I thought I would start mapping my progress so far. Last edited 24 March 2019.
First acute balance issues: intermittent episodes since 1998.
Number & duration of acute phase(s): worst two episodes lasted a few days; second worst last three hours; others last about an hour. Have lost count of how many altogether.
Any suspicious physical event/trauma leading up to dizziness: none.
Start of chronic phase: became more regular in mid-2015 when I started to commute 100 km a day to work. Stopping work didn’t set the clock back.
Age at chronic onset: mid-fifties.
Started medication: approximately August 2015.
Stopped medication: -
Number & type of consultants seen to date: two GPs, one ENT, one neurologist.
Diagnoses received: BPPV (the person who diagnosed this didn’t even examine me for the basics); labrynthitis; vestibular migraine.
Medications used successfully for MAV: pizotifen - partially successful, but caused weight gain.
Failed medications for MAV: sibelium.
Non-pharmacological treatment tried which helped: keeping hydrated; adequate sleep; increasing protein intake; trying out tai chi for balance and strength (results yet to be shown).
Non-pharmacological treatment tried which didn’t seem to help : BPPV prevention exercises (they do not help if one doesn’t have BPPV).
Dietary triggers identified: possibly yeast. It looks to be a factor, but okay in small quantities.
Other known triggers: motion; fatigue; sensory overload; stress; seasonal transition (so, the month before winter and the month before summer are usually full on); episodes are more likely to happen in the morning; air pressure over 1020 hectopascals.
Any hearing loss in either ear: -
Persistent or intermittent tinnitus and character: -
Other chronic conditions I’m suffering from: epilepsy; hiatus hernia; GERD.
Medication I’m taking for other conditions: lamictal; tegretol; somac; Nizatidine; vitamin D3.
Any personal history of migraines: vestibular = yes; classic migraines = no.
Any family history of migraines: no. I’m always the odd one who gets weird and rare things.
Any history of ear problems: no.
How did friends, family, and doctors react to your symptoms?: friends and family generally supportive, but found it hard to understand what I was describing; ENT not particularly interested in the whole thing, barely asked any questions, but he sent me off for a lot of inconclusive tests; neurologist was fantastic and asked lots of questions - he was the one who made the diagnosis; I know that some work colleagues didn’t believe me.
Falls: three falls and two faints. Ugh.
In October last year, I had a holiday and I pushed myself too much. It pays to rest when one is tired. It took me a month to feel better again.
I’m currently celebrating being free of vestibular migraines for almost 4 months(as of 24/3/19). I can’t pinpoint an exact cause for this. I live around the triggers a bit, but this behaviour usually would not bring a nil result. Not complaining. I’m using this time to focus more on self care and to be observant about what works. Every non-wobbly step feels like a minor miracle.
I’ll keep adding as I think of things. I need to work out more about triggers and patterns.