Patient perspective: what’s it like to have chronic vestibular migraine?


Dr Ann Williams and family


What medical condition are you affected by?
Chronic vestibular migraine, peripheral vestibular dysfunction, ulcerative colitis (pancolitis) with secondary spondyloarthropathy.

When were you diagnosed?
Vestibular migraine: 2004, but had been ill since 1993 with misdiagnosis of ME.

Ulcerative colitis: 2011.

What is involved in managing symptoms now?
Vestibular migraine: symptoms are not well controlled at all. I am currently taking pregabalin and nortryptyline, with sumatriptan for acute episodes, but my neurologist has put me on the waiting list to see the head of the headache clinic to try Botox because none of the preventative medications I have tried have been effective.

Ulcerative colitis: currently well controlled with 2g mesalazine daily and some dietary limitations.

How is your daily life affected?
My chronic migraine symptoms mean that I have had to give up driving in 2000. I feel severely unwell in busy/crowded areas and anywhere with fluorescent lighting. I struggle to leave the house on my own because I feel constantly spaced out and unstable even on a good day. I had to give up my career – I had just completed a PhD in psychology and was starting a postdoctoral research position when my symptoms worsened to the point. I could no longer function and I can now only do limited amounts of freelance academic proofreading work from home. On a good day I can get to the next street to collect my son from school, but that’s basically the scope of my life now.

The ulcerative colitis doesn’t have a major effect on my daily life at present because it is very well controlled, but the occasional flare-ups of the secondary spondyloarthropathy cause severe joint and tendon inflammation and pain, and limit my mobility. This has not flared up for a couple of years though.

Has your outlook on life changed?
Yes, inevitably. I am very limited in how much I can get out and about, I can’t socialise normally because noisy places exacerbate my symptoms and my head symptoms are invisible but so weird that nobody understands my experiences. This has left me quite isolated and caused a lot of depression and anxiety. I value the days I can get out and do normal things with the help of my partner.

How has your care been since diagnosis? Has there been any good care or conversely any bad care?
There were multiple examples of extremely poor care before my vestibular migraine was diagnosed. My first GP diagnosed me with ME and anaemia and did no further testing, but merely put me on antidepressants and left me to rot, upping the dose every time I went back to say I was feeling no better.

A second GP told me very aggressively that it was all in my head, and the first ENT consultant I saw was similarly aggressive and said it was all just anxiety. I had to pay to see a private neuro-otologist before I was listened to.

Vestibular testing demonstrated significant inner ear damage that was not being compensated for because of chronic silent migraine, with acute migraine episodes mostly being triggered hormonally. My current neurologist, however, has been excellent and has looked into my problems from several directions – preventative medication, hormonal management, testing for issues such as histamine intolerance, and is now referring me to a colleague to try Botox.

Care for my ulcerative colitis has been excellent since diagnosis – ‘visible’ symptoms are taken far more seriously throughout the NHS. My diagnosis could have been made much earlier though. I have suffered severe unexplained anaemia since the early 1990s and none of my GPs ever bothered to investigate it, merely handing out iron tablets, when colonoscopies showed that I had probably been bleeding high in my colon for at least a decade.

Are there any positive aspects to the disease or your life living with the consequences?
Not really, no!

If you could give one piece of advice to the healthcare professionals that you have come into contact with what would it be?
Just because something is ’invisible’ that doesn’t mean it’s not real. If a patient is anxious/depressed and is talking about invisible symptoms, please don’t assume that these symptoms are because of the anxiety or depression. In many, many cases it’s the other way around – my anxiety is caused by my physical illness, but it took me years to find a doctor who looked at it in the right direction, by which time I had been suffering terrifying symptoms daily, battling on alone with no idea what was wrong with me. This has had a profoundly damaging effect on my mental and physical health.

Dr Ann Williams lives in Wales and is a freelance academic proof-reader 

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