What most people don’t understand is that I am always in pain all the time every day not just on school days. The pain from sound lingers for me long after the noise so even when I have not been into school in a few days my pain level has only gone down mildly.
Even during the summer time it usually takes about 1 to 2 weeks of me being in a quiet place not going out places for the pain from the school year to completely go away.
I usually just want to try to stay in quiet places during the summer so that I can keep my pain at this low level I know that I am still going to be in some level of pain because there will always be sounds like airplanes, flushing the toliet, or my parents moving around downstairs but at least it I try to stay in quiet places like at home or at my grandmas house the pain is low.
Many people don’t understand why it is that on the weekends I don’t go out and do things people don’t understand how the pain from Hyperacusis lingers long after the sound is gone and how long the weekends or days off from school all I want to do is lay down because I’m still in a lot of pain.
Many people also don’t understand why it is that during the summer since I’m not going to school they feel like I should be doing something else or I’m going out places a lot but when I do this then my general daily pain level is higher.
Most of the time for me being functional means that I’m in more pain for me it’s more important that I’m not in pain then being able to live a normal life.
Every day the pain from basic normal sounds that most people don’t think hurts me. The pain builds up throughout the days and weeks all of different pain sensations that I described in part one build up. My forehead, temples, ears, side of my head above my ears are always hurting from previous sounds throughout the day and weeks.
As I go throughout my day every day especially on school days a painful sound example the sound of my locker in the morning is even more painful at the end of the day. The more sound that I am exposed to the higher my pain level is and the more pain I am in then same sound becomes even more painful.
It’s very frustrating for me but there is so little research done about pain Hyperacusis and most people always keep thinking that if I just gradually expose myself to sound that my body will eventually become desensitized.
I have been attending school and functioning more normally for about five years now and the pain has not gone down. For me being functional is not worth being in intense pain every day I just want to be able to live my life without it being painful even if that means that it looks different than at other peoples.
Many people out of the common misconception but my condition is psychosomatic and is an emotional disorder rather than a physical condition. It’s been very hard for me living with this condition it is so under research and in which the pain component is often times under looked.
This has led to me constantly being subjected to different types of treatments and lifestyle changes that were supposed to help me but have only made it so that I am miserable and in pain all the time.
A lot of people think that I’m just trying to be manipulative or dramatic or this is just a behavior condition which makes it even harder for me but people don’t understand that I am in real physical pain all the time.
The pain sensations are always building on top of each other and it’s very hard for me to ever get my pain down to a low level. The only times I don’t experience any pain at all is when I have on my cefaly in combination with the tens and Alpha stem unit.
The days that I am the happiest are when my pain level is low because I have been staying in quiet places for several weeks and not been doing anything loud such as attending school, going to family gatherings, going to noisy outings, hanging out with multiple people at one time, preparing my tray in the kitchen, etc.
Imagine that normal every day sounds such as: people talking and laughing, telephone ringing, dishes clanking, Music or TV, lawnmowers, running water, refrigerators, etc cause you physical pain, that lingers long after the sound.
Most doctors do not even believe you that you are in real physical pain and think that it is psychosomatic or all in your head, and the few doctors who do believe you still think you need to desensitize yourself, which only worsens your pain therefore increasing your sensitivity.
I get tired of having to deal being in pain everyday and having such a poorly misunderstood and under researched disorder.
One of the most frustrating things for me is when other people will choose to sacrifice my pain for normal functioning or socialization.
This happened especially a lot when I was younger but it is still happening to me every day, the people who are choosing to make that sacrifice to put functioning a normalization and socialization a head of pain they are not the ones you’ll have to experience the pain they do not live in my body.
Either way whether it is me missing out and not leading a normal life or whether it is me living my life but being in extreme pain every day I am the one who’s going to have to experience it.
I don’t think people really realize the basic every day things they do that they find to be no big deal even sounds that last very briefly increase my pain especially as I am already in a lot of pain from previous noise.
Even when I take a rizatriptan and stay in sleep in my closet all day my pain only goes down a little it would take about a week or two of me doing that for it to completely go away.
I know a lot of people think that I am just resistant child who doesn’t really understand what is going on, but I have lived with Hyperacusis for the past eight years and I am the expert in my own body especially as medical Science and research still does not understand Hyperacusis with pain.
There have been many conditions throughout history that we used to think we’re psychosomatic but now movie so if you’re starting to show mechanisms for these disorders. There also been many treatments used in the past to treat different medical conditions that we now realize was not necessarily the best approach.
I believe that this is the case with Hyperacusis, even during my own lifetime as of a few years ago I was Harley able to find any medical research or science focus specifically on pain Hyperacusis more than acknowledged that there are specifically people with pain Hyperacusis Who do not improve from desensitization.
I believe that my purpose and my mission in life is to help raise awareness about Hyperacusis and change the way patient with Hyperacusis are treated in the medical community so that other people in the future don’t have to go through the pain, disbelief and being misunderstood that I do.
I hope that research continues to advance in my lifetime and they will eventually be able to find a cure for hyperacusis.
Hyperacusis Awareness: Sound Sensitivity Treatment 