Hello. I am the desperate mother of an 18-year-old daughter, looking for some encouragement and help. We live in India where this condition is not very well known or understood.
My daughter has been suffering since 2016 from near constant dizziness and vertigo ( no headaches)… We went to nearly 20 doctors, who could not give us a diagnosis. BPPV, Menieres, and various other things were ruled out. She had an MRI and a CAT scan with everything normal. Eventually, we finally found a doctor in Mumbai who diagnosed MAV. He put her on medication and a strict diet ( the 5 Cs diet). She was on 250 mg Dicorate ( Divalproex sodium), 20 mg Inderal ( propalonol) and 8 mg Betavert daily ( Betahistine) daily.
After about a month, she was vastly improved. She remained reasonably well for a year and a half on this medication, and also cutting out food triggers. But in April of this year, she had a relapse and she has now been constantly dizzy since then. The medication appears to have stopped working. Her earlier doctor has now retired, so we have had no choice but to see a new doctor, who has suggested VRT in addition to the medicines. She has been doing that for about 2 weeks now with no improvement. The dizziness is so constant and intense that she can’t get out of bed.
She is meant to be going to college this year and it looks likely she will be forced to take a gap year. This is of course making her intensely depressed and anxious; it’s a vicious circle. I am wondering if she needs to switch to another medication. Do mav patients become resistant to medication? Any advice greatly appreciated.
We are both incredibly sick of doctors telling us we should be glad it’s not cancer or something life threatening. It’s completely taken over her life in the last two years, affecting her exam performance, sports, and other activities, so it is so frustrating to be told we should be grateful that it’s not cancer.