About my chronic vertigo

I finally decided to write the following post as every time I have an acute episode of my chronic vertigo and mention it to people, I have to explain my situation and symptoms again. So I decided to write it down here to just be able to link people to it instead 😉. This is not an attempt to get attention or pity, so please spare me that! 😅

I have had a chronic vertigo since fall of 2000 now. It’s not a case of issues with low blood pressure (“blackness in front of the eyes”) or some light-headedness or something like that, but rather a case of the same sensoric input being generated somewhere between my vestibular system and my brain as if I was on a roller coaster or sitting on a merry-go-around. During acute episodes this leads to problems walking, a very insecure feeling when standing and sometimes also nausea and nystagmus, not to mention exhaustion while trying to compensate for all of that.

This crap started with a really bad respiratory infection that gave me a high fever and put me into bed for almost two weeks. After the fever went down I had a constant vertigo. This was right during my last two years at school and meant that I missed almost two months of classes and then had to get brought to and fetched from school by my dad for a month while I was learning to cope with this during my day-to-day and it turning less constant¹.

The initial diagnosis was labyrinthitis. When that took too long without the symptoms going away despite treatment, I spent a week getting a full check-through at a hospital in summer of 2001 after which the diagnosis became BPPV and I was taught the usual treatment for that. With that diagnosis I went on with life, doing my prescribed exercises, hoping it would just disappear one day. But when that didn’t happen and was still going on in summer of 2019 I decided to get yet another full check-through and the result of that was basically “It’s not BPPV, but we don’t know what it is, everything works like it should as far as we can see”. Not a hardware issue, no wiring problems nor firmware bugs to see 🤷

So this kinda sucks. Most days I thankfully don’t notice it, and when it hits I can still handle my day-to-day fine in most cases thanks to a sheer ton of training 😬. It certainly helps that I can do my job sitting down 😅

The bad episodes seem to get triggered by sudden weather changes², stress and illness³. I so far haven’t seen any connection to my food intake (thankfully). As I have a history of weather and stress induced migraines, and vestibular migraines are a thing as I learned after yet another lengthy research session, I’m now tracking my symptoms daily (vertigo, headache, tinnitus, nausea, plus stress & weather) in preparation for yet another round of trying to get a proper diagnosis and ideally working treatment for this shit from a neurologist.

tldr: It’s not low blood pressure, it’s not just “a bit dizzy”, it’s not BPPV (so Epley etc don’t help). It might be a weird version of migraines, I’m currently tracking things in preparation for another attempt at getting to the bottom of this. I won’t die from it and have well working coping strategies but on some days it just plain sucks.