My Story with Labyrinthitis, Vertigo, Hearing Loss and Mental Health

by Sara Sousa 2 years ago in body

Ears: an incredibly underestimated part of the body. This is my brutal story of my experience with an ear infection called Labyrinthitis and its impact on my mental health and life.

My Story with Labyrinthitis, Vertigo, Hearing Loss and Mental Health

Ears: we have to love them, right? Most people listen to music through their headphones or speakers when getting ready to start their day or even listen to music a few times a day. We all know what music does to us - we may feel alive, upbeat, motivated. We may also even feel sad, lost, confused, depressed. Music is the key in connecting our emotions through sound.

Our ears are incredibly important - they help us with our balance and enable us to have conversations with people. Personally, I believe that people take advantage of their hearing without thinking of just how vital ear health is. It's only those who have either gone through ear problems or currently suffer from ear problems who learn to appreciate their ears and wish for things to be different.

I'm one of those people.

My ear problems began two years ago. I started hearing a lot more on my left ear than my right. It caused a lot of problems. At the time, I was living with other people in a shared house. It became problematic to sleep because any little sound would instantly wake me up. As you can imagine, this caused a negative impact during the day. I was incredibly sleep deprived, I couldn't focus on my work which often got me into trouble which only worsened things, I was incredibly moody and it caused a lot of problems with people who I usually got on with. How can people really adjust to something like this for someone else when they themselves don't have problems with their ears? It's very difficult.

My doctor referred me to an ENT (Ears, Nose and Throat) specialist in order to investigate what could be causing this. During this time, I also had slight hearing loss in my right ear so it felt like a constant battle between trying to keep my left ear's hearing back to a normal range and then trying to have my right ear's hearing back. After a couple of hearing tests and scans, the ENT discovered the diagnosis - hyperacusis in my left ear and tinnitus in my right ear.

Hyperacusis is an ear disorder which makes it very difficult to tolerate sounds.

Tinnitus is a condition in the ear where you hear certain sounds that no one else can. These can be hollow sounds, ticking sounds and ringing.

With hyperacusis, each person suffers from different sounds. These sounds can vary from people to people, but in my case, it's frustration when hearing cluttery clash with plates, people eating, doors slamming, children crying and being in cafe shops (which is incredibly unfortunate because I love coffee shops but the sounds from the cluttery and sounds of things dropping can easily put me off). These are just ordinary sounds that you hear every day and most people don't pay attention to it. But people who have hyperacusis can suffer a great deal of pain. As well as having sleep problems, I got a lot of headaches, fatigue, and stress from this new sensation of sounds becoming a problem. At the time, I wasn't sure what to do and how I could get by. Eventually, I discovered the great blessing of Hyperacusis. It gave me a whole new meaning to music- I started to feel it more, noticing more notes than I ever did before, it gave me a greater sense of satisfaction and relaxation, so there is a two-sided effect with hyperacusis.

In regards to my right ear, the ENT told me that the only reason why my hearing is impacted is because my hearing on my left is greater so it overlaps my right ear causing me to feel like there is hearing loss (a little confusing right?)

Okay so, that's all fine and dandy yes?

I wish.

I went on casually the next two years still dealing with the agony of those sounds but coping enough to focus more on the fact that I could literally feel music.

It didn't last forever, unfortunately.

April this year, early spring starts to form. Unfortunately, this is bad news for others. Why? Hayfever. Yes, I have hayfever as well as asthma and for some reason, this year got me a whole lot worse.

I felt my usual symptoms of hayfever - stuffy nose, throat feeling a bit uncomfortable, nothing major. But what started to alert me was the fact every time I blew my nose or sneezed, I would witness a huge amount of blood on my tissue. I knew something was wrong - there's no way hayfever can be this bad, I thought.

As you would, I went to see my GP. No surprise, he didn't take me seriously. "It's just hayfever, this isn't serious at all" he said while I clenched my fists wishing I didn't waste my time with this guy.

My GP gave me a nasal spray and eye drops for my hayfever (oh the joy). It honestly made no difference. I had to suffer weeks with my nose pouring out blood every time I had to blow or sneeze. Eventually, it passed. I thought to myself "great, it's over now, back to my normal routine."

