I have EDS, which has caused POTS + CFS as comorbidities. Prior to developing POTS and CFS, I was the sharpest person in my class, I did things very quickly, and understood things faster than others. This was constantly pointed out by people. I experienced an incredibly delayed diagnosis of POTS. Normally, on average, it takes about 4 years from the onset of symptoms to be diagnosed. For me it took 12 and I can’t help but feel like having an undiagnosed heart issue for so long caused some neurological damage.

I am on a heart medication for POTS called ivabradine and it has helped me so much, however the symptom that still lingers the most is the brain fog, which is extremely embarrassing. Some days I can’t even form a coherent sentence, I’ll say down instead of up, I’ll forget what someone said in the middle of their sentence, I’ll forget what day it is, be unable to process what’s directly in front of me, or forget where I am spatially. It’s so bad that my family have likened me to a dementia patient. I have the hypovolemic variant of POTS, meaning I’m always deficient in blood volume so my ears are constantly ringing and I have an achy neck from insufficient blood flow to my head.

Salt + lots of water helps but it doesn’t save me from daily embarrassment caused by my brain fog. Everything about me is slow now, even my physical movement is slow and it’s like I’m moving through water. It pisses me off so much because this isn’t me. I genuinely feel like I’m a bad person because of this, and it’s affecting my confidence so badly I’ll avoid doing simple tasks.

Now, I’ve heard that amphetamines/CNS stimulants are to brain fog as ivabradine is to POTS. Ivabradine has worked wonders for issues relating to my heart rate and has also helped my circulation somewhat because each heartbeat is stronger compared to before. I’m constantly rushing things trying to make my body go fast and do things fast (because in my mind fast = my old self, and my old self = good) and something will happen that’ll trip me up.

I don’t know what it’s called when you have a bad conscience, but she bullies me so badly when stuff like this happens. I’ll make a mistake due to brain fog and I’ll be legit angry all day with thoughts like “what the fuck, even a 5 year old wouldn’t have issues with that” “how can you live normally if you don’t even know what day it is?” “you’re such an embarrassment, your old self would be ashamed” sometimes I feel like that bad conscience IS my old self, and she’s ashamed of me. I’m completely aware of how I’m messing up on the simplest of things which makes this so much more enraging. It’s like I’m having to use 100% of my brain power just to make a cup of tea.

I am due for a telephone appointment with my cardiologist soon but I might just book an appointment with my GP specifically about the brain fog. If being on prescription speed makes me more like my old/true self then so be it, screw the stigma.