An invisible illness. Severe chronic pain caused by sound that affects the ears and the head

 AN INVISIBLE ILLNESS. SEVERE CHRONIC PAIN CAUSED BY SOUND THAT AFFECTS THE EARS AND THE HEAD

Ever wonder what people go through when dealing with an invisible chronic illness?, well that's what I am here to tell you all about. The conditions Hyperacusis / Noxacusis & Tinnitus, all three in which I suffer from are not to be taken lightly, they are all very painful. Imagine walking down the street and hearing the squealing from the train brakes from the train going by, or imagine a walkie talkie used by someone in a department store. These types of sounds can cause relentless pain for myself and many others who suffer from these conditions. The sounds of people talking to you, the shopping carts rolling by in the stores, the PA systems, the sounds of typing on the computer. These are sounds that normal hearing people do not recognize, but for someone who has Hyperacusis / Noxacusis and Tinnitus these sounds can cause extreme pain, and especially exposed to them for long periods of time. 

People will tell you to go out and work, get a job, go socialize with the world, do not make any excuses. Deaf people are out working, and are active in the community. The thing is with deaf people, they don't hear anything, and people with all three of these conditions (Hyperacusis, Noxacusis & Tinnitus) hear everything, and the sounds cause pain. It's an invisible chronic illness, and some people don't believe you when you tell them that sounds hurt your ears, in an extreme way. They will say "Toughen up", "Push through the pain". The thing is when the ears are exposed to sounds for short or long periods of time, the conditions get worse, and in a lot of cases can cause permanent nerve damage. Having a setback can take days, weeks or even months to recover from. "Take off the ear protection, your ears need to adjust to sounds again", some people will say. In very little cases this works but in most cases it doesn't. My family has told me to get surgery to go deaf, and I considered it, I would honestly rather be deaf than suffer from this. But with these surgeries, even if I were to remove my Auditory Nerve (A surgery my ENT discussed with me, that could make me deaf), the Tinnitus would still be present most likely, because it's from the brain. Not a lot is being studied or researched in this department yet, it's hard to tell which is "Physical",  and what's coming from the "Brain".  Science is behind in this department, especially with Noxacusis (Pain Hyperacusis). There is a surgery out in Florida at the Silverstein Institute, that focuses on "Loudness" Hyperacusis, but not Noxacusis. Even the statistics are average, not the best. So it's hard to pin point which treatment option, if there is one, would be best. We need to protect our ears as much as we can - even my Neuro-otologist (Best in Canada) told me to protect no matter what, he's the first doctor to deliver that information, So  I fully trust him. At the end of the day, we know our limits, we are the ones who suffer from it all, so we know what is best to do. 

When people do not believe the pain for us is as bad as it is, it gets very frustrating, because how do we get friends, family and loved ones to believe us?. Some will have their own advice for us, or they google the treatment for Hyperacusis & Tinnitus. Science is coming a long way, and regenerative medicines are in the works, but may not see the light of day for a few years still, maybe more. Sound therapy works for very little, most who are affected get worse by these "sounds" that come out of these sound devices. Very little research is being done, and the cure is still a bit away. Some people have luck with western medicine, with cannabis products, with natural herbs, diet etc. But a cure is not in sight as of yet. 

So what do we do?, when people don't believe us that the pain is as bad is it is?. The looks on our faces when someone is talking too loud or even at a normal pitch, covering our ears, and running and trying to escape from sounds should be enough to convince anyone how much pain we go through. Locking ourselves up in a quiet room, being a recluse. I don't think anyone in there right mind would be doing these things if they could push through the pain and it get better. If this was the case, we would be living life a little better, but unfortunately a lot of us are not. 

The sound of the phone ringing, talking on the phone, the speaker phone, the radio, the stereo, the TV (most of us now use closed captions to watch TV), the sound of anything that is artificial audio causes a great deal of pain. A dog barking, the birds chirping, the AC & heating units, the fridge humming. Not to mention the already blasting sounds of Tinnitus going through our heads as well, and any sound making that ringing louder. Some people have mentioned that their Tinnitus can sound like - Train brakes, morse code, whooshing, Christmas bells, whistling, electrical activity, like you are being electrocuted. This all happens 24/7 for some, they can't get to sleep because the Tinnitus is so loud, so they resort to sedatives, which in turn when they wear off usually make the problem worse. Babies crying, running water, dishes clanking, silverware clanking, the beeps from the construction vehicles, the beeps from the microwave. All of these sounds can cause a great deal of pain, and it's hard to transpire this to our friends, family and loved ones. So we ask them politely if they could turn down their voices, turn the TV down a little, not walk so loud on the floor above etc. Some have good response and are compassionate, but some are not.  

People have to live, people are going to live, and they are going to make noise. The world is not going to be quiet for us, so we have to adjust to the world, which is exceedingly difficult. When we ask for help, we really mean it. We can't do our dishes, we can't cook, we can't make phone calls, we can't make it to the corner store to get butter for dinner, we can't travel on public transit, studying a new course etc.  Even ordering and taking an Uber is hard, because you have to be in the car and the motor causes pain, the other vehicles, the ambulance, police cars and firetrucks going by, construction on the way. When and if we get to the point of the conditions becoming severe and catastrophic we need "Assisted Help". So that means someone helping us to live our lives, to do the everyday essential things for us to a degree, because we are no longer independent, and as much as we want to be independent, and others want us to be, it's just not possible, because the conditions just get worse when you push through, and get worse as time passes. We are not looking for pity, we are not trying to be a victim in any way. Point blank, the honest and biter truth is we cannot take care of ourselves any longer, and this is what a lot of people do not understand, because they can't physically see it, the illness is invisible. We protect ourselves as much as possible with ear plugs and over the head muffs. So when people are telling us to take our protection off and get used to normal sounds, it's like asking someone to commit suicide in a sense, because the pain will just worsen and worsen, many have tried and it doesn't work. 

So when facing these types of problems, when trying to educate and transpire what we need to others, and people offering their own advice can get difficult for us. I mean, it's great that people offer advice & suggestions, it means they care, which is a fantastic thing, and we who have these conditions need compassion and love, but at the end of the day we are the ones dealing with it all, and we know what we need. This is where the mental, emotional and psychological effects come in. Dealing with Hyperacusis, Noxacusis & Tinnitus and having a somewhat good attitude is a HUGE thing, It's hard to keep the mind in check. When dealing with others who offer their own opinions and advice on what we should do really takes a toll on our emotional and mental health, and makes the physical component even harder to handle, because now we have to deal with more on top of the illness. 

All in all, Hyperacusis Noxacusis & Tinnitus are invisible illnesses. We are not in a wheelchair, we don't have a cast on, our legs are not missing, our arms are not missing, but the nerves that are inside our bodies are in heavy turmoil, and for some of us damaged, and there is no fix. I have some of the most beautiful physical looking friends with these conditions but on the inside some of us feel like we are in the electric chair getting blasted 24/7. It's a hard thing to go through, and the whole point of this writing to try to get people to understand it more from out perspective, and not their own.

If you're loved one, family member, or friend is suffering from Hyperacusis, Noxacusis & Tinnitus. Please listen to what they are saying, they are going through it, they know their bodies, and what to do to help in the time being until a cure surfaces. 

Much love, Thank you.

David Vance.