Could this be POTS brain fog?

[MDmom]

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.

[Sarah Tee]

Do these episodes tend to happen when you are standing up or exerting yourself, e.g. shopping trip? If so, they could be presyncope. It can cause a lot of symptoms beyond just lightheadedness, including a feeling of disconnection and the world seeming to fade away (sound and/or vision) as the person is on the edge of losing consciousness.

As you say, the only way to tell for sure if they are seizures or not would be to catch one on an EEG. I hope your new neurologist will be more helpful on this.

Brain fog isn’t very well defined, but it is usually described as having difficulty thinking clearly and remembering things. Some people also mention getting mentally tired and frustrated easily. Technically it might be called a cognitive deficit.

Here’s one study that tried to investigate it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4161607/

For me, brain fog includes a loss of executive function, difficulty paying attention, and a short fuse. I also struggle to find the right word (or any word!) and have difficulty processing speech if there is distortion or background noise. Learning new things is hard, although this could be related to poor sleep quality.

(I don’t have POTS but my specialist says I have low blood volume and low blood supply to the brain.)

[Pistol]

@MDmom I have HPOTS with autonomic seizures. I also have NCS ( neuro-cardiogenic syncope ). I used to pass out and also have what appears to be grand mal seizures. I was hospitalized for 5 days on an epilepsy monitoring unit ( EMU ) where I was 24/7 hooked up to an EEG as well as a heart monitor. I had a seizure there and it was proven to be non-epileptic but of autonomic nature. When my blood vessels relax too fast I pass out, and when they spasm I seize, both due to not enough circulation to the brain. 

I also have experienced episodes of presyncope that sound exactly like what you describe. One example I vividly remember: I was sitting next to my husband in my doctors waiting room and suddenly i was in a dream-like state, I heard everything that went on around me but could not move. Noises sounded like they came through a tunnel. My eyes watered and I could not blink. My husband was trying to get me out of it but I could not react, nurses came and went and in the end I "snapped out of it". They determined it was presyncope. The odd thing is that normally my episodes happened when I was upright and sometimes stopped when I lay down, but this happened while sitting down. After that episode I had others that happened when sitting. So my guess is that it may be presyncope what you experience, especially since you state it feels different than your seizures. 

[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!