Boy was I far from right.

After a few weeks passed, I suddenly had this sharp pain and ringing in my ear. This startled me, but I thought to myself "well I have tinnitus don't I? Maybe it's just something that's happening because of stress" but then, I started going through some other things. I was eating a pizza one day and then I noticed the room was slowly moving. I didn't feel any nausea or any pain, but the room was just so casually spinning. This happened a few times a week for about three weeks or so. I thought nothing of it because I thought it was side effects to some medication I was taking so I just stopped it.

Then one day as I was going from work back home, I looked up and the spinning sensation came back. Except this time, I did feel nauseous. I felt incredibly sick and I struggled a lot to sit down to get the tram. I thought it would pass but it just kept on progressing. I then started to feel incredibly sweaty, my body was shaking and I felt incredibly anxious. The motion from the tram really didn't help because it was naturally moving, making the motion of movement that I was going through a whole lot worse. My heart was beating so fast and I knew something was going to happen. How I managed to get off the tram I don't know, but I grabbed on to everything I could just to make sure I wouldn't fall. I sat down and the spinning did not go away. It went from left to right and the speed became incredibly aggressive. I couldn't take it anymore - I knew I had to go to the hospital, but how could I call when every time I looked at my phone it looked like it was being flipped over? I had to ask a stranger to call an ambulance for me which felt very uncomfortable for me to do. They were very nice and stayed with me until the paramedics arrived. At this point, I was crying. The shaking got worse, I was sweating even more, my heart was pulsing even more and I felt like I was going to die (no exaggeration, I really felt like I was).

The paramedic surprisingly arrived quickly. He was very gentle and his voice was so soothing. Once he arrived, I felt a little bit of relief but it didn't stop the world from spinning and it didn't stop my shaking. He took my stats and said that my oxygen levels were a little low but it was because of the panic attack I was having. Another paramedic had to come to help me go on a wheelchair because I couldn't stand up and it wasn't going to happen from me unless I had support. They put me on a wheelchair to go up a ramp and let me say, that really didn't help with the dizziness, but there was no other way.

As soon as I got on the ambulance, the feeling of nausea got worse. My stomach felt like it was being squashed and my mouth got watery. My mum called because I was usually home at this time, but I couldn't answer my phone (obviously). The paramedic answered the phone and explained to my mum what happened. I could hear the panic from the phone. I was going to throw up which was a new thing for me. I told the paramedic that I felt like I was going to throw up. He instantly passed me what I call a hat to throw up in. The moment came and boy did I throw up to the point where it filled the whole hat. It was aggressive and painful, but the dizziness just stopped, but it didn't mean that I stopped feeling like crap.

My mother and our neighbour's daughter stood outside the hospital. Just one glance at her was enough to see she was worried. Her eyes were red, she looked pale and she was so relieved to see me. I wept when I saw her. What else could I do? I was worried about what just happened to me and I was in agony.

The paramedics left me in the care of the nursing staff. They placed me in a small room with a lot of patches around my body. They were worried about my heart so I had to do an ECG to test my heart. As I laid there, I couldn't help but feel incredibly tired.

Long story short, I waited three hours in the waiting room to see a doctor (because that's just the great and loyal NHS for you) and the doctor told me I had something called Labyrinthitis. He explained to me that the spinning sensation I was describing was called vertigo - an incredibly aggressive dizziness that can make you throw up.

He explained that vertigo is a symptom and in my case, it was a symptom of this condition.

Labyrinthitis? Um, what? It sounds pretty serious doesn't it? I was thinking to myself "what on earth is this? why do I have it, and why now?"

Labyrinthitis is an ear condition that can be caused either by a virus or bacteria. It can cause hearing loss, blurry vision, vertigo, and headaches.

In my case, I got the whole package - the blurry vision, horrible headaches, hearing loss, tinnitus, fluid from my ear and ear pain. This clearly wasn't a good sign.

