Constant Vertigo/Dizziness – How Labyrinthitis Stopped Me In My Tracks
Constant vertigo or dizziness is a horrible thing to experience and unfortunately for me, it’s something that I’ve been living with since the beginning of March last year. Now, this might seem like an unusual thing to write about on a skincare website but it’s such a horrific experience that I really felt the need to share it. This is also the first time I’ve been able to write a post since getting this so it made sense that this should be the subject even if it is completely off topic especially if it can help anyone else going through the same thing.
I remember the exact day it started because it was one of the scariest things I’ve ever experienced particularly because it came on so suddenly. It all started at the beginning of March 2017, I had felt fine all morning but after lunch, I started to feel a bit nauseous, achy muscles and a little bit dizzy. This got me quite worked up because the whole house had already suffered from 4 really bad bouts of the vomiting bug over the course of the three months previous.
My first thought was oh no I can’t be dealing with the vomiting bug again for the fifth time but within an hour a new symptom occurred and that was the sensation that everything around me was spinning. Shortly after, my husband left the house to go collect the kids from school and this is when things took a turn for the worst. Hello and welcome to my very first full-on panic attack.
Panic Stations!
Within moments of him leaving the house, the spinning became so severe that I felt like I was about to blackout so with that I immediately lay down across the sofa but the sensation just continued to get worse. By now my temperature felt like it had gone through the roof and my heart was starting to beat so rapidly and loudly that it felt like my entire body was beating.
What quickly followed was the sensation of numbness in my hands and feet that very quickly started to spread up into my legs, arms, and face. At this point, I was struggling to catch my breath and started to believe that I couldn’t breathe. Now I was petrified and believed that I needed urgent medical attention because I was either having a stroke or a heart attack.
Now this entire episode of panic only lasted about 15/20 minutes but it felt like much longer while I was experiencing it. I continually told myself to calm down, get a grip and take big deep breaths. I’m only in my thirties and I’m in pretty good shape with no health issues so surely I wasn’t having this medical emergency that I was panicking about (not that this type of thing doesn’t happen to people in the thirties but I was trying to convince myself otherwise). There was also the fact that I was alone in the house while this was happening so that was probably part of the reason for the panic.
What’s Wrong With Me……
Once my husband got back, the panic very quickly went away, as did my need for urgent medical attention. I was now trying to self-diagnose myself but this was mainly in an effort to keep myself calm by convincing myself it was only something minor. I decided that what I was feeling was very similar to a full-on bedridden flu (although I’ve never experienced the flu come on that suddenly). I also had immense pressure in my ears and told myself that it was very likely some sort of ear infection although the speed at which these symptoms came on still had me somewhat nervous.
By the way, several months later when I was researching more into labyrinthitis I discovered that it’s actually very common for people to rush off to the emergency room when they first get labyrinthitis because it’s so frightening that they too, much like myself, believe they are having some sort of stroke or something else just as serious.
The next 4 days were spent bedridden consuming every over the counter flu medication that’s known to man. I could barely stand up let alone walk and any time I did try to walk, I found myself either feeling as though I was about to pass out or severely veering over to one side so I had to lean against the walls just to get from A to B. It felt like I was very, very drunk and although that may not sound too bad to some people, feeling drunk when you’re not is so not fun especially when the sensation doesn’t go away the following morning.
Off To The Docs
Once I felt capable of sitting in the doctor’s waiting room (so unpleasant when the whole room is spinning), I decided to pay her a visit to help get rid of this thing as the over the counter medication just wasn’t cutting it. I ended up seeing a trainee doctor as my own was away on holiday and she very quickly suggested an ear infection and sent me on my way empty-handed and told me to continue with the otc medicine and let it runs its course.
After several weeks with very little improvement, I decided to go back and see my actual doctor who within minutes had me doing all sorts of weird maneuvers around her office. She immediately suspected labyrinthitis but sent me off to the acute assessment unit of the local hospital to make sure there was nothing more untoward going on. So after several hours of tests, a brain scan, blood tests, an EKG and a chest x-ray, they too came back with a diagnosis of labyrinthitis.
Unfortunately yet again I was sent home empty-handed and was told to take paracetamol and let it run its course which by the way could take anywhere from six to twelve weeks!!! This was not what I wanted to hear because after just three weeks of it, I was pretty much ready to jump off a ledge so all I could do was just wish and pray that I would be one of the lucky ones who would fully recover by the six-week mark.
Several Months On
Well, that 12-week mark passed and I still didn’t feel any better. By this point, I was now suffering from severe anxiety which is also a common side effect (I’ll tell you more about that further down) and was now worried that I was never going to get better and that life would never return to normal again.
