Undiagnosed chronic headache, possibly hyperacusis-related
Hi everyone,
I started experiencing sound sensitivity last year, 2 weeks after a 90-minute long MRI of my whole spine.
My theory is that the foam ear plugs I wore were not fitted properly, leaving me with insufficient protection from the loud noise.
Given that it was an MRI of my whole spine (including the neck), my head was placed in a cervical spine coil. I was foam ear plugs, earmuffs, and on top of that, the padding inside the coil made it a tight fit for my head.
I didn't question any of it at first. I had done MRIs in the past and encountered no problems whatsoever. However, halfway through the MRI itself, I notified the MRI technologist that I felt very uncomfortable from the tightness. 45 minutes into the scan, it started to feel as though my head was being pressed together like a giant burger being compressed so you could fit it into your mouth.
The first time I notified the technologist of my discomfort, I was largely dismissed and told that it wasn't long to go. It was around 5pm that time, so maybe they wanted to go home. So, I sucked up the discomfort and went through another 5 or so minutes. I was a people pleaser, unfortunately. The second time I notified the technologist, I was taken out of the machine and they removed the padding inside the coil. This took out most of the discomfort.
What I didn't realise at the time was to fit the foam ear plugs properly, you're meant to roll them in your hand to make them thin enough to fit into your ear canal before they return to their original shape, providing maximum protection from the noise. I only learned this 6 months later during another MRI with a different technologist.
As soon as I stood up after the MRI had finished, I noticed unusual discomfort in my jaw and the sides of my head and face. It felt absolutely tight. I didn't question it. Thanked the technologist and I made my way out. I ate dinner not too long after that, and I could feel the discomfort while opening and closing my mouth, chewing, etc. Again, I didn't question it. The following morning that tightness was pretty much gone. However, I did find a blood stain on my pillow, and I suspected it came from one of my ears.
It was about 2 weeks later that I started experiencing sound sensitivity, and nearly 2 months later, I was diagnosed with hyperacusis by an audiologist. There wasn't any treatment advice given. I was just advised to see an ENT. The ENT knew absolutely nothing. After seeing 3 ENTs, not one of them seemed to know a thing about hyperacusis.
3 months later, that's when I started getting headaches. I also started experiencing my head just feeling tight and when I sleep on my side, I could feel/hear the pulsing of sides of my head.
My stress levels have been at an all-time high, and dealing with multiple physical health problems has led me to many times where I would crash out and scream at the top of my lungs in my room out of extreme frustration and feelings of hopelessness. This is not an experience I'm prepared to share with the neurologist I'll be seeing for my headache soon. I feel as though I'd risk being judged instead of being seen for the symptoms I'm presenting.
During one of my crashouts last year, I started getting headaches and ear pain that would take days to partially recover from. And what I've noticed is that the longer I go without crashing out, the less severe my symptoms are.
Piecing all of this together, I'm dealing with 3 problems that I believe to be correlated:
- Hyperacusis (sometimes noxacusis)
- Pulse-like headache
- Head feels tight almost constantly
- Tinnitus
- Ear pain?
Theory #1: The loose earplugs directly caused my hyperacusis, leading to high stress levels, bruxism, and eventually headaches.
Theory #2: The "compressed" feeling of my head which caused tightness on the sides of my head and jaw, leading to hyperacusis, and eventually headaches.
Theory #3: My autism made me already sound sensitive, and the loud noise of the MRI exacerbated and made my sound sensitivity A LOT more noticeable, given that I'd never experienced sound sensitivity before. (I'm only including this because it is my doctor's theory, and while I do find it somewhat plausible, I never really complained about sounds throughout my lifetime prior to the MRI incident.
Theory #4: Some kind of combination of Theories 1-3.
As far as my hyperacusis and tinnitus go, I know how to make them less severe, but this pulse-like headache is just something I couldn't wrap my head around (no pun intended), and I'd really appreciate any advice here.
I'm sorry for the long post, I tend to get sidetracked, but I genuinely don't know how else to explain my symptoms without giving a huge backstory.
I guess my question is whether any of you have experienced similar symptoms, especially regarding the pulse-like headache or even getting hyperacusis in the first place because of an MRI.
Also, any advice on how to talk about this to the medical professionals I'll be seeing in the future? At the end of the day, I want to provide all the relevant information I can, so that they can help me. It's just that the last few times I did that, I just get gaslit or the consultation goes nowhere.