Living with Labyrinthitis and Vestibular Neuritis

Read this first

This article is about my personal experiences with Labyrinthitis and Vestibular Neuritis. IT IS NOT MEDICAL ADVICE. I’m providing this account in the hope that others who experience this condition and are looking for information may find some answers from my what I went through.

Do not make any medical decisions based on this information. If you’re feeling sick, go seek professional help. If you’re feeling as sick as I was the first and second time I had had symptoms, seek professional help immediately. Labyrinthitis and Vestibular Neuritis share a lot of the symptoms of other, more serious illnesses, and it’s only through getting professional help I found out I didn’t have those problems.

TL;DR – feel sick? See a Doctor!

Sometimes, shit happens

As Mondays go, it had been a pretty good one. The day had started well, I’d got stuff done before coming into the office, and I remember the motorcycle ride into work as a particularly refreshing one. The sun was shining, the sky was blue and everything seemed to be going well.

I’d spent most of the previous weekend in bed with a nasty head cold. Not something unusual in our office, where we almost always have one or two staff down with the virus-of-the-week (air-conditioning – sometimes it’s not that great), but as luck usually has it I felt I had sufficiently recovered from the cold by Monday to go to work, and I’d felt fine all day. It therefore came as something of a shock when, at around a quarter past four that afternoon, while sitting at my desk, I turned my head to the left and started to lose consciousness.

At some point on the way to blackness, as my head and upper body started falling down, my fight-or-flight mechanism kicked in and my head jerked back upright. At this point I opened my eyes and found the entire room spinning around me. This was not good. Immediately after that I felt extremely ill, my heart started racing, and my breathing became very shallow as my body tried to work out what the hell was going wrong.

Memories of the minimal first aid training I’d done over the years chose to rise to the surface at that time, and I remembered something about asking patients who were in shock to breathe deeply to try and reduce their heart rate. So amongst the confusion I tried to take practical steps to regain control over my body by taking long, deep breaths. This actually worked pretty well.

After what seemed forever but was probably less than five minutes, the room stopped spinning and my heart rate and breathing were somewhat under control, but I was still feeling extremely ill and I’d started to shake. The spinning (vertigo) had been replaced by dizziness (a feeling of being about to fall over).

At this point I started worrying that I might not be able to ride my motorbike home (priorities, right?). So I warily pushed myself upright while supporting myself on a desk and was relieved to find that I did not pass out. So far so good.

“Maybe some fresh air would help?”, I thought to myself.

Over the next five to ten minutes I tried standing still without feeling dizzy, in several locations around the office. It turned out that I could only stand for a few seconds each time before having to grab something for support or lean against a wall. Eventually I came to the sad conclusion that things weren’t getting better, whatever it was that had just happened had left me feeling the sickest I have ever felt in my life, I wouldn’t be able to ride my motorcycle home, and I’d probably better see a doctor ASAP.

At this point, as my body was going into some form of shock, I made series of non-rational decisions, the first of which was to book an Uber to go to my GP’s office, twenty minutes away, rather than asking one of my colleagues to call an Ambulance. Considering myself to be very sick, but not Ambulance sick, I made excuses for leaving early and set out to my GP via the first available Uber. Hindsight is a wonderful teacher as long as you live long enough to learn from it.

Roughly twenty minutes later I walked very unsteadily into my GP’s office and asked to see “the first available Doctor”. This turned out to be 1 ½ hours later, which I spent sitting in an uncomfortable waiting chair, fighting down waves of panic each time I had flashbacks to the initial vertigo. By the time my name was finally called I was tight in the chest from sitting in the waiting chair, was still shaking uncontrollably, and was fighting a constant battle to keep my breathing and heart rate down each time the waves of dizziness hit.

The Doctor, who was not my normal GP, asked me a series of questions, then took me into their triage room and ran an ECG. No big deal, I’d had one of these before and I wasn’t expecting anything dramatic. My biggest concern at this stage was the continued dizziness and uncontrollable shaking (did I mention I think I was in shock?)

