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Maybe Mav, Maybe PPPD

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.

  1. 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.
  2. When I was walking I felt for very brief moments that I was falling.
  3. 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.

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Hello. As you’ll know as you been on here a while there’s no doctors here and cannot diagnose. We are just fellow sufferers but as one of those and being of similar age when vertigo started you do sound pretty typical MAV to me. PPPD apparently although treated similarly supposedly has quite a distinct definition in terms of classification which MAV lacks. Qualifications for PPPD include some ‘post’ major vestibular event (?) and must include constant dizziness of at least three months’ duration. About the only consistent criterium with MAV is some personal or familial connection to migraine which you have not actually named. MAV is described by some doctors as a ‘migraine variant balance disorder’. You certainly describe alot of that sort of symptom, ie walking on uneven ground causing problems. I’d say, if the neurologist suspected MAV run with it and try a preventative, maybe Amitriptyline. From my own experience I’d say it’s best to take action now because for many people it can turn chronic and then it’s much more difficult to hold in check. Helen

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Thanks for the feedback. I never have considered myself a migraine person but I have always got headaches on a regular basis. I think I will discuss medication options with my neurologist. I’m fairly functional but back to normal would be fantastic.

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Your symptoms sound very familiar to me and I was diagnosed with migraine variant balance disorder in 2018, for which I tick all the boxes. After 35 years of suffering with this on and off, I’ve reached the conclusion that it’s virtually untreatable. Some meds seem to work for some people and not for others, so they’re a bit of a lottery. I have bad days and good, but both are totally unpredictable so making plans has become impossible. I suppose its better than being dead.

And probably unrealistic but preventatives early on are worth a good try. Don’t let it become entrenched. Had any luck so far with your neurologist. Helen

Thanks for the feedback. I have not gone down the medication route yet. From looking into the research it seems SSRIs seem to have proved to have been of benefit in both MAV and PPPD. I am still not convinced I have either, Few people seem to report the feet and leg symptoms which I get, although they don’t feel right they are not numb or weak. Also I don’t get bad and good days. I am the same every day.

I am still waiting on a time with the neurologist, is there evidence to show the earlier the treatment the better the results. Thanks Glenn

You need the next appointment to give you some positive or at least meaningful diagnosis you can believe in to with which to work. MAV/VM is comparatively common, PPPD supposedly occurs only after some vestibular event and involves at least 3 months’ of constant dizziness as main symptom. Other things, the ‘nasties’ like brain tumours etc, should be ruled out by means of tests and scans.

I’d say If you do have VM/MAV IMHO best chance comes if it’s medicated before it becomes chronic 24/7. Haven’t seen written evidence ‘the earlier the better’ but it would seem logical with almost any condition. Vestibular conditions can become ingrained and long-term affect mental health, best avoided. From my own experience I’d say the longer and more established it becomes, the more difficult it is to treat. However I wouldn’t worry a few weeks waiting for an appointment is going to have an adverse effect. Helen

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