My story started a very long time ago. Pull up a chair. I was a child of about 8, and every year a visiting fairground would come to our town.
I was taken onto rides such as the big wheel or the carousel and after only a couple of revolutions I was screaming to be taken off. I remember more than once a ride being stopped to let off the severely distressed mini me. I would feel disorientated, sick, and much disequilibrium. The same would happen on car journeys. After only 2 miles I’d become hot and bothered. I’d go red and disorientated and feel extremely sick. This happened all the way through my childhood until efforts were made for me to avoid travelling and fair grounds. It was strange seeing other kids enjoying ‘fun’ rides whilst I found them a nightmare. They were obviously triggering a mav experience which I wouldn’t have known about when young. My caregivers were great and had me down as a sensitive soul so allowed me to swerve things that set me off.
The travel sickness abated somewhat in my teens but the fairground problem didn’t. I once went to Blackpool on a school trip and went on a couple of rides and was set off again. So I sat the rest out.
In my 20s, the beat went on. But a new development occurred. I noticed that every time I went in a large shop or mall, I’d become dizzy and disorientated, feeling like I was going to pass out. I’ve never fainted in my life but it felt that way. I didn’t know it at the time but I was being triggered by the florescent lights in these places. So I went to see my gp who said it was probably anxiety and agoraphobia. He sent me to see a CBT therapist who was very helpful and yes, I’d had the symptoms of anxiety BUT as a result of the mav related disequilibrium. That was never discovered by the CBT bloke or myself and I began voraciously reading all I could about anxiety. Not knowing at the time that anxiety was a symptom rather than the problem. It usually is.
My 20s and 30s were years of avoidance. The floor of a plane or ferry is very similar to a panic attack in full flood so I avoided those forms of transport resulting in my driving extraordinary distances to Italy and Spain for holidays (as I still do).
In my late 20s I experienced my first ocular migraine and thought I was going blind. All the (now) familiar symptoms of blind spot and travelling zig-zag lines etc. I was frightened to death at the time and this exacerbated my anxiety no end. Phone calls to at least five opticians eventually managed to calm me down.
So avoidance and (sometimes) bravery went on for a great many years. I felt it was just anxiety and that I’d been afraid of living. This state had and has accompanied me forever and become gradually worse.
My initial misdiagnosis of anxiety (25 years ago) led me into retraining as a counsellor, a job which I still do. I’d learnt so much about anxiety and addiction that I thought I’d help others too. This is sublimation and projection but it works. But the problem never really was anxiety. I changed my entire life around by being led up the wrong path. Trained at huge expense and now at 53 I’m in a role that I never intended. In my 20s and 30s I was also drinking too much in order to self medicate the condition which again, I took to be anxiety. The alcohol did ameliorate the anxiety but I gave that up 15 years ago as I felt a growing addiction may occur.
I’m my late 40s I had a shocking experience that eventually led me to a MAV diagnosis.
I’d had a bad cold and blocked nose and was using Vicks Sinex Nasal Spray to clear it. That stuff becomes addictive in the sense that you come to rely on it for clear breathing as one might come to rely on cocaine for confidence.
Anyway, I’d had my cold and was walking through town when I suddenly felt myself being pulled to the ground! A strange force almost pushed me down and I was certain it was a stroke or that death had come upon me.
I retained consciousness and all my faculties seemed intact and after a couple of minutes I was up and walking away from the scene of my demise. This being Blackpool, nobody noticed so I walked away confused.
As most of you can imagine, this set me off on a huge quest for knowledge about what had happened. I ruled out the possibility of a stroke, as did an ENT at the local hospital who saw me. There were some symptoms after this drop attack such as derealisation and mini room spins and an increase in ocular migraines. So I researched and researched and found the labyrinthitis site and many good things on YouTube. The ENT also said it probably wasn’t labs and my own gp said it was probably just anxiety or bppv.
I still had the disequilibrium going into places like The Trafford Centre (mall) and driving seemed to become a part time nightmare, as did walking.
At that time (2014) I was a part time musician and lost my job because I could no longer tolerate the sound and lights on stage. They obviously made me worse. This cost me thousands in lost income. But my other job as a counsellor is sedate and none threatening to the vestibular system.
I bought Migralens glasses and tried some home VRT interventions. My anxiety grew and my life became smaller. It was already quite restricted anyway but I did what I could. I learned to live with it.
