Ménière’s?

In my previous post, I mentioned that work and separation from quality family time were making me sick. I meant this literally.

Doctors suspect I may have Ménière’s Disease. The word ‘disease’ always sounds scary. In this case, it’s nothing life-threatening, but it is a pain in the ass. The definition and diagnosis of Meniere’s Disease should be left to doctors – it hasn’t been 100% confirmed for me at this stage anyway. I can only describe my experience so far.

Sometime last summer (around a year ago), I was delivering a training session when I realised I couldn’t hear people clearly. It was mostly in one ear. My ear felt full. This lasted a few days. I thought it odd, but it passed and I didn’t think much of it.

I don’t remember the order of what happened, but gradually this began to happen semi-regularly. New symptoms started and escalated. Dizziness, vertigo, overheating, vomiting and an upset stomach.

With more experience, I began to recognise the onset. I’d start to notice my head didn’t quite feel right or my vision was slightly off. Not like when you’re tired, more like the start of drunken vision, but without the alcohol. Not long after, I would feel a fullness in one ear and experience a drop in hearing.

Knowing what was coming, I could take the medicine prescribed by the doctor. Medicine to drain the fluid in your ear that’s potentially causing the balance issues. You end up peeing a lot. Sometimes it helped, sometimes it didn’t. Then, gradually symptoms started happening at least once a week with little to no warning. Medicine was of little use by this point.

It can be so incapacitating. Can’t move my head, can’t walk, can’t drive, can’t eat, can’t hear clearly. I know the drill: lie in one position, moderate my temperature with sips of water and wait for it to pass. Sometimes it’s an hour, but more recently it’s a whole day. If I move, it gets worse and I’ll ultimately vomit until there’s nothing left.

However, in the past three weeks, the symptoms have changed. I’ve lost 25 decibels of hearing in my left ear and it hasn’t come back. It’s like someone switched off the volume. It makes me feel like the world is a little more distant. I’m also experiencing a constant tone in my ears, not unlike in the movies after a bomb goes off.

In addition to the above, I have a general feeling of being unwell. The other weird thing is that the vertigo now only happens briefly when my ear pops. Doctors have told me that everything including the hearing loss may or may not be reversible.

So, the next few weeks will involve regular check-ups and tests to get to the bottom of it and hopefully prevent permanent hearing loss. Thankfully, it doesn’t seem to be a tumour as the scans came back clear. For now, I’ve been told to avoid salty food and caffeine as these are reported to make things worse.

At times, the situation saddens me because it’s robbing me of quality family time. It’s also pretty miserable feeling consistently unwell and, at times, not being able to do anything. However, I can still function most of the time, I can still earn money and be with my family.

It’s important to stay positive because from what I can tell, there may be a connection between the symptoms and stress. Therefore, in a vicious cycle, the more I worry about the symptoms, the worse it could get.

My job is stressful. Raising a family that I don’t get to spend much quality time with is stressful. Sometimes the attacks come on when the stress isn’t any higher than usual. Although I’m told it might be incurable, it is manageable.

The best I’ve come up with in the short term is to take medicine as prescribed, manage my stress levels as best I can, and use my holiday allowance. My biggest concern is the potentially life-changing effects of permanent hearing loss and how far it could deteriorate.

However, there is hope in the long term. Having had plenty of time to reflect on life when I went back to my hometown to say goodbye to my grandfather, I realised that something has to change. I can’t go on like this.

I believe my symptoms are a message from my soul, communicated through my mind and body that something has to change. And it will. I’m working on a long-term plan to change my lifestyle. I plan to step away from management for at least the short term and move out of a busy, overcrowded city and closer to nature.

If you have experienced or are experiencing similar symptoms, make sure you see a doctor as soon as possible. Push for appointments or travel to a bigger hospital if necessary. Get help before it gets worse. Sacrificing health isn’t worth it.

Whether you’re affected by Ménière’s Disease or not, the lesson here is to listen to your body and seek medical help. I’ve been ignoring mine for too long. It’s time to change.

What’s your body telling you? Do you need to make a change?

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More info on Ménière’s Disease:

Meniere’s disease, Mayo Clinic, January 3rd, 2024:
https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910

Ménière’s disease, National Institute on Deafness and Other Communication Disorders, February 13th, 2017:
https://www.nidcd.nih.gov/health/menieres-disease

Ménière’s disease, NHS UK, April 25th, 2023:
https://www.nhs.uk/conditions/menieres-disease/

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