I thought I would share my story and see how well it fits with other people’s experience of MAV.
I’m not sure I have MAV but here is what I do have. It started in early March 2017.
Initial 3 symptoms all happened on same day.
- Felt light headed while standing when turning to face a whiteboard, it only lasted for a few seconds, no room spinning, just that feeling in your head. I am a teacher, this was a new experience for me. I was nearly 54 at that time and had never experienced anything like it.
- When I was walking I felt for very brief moments that I was falling.
- Objects moving horizontally on tv annoyed me in a mild way.
This was day one. Blood pressure, blood sugar and blood tests all ok. Eye test, ear tests, dental check up ok.
Symptoms continued, I soon determined that fluorescent lights really annoyed me, tight spaces, busy places, shopping malls, shiny floors and I was now sensitive to sudden unexpected noises close to me Sun glasses helped a bit. I seemed to adapt and moving objects no longer bothered me. Vestibular exercises of all sorts did not help. Doctor still thought it was a virus and that I would get over it. Driving was always ok for me. Chiropractic, Hall Pikes Maneuver, Acupuncture of no benefit. Very tired in the head after a few hours of work. Need to close my eyes a few times a day to cope.
After six months I was ok in shops, fluorescent lights not too much of a problem. I was only getting mild feeling of light headedness. A new symptom started, when dropping off to sleep I would often get a wave or rush type feeling in the head, not unpleasant. This comes and goes. I can be free of it for a week and then it can happen again. My walking now felt like it needed more concentration, no longer just a dropping feeling, it now felt like my legs and feet were more sensitive, they just didn’t feel right. After walking on uneven ground around the school it would mess with my head. I suspected MS, my Doctor referred me to a Neurologist. The exam was normal, cerebellar checks were good, strength and sensory all good. A brain and spinal MRI was normal. Every vestibular check came out normal. The neurologist suspected MAV, the balance physio thought PPPD.
So that’s where it was left at just past the 1 year mark. Since I was still fairly functional, I decided not to go down the drug route yet. I went on the Migraine diet, took Magnesium but found it made no difference. One thing in the second year I did find was how to make it worse and that was by doing anything that increases methylation like methyl folate or SAM-e. It took a month to recover each time from that. This gave me frequent light headed attacks and when walking, looking up or too the side could make me feel dizzy. I am back to “normal now “ where short walks are no problem. One thing that’s interesting is that walking at night or blindfolded during the day is easier.
At just past the two year mark my main problem is that when I walk my legs and feet still feel strange and walking on uneven ground can cause me to feel a little strange in the head and the ground can sometimes feel like it is moving. My leg strength and coordination are good. Short walks around the house and up and down stairs are no problem. Driving is all good. But this is still an everyday thing and I never feel normal when walking any distance.