The doctor advised that I need to be off for a while from work in order to recover. This didn't sound practical to me because I was in a new job and I was so worried about my probation period. It really didn't help my anxiety. Because I went through these symptoms for a few weeks, the doctor advised me to be referred to an ENT for further investigation. An ENT? Again? I saw those guys two years ago.

I went through a very uncomfortable conversation calling my work and telling them that I won't be able to come in because of this vertigo attack I had. They sounded very understanding, but then again it's wrong for them to sound horrible on the phone right? I went to my GP to get a sick note. He advised me to be off for at least three weeks.

Three weeks?! But wait, what about my probation period? Won't this cause a negative effect? Will I get fired? How am I going to survive if I do?

Just when I thought being told I got an ear infection was bad, my mental health decided to join the party of making my life a living hell.

Three weeks passed. I returned to work and explained that I'm waiting to see a specialist. I honestly thought I was better - I rested, stayed hydrated and wanted to go in to avoid being fired. I had a horrible sensation of fluid coming out of my ears and it wasn't comfortable going through this when I was at work. Suddenly, my hearing came back. I felt so happy. I thought to myself "well I'm clearly on the road to recovery right? This is great!" I ended up passing my probation despite my absence and I felt like I had control over my life again after a difficult few weeks.

For over a month or so, I didn't go through vertigo. I genuinely thought that the virus I had was gone. It wasn't long until it came back, but worse than before.

One Sunday morning, I woke up and I was instantly dizzy. I was really confused because I didn't know what was going on. I thought it would pass, but it didn't- vertigo struck again. The dizziness got worse - the spinning was faster, my head was hurting and my stomach turned. I began crying instantly. Every time I opened my eyes, I felt even sicker. I screamed for my mum to come because I was too scared to be alone. Why is this happening again? Why has the vertigo come back? What have I done wrong?

My mouth felt watery again. I knew this would happen. My mum grabbed me a bucket and I threw up continuously for almost two hours. My throat was burning, my stomach was hurting and my head felt like it was going to pop because my temples were hurting. This lasted for four hours. The whole day was a blur. There is very little you can do after a vertigo attack and unfortunately, it's never guaranteed when it will stop.

Once again, I had to be off work. The anxiety kicked in when I had to be on the phone again with work telling them once again that I will be off work because of vertigo. I went to my GP again for another sick note. He shook his head as he told me "Labyrinthitis is a very tricky condition, it comes and goes and it's really uncertain what can be done about it because it's viral. We're still waiting to hear back from the ENT who will look into it for you in more detail. Take these tablets and that should help you with the vertigo"

Here I was again, off work, now relying on these meds to help me. He gave me something called Prochlorperazine. These tablets are usually given to people who suffer from vertigo to help with the dizziness.

Even though I got told it was an ear infection, I did what a lot of people do to get an answer which most of the time isn't even an answer for them- I searched my symptoms on Google. Bad move. Very bad move. It seems that as I did that, the idea of it being Labrynthitis seemed less and less likely. I found a new condition- Meniere's Disease. Meniere's is an ear condition that causes hearing loss, vertigo and tinnitus.

For months on end, this is what I was convinced I had. I couldn't help but feel this way- I was waiting far too long to see a specialist and I kept being off work because I was going through vertigo every week and each week's episode was just as bad as the other. I felt far too paranoid to drink coffee, tea or even salt because I was so convinced I had meniere's.

My anxiety couldn't take it anymore. I couldn't stand being in bed any longer. My life was officially compromised. Relying on medication that I couldn't guarantee would work for me, being off work and worrying deathly every day what will happen to me when I go back and waiting for the ENT to send me an appointment.

For those who don't live in the UK, the usual procedure with referrals here is that you go to your GP, tell them what's going on, they reffer you to that specialist and then you get a letter with a number for you to call to pick the hospital or clinic. Sometimes, you won't get given an appointment straight away depending on the hospital. This can take up to three months to receive so one way or another, you sit there suffering while the NHS plays the picking game of who to see and when.

My referral was done in May when I went to hospital after that vicious vertigo attack. It was around July or so and I did not hear anything from the hospital I chose. I was getting annoyed. I called the original number again to see if I could pick another hospital. I chose another hospital and was given an appointment there and then.

