The year of 2022 has been a wild one, and to say the least, not the most positive. I want to be optimistic, but with the conditions I have - Hyperacusis & Tinnitus - it's very hard to keep optimistic when things keep falling over, from my own personal experience. I started a medication for these conditions back in October of 2021, and it worked for a while, but needless to say after some time, it started to make me worse, and to this day - I am tapering off, but it's a nightmare that one does not want to have, as my auditory symptoms are getting worse, from my nervous system going pretty haywire. If I had not started this medication, my year may have been a lot more positive, and went in a different direction.
I started a company to raise awareness for Hyperacusis - called Hyperacusis Central, which took off well and to this day is still doing well, I left it in the hands of my colleagues, as I moved on to different things. I also currently volunteer for another organization - Hyperacusis Research, to keep me busy doing a "lighter" role, but since my Hyperacusis has been falling lately, I am very limited to what I can do now. Never ever did I think that my life would turn out to be like this. I am a hermit, that sits at home, and I watch the world go by, without my full existence being engaged. It's very bleak, and needless to say not something I envisioned at all.
Some of my family do not talk to me anymore. Hyperacusis is not well researched, there are modalities to help that are posted on the inter web, but these modalities do not suffice with the type and severity of my conditions. I get the whole "You are 40 years old and an adult, why are you talking to us, and trying to rely on us?", "David, this is your anxiety and if you control your anxiety, your symptoms will start to go away". This tactic has not helped, and the only way for me to get better is to reduce my medications - stay in quiet, protect my ears - hope for the best, and stay connected to my supports.
I have met some great people, especially this year on my journey, and I wouldn't have been able to get by without them, they all hold a special place in my heart. We talk almost everyday, and help each other somewhat feel better one day at a time.
All I can do now is hope for a better 2023, reducing mediations - now that I am in a quiet residence. I have lived in loud environments for over 3 years, and this is the quietest I have had it so far - living with a friend who has Hyperacusis as well & her mother. I don't know what the future holds, but all I have to worry about is today, getting through today the best I can, and when tomorrow comes, I'll tackle it then.
It's a very hard road living with severe Hyperacusis & Tinnitus, and I would not wish it on anyone, not even my worst enemy. Being sensitive to everyday normal sounds, that cause pain, is like being allergic to air. We are hermits, live in isolation 80 percent of the time, and it is no way to live, humans are supposed to connect with one another, and physically. But with Hyperacusis, all we can do is support each other virtually. At least we have the internet, if the World Wide Web did not exist, I don't know what the Hyperacusis population would look like. All we can do is hope for a cure to surface sometime in the near future, or to miraculously find something to help until' then, that will make us feel better.
If you are living with a loved one who has Hyperacusis or have a loved one who has the condition, please listen to every word that they say - we are a small & very "rare" bunch. More than anything, we need people to listen to us and too believe us that Hyperacusis is real, it's an invisible illness, you cannot see it, but it takes a massive toll on the people who get it. Some think that Hyperacusis is a mental problem, but in no way it is - it's the complete reverse actually. The mental problems kick in after the "Physical" condition starts, because of how much pain one can go through with it - this goes for Tinnitus as well.
Thank you for listening, Much love.
David Vance