After running the ECG, the Doctor said that he’d be back shortly, so I lay there wondering what was wrong, but feeling quite relieved that I was finally getting some help. “I should have an answer and be home soon”, I thought to myself.

A couple of minutes later the Doctor re-appeared, and uttered something I don’t think I’ll forget for a long, long time:

“I’m not going to lie to you, I think you’re having a heart-attack. I’ve called an Ambulance and you’ll be going to hospital.”

Well shit. I knew I was feeling sick, but not THAT SICK.

It wasn’t until the doors shut on the Ambulance, with me as the patient on the stretcher inside, that I finally realised that things must be pretty damn serious.

Shit had just happened.

TL;DR – a Labyrinthitis or Vestibular Neuritis attack comes without warning.

TL;DR 2 – the symptoms of a Labyrinthitis or Vestibular Neuritis attack can look a lot like a heart-attack.

Ambulance Number 1

Most of the ambulance ride passed in a blur as I tried to deal with reality of where I suddenly found myself. This section is really just some interesting observations for people who might find themselves conscious in the back of an Australian Ambulance.

• The Paramedics ask lots of questions. A lot of them are pretty morbid – e.g. “Any incidence of sudden-heart-attack-death-syndrome in your family?” Try to help them fill out the paperwork. They’re just doing their job.
• If you’re in Queensland and your condition allows a choice, they’ll ask if you want to go to a Public or Private Hospital. Based on my personal experience of going to the nearest Public Hospital, I’d say that, if you can afford it, go Private.
• Bear in mind they ask questions that you’re expected to give rational answers to, at the exact time you’re in the least rational state of mind. An unfortunate part of their job.
• I didn’t get the lights and sirens on the way back to the Hospital.
• Paramedics save lives every day and are real-life heroes. I don’t think there has ever been any person in history who deserves to earn more than a Paramedic.

When I was a kid I used to watch Ambulances, like other emergency service vehicles, and think they were “cool” – you know, lights! Sirens! Wow!! Being the patient in the back of one gave me a whole different perspective, and now I’m not as excited as I used to be when I see one.

TL;DR – Ambulances are not as fun as I thought they might be.

Hospitals are strange places

NOTE: This section is not actually about Labyrinthitis or Vestibular Neuritis (though some of the symptoms are covered), so if that’s what you’re here for, skip ahead to the next section, where I pick up that thread again. This section is more about what happens if you’re unfortunate enough to be admitted to Hospital with a suspected heart attack. It was an … “interesting” experience, and I decided to include it here in case others can learn from what I went through.

It turns out that once somebody made the call that I might be having a heart-attack, they made it really, really easy for me to get in to hospital, and even harder for me to get out. I’d always been under the impression that hospitals were hard to get into, and that they want you gone as soon as possible to free up the bed for someone else. It had never occurred to me before this happened that it might actually be hard to leave.

With the benefit of hindsight, it’s easy to understand. Hospitals are in the unenviable position of making life-or-death calls. When they get it right, everyone loves them and happy stories usually don’t see the light of day. When they get it wrong, the affected families and the press come after them full-force, and most people will remember the “this person died just after being discharged from hospital, how could they?” headlines when they’re scanning the news, and not the “Hospital X had this many FEWER deaths this year” type headlines. So I understand now why they make it hard to get out and go out of their way to rule out a heart attack when one or more Doctors have made that call.

I got admitted about 18:30 on a Monday night. As a heart-attack patient I got express entry through a crowded waiting room of people who I thought looked a lot sicker than me. By this stage my brain had decided that the best way to cope with my current situation was to stubbornly ignore reality and the opinion of others, and cling to the belief that I was not possibly as sick as everyone was making out (a policy my brain would stick to for the next 48 hours).

It’s incredibly disorientating to go from feeling great to feeling deathly in a fraction of a second, but I can now say from personal experience, and from reading many other people’s accounts, that this is usually how a Labyrinthitis or Vestibular Neuritis attack appears.

