I’m 18 months into a debilitating illness and still searching for answers. I’m hoping that there are people in here who can share their wisdom.
I’d just returned from a holiday with friends, sleep deprived and in need of some rest. A couple of days later, I started to get an odd sensation in my head – a mild type of pressure that was uncomfortable and couldn’t be ignored. The next day, I attempted to go to work and quickly found I was too unwell and returned home. It was a general feeling of being unwell, body zapped of energy as if I was coming down with some kind of bug.
What followed was a 10-day period of feeling more ill than I’d ever felt before. The headache had developed into an extremely painful, whole-head pain of an intensity I’d never before experienced. This was accompanied by extreme sensitivity to light and sound, nausea, a loud high-pitched tinnitus and a painful pressure behind my eyes. I lay in bed for almost the entire 10 days, in a dark room taking painkillers every few hours. I tried to do my own research to explain what was happening and viral meningitis was one possible explanation, though I didn’t notice any particularly severe neck stiffness. The only time I left the house was to visit the doctor’s surgery, where I was told I was suffering from sinusitis. This didn’t really make sense to me at the time as I’d suffered from sinusitis previously and it was nothing like what I was going through.
The symptoms began to ease after around a week and I felt almost back to normal again at the 10-day mark, except for lingering tinnitus and being drained by the whole experience. Unfortunately, the symptoms then returned one week later but with less severity. Ever since then, I’ve been stuck in a continuous cycle of these symptoms fluctuating in severity but never going away. The light & sound sensitivity and tinnitus are with me 24/7. I have a computer-based job and the light sensitivity has made it very difficult to do my job – there was a period of a few weeks where I was completely unable to use screens without unbearable pain and discomfort in my eyes. I’ve needed to take quite a lot of time off work and will soon be moving to part-time hours instead. I’ve tried special glasses and special screen filters but it’s usually still very uncomfortable, especially when the ambient light is lacking. The sound sensitivity is also debilitating and I often need to wear earplugs/headphones in noisier environments or even in the kitchen, otherwise it’s uncomfortable and overwhelming. The headache is unlike any that I'd experienced before and quite difficult to describe.
I was sent for an MRI scan a couple of months into the illness, which found nothing. I decided to go private to see a neurologist as I couldn’t wait the length of time that it was going to take on the NHS. The neurologist diagnosed me with a chronic migraine. Since then, I’ve been working my way through the list of treatments he suggested – propranolol, topiramate, amitriptyline and now most recently candesartan. I’ve had no success with any of them and in fact the side effects often made matters worse, such as affecting my quality of sleep, which I’ve found to be very important.
I’m a 33-year-old guy who has never suffered with migraines in the past, and at no stage of this illness have I experienced the classic one-sided throbbing pain normally associated with a migraine. Hence, I’ve always been very sceptical about this diagnosis and I’m not convinced that this explains what I’m going through. My GP has finally accepted this and has recently referred me to another neurologist for a second opinion, which I’m now on a long waiting list for.
At one point I also became aware of sleep bruxism and as a result, started wearing a custom mouth guard to sleep with. The maxillofacial department don’t believe that it’s the root cause but could possibly have been exacerbating the issues.
Since reading another thread on here about lingering sensory issues post viral meningitis, I’ve now come full circle to this line of enquiry. I remember that around the same time that I first fell ill, I had what I think was a cold sore break out inside my nose, and with my immune system likely low at the time due to exhaustion, I’m wondering whether that could have led to all of this. At no point has my CSF been tested.
Another persistent symptom, which gained no traction at all with my GP or neurologist, is pulsatile tinnitus. This is a low-pitched whooshing sound, only ever on the left side, which goes in rhythm with my heartbeat. I tend to hear this when straining, bending over or when lying in certain positions. I’ve become aware of slightly diminished hearing on the same side too, which might be the reason for me picking up this sound. Or it could be that the high-pitched tinnitus (which is louder on the left side) is masking other sounds.
I’m keen to hear from some long-term sufferers of VM who can share their experiences as this might help me on the path to understanding my own problems. How would you describe your headaches and have you found that the sensory issues have faded over time?