The letter arrived for me to be seen by an ENT. At this point, I was still off work. The ENT that I ended up seeing was actually a junior doctor and he was the worst doctor I ever saw. He was very dismissive towards me, couldn't care less about how I was feeling, ignored me when I told him my symptoms and automatically gave me a diagnosis without even running any tests.

When I received the report that he wrote from that consultation which took over a month to recieve, he lied on the report about my symotoms and made a diagnisis without having all the tests done beforehand. I cried instantly as I read under diagnosis 'Meniere's Disease' and I thought my life was over. This junior doctor clearly violated a few things so I soon reported him and eventually was seen by an experienced consultant. He was very attentive and was incredibly empathetic. I just couldn't help but burst in front of him telling him how frustrated I am with the constant vertigo attacks I keep having and how I don't want to have Meniere's Disease.

My life has been completely compromised. I have spent more time in my bed than ever, I've had vertigo attacks every week with horrible sickness, the doctors I kept seeing didn't take me seriously and I felt completely lost and hopeless. I really felt like this was the end for me and that I will forever suffer with vertigo because again, I couldn't get the idea of having Meniere's out of my head. I felt so embarrassed to cry in front of an ENT doctor because of vertigo. It sounds silly, but when you have been depressed and anxious every day worrying about waking up to vertigo, it's just a cry for help. Overall, he made me feel relief. He explained how Meniere's can be treated and how overtime it improves.

Fast forward a little bit and trying to make the story as short as possible, I have been off in total four times in the space of six months because of vertigo. I've been incredibly worried about my work as well as finances because sick pay really doesn't take you far. In the UK, you can get up to £89.35 a week with a sick note. That's £357.40 a month.

In my company, you get sick pay from them, but they only cover you for two absences.As you can imagine, it's been a very tricky few months with living off that.

So, after all the scans I ended up having in these few months, no tumour was found to explain the headaches and vertigo, this did provide relief, but not as much as you would think given that Meniere's Disease was not yet ruled out.

Last week, I finally went through the test required to rule out Meniere's Disease. It's called Ecohg.

This is the test done to officially rule our Meniere's Disease. Surprisingly, I managed to sleep the night before as I have been suffering from chronic insomnia these past few months because of my mental health. I went into the assessment shaking. This was the day that I would get told an answer for what is wrong with me: Labyrinthitis or Meniere's Disease. As I lay there waiting with equipment all around my head and ears, I cried silently. This was my make or break point. I laid there in the dark listening to clicking sounds which was the only distraction to prevent me from going insane. When the test was over, the audiologist looked at me and said 'it's not Meniere's Disease'. I shouted 'yaaaaaay ' because now I have an answer. An official answer as to why I've gone through so many problems with my ears these past few months and why I've been having vertigo

The audiologist showed me my results and explained that there is nothing wrong to indicate Meniere's Disease and that I had a chronic Labyrinthitis virus which has left some damage to my ear.

Now, I am slowly on the road to recovery, however it is not an easy recover as the rehab exercises are difficult and I have just returned to work. I'm slowly getting used to walking again as I've not been able to walk so much these past few months because the vertigo attacks have destroyed my balance because of the virus.

I can only apologise if none of this makes sense, but I've shared this to build awareness on Labyrinthitis and highlight just how bad vertigo is. Not many people seem to know what vertigo is, but I'm hoping this story makes you aware of how bad vertigo is and just how important your ears are.

I miss the days where I can use headphones and just listen to music, by unfortuantely, it's difficult for me to do that now, hopefully soon with knowing it isn't Meniere's and me going back to work and getting my life back again, I can recover fully.

If you know anyone who suffers from vertigo for whatever reason, assure them that you know how difficult it is, even if you've never gone through it before. It's hard to understand how bad something is unless you've gone through it yourself, but vertigo itself is poorly understood and I've come across people who don't take it seriously, including medical professionals themselves.

Don't underestimate vertigo - it's serious and it's a very scary experience.

Thank you for reading my story.

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Sara Sousa

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Sharing stories from the heart.

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