I spent the next six hours on a bed in the Resus Ward. This place is as scary as it sounds and is where you normally end up if you’re being brought back from the near-dead, or there’s a possibility you might be on the way there.

Resus Wards are busy places. They have a rotating staff of Doctors and Nurses, so over the next six hours I was seen by two different Doctors and many nurses, who told me that “it looks like you’ve had a heart-attack, but we’re just running some tests to make sure”.

The first test I had was a blood test to look for the presence of something called troponin. They do two tests – one at 3 hours after onset, and one at 6 hours after onset. If either of these come back positive, there’s a good chance you’ve had an attack.

During my stay in Resus I also had a chest x-ray, got put on a Potassium drip, and was constantly attached to an ECG machine and blood pressure monitor.

My bed was directly opposite the Nurses station, and on the wall behind them was a big clock, which became my focal point as I both failed to sleep and wrestled with the reality of where I was and what might be happening to me. I’m pretty sure I counted all of the hours and most of the minutes up to midnight that day (at which time I threw a small celebration in my head for not dying that day, Yay!).

Being opposite the nurses station had benefits and drawbacks. The main benefit is the distraction it offered me from my own problems. Being around other people (usually) calms me down. The main drawback is that, I couldn’t so much as scratch myself over the next 6 hours without them jumping to attention and asking if I was OK. Not much of a drawback really, but I chose not to scratch more than one itch during that time.

A phrase I heard more than once during this time was “you’re definitely being admitted”. It was spoken as if it was some sort of punishment, or something I might fight against, which I found bizarre. At that point in time I was still in shock and definitely didn’t want to be far away from medical professionals, but perhaps they encounter people who are afraid of being admitted?

At some time during my stay in Resus there was a change of Doctor, and after he’d introduced himself and brought himself up to speed with my progress he asked if I had any questions, so I said, “has there been any improvement in my ECG since the Ambulance?”.

He then had a look at the ECG from the Ambulance and compared that to my current reading. And then started looking concerned, confused, more concerned, and then quite worried.

“Something’s not right” he said. This was about exactly as reassuring to me at that time as you might guess it was. “Do you mind if I quickly check the leads?”

What? Of course not, I thought as he rushed over and started fussing over the ECG leads attached all over my chest.

“Aha! There’s the problem ….. these leads are back to front!”

The What Now??!!

It turned out that, at some stage during my transfer from Ambulance to Hospital someone had connected two of the leads in the opposite places to where they were meant to be, and nobody had noticed up until the moment I asked this Doctor. This was one of the reasons why I ended up with an extended stay – because all of the ECG monitoring prior to this point was considered untrustworthy by the supervising specialist when I got to the main ward.

Ah, I had a good laugh to myself over that one. Really.

Around midnight I was moved to the Acute Care ward. This place actually had more noise than the Resus Ward, so six more hours without sleep ensued (not that I felt like sleeping with a potential heart-attack result coming back). Around 6:30 am they came and told me that, while the blood tests had both come back negative for troponin, I was being moved to the cardiac care ward until the specialist had a chance to look at my results and decide if further testing was required.

Being admitted to the main ward also meant my condition was no longer considered immediately life threatening. This meant that things only progressed as the relevant staff or facilities became available to move me to the next step in the admission-to-release process. Shortly after being moved to the Cardiac Care ward I met the supervising Cardiac specialist Doctor, we had a brief discussion, and he said that I might be able to go home after an echo-cardiogram stress test, that was scheduled for 16:00 that day. This test, it turns out, is the last check-box in the steps towards release for cardiac patients.

This gave me something to look forward to, and I settled into focusing on that event and being released soon after. Unfortunately, what I didn’t realise at this point was that once I was admitted, I could only leave Hospital when the supervising Doctor gave their permission for me to be released.

(OK, for the sake of clarity, I know there was nothing physically stopping me from getting up and walking out the door, but discharging myself from a Hospital would invalidate my insurance, and I can’t afford those sorts of bills.)

