Bittersweet victory

This blog post has been 15 years in the making, almost half my lifetime. If you're thinking we didn't really have the internet and blogs back then, you'd be right. It's not that I've been writing this post since then, but the events detailed here have taken this long.

Trust me I'm a doctor

If you take two things from this post, morals if you will, they are these: never taken a doctor's word as gospel and the things you thought you knew change on you. This post will be of interest to anyone who feels disappointed, short-changed or unsure after an appointment with a doctor. I too often accepted a diagnosis from a doctor, even when it didn't feel right. I have a problem with authority figures, underneath I see them as humans, just as fallible as the rest of us, but I always quail before them. Carefully rehearsed speeches go out the window when I enter their office. So I quietly defy them in that I do my research afterwards and thank goodness for that or I wouldn't be where I am today. The registrar wrote me off yesterday; it was my last appointment with him and I'm now in the hands of the physios. In the nicest possible way, he hopes to never see me again and I couldn't agree more. My Mum got a bit teary as this has been years in coming and she praised me for sticking with it, holding my ground and forcing the doctors' hands. I just see it as coming down to a mixture of desperation and stubbornness, but there must have been some self-belief in there too. The victory is bittersweet for me because of the time it's taken, the toll it's taken and the things I've missed out on because of it. But finally, it's at an end. I'll take you down the only road I've ever been down.

One word of warning: I've always been open and honest about things, so here's me being open and honest about my health and if it helps one person either understand me or themselves better, then this post has done its job. So if you ever wondered about me, my clumsiness, vagueness and my anxiety, or your own clumsiness and dizziness, then read on.

Have you ever felt dizzy with no apparent cause? Does vertigo plague your life that can't be put down to anything else? Do you get anxious for no particular reason? That's been my life ever since I was 16, when I started to have attacks of vertigo that came out of the blue, that incapacitated me so I can't lie down without making it worse, I can't walk in a straight line and I can only find one position when the room isn't spinning: half sitting and half lying down in a weird position. These attacks steadily got worse and more frequent. They lasted one or two days and knocked my energy for longer. A common misconception is that vertigo is the fear of heights, but that's acrophobia. Vertigo is one of the symptoms of acrophobia, like when you look down at the world far below and everything starts spinning, that's vertigo. It feels like a combination of being drunk without the good bits and the worst hangover of your life. Some car journeys, especially those along winding country roads, can feel like a rollercoaster. General day to day life is made harder, particularly with concentration levels and my energy is sapped quicker.

Vertigo

Over the years, I've been diagnosed with many different things, as the symptoms got worse. First a GP diagnosed me with labyrinthitis and was given tablets, but when I went to see a specialist, they told me it couldn't be labyrinthitis because the vertigo didn't last long enough. Then I got diagnosed with migraines, but the next specialist palmed me off with tablets which gave me distressing side effects. So I stopped taking them, plus I didn't think it was migraines as I didn't get headaches or any other symptoms apart from the vertigo. Then after a particularly bad bout, I was told it was Menieres and that there was nothing that could be done. I couldn't accept that and researched it. I'm stubborn and curious, a bad combination most of the time but not with this and it was just as well I am. One of the firm symptoms is hearing loss, so I went and got a hearing test. You can get a test done for free from Boots, but you have to pay for a copy of the results. So I went back to the doctor, again being referred by my GP and was told it couldn't be Menieres as I would have hearing loss if I was experiencing vertigo. My hearing is actually better than average and one good thing that has come out of this protracted diagnosis is I've discovered why I am so acutely sensitive to high pitched sounds like cutlery, because I hear it louder! The amount of doctors I've seen, pills I've taken and shouldn't have and diagnoses I've been given is depressing. Anyway, after a few simple balance tests last November, I received the diagnosis I had been waiting for: a correct diagnosis at last. I have vestibular damage to my right balance organ.

No one knows why it happened; it could've been a blow to the head, lack of blood flow or a virus, which is the most probable. But suddenly my life made sense, why I'm clumsy and am always bumping into things, why I can't walk in a straight line in the dark, why I have difficulty travelling and always get car sick. The attacks of vertigo over the years were the organ gradually degrading. It was a confusing but enlightening time for me. I was a gymnast, I've even got a certificate to prove I could do a cartwheel across a beam, so why did I suddenly have no balance? As the attacks of vertigo only happened once in a blue moon, I never connected the two until much later.

