It takes everything away from you

It strips you of everything in life worth while, when it gets to a severe and catastrophic level, there is no going back, unless a serious miracle happens. The only miracle we know of, is a cure, to regenerate hearing, to help the systems of the ear to return to normal, or even almost normal would be ideal to live a somewhat purposeful life again.

The kettle is whistling non stop 24/7 in the head, and in the ears at 80 dbs, the brain won't calm down. The sounds of a jet engine roaring has taken place, sharp piercing knifes being stabbed into the ears, and the head. It’s not recognized in this world on a decent level at all, as it is so rare, severe Tinnitus & Noxacusis, (Pain Hyperacusis). The patients are the ones who need to advocate, and push for a cure while being exceedingly sick, while people who have normal hearing, are not interested in dabbling into the health condition that much at all, because there is rarely  any recognition for it, which means not much money. Thank goodness for the folks at Hyperacusis Research who are trying to help us to live again, with the work their researchers are currently doing. 

The patients who are severe, sometimes get labeled as having a “Mental Disorder”, when it is in fact the other way around, and the mental distress all develops because of the large "physical" impact that takes place, that people other than the sufferer just cannot understand, and hopefully this article can transpire the right message. 

The patient had dreams, and goals before it all started. To start a family, already had a good paying job, have kids, and travel the world. Just because severe Hyperacusis & Tinnitus kicked in, all of those dreams got smashed, and the patient tries to explain to the people around what is happening to them, but the condition is invisible, and normal hearing folks do not get how badly the patient is affected, their behaviour should be the major eye opener for others. The mental distress, the flying of the handle, the asking for help from people around, constantly, wanting to talk to folks a lot. Some people if they have parents, they help, which is great, because they need it or a spouse. What if the patient has no parents or no spouse?, and disability doesn’t pay enough to have a stable solo home for them, to live comfortably and not having to tell people to be quiet all of the time?. It’s a nightmare NOBDOY WANTS. The patient worked in the hospitality industry serving some of the world's biggest celebrities prior making 50K a year, and now grossing just over 1k a month on disability from having Lymphoma Cancer, and the treatments this person had to cure the cancer started Hyperacusis & Tinnitus, it’s not enough to take care of this ailment, but at least it is something. The patient needs a quiet home, to be able to maintain and not get worse, and for some people it does not happen, some folks become homeless because they cannot find the right accommodations, and the people around them don't believe how severe they are, because they cannot see it, and get sick of hearing from the patient. Imagine being homeless and camping out in the world, and noise is all around you, and every noise causes piercing, stabbing, burning pain to the ears and the head?, the patient wouldn’t last a day, and probably would commit suicide. 

Where to go?, who to ask for help?. Nobody on planet earth can cure Noxacusis & Tinnitus, yet. The patient is alone, and isolated from the world, lives a life online talking to people on the World Wide Web, and not in physical form, because the sounds of even a fork touching the table causes sharp, burning, piercing pain. The patient was a social butterfly before the conditions started, and had a lot of friends and support. But now having to isolate from the world and not being out engaging with folks, people have forgotten about them. It’s not the patients fault for having the conditions, the patient tries to reach out to family and friends for emotional, and other supports. The patient feels irritable, when people don’t take what they say seriously, and people kind of rub it off as “Just a bit of ringing in the ears, sensitive to some sounds”, “Put some ear plugs in, and some headphones on”, a loved one or a friends says. The patient cannot tolerate most sounds even with hearing protection on now because the conditions are at a severe and catastrophic level, that is about 1 in 5 million maybe. The patient is in pain even In complete silence, it’s absolute torture, and even people being in prison have a better life. People in prison can sit in their cell, read a book and count the number of days when they will be leaving. No need to worry about the fork dropping, someone’s voice causing them intense pain to make one hurl. 

