I have what I would consider a catastrophic case of pain hyperacusis. At this point, I am literally unable to go without hearing protection of some form at all times, even in an environment that most would classify as silent. Pretty much all sounds have the potential to cause me some level of pain.

I’m homebound and almost exclusively remain secluded in a single bedroom all day long. When I’m in my room, I can usually get away with wearing a single layer of hearing protection, whether it be high noise reduction rating foam earplugs or earmuffs. There are exceptions where I have to double up, like when people mow their grass, my father has visitors, or the television is loud in the evenings. When I leave my room, I regularly have to wear double hearing protection, unless I am going outside when it is extremely quiet to take a walk around my father’s property. While I’ve had this condition for four years, I’ve only been experiencing this level of pain hyperacusis for a year-and-a-half now. Unfortunately, there is no end in sight.

Over time, my ears and face have increasingly become aggravated by the constant presence of hearing protection. Earplugs chafe the skin of my ear canals. I regularly apply moisturizing cream to my canals to try to combat the chafing, but my efforts only help so much. This leaves my ears feeling raw inside. Foam earplugs expand in your ears so they also apply a constant level of pressure to your canals. This irritates the nerves, increasing their sensitivity and giving them a neuralgia that causes a burning/stinging sensation at times. In addition, it leaves the canals feeling tender. When I am in my room, I try to rotate between plugs and muffs every so often during the day to give my canals some rest from the irritation of earplugs. Unfortunately, the rawness, neuralgia and tenderness are exacerbated throughout the night because I have to sleep with plugs in.

Muffs clamp to your head and apply pressure to all areas surrounding your ears. This pressure presents yet another opportunity for issues to crop up. I get a neuralgia that is akin to shooting electrical sensations in my cheeks and the occipital area of my scalp. I have tenderness all throughout the sides of my head, into the SCM muscles in my neck and the joint area of my jaw. The pressure on the jaw in particular irritates my TMD issues, causing more chewing discomfort in general and at times more popping at the joints. The muffs rubbing also can leave areas of my scalp feeling somewhat raw. In order to try and help manage the problems presented by muffs, I have replaced the stock pads with gel pads. They are more comfortable and not as hard on my head, neck, and jaw.

Another issue I have to deal with due to my need for constant hearing protection is related to tinnitus. This condition — which is often comorbid with hyperacusis — has coping mechanisms that collide with the grave necessity of pain prevention from noise. Namely, using environmental sound or sound therapy to blend with your tinnitus and distract from focusing on it. Thus, I am left to listen to basically nothing but my tinnitus 24/7. Thankfully, at this point my tinnitus is fairly manageable in volume. Though it is still often mentally draining listening to about six tones of various frequencies, all making otherworldly noises simultaneously, nonstop.

Communication is a huge issue when wearing constant hearing protection. My pain hyperacusis is so severe that I avoid all talking that isn’t absolutely necessary anyway, to keep out of pain and avoid risk of worsening my condition. Unfortunately, I have to go to medical appointments and make the occasional phone call. I actually have excellent hearing, but when you are wearing double hearing protection your hearing ability is greatly reduced. Hence, I struggle to understand what people are saying to me and have to focus intently on every word spoken. I can often miss certain words in a conversation, and with pain hyperacusis at this level asking someone to repeat themselves is basically inviting more pain, so in many cases I’ll just try to get the gist of what is being said. I also find myself mentally fatigued after an appointment because of how hard I have to focus and that’s not taking into account how exhausting the condition itself is.

Wearing hearing protection 24/7 is very unwieldy and suffocating. An analogy that I feel fits is that it’s like wearing a cast indefinitely. When people are wearing casts, their mobility is limited and they often find themselves banging it on things, which risks causing pain. I can’t tell you how many times I’ve banged my earmuffs bending over to reach into the refrigerator or against a doorframe, and with this condition it hurts! When people wear casts, having this awkward augmentation on their body at all hours of the day presents big difficulties. They’re eager to remove it, as it affects all aspects of their functionality. Luckily, casts come off fairly quick in most cases. But I’ve been stuck in constant hearing protection for well over a year now. At times it can be anxiety-inducing, especially when I start to think about the possibility that it may never end. Imagine decades of constantly having earplugs shoved in your ears or earmuffs gripping your head like a vise.

I’m unable to work in my present condition and at this time I am not an SSDI recipient. With this being the case, the costs associated with hearing protection maintenance present a problem for me. Foam plugs have to be replaced at regular intervals. Though I buy in bulk at around $26 USD for 300 pairs, it’s still an expense I struggle to meet. I recently had a pair of my earmuffs break on me, with the headband cracking in the middle. These muffs cost over $40 USD per pair. The pair in question only lasted a little over a year. The gel pads I use on my muffs are extremely expensive. At $60 USD a pair they actually cost more than the muffs themselves. They tend to last about 6 months or so before the the gel cushion begins to flatten out and they lose their comfort. I’ve tried cheaper gel pads from different manufacturers, but to my dismay I found them to be of poor quality. In fact, they were less comfortable than the stock pads the muffs come with.

Many people I have spoken to echo similar sentiments to mine when it comes to the issues that constant hearing protection presents. Beyond that, others also report various additional problems. Some people experience headaches from the pressure of muffs. Some report that their pain from noise is exacerbated by the deep-seated neuralgias caused by both types of hearing protection. Some say that their tinnitus actually increases in volume while wearing it, not just their perception of the tinnitus due to closing out the surrounding environment. As you can see, being forced to wear constant hearing protection to prevent or reduce pain, and to also deter the risk of worsening our condition, affects us sufferers to a great degree physically, mentally, emotionally, situationally, and financially.