxy and low dose aspirin has seemed to work for me. Good blood tests, only mild fatigue. But past few months, I developed a ringing in my ears and decided to have a hearing exam (at the urging of my PCP). It turns out that I have a condition called "moderate to severe binaural sensorineural hearing loss". I hear OK, I thought, but have been advised to purchase hearing aids if I want to stop the ringing. I'm OK with all of this, but I'm wondering if this condition could possibly be a side effect of HU or PV? Any opinions appreciated. Thank you.

[hunter5582]

Tinnitus can be a PV symptom but can occur for other reasons too. Some types of auditory conditions also cause tinnitus. We can have co-occurring issues that having nothing to do with the MPN or the medications used to treat them.

I also have mild hearing loss and tinnitus and a family history of hearing loss/tinnitus. Whether my tinnitus is due to the PV, the auditory issue, or both is unknown. My hearing loss is in the exact tone band of a typical woman's voice/turn signal clicker. My (female) audiologist thinks this is hilarious as it is a common type of hearing loss for older men. Sometimes when we say "I did not hear you" it is not selective hearing. The turn signal clicker thing drives my son nuts when he is riding with me. I can barely hear that thing.

Like you, I will be a candidate for hearing aids at some point. We will see if the tinnitus improves when I get them.

Wishing you success moving forward.

[Yanks7 in reply to hunter5582]

Thank you, Hunter, that's hilarious! On a more serious note, the audiologist advised there are studies that indicate higher rates of dementia for people with hearing loss and suggested the hearing aids will counter this trend. I wasn't sure if this was just a sales pitch for the hearing aids, but I'm going to do my own research. He also mentioned that my PCP is in the minority, that most family docs are not aware of the relationship between tinnitus and hearing loss and the growing evidence of the relationship between this condition and dementia. I was surprised to hear this ...............

[hunter5582 in reply to Yanks7]

It is correct that there is a correlation between hearing loss and dementia. Whether there is a causal relationship could be debated. It would be reasonable to think that the decreased auditory input could lead to alterations in brain function in the language centers. In addition, hearing loss can also lead to decreased socialization. Social interaction is known to be neuroprotective. I would be in agreement that hearing loss is a risk factor for dementia. Beyond that, hearing loss is worth remediating anyway. It is really quite annoying. I will definitely get hearing aids once it reaches the point I need them.

[EPguy]

I've had reason to learn about this recently.

Some level of tinnitus (T) is common with age esp if there is a history of loud noise. Loud music/parties in the young years is a common source. With habituation it might not be noticed until something aggravates it.

If it's from a specific source, the tinnitus can be of a similar frequency to what that was. I had minor T from a few hours using a loud belt sander years ago, it's right at that tone.

Various drugs and medical conditions can cause or increase T. Mine got worse in just one night from a Sjogren's drug (plaquenil), a known rare reaction to that drug, so it's out for me. Same belt sander frequency.

T is quite often related to hearing loss, in my case hearing is better than avg for my age except at the frequency of that belt sander and T, where it's still ok. I've always tried to stay in quiet places since young which may have helped. My husband long complained I'm too fussy on noise.

My mother is a likely example of the dementia connection. Her Dr discussed it. She got worse along with her hearing.

A hearing aid won't change the T but it an help: "These hearing aids play random soothing sounds to distract you from the ringing in your ears"

webmd.com/a-to-z-guides/wha...

A supplement, Lipo-Flavonoid, helps some pts. There is a new expensive device, Lenire that supposedly helps many. My ENT suggested both of these. I'm about to start psychiatric Magnetic Brain Stimulation treatments, 2 months of daily sessions that will include an added procedure to maybe address tinnitus.

On bad nights I use a rain sound thru my stereo, the right rain can match many common T frequencies.

None of the above will restore common hearing loss unfortunately, that's where the aid comes in.

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A little test I do when ears feel "off" is to click thumb and finger nails right at the ear, once you know what is "normal" any change is quite noticeable for the frequencies this makes. You can compare left/right ears too.

[Yanks7]

Thank you for this thoughtful and informative response. My challenge is to digest all the info and become clear about whether or not hearing aids will help prevent the onset of dementia (i know its not a guarantee). I dont need hearing aids to hear right now, and the T is present but acceptable. Thanks again.

[EPguy in reply to Yanks7]

One basic answer to the aids or not: Do you often miss what others are saying in a moderately noisy room? Do you need to have a certain ear favored to get there? I observed my mother go thru this process. This sets how isolated we become and is what they simulate in part of the hearing test.

[Yanks7]

Thanks for the reply. My diagnosed hearing loss was a surprise to me. I have no problems with hearing, that I am aware of, under any circumstances.