I don’t think that most people without PCD realize how overstimulating sounds can be to a person with PCD. The cilia are responsible for moving the natural ear fluid down the eustachian tubes. In PCD the fluid doesn’t flow properly to the throat through the eustachian tubes, so as new fluid is made, it builds up in the middle ear and into the mastoid area. The build up of fluid interferes with the person’s ability to hear properly. Sometimes the PCDer will experience hearing loss making the person unable to understand and process sounds. And some days, this fluid acts like a megaphone and amplifies the sound making sounds extremely loud and unbearable. Unfortunately these impacts are transient, meaning they come and go. The patient never knows how their hearing will be from one day to the next, even one minute to the next. This transient hearing also makes getting accurate hearing tests for PCD patients near to impossible.
I can’t tell you the amount of times my ent will say my audio gram looks good, but my hearing stinks from day to day. It’s completely frustrating for me let alone my spouse. There are also days I long for quite because all the sounds are amplified and I’m over stimulated and it really affects my frustration level. If you have a little PCD person on your hands it’s often difficult to understand that sounds can be quite frightening on a daily basis, especially when the hearing ability fluctuates. Your little one’s frustration and overwhelmed feelings can be driven by their inability to cope with transient hearing symptoms and the reactions of those around them. Honestly I had that bipolar parent who couldn’t deal with my fluctuations in hearing ability and punished me for them. Please remember that if it’s frustrating for you, just imagine how frustrating it is for those of us with PCD ourselves.
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