At 16:00 I did the stress test and thought I’d passed, but at 17:00 the Nurses told me that the supervising Doctor had decided to keep me in overnight for more monitoring. This was the point when I realised I wasn’t able to go home, even though I felt up to it. It felt very strange to know my liberty was now at the discretion of someone else.

As I was the youngest person in the Cardiac Care ward, by a factor of decades, I got a lot of slightly confused, then worried, then sorry looks from other humans. So I took to wandering the wards by myself, pondering how far I could get before the alarms from the ever-present holter monitor went off, and wishing the waves of dizziness would stop. I got to read lots of literature about heart-attack symptoms and recovery. Lots and lots. I know have intensive, first-hand knowledge and experience of the symptoms of, testing for, and ruling out of, suspected heart-attack. I hope I never have cause to use that.

The hospital I got admitted to is known for specialising in Cardiac Care. While the hospital did an outstanding job of testing for and ruling out a heart-attack, they did no testing for other things that might have caused my symptoms. Every time I mentioned that I was still having dizzy spells, they’d check my blood pressure, because low-blood pressure or a pressure drop can cause you to faint, but apparently never checked for other possible causes of the same symptoms.

When I was eventually released on the Wednesday, the discharge notice put my symptoms down to “Presyncope with no cause found”. It seems that their specialisation may lead them towards seeing every admission as a cardiac issue, rather than training them to look outside that square.

When I left that hospital I wasn’t any closer to knowing what had actually happened, but I was still suffering from dizziness and blurred vision, and feeling generally unwell. At that point I think it was mostly from the lack of knowing what had actually gone wrong, and the fear of having to go through that experience again.

It was really disappointing when, ten days later, I found myself in the back of Ambulance number 2.

TL;DR – Hospitals that specialise may suffer from tunnel vision.

Ambulance Number 2

When I got released from hospital number 1, I sent a message to my work colleagues telling them where I’d been and asking for a couple of days off to catch up on some sleep and get my shit back together.

At some stage during this period I noticed the start of tinnitus in my right ear, and a feeling of fullness and aching in the ear canal.

So Friday of the same week I went back to work and tried to make out that everything was going to back to normal.

I spent most of the following weekend sleeping, then caught up with my GP on the following Monday. At this stage he still thought my symptoms were heart-related, and lined up a series of associated tests, including a referral to a Cardiologist. He didn’t mention Labyrinthitis or Vestibular Neuritis. The one thing helpful thing he did say was, if I ever felt that way again, call an Ambulance instead of an Uber, then lie down and wait for them to arrive.

By Wednesday I thought I was feeling well enough to join a colleague for lunch. Until I stood up.

From the time I started walking I was feeling dizzy, and the further we walked the worse I felt. By the time we got to the restaurant I was having to work hard to keep the dizziness and my heart rate down. We managed to order, and over the next twenty minutes while we were waiting for food I fought a losing battle to keep my heart rate and dizziness at bay. By the time the food I arrived I finally admitted defeat and asked my colleague to call an Ambulance.

At this point I followed the advice of my GP, and stumbled outside and found a place to lay down. This is meant to allow blood to flow to your head and reduce the chances of passing out. Similar to the first attack, the symptoms were:

• Shortness of breath
• Racing heart rate
• Extreme dizziness
• Inability to walk unaided
• Uncontrollable shaking

All of these symptoms were probably exacerbated by the realisation that, despite my best mind-over-matter attempts, here I was going through the same thing a second time.

The paramedic that treated me assumed I was having a panic attack, and it took some convincing to tell him that I’d spent two days in hospital for the same symptoms just recently. Eventually we set off for a twenty minute ride to Hospital Number 2, with me in the back of my Ambulance Number 2. This time, I was vertical, and the conversation was far less morbid than last time.

As I was conscious and knew some of the questions by now, I chose this time to go to a Private Hospital. By the time we got to the hospital I was feeling much better, I’d had a good old chat with the paramedic, and after he parked he came around, opened my door, and walked away, assuming I’d be fine to walk unaided.

