Certain sounds trigger sudden painful reactions in my body, but why? Why am I experiencing sound sensitivity? I’m going to take you through my process of trying to figure this one out.
Please remember that I am not a doctor. I’m just a curious patient looking for answers and various coping mechanisms which I share with you here. If you experience anything I speak of then please speak to your doctor, like I did.
Also, if you prefer to watch a video version of this blog post, then you can right here, if not then scroll on:
My Background & How I Cope with Sound Sensitivity
The first thing we should look to tell the doctor are our symptoms, known triggers and any past traumas:
I have never worked in a very loud environment and neither have I had any past trauma associated with noise or any type of injury. In fact I have always lived in loud and noisy cities so loud or sudden sounds aren’t new to me. In fact even sudden sounds in the silence of the night isn’t new to me – especially when you live in a city that doesn’t sleep, Mumbai.
But in 2015, something changed.
Well, I know what changed. I went through a huge flare up and health-crash with my Ehlers-Danlos syndrome (EDS). My legs were in excruciating pain and I now couldn’t walk properly, but I didn’t know why.
18 months on, we got to know it was Hypermobile-EDS.
You can read about my diagnosis here and how I manage it now:
- My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
- My Experience: Treatments to Manage Ehlers-Danlos Syndrome
- How I Accepted My Mobility Aid. The Steps I Took.
Along with EDS, I was also diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome. It’s a type of Dysautonomia, in which patients experience an autonomic dysfunction.
If you wish to read more about this then you can here:
So since 2015, my body now seems to react to sound all after my EDS health-crash episode.
If I hear a high pitched sound, whether it’s a spoon, or a high pitched voice – O’ and even if I hear a hair pin fall on the floor – the sound of metal can on rare occasions trigger one of my legs to jerk (especially when I’m resting), but almost always cause sudden pain in any part of my body.
This pain is as if someone sitting inside me has punched a bruise . This pain reverberates just like sound does and spreads to neighbouring areas. It’s all a very internal type of pain, as if the pain is coming from inside out.
No matter what I do, I cannot control how I’ll react.
Now if that wasn’t enough, I can’t take too many sounds at the same time all while someone is talking to me or when I’m trying to work.
For example, if the television is on and someone speaks to me, I start feeling physically and mentally disturbed and struggle to focus. This feeling is worse if I’m the one speaking because I feel I can’t hear myself. It’s as if my thought process and my ability to comprehend reduces.
So in my home, we’ll mute the TV when something needs to be said and, whether I’m having a conversation or not I mute the TV commercials which seem to always be louder than the actual show we’re watching!
You’d probably wonder now (or you may not wonder, but just in case you do), how do I live in a loud busy city and go to loud cafés, restaurants and other places of loud conversations, sounds of cutlery and loud music?!
I don’t seem to have a problem with loud – I love loud music, especially if it’s music I like ( 😀 ) but if in that loud music multiple conversations are trying to happen then my brain gets confused and it triggers pain – all very involuntary.
In cafés, yes the cutlery sounds bother me and so do high-pitched conversations coming from another table. All this pain that I experience is extra pain because I’m always in pain any way (thank you EDS, Endo and fibromyalgia) so I find myself having to just bear the extra pain because I rarely step out and meet friends so I just deal with it and try re-focussing on enjoying myself.
My family and close friends know about this so they understand my struggles. My mum makes sure to not go in the kitchen, move spoons or utensils around or close any drawers or cupboards when I’m resting. She has been so kind in adjusting her work around me to give me the least amount of discomfort for a couple of hours a day to help my body recuperate.
As you can see I don’t have a great strategy to manage it, but somehow I cope. Now that’s my background but why is this happening?
Let’s first understand…
Which Conditions are Linked with Sound Sensitivity?
There are many such conditions, but I’ll only share a few so that I can keep the purpose of this post on-track.
The first condition I came across was Hyperacusis:
Hyperacusis is a rare condition in which there is sensitivity to sound, whether it’s loud sounds, everyday sounds and even high-pitched sounds can cause pain in the ear. It can even feel like a burning pain in the ear, a sense of fullness and tinnitus occurs in some patients.
But this doesn’t match my symptoms, because I do not get burning pain or any pain in my ears, but reading this 2016 post on StatNews.com made me believe that there could be so much more to hyperacusis than it just paining the ear and head region.