The patient is tired, cannot take anymore, just wants family, friends and others to be of support, so they can feel like they still belong in the world. Their peers get irritable, when the patient reaches out, and if the tables were turned the people who do not have Noxacusis & Tinnitus would be doing the exact same thing, they just might be worse, who knows. Severe Tinnitus and Hyperacusis will drive anyone insane, even Alan Watts & Sadaguru would go bonkers, and they are some of the worlds best buddhists and healers. The patient is strong, the patient looks for the small things in everyday life to bring them just a little joy. A friend suffering from arthritis or another physical pain disorder, says they have so much physical pain, that it's hard to take care of everyday activities. That person can still drive, that person can walk around freely, the person is in pain, but the person can wander around, and not worry about the sounds of the car motor causing them pain, and if it does, they may tailspin and crash and die, and maybe into people as well. The person would not be able to work doing a physical job anymore, cannot tolerate their kids or pets voices, and eventually isolates themselves in a dark hole in the house to hide from every possible sound that would cause them intense pain. This is exactly what is feels like for the sufferer, it's a nightmare on elm street times fifty, Friday the 13th Jason is constantly torturing you 24/7 with his bloody blade. 

The sufferer cannot get any help, has gone the mile to speak to the best doctors in the country, and in the world, and still no help. Some of the treatments that help others too a degree don't work for others. Everyone’s body chemistry and pathology is different. So what works for one, may make the other worse, this is usually with medications, and with less severe symptoms “Sound Therapy”. 

All in all, it’s complete torture, as you can tell from described, nobody deserves to be put through this, and the patient deserves help from all angles. Family, friends loved ones, and most importably the medical system needs to take Hyperacusis & Tinnitus a lot more serious, before more people eventually take their lives from these God awful conditions.   

Thank you for listening, so much love, and let’s all try to help make this world a better place, one day at a time.

David Vance 

 

Written Documentation From Physicians Regarding Hyperacusis & Tinnitus

Ever have trouble with family, friends, loved ones, the workplace etc. taking you seriously when you tell them that Hyperacusis & Severe Tinnitus is truly debilitating?. For me personally it's been a struggle, has been for five years, and still to this day it's hard to convince people who don't have the conditions how horrid it all is for one to handle. It's literally a nightmare, that nobody wants to have. 

My current ENT (Ears Nose & Throat Doctor) knows how debilitating it is for me, because he see's me at my worst. I go into the office, sit down the hall away from the regular public seating area waiting for my appointment, because it is far too noisy sitting with everyone else, even with hearing protection on.

He actually listens to me which is good, and recently I needed a letter written for my disability medical review, and he wrote out in detail how awful my conditions really are.

My ENT states the following below, which describes that I have tried everything to help myself, and that the conditions are chronic and expects them to not improve over time (Click the image to view larger text). At the same time, some people still only listen to their own head based opinions, which is sad when a professional doctor is delivering how bad things really are. 

I have a friend (Jerad Rider) who needed to get sick pay from work because of severe Hyperacusis & Tinnitus, as he could not work anymore, he filed a disability claim, and had to get his Audiologist to fill out the forms, and unfortunately his insurance company denied him. His workplace also told him that if he cannot return back to work by May 2023, that he will be separated. This is all because Hyperacusis & Tinnitus is so rare, it's even hard for people to get long term disability for it, unless there are other major issues going on. For me, I have  my disability benefits, because my root is from Cancer treatments back in 2017/18. Had my conditions started from something else, I am not sure if I would have financials to help me to get by today. 

Click the image to read some of the claim, the doctor clearly states that he is unable to perform at normal capacity for the establishment, cannot handle sounds in the workplace & any environment, normal everyday sounds cause significant pain to him, he will need treatment to progress, and yet he was still denied. This is the world we live in now, where someone severely disabled to the point that the sounds of rubbing his own beard causes him pain, can't get help from the workplace or the government, which is extremely sad, and something that needs to change. 

All in all, whether family, friends, loved ones, doctors, the workplace. Hyperacusis & Tinnitus needs to get recognition, as when it is severe it can take a massive toll on someone's well being, even at a mild level as well, to the point of being seriously suicidal. Everyday living at home is too much of a struggle for the patient. Focusing on reading a book can be a serious difficult task when having 90 db Tinnitus in the ears and the head present almost 24/7, followed by Hyperacuis pain as well. Even the sounds of turning pages can cause razor sharp stabbing knife like pain into the ears. Now if reading a book is too hard, imagine working at a physical job, not happening unless significant improvement happens over time, even if improvement does happen, from being in quiet and wearing hearing protection, the patient can still get a major setback landing them back in the same place, or even being worse than the start of it all. 

What we need is a regeneration medicine / therapy to surface to help regenerate the auditory system, but  most likely will not be coming for another five to ten years at the very least. 

Thank you for reading, so much love as always!. 

DV.