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 which last hours to days (and sometimes even weeks) this leads to unstable 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. Thankfully, it’s “just” vertigo, my hearing is perfectly fine.

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), no hearing loss is involved. 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.