“Within the cochlea, one kind of nerve fiber has long puzzled scientists. These mystery fibers resemble pain fibers elsewhere in the body.
…when certain sensory cells of the cochlea are damaged, as might occur during very loud noise, they release a chemical that activates the mysterious pain fibers. In some people, these fibers seem to switch on — and never switch off.”
Now with hyperacusis ruled-out, let’s look at my second option.
While going through various forums, I came across a lot of people who go through what I do. In these forums, many suggested something called a Sensory Processing Disorder.
What is Sensory Processing Disorder (SPD)?
Without getting too technical, SPD is when the way in which our sense perceptions (sound, smell, touch etc.) are not properly integrated and processed in our central nervous system “to provide appropriate responses to the demands of the environment.” (Wikipedia). Which means that some or all of our senses don’t react how they should to various stimuli.
Also reading further, although there is no known cause for SPD, the processing, like I said earlier happens in our central nervous system, which also houses our midbrain and brainstem. “…these brain regions are involved in processes including coordination, attention, arousal, and autonomic function“ (Wikipedia).
Now stay with me here..
Dysautonomia is an condition where there is an autonomic dysfunction.
And I have POTS, which is a form of dysautonomia.
It was time to speak to my doctor and know if this was the reason or is it something else, because the reason for pain hasn’t been answered – or has it?!
Before you scroll ahead, I had to share this – love this art by Vanessa Matelski:
View this post on Instagram
What Does My Doctor Says about My Sound Sensitivity?
Now because I have dysautonomia, it’s very obvious to my doctor that my senses experience a dysfunction. I am bound to be troubled by my senses just as I do with sound and smell at times, whereas others (just as an example) will be troubled by touch and taste more – some may be troubled by all.
The next question that then came to mind was:
I’m sensitive to sound because of my autonomic dysfunction, but why does it cause pain?
This is where my doctor explained that since my senses are sensitive and are hightened, so are my pain levels because of my Ehlers-Danlos syndrome and my fibromyalgia. Plus the dysautonomia tends to keep the body a little too alert and sensitive to most things the body experiences, therefore it’s no surprise that one trigger, in this case, sound (which I don’t process well) can cause sudden pain in areas that have gone through severe EDS trauma from my 2015 health-crash. This makes perfect sense to me. (Hopefully I’ve explained it as well as my doctor did!)
Phewww! So I now know why it’s possibly happening but my doctor did add that there does need to be more research in these areas and it should be explained to patients who experience this.
To add to that, I feel such explanations are necessary so that patients have the confidence to share that what they’re going through is actually happening to them. Because in my personal experience, people like me are at times frowned upon or not believed by those around us.
Before I end, while researching, I came across various other interesting conditions related to sound sensitivity – especially ‘misphonia’. In case you’re curios what it’s about then give it a search, because it does seem to trouble many who have Ehlers-Danlos syndrome (it was mentioned on many forums), but its symptoms don’t match well with mine so I gave it a miss and my doctor felt it wasn’t misphonia for me either.
I hope this post has helped you. O’ and if you have more insights on sound sensitivity and pain then I would love to hear from you. Please do drop in your comment in the comments section below – thank you!
If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.
I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.
~~~~~~~~~~~
Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
I relate to this so much! I find it so difficult to be in a place where there are multiple conversations happening, and especially if the TV or radio is on as well. Anything ‘sharp’ sounding like cutlery makes me wince and my whole body seems very on edge to it all. I often go really hot when it happens as well. I think it is a combination of migraine and dysautonomia. Such a great post as always Shruti!
I have had sound sensitivity for a long time but I have had fibro for a very long time and sensitivity also comes with that. And light sensitivity as well. And then came the migraine attacks which just made all that worse.
This is fascinating! Thanks so much for sharing this!
I have a similar challenge with TV and conversations.
Our brains are amazing, and I really appreciate this insight into another way our brains go wrong.
I’m the same. TV and multiple conversations. Any kind of noise that is happening that is ‘out of the ordinary’ from what’s in our home. I realized in 2015 at a hockey game that arenas and sports and concerts are out. I got so sick, I didn’t leave bed for a week. CNS overload. That was the first time my family saw it happen since i was home visiting. My family is really loud at dinners, etc., and even after that incident, they have still continued to talk at the same volume, all drinking and talking over each other. (I don’t drink.) It’s very hard to do large family get-togethers. I usually focus on something really small with my parents instead. So strange.