My weight had plummeted dramatically from 8 and a half stone (118 pounds) to 6 and a half stone (90 pounds) in a very short period of time which resulted in blood tests to check my thyroid and another trip to the acute assessment unit whom still suspected labyrinthitis but referred me to a gastroenterologist anyway to investigate the weight loss. That actually ended up with me having to have a colonoscopy which by the way was such an unpleasant experience that I may just have to write a whole other post about that too (I’m already way off the topic of skincare anyway with this post so I might as well).
The Visits Continue
The doctor visits continued and it wasn’t until I reached the 6-month mark that my doctor finally gave me some prescribed medication for the vertigo which did help a little (8mg serc which was then changed to 16 mg) and also referred me to ENT.
Unfortunately, where I live, the current waiting time just to get the first consultation is around 18 months so with me being 13 months into this now, I guess I’ve got about another year to wait before I’m even looked at (I know, it’s disgraceful). And if the ENT specialist then feels like I need to see a Neurologist, then that would be about another 2-year wait for a consultation so let’s hope that’s not the case.
I was also sent to a physiotherapist who had an “interest” in vestibular disorders (no specialists where I live) and knew a few VRT (vestibular rehabilitation therapy) exercises that I could try. They’re not the most pleasant because they make you feel even dizzier but that’s the point in them, to eventually help the brain slowly compensate for the imbalance. They do eventually help in the long run if you can bring yourself to do them which unfortunately is easier said than done.
The Worst Part – Anxiety
As I mentioned above, there’s one major side effect of this disorder that actually becomes an even bigger problem than the ailment you started out with and that is the most horrific anxiety I’ve ever experienced. When I say anxiety, I’m not talking about regular day to day type anxiety like the kind you get before a driving test or a job interview, this is an extremely fearful almost panic like sensation about your medical well being and the constant fear that something serious is about to happen to you that requires urgent medical attention.
You basically become a complete hypochondriac of epic proportions and convince yourself that these sensations are caused by something immediately life-threatening. Also because part of the sensation is so similar to the onset of passing out, you remain in this constant on edge state thinking that you’re going to black out at any minute.
If you happen to be alone for long periods of time during the day (like myself – husband at work and kids at school) then this is a very difficult thing to deal with because you start to worry that something is going to happen to you while everyone is out and that there’ll be no one around to help you. It sounds completely ridiculous and insane but it really is that severe to the point that I would purposely leave the front door unlocked so that if anything bad did happen, I’d be more likely to get outside in time to find a neighbor to help me, I mean seriously what rational human being even thinks this way.
How Crazy It Gets
You become so afraid to do anything even the most basic of daily tasks like housework or even taking a shower (no seriously). Up until recently, showers were an evening occurrence only once everybody was home just in case I had any problems. I don’t know what it is about showers, whether it’s the noise, the heat, the steam, the standing up for too long or maybe the constant turning around but it seemed to trigger my vertigo every time to the point where I dreaded them.
It may also have something to do with the fact that you’re naked so if something serious did happen, the chances of you getting dressed and getting out the door quick enough to alert somebody would be slim to none (wow, just writing that last line, I realised how crazy that was to be thinking that way about a simple shower).
If you’ve ever passed out then you’ll know what an awful feeling it is and the fear it causes about your overall health so living with that sensation on a permanent basis is pretty much like mental torture. The whole experience became very upsetting because I would find myself looking out the window at the elderly neighbors mowing their lawn and think wow, I’m only in my thirties and I can’t even pick up a sweeping brush for fear of keeling over.
Leaving The House Period
Here’s an idea of some of the most basic tasks that become problematic. Driving is an absolute no-no for obvious reasons but walking anywhere is a chore. I have to walk my kids to school in the mornings and pick them up again in the afternoons and up until recently, I used to struggle to walk in a straight line and I’d often become fearful that I might pass out in the middle of the street. It’s only 10 minutes away but the further away I would get from the house the more the fear would kick in so I would literally have to talk myself down all the way there and all the way back. Some days were so bad that I literally couldn’t get the kids to school.
Going to the shops (well, going anywhere at all for that matter) is just as exciting mainly for the same reason I mentioned above which is the fear of passing out or worse. There’s something about the lighting, too many people, too much open space that seems to trigger the spinning and you can pretty much forget about queuing. If walking anywhere wasn’t bad enough, when you come to a complete standstill like when you have to queue, things then get really intense and if you’re standing in one spot for more than a few seconds then you’re pretty much ready to drop.
The Most Day To Day Things Are Affected
Even going to the hairdresser became a traumatic experience. There’s something about being trapped somewhere that brings on a full freak out attack. I’ve had my hair coloured 3 times in the last year and every time, the second he puts that bleach on my hair and I realise I can’t get up and walk away if I start to feel off, I pretty much have a complete panic meltdown and an “I think I’m gonna pass out” episode.