Fast forward (or potter forward) to 2018 and I’m on a training course in Manchester in June. By this time I’d become very knowledgeable about the vestibular system and knew myself that I had mav, although I’d also toyed with the idea of simple epileptic seizures and a host of other diagnoses. But mav was and still is the favourite port of distress.
So, on my course I went into a toilet and felt a room spin. Nothing unusual there, but it disorientated me and I’d been relatively happy until that point. I’ve had many symptom free months over the years and done many things I’ve enjoyed.
The whole of summer 2018 I spent with bad walking, my wife or daughter having to accompany me everywhere like a cripple. I went funny one day on Blackpool Promenade and had to continue the journey walking near a fence lest I fell. I also had many MDDS symptoms like the moving floor and the internal movement you can feel or being pulled into your bed. Awful. I covered it up at work because there’s always someone who will stab you in the back and take your business.
I also read with great interest a website by Mr Lexy about meniere’s disease. If anyone would like to know my symptoms, they’re ALL listed on his site as the secondary symptoms of meniere’s disease. Every one of them.
So after a summer of discontent I saw the esteemed Dr Surenthiran in Kent, who diagnosed me with “migraine variant balance disorder”, did a battery of tests, and this placated my woe. I remember walking to his clinic arm in arm with my wife, not confident enough to walk alone. At last, I received the diagnosis I’d suspected for so long and Dr S confirmed all my suspicions. It was a relief. He suggested I take Amitriptaline and maybe Nort and I went to see my own gp in regards to a prescription. I have not taken any medications. As far as I can tell, vestibular and migraine meds are like antidepressants… Very trial and error. I looked at, and have taken, butterbur, feverfew, B12 (which makes me feel worse), Magnesium, and COq10 which gives me energy.
As I said, the secondary meniere’s symptoms on Mr Lexys site are all mine but they come and go. A moving door can set off a short episode of instability. Rain on a windscreen the same. Stress. Sleeplessness. A trip to a mall is a nightmare. Street lighting the same.
My energy is nothing like it used to be. The worse thing about this illness (apart from the symptoms themselves) is the inability to make plans. Some nights I’ll feel great and then arrange to see someone or do something, then feel completely broken when the day arrives. Then anxiety and low mood step in. Anxiety is always waiting in the wings.
At 53, middle aged, wanting to engage in life but knowing there’s only so much I can do is very difficult.
I didn’t want my life to be this way. It’s like a half life… Not really living. I’ve designed my life around my condition and am fortunate enough to have great support from my wife and daughter who understand. But this is living within confines of an ailment. I know a lot of people do that but it’s not living life to the full. It’s like walking round with a bomb in your pocket and not knowing when it might explode. I want to do this, I want to do that, but find myself lying in bed and dragging myself to work then trying to act normal. That’s about it.
In total, I’ve seen 2 ENTs, Dr Surenthiran the renowned neuro-otologist, and my own and other gps numerous times.
I’ve had a vast array of blood tests, imagining I have everything from diabetes to chronic fatigue (which may well be true) and all bloods are clear and normal, as is blood pressure. I don’t drink alcohol or smoke or take any drugs of any kind and never have. Basically a clean but troubled life. The luck or bad luck of the draw.
Remaining main symptoms that come and go… One sided headaches if I sleep more than 7 hours, feeling like I might faint but don’t. Derealisation. Room spins. Light sensitivity. Disequilibrium. Extreme fatigue. Anxiety.
All to do with the brain stem and the spasm it experiences during migraine events, which effect balance (cerebellum), and emotions (limbic system), and vision (ocular motor region). Basically a nightmare.
Confined to the shadows of life I now watch other people living, either riddled with anxiety or mav. The label almost doesn’t matter. The result is lifelessness and misery.
I once knew someone who had MS and its a bit like that. You read all the Facebook sites and everyone basically has the same symptoms with different detail. Inability to live fully because of instability and not knowing what’s going to happen. The worst thing about that is the total drain on one’s confidence. After an episode it feels almost impossible to regain your composure and confidence to do anything. If you get up or look up and you go dizzy, you don’t want to do it again. I know this runs kilter to CBT and graded exposure or habituation or VRT, but that’s how it is. I’ve never known ONE person to have been properly rectified by CBT in my entire 15 years working as a mental health practitioner.
So this is my sad tale and I hope it can help other readers. I’d be interested in hearing any feedback. I’d also be interested in setting up a support group in Blackpool if anyone’s interested.