MDmom

Thank you both for your responses. They were incredibly helpful. Looking back at my notes for the events I've experienced, the majority did occur while I was standing or exerting myself (tidying up the house, cooking) although a few happened while sitting. They match the descriptions you give of presyncope so well. The other night, after feeling that spacey sensation I actually did feel as though I was going to pass out. I wasn't sure what exactly was happening (seizure or POTS-related symptom), but it was quite frightening. I will definitely bring this information up with my new neurologist when I meet him in a few weeks. Thank you, again, for sharing this information and your experiences with me!

I was recently diagnosed with POTS but also have epilepsy. While waiting to see specialists I've been trying to tease out some possible differences in some new "events" I've been having since developing POTS. I'm wondering if some events my neurologist labeled seizures may actually be POTS brain fog or severe lightheadedness due to POTS. I have had episodes where I feel spacey, and noises around me suddenly sound very far away. I feel like I'm there but not there, if that makes sense. I can hear people and can give very brief responses to questions, but interacting is very difficult. These events are limited in duration but I'm not sure exactly how long they last (I often don't remember what time they begin). I do notice that I tend to sit down during them and sitting down alleviates my POTS symptoms when they are acting up. I know the only way to know for sure if these are impaired awareness seizures or something else is to capture them on an EEG. I am just wondering if anyone else experiences brain fog episodes of a limited/short duration or with similar symptoms. This is all so very new to me and I'm trying to make sense of these new symptoms. I do have an appointment with a new neurologist in a few weeks so hopefully he will be a bit more helfpul than my current neurologist who has shown no interest in my POTS diagnosis. Thank you.

Hi! I was diagnosed with left temporal lobe epilepsy about five years ago. I contracted Covid for the first time in July 2022 and again in January 2023. (I have a weak immune system due to an autoimmune disorder.) Although I wasn't diagnosed with POTS until after my second Covid infection, it's possible I may have been experiencing some POTS symptoms even after my first infection and I didn't fully realize it at the time. I am writing to ask if anyone has any experience having both epilepsy and POTS? Prior to having POTS, I only experienced focal aware seizures. However, after my first Covid infection I started experiencing what my neurologist feels may have been impaired awareness seizures. I've tried to find information online about the relationship (if any) between POTS and epilepsy but haven't been able to find anything helpful. Specifically, if you do have epilepsy and POTS, did you notice any changes in your seizures after developing POTS or do you notice any changes when your POTS symptoms are bad? Thank you!