My name is Bella. I was diagnosed with MAV recently by a neuro-otologist after 7 months of suffering with constant symptoms (false motion feelings, heavy head sensation, imbalance, tinnitus, noise sensitivity, moderate throbbing headaches, etc.)
From my own experience and others on here something which seems to be quite a common theme is a lack of understanding from doctors about this condition. I am shocked at how so many are given a labyrinthitis diagnosis and told that there is no treatment available other than VRT when symptoms are chronic. I occasionally look at dizzytimes and there are many vertigo sufferers on there who believe they have uncompensated labyrinthitis or ‘chronic subjective dizziness’. Of course I cannot diagnose these people with MAV myself, but having recognised that many complain of the same symptoms as me I would not be at all surprised if they do unknowingly have it.
Yes, MAV is a difficult diagnosis to get ones head around. There are many questions surrounding it that it seems none can truly answer yet. Why do some have 24/7 symptoms? Why do some never have headaches? Why can symptoms vary so much between one individual to the next? Ultimately, what the heck is really happening in the brain of a MAV sufferer and what is the best way to treat it?! What gets me is that rather than want to investigate the answers to these questions, a significant number of doctors, even neurologists, seem to want to overlook and undermine its existence.
What we do know is that MAV sufferers respond to migraine preventative treatment as the same rate as those with chronic classic/common migraines and that there is genetic links and symptom overlaps between them. What is also clear is that there are far too many sufferers whose symptoms may not be visible to those around them but who are clearly not attention seeking liars or people whose severe anxiety problems are the root cause of their chronic dizziness.
It is a true shame that some people suffer with this awful illness for years yet could have begun treatment much earlier on had they not been denied this due to misdiagnosis and ignorance. MAV treatment is often a difficult and rather lengthy process in itself even once a diagnosis has been reached and life is too short to lose more time than is necessary putting up with the symptoms! I know that MAV is not life threatening and will never be top of the list of illnesses in terms of research and treatment in the medical field. But quality of life is a very important thing and we all know the detrimental effect MAV can have on it, so all I would wish for is a wider and deeper recognition of the disorder among doctors.
Sorry for the rant but I expect many of you share my frustration! Hopefully soon things will change and future sufferers will be able to avoid the relentless search for a diagnosis many have had to go through. In the meantime let’s all aim to educate our doctors about this as much as we can!