Blue moon

However after this epiphany moment, I received no more help; I just had to live with it. The only suggestion was to exercise, maybe do some martial arts. I exercise every day and I tried to do some martial arts, but it was impossible, because I couldn't balance. But like the passive, non-confrontational and introverted person I am, I let it slide and just carried on regardless. Until a heavy head cold knocked me sideways and I had to go on heavy duty motion sickness medication to even function. I wasn't going to take medication if I could help it, so I forced an appointment with a specialist and finally found a doctor who not only listened to me, but gave me time. He was as determined as I was to get to the bottom of it. From this point on, I couldn't fault Addenbrooke's Hospital or the NHS; they have been brilliant. After years of suffering, just living with it and getting on with things, I've finally been told the definitive cause, well, two causes: BPPV and a damaged balance organ on the right-hand side. The BPPV is easily fixed though.

BPPV stands for Benign Paroxysmal Positional Vertigo. It's basically where calcium deposits in the brain are dislodged and float around where they shouldn't be. The fix is a series of nauseating and mildly painful head manoeuvres to move them back. BPPV causes positional vertigo, which means vertigo if you look up or down, or hold your head in a certain way and if you roll over, or if you do anything with your head too quickly. It blighted my sleep as I toss and turn a lot in bed. So whenever I rolled over from left to right, I'd wake up or sleep more shallowly because of the vertigo. to be fair to the doctors, mine was very subtle and it's not surprising that they missed the eye movements that they look for by hanging my head over the edge of a bed.

They did quite a few tests, including an MRI of my head to rule out anything sinister, pumping my ears with water which was horrible, tracking my eye movements with funky knightrider glasses and balance tests. As for the damaged balance organ, it is very weak and may yet get worse, nothing is certain with this. I've lost 77% and it means I'm permanently off kilter and unbalanced. This may seem very very bad, but apparently like you can live with just one kidney or just one lung, you can live with just one balance organ. You just have to retrain your brain and reset your balance. So I'm seeing a physio and hopefully I will have my equilibrium back. My body grounding itself and my sight, they are as much balance organs as the balance organ. I know everyone gets motion sickness to some degree, anyone who has tried to navigate around their own house in the dark or rides rollercoasters for instance, knows what I'm talking about. My body gets royally confused and takes ages to reset itself. The symptoms may wear off for you after 10 minutes or so, but for me, it could be days. After long car journeys, I've lost a day before due to not being able to sleep because even with the light on, the room starts spinning the second I close my eyes and with no sleep, the next day is shot. Your balance comes from three things: your eyes and brain, your body and your balance organs. With one of them out of action, I only have my eyes and body. When either of those are compromised, I'm screwed. So if it's dark, if there's a disconnect between my body and eyes like when I'm travelling or even in crowds and everything is moving so fast around me, that's why I get the vertigo.

Here's a rollercoaster I can't believe I went on: the Dragon Khan at Portaventura, Barcelona

Lastly, I've written about this before, written about it on this blog before, but for the same amount of time as I've been living with vertigo, I've been living with anxiety and panic attacks. I always thought that the vertigo was a symptom of my anxiety and it can be. But it turns out, while it doesn't help as hyperventilation and irregular breathing can make your head swim, tense your body up and cause dizziness, the anxiety can also easily simply be a symptom of my balance problems. If the world feels off kilter, if you're permanently off balance, if you have no equilibrium, then of course you're going to feel anxious. And anything that exacerbates the symptoms would make you feel anxious, like public speaking when you have stand up for a while, often higher up than everyone else, like travelling and like socialising. I always thought that the anxiety caused my physical symptoms, racing heart rate, sweating and yes dizziness, but it seems too much of a coincidence as the anxiety and vertigo attacks started around the same time, that they are completely connected. My anxiety has a physical cause and if I can get my equilibrium back, maybe I can live anxiety-free. But that's a false hope as it's been too long and my body has got used to being anxious. If I get stressed or excited, by going on a rollercoaster for instance, which I wouldn't do anymore anyway because of my balance problems, but I would get the same symptoms as anxiety and it would bring on a panic attack as the increased adrenaline is now a signal that my body takes to induce a panic attack. So there are certain things I have to be careful of doing now. I even had to leave Centre Court at Wimbledon when I was there for the London 2012 Olympics because the excitement at just being at a place I had longed to go to ever since I was a kid became too much and it induced a panic attack. Stupid, right?