I took two steps down onto the ground, tried to stand up straight, and quickly realised I still couldn’t walk. The paramedic was kind of embarrassed when he got to the Hospital door and realised I wasn’t behind him, but he quickly came back and helped me get inside.

TL;DR – if you have these symptoms, call an Ambulance.

It’s not a tumour!

Hospital number 2 was a vastly different experience to hospital number 1. After getting the results of my blood tests (nothing abnormal) the Doctor who was seeing me put me through a series of balance and eye-tracking tests, and then told me that he thought I had symptoms of both Labyrinthitis and Vestibular Neuritis, and explained what they were. It was a great relief to feel that I might be closer to the reason for my ongoing dizziness.

“I’m not going to let you go though until we get a CT Brain Scan, just in case it’s a tumour”.

The next thing that came into my mind was the voice of Arnold Schwarzenegger saying, “IT’S NOT A TUMOUR!”.

Humour. The best medicine.

Luckily, that scan came back clear. I was then given an intra-muscular Stemetil injection to calm down my shaking, a prescription for the tablets, told to follow up with my GP and sent on my way.

Bizarrely, once I had an actual diagnosis that made some sense, my symptoms got a whole lot worse, and I spent the rest of the next week basically house bound, barely making it out of bed. The tinnitus in the affected ear increased in volume and frequency, and I regularly had sharp pain in the ear canal.

I suspect a lot of the dizziness I was experiencing at this stage was caused by being on Stemetil three times a day, which also had another side effect of making me very lethargic. It wasn’t until I started to wean myself off this drug that I really started making progress in my recovery.

Specialists, then more specialists

Once my GP got the results from my second hospital visit, I started on the process of treatment for Labyrinthitis and Vestibular Neuritis. My GP told me that “the symptoms should gradually go away and you should start feeling better in a couple of weeks”. Wrong.

For more than six weeks after the initial onset, walking on solid ground felt like walking on a trampoline, or bouncy castle. I could see the solid ground underneath and in front of me, but on each step my balance system told my body that I was bouncing up and down. It wasn’t until the seventh or eighth week that this started to gradually reduce.

It’s now more than two months since onset, and I’m only just starting to get close to feeling normal.

Since diagnosis, I have had:

• enough blood tests to feed a small family of vampires
• a CT Brain Scan
• an MRI Brain Scan
• a hearing test
• balance tests
• vision tests

and an, unrelated, meeting with a Cardiologist (who was nice enough to confirm that my heart was fine).

I am finally working with a vestibular rehabilitation physiotherapist, to get my final bits of balance recalibrated. It’s been a long, slow process, but the reality of medical care is that you only get quick service when your illness looks life threatening, so I took comfort in the fact that even though my symptoms sucked, it was better than being back in hospital, and I would eventually get better.

What medical science seems to know

This whole process has opened my eyes to how little medial science knows about the balance system.

Doctors seem to know that:

• Labyrinthitis and Vestibular Neuritis come on without warning
• They think they’re caused by a virus, but they don’t know which one
• The damage is permanent, but the brain can learn how to balance again by compensating for the lack of balance information coming from the damaged ear

but, even after a battery of tests, they can’t point to a specific cause or cure for my Labyrinthitis or Vestibular Neuritis.

I was really hoping that one of the tests would pinpoint the reason, and a Doctor would be able to say – “There! That’s what caused this! Just don’t do that again and you’ll be fine!!” Unfortunately, that’s not the case, and these disorders fall into one of those categories where medical science still doesn’t really understand what’s going on.

These disorders can strike anyone, of any age, at any time. There’s nothing you can do to prevent getting this, and from what I’ve read and experienced the only path to recovery is physical rehabilitation. There is no “take this tablet, have a good lie down and you’ll feel better soon” solution at this stage.