So pretty much leaving the house period is a problem which then turns you into a complete and utter recluse although as mentioned above, being alone in the house is just as scary. If you’re a gym goer, you can pretty scratch that idea too, I know I’ve attempted it a handful of times and I’d be lucky to cope for more than a few minutes without having an episode. I’m just glad that I’m a housewife because I couldn’t even imagine trying to go to work with this.
Oh and I almost forget, even in the house, simple things like reading a book or watching tv. You can’t watch anything on tv that’s too bright, fast moving, flashing, spinning etc and forget about looking at your pc or laptop. Between the bright white screen and the scrolling up and down, it will literally be seconds before your eyes are rolling to the back of your head. My poor website has been neglected for a year because I haven’t been able to write a single post so writing this one has actually been a very gratifying process and a testament to how much better I’m finally starting to feel (although if there are tons of grammatical errors then I apologise in advance and hope you understand why).
By the way, there is an excellent article on vestibular.org about the phycological effects a vestibular disorder can have on someone’s mental health (anxiety, panic, why and how the disorder is causing it) and how it can make the disorder even harder to deal with. It’s well worth the read and actually makes you feel somewhat better about what you’re going through.
The Recovery Process
To be honest, time is probably the biggest healer and at this point, I would probably put myself at around 70 percent better. I still have bad days particularly just before, during and just after my monthly cycle or if I even get a hint of the sniffles but nothing like I described above. I did, however, realise something a few months ago that my doctor completely agreed with.
As time went on, my issue became much more about the anxiety rather than the labyrinthitis that started it all. Like she pointed out to me, anxiety makes any physical symptoms you’re going through much worse so even though the labyrinthitis caused the anxiety in the first place, the anxiety to some extent was probably now affecting the severity of the labyrinthitis symptoms.
Fixing The Anxiety
Fixing the anxiety became my main focus because the doctor’s words made a lot of sense particularly with regards to the way I’d felt during the last 6 months. In the beginning, I felt bad most of the time regardless of where I was or who I was with but in the more recent months, I would tend to feel worse at certain times like during the day when I was alone or in certain places like anytime I left the house.
As soon as those situations were over, 90% of the time I almost always felt better or at the very least not as bad so when I made that realisation and really thought about that, it made me wonder where I’d be if I could get the anxiety under control and at what point did the anxiety take the front seat over the labyrinthitis.
She didn’t think anxiety medication was a good idea unless all else failed and so wanted me to try other options first like therapy which I completely agreed with. She encouraged me to try online CBT (Cognitive Behaviour Therapy – another service not available where I live, I literally live out in the sticks) and gave me a few suggestions. I started with a free site which I found really helpful although I did hit a plateau and needed to move on to something that was not so generalised but to begin with, this site was very helpful, www.getselfhelp.co.uk//step1
Online CBT
My doctor suggested I try one of two paid sites, a British site called Beating the Blues and a very popular Australian site called MoodGym. In the end, I went for MoodGym basically because it was the cheapest (€30 roughly for a year) and I have to say that it was a godsend. It really teaches you how to deal with those horrible thoughts and to eventually train your brain to stop thinking that way. I’m still using it and sure enough, as the anxiety has improved so has the severity of the vertigo/dizziness symptoms. Don’t get me wrong, it’s not a be all cure because there’s a real physical ailment there that tends to start these thoughts off in the first place but if you can tackle the anxiety, then the labyrinthitis becomes much easier and less frightening to deal with it.
It was also suggested that I increase my Magnesium and B Vitamin intake as both of these are suggested to help with anxiety. Magnesium also helps with migraines so if there was any other ailment there like MAV (Migraine Associated Vertigo) this would help that too. The problem with vestibular disorders is that there are quite a few of them but their symptoms are all very similar so until I see a specialist (at this rate, I’ll probably be fully recovered by that point), labyrinthitis is the diagnosis but in theory, I could very well have one of the others.
Where I Am Today
The bad days have become fewer and further between although I do still keep a supply of the decongestant Sudafed to hand for those days when all else fails (which isn’t that often anymore) and that really helps. So between the CBT, the VRT and basically a whole lot of time, slowly but surely things are improving and compared to where I was 6 months ago I feel a hell of a lot better. It actually amazes me how much this condition affected my mental wellbeing and to be honest, turned me into a complete crazy person.
One other thing that really helped me get through this was reading the stories of other people who were going through exactly the same thing and realising that I wasn’t the only one. It’s actually quite a lonely ailment to have because you really don’t look particularly sick so people around you often struggle to understand the extent of what you’re going through. So with that in mind, if you’re currently going through this or have ever been through this in the past, I would love to hear your stories so please feel free to share them in the comments section below.