Me at Wimbledon Centre Court

My body has been doing a good job over the years of compensating, of living with the low grade nausea, of the world whirling around me. It never ceases to amaze me how adaptable the body is. But it also means I have many habits to break that I have built up over the years to cope with it all, some may be too ingrained to change, but we'll see. The physio has already identified a few bodily and posture problems. She has given me the exercises to reorientate myself, to allow my brain to get used to having only one balance organ. It's the only treatment. But she's also given me exercises to help realign my knees. I felt like a fraud in the gym at the hospital as there was a guy in there with an obvious brain injury just trying to get his limbs moving again, so I have him in mind the next time I feel too tired and want to shirk doing my exercises. I have a long body and short legs and I hunch over, not from being lazy, but because I'm trying to lower my centre of gravity to help me balance, or at least that's what I tell my Mum now after her years of nagging me to sit up straight! I also can't stand up for too long and when I do, I put my knees together for support, I even cycle like that. This has weakened my knees and I could start having problems in 10-15 years and even with my hips if I keep cycling the way I do. The impact that this has had on my body and mind is incredible. It will be interesting to see which things are genuine causes of anxiety and which are generated by the vertigo. It will be a journey of discovery, but one I'm more than happy to embark on. I'm determined to get over the anxiety if I can, to sit up straighter and to live my life more. Battling the balance problems took a lot of energy, so here's hoping I have more to play with! Most importantly, I have an answer, a reason and explanation for something that blighted my life for far too long and this bittersweet victory is all mine. I can change.

If any of this seems vaguely familiar to you, any of the symptoms, then read on.

BPPV symptoms

Does your Mum always tell you off for not sitting up straight? It may not be laziness, but because it isn't comfortable dizziness-wise. Having your head at a weird angle may help and you may be doing it unconsciously like I have.

Have you always thought you have low blood pressure, even though you've had it checked and it was fine? Do you find it difficult to stand up for too long, feel dizzy after standing or sitting up too quickly and get head rushes? This may be BPPV because sudden head movements or prolonged time with your head at a certain angle can cause dizziness. You can imagine what it was like working at a computer for me. My concentration was shot!

Did you used to be a heavy sleeper, turned into a shallow sleeper and then a very light sleeper? It could be down to rolling around, tossing and turning in bed at night. This might be due to stress sure, but it could also be rolling from right to left or left to right, depending on what side these damn crystals are at. I used to wake up with vertigo, with my covers off the bed or tangled up because of it.

Vestibular damage symptoms

Do you dislike travelling, not seeing new places or holidays, just because of the travelling part? Not for the usual reasons of the time it takes, airport angst, fear of flying, traffic jams, motorways and sea sickness? When the plane banks, does it feel like you're going to pass out? Can you not look out of the side windows of a car without feeling dizzy, even on the shortest of journeys? Do busy places make you feel anxious? Anything going at speed around you, whether it's when you're on a train or in a car or people walking fast around you, anything that confuses what speed you're actually moving at can bring it on.

Have you never particularly liked theme parks or rollercoasters? Going upside down is the worst thing you can do for balance and to disrupt BPPV as well, for obvious reasons.

Have you never liked, not enclosed places or due to claustrophobia, just places you can't get out of easily like planes, lifts and caves? Banking in planes makes me feel like I'm going to pass out. Lifts make me anxious. Caves are usually dark so see below.

Are you scared of the dark, or did you not get over your childhood fear of the dark until later in life? For me it was my 20s, was this why? No light means I have no means to orientate myself. The balance organ is the only thing you can rely on in the dark and mine is compromised.

Are you clumsy, always bumping into things, falling off curbs, up stairs...? Do you have to look straight ahead when walking, can you not look down or up or side to side? I can't count how many times I've injured myself or sprained my ankle because I haven't kept my head on an even keel, I've been looking at something up in the sky, behind or around me. Of course, again, bad things happen when you're not concentrating or concentrating on something other than walking, but you don't get dizzy generally.

Are you teetotal or near enough? I never really got into alcohol, apart from a brief misguided time as a 16-17 year old. Was it because the vertigo attacks were like being drunk, but without the nice bits? Why would I induce that, make it worse?

Question these symptoms and see what you come back with. You'd be surprised how many of us are wandering around with damaged vestibular organs and/or BPPV.