It wasn’t until I met with the Ear, Nose and Throat (ENT) Specialist that I found someone who understood that this thing can take months, not days to recover from. In the meantime, I had had to take the terms I learned from the Doctor in Hospital Number 2 and consult with Doctor Internet to get more information about symptoms, recovery and treatment. So that’s why I’m writing this – to contribute to the body of knowledge on the internet and to hopefully help others understand what’s going on when you get these things.

I’ve been really fortunate to encounter a couple of specialists who’ve experienced this problem themselves. I don’t think anyone who hasn’t experienced this illness can truly understand how debilitating it first is. There are no external physical indicators that something’s wrong. It truly is “all in the brain”, yet it can totally rob you of the ability to balance (and in many people’s cases causes deafness in the affected ear).

I have explained it to people as “having to learn how to walk again”, as most of my symptoms have surfaced while walking. Even though my bone and muscle are fine, in the early weeks I didn’t have the ability to walk more than a few steps without suffering extreme dizziness.

What helped me recover?

Knowledge, exercise and sleep

I’ll state right now that the hardest thing about recovering from this disorder was having to force myself to do the very things my body and brain were screaming at me not to do. The battle for me was 60% mental and 40% physical. I’m glad I found and started vestibular rehabilitation exercises before I saw the specialists. They helped a lot.

Sleep also helps. Enormously. One of the only benefits from this experience is that I now get a lot more sleep than I used to.

So here’s a list of websites and videos that helped me understand what I was going through, how long it might take to actually recover, and how to get started while waiting to see specialists.

VEDA

This is the Vestibular Disorders Association of America website.

https://vestibular.org/

I read everything they have on that site. It’s pretty good, and I wish we had a similar organisation in Australia.

Videos by Sharon Hen

I stumbled across these videos by Sharon Hen on YouTube. She’s had a far worse experience than me and has still managed to come through intact. Her positivity is infectious and really helped me to believe that I could get better and that things could have been much worse. In particular I recommend this one about exercises

and this one about how the brain works around the nerve damage.

The House Ear Institute

This was the first rehab exercise video I stumbled across and I started doing these about a week before I added Sharon’s variations.

The Royal Victorian Eye and Ear Hospital

This is a great, one-page description of the condition that I pasted into many conversations when I was explaining to colleagues what was wrong with me.

https://www.eyeandear.org.au/page/Patients/Patient_information/Balance_Disorders/What_are_some_types_of_balance_disorders/Vestibular_neuritis_and_labyrinthitis/

What didn’t help

Of all the things I’ve tried, I think Stemetil was the least helpful. For me, the side effects were just as bad as the things it was trying to prevent. I feel I only really started to recover once I started the rehab exercises I’ve linked to above, and went off Stemetil.

Life after Labyrinthitis and Vestibular Neuritis

It’s difficult to say if one ever fully “recovers” from Labyrinthitis or Vestibular Neuritis, or if the brain simply learns how to compensate for the damaged part of the balance system, and that becomes the new “normal”. The current theory amongst the specialists I’ve met is that the brain uses Neuroplasticity to work around the damaged pathways and/or to compensate for the altered information coming from the damaged areas of the vestibular system.

My recovery was not linear – I had three relapses during my recovery, but the space between relapses got longer each time. The third relapse coincided with a head cold. During this incident I had a couple of seconds of room-spinning vertigo while sitting at my desk, but I’m happy to say that instead of getting worse, my brain processed and understood what was going on, and I didn’t get an increase in dizziness after that event.

After two and a half months, I’ve progressed from being in hospital contemplating death, to being back at work fulltime, being able to walk around with almost no symptoms, and to reclaiming most of the parts of “normal” life I had before.

While I wouldn’t wish this disorder on anyone, I have come out of the experience with a lot more empathy for others who have disorders that have no external indicators, and for the hard work performed each day by those in the medical profession. We’ve still got a long way to go to understand all parts of the human body, and I salute all those who work toward this goal.

If you have any questions about what I experienced, please ask in the comments below. I’ll do my best to reply.

Cheers,

Malcolm.