POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME

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Brain Fog

Really? I'm dedicating an entire page to "brain fog"?

Yup!

Why? Because after I go through all the technical explanations about the Autonomic Nervous System, blood pressure, heart rate, and how all of these interact to create various symptoms, I've found that brain fog leaves people a bit perplexed (well, more so than the other symptoms do. ;P)

I believe this is because, while one can scientifically describe the specific functions (and malfunctions) of the body in POTS/Dysautonomia, brain fog can come across as more of a general, non-specific term (the medical field doesn't really acknowledge it). 

Physiologically speaking, in POTS/Dysautonomia, brain fog is caused due to a lack of blood moving to the brain. This makes sense: brain needs blood to function, POTS affects blood circulation, brain doesn't get much blood. Brain fog brings a heavy sense of a befuddlement and massive frustration.

Now, I must add that I have always had a sharp memory. My parents took me to my older brother's graduation party (I was 6), introduced me to a lot of people I didn't know, and that was that. Apparently, a year or two later, they were talking about someone we had met at the party and I chimed in with, "Oh! Was she that lady who was wearing that red knitted vest with the birds on it and those black pants with the defined crease running down each pant leg?" I must've met 40 random people! 

Along with this, I can remember birthdays, I can recall where a specific bit of information is in a 500 pg textbook, I remember names/stories that people mention once in passing. In short, I am freakish in my ability to pick-up, and retain, details; I do so without consciously thinking about it.

However, these days, I can be in mid-sentence and completely stop; most people forget what they were going to say -- I forget everything I just WAS saying. Often times, even after I'm reminded of what I was talking about, it takes me a good minute or two to call it back to memory. I forget what day it is... I forget what day it is 10 seconds after I ask my husband! If I'm upstairs, he will ask if I could bring something to him when I come downstairs -- I'd say 10% of the time I actually remember to do so. I forget doctor's appointments, responding to email/phone-calls from people checking in to see how I am, changing the oil in my car.

(Personal lament:  I'm kind of a nut about words, punctuation, grammar, etc... I mean I'm that annoying person who gets irritated at the announcers when they speak incorrectly. So imagine how much it bothers me when, after sending an email, I find I forgot how to spell the simplest word and, not only that, I've completely omitted words from a sentence! "Dear Mom, Could you bring over tomorrow?" Oh, then there are the fun, odd substitution of words: "Did you have a busy book day today?" Drives me nuts!)

Although I do get a kick out of these things (if I'm in a good mood :P), brain fog can also have more detrimental affects:

I have been taking my meds at the same times, every day, for years -- but there have been weeks where I just completely forget them. And it isn't like my routine had changed at all. Work didn't start at a different time or I was at someone's house in a different time-zone. Things were exactly the same -- I. just. forgot. Then, of course, because I'm missing meds my symptoms get worse, which means I get more brain foggy, and yeah -- it was messy.

This happens with water also. I can't, for the life of me, remember how much water I've had in a day. I even drink out of a Nalgene... 1 Nalgene = 1 liter. But I can never remember how many Nalgenes I've had. For a long time I thought I was drinking way more liquids than I actually was and after my husband (secretly) watched me for a couple of days, he assured me I wasn't drinking nearly enough. So I started keeping a check list, but forgot to fill it out. Then I made a sticker chart, but forgot to use the stickers. Then I put a stack of twist-ties right by the sink so that every time I filled up my bottle, I would twist another one on. I still forget to do this the majority of the time, but it's the best way I've found to keep track of my water-intake. 

I've tried to adapt in other ways. Having had such a visual memory, I could write lists in my mind and remember everything I needed to do. Now-a-days, I have 6 or 7 lists floating around the house -- which is funny in a sad way, because I forget where I put them! I try to use the people around me as well, "Hey, I'm hoping to do ________ this afternoon. Could you remind me when you get home from work?" 

However, out of all this information, I think the last point is the most important to understand. Forgetfulness and brain fog bring about two different kinds of feelings. I've been preoccupied in my thoughts and then found myself trying to remember what I was going to do next; being forgetful makes me feel flighty. Having moments while driving where I honestly canNOT remember where I am going, where I am, and how I got there? Brain fog makes me feel stupid, frustrated, and panicky/confused.

And it's hard. Transitioning from someone who could remember the weirdest details about complete strangers to someone who now has to think for 30 seconds to remember her 7 year-old dog's name? When people chalk it up to forgetfulness it makes it even harder. Forgetfulness comes across as something you can work on. Brain fog, just like tachycardia, dizziness, etc., is something you have to cope with and adapt to.

 

So what can family and friends do?

Please, please be patient and understanding. Chances are us POTSys are already ripping ourselves apart for forgetting to get a birthday present for our niece, or not getting the tickets to the movie, or spacing on filling up the cat's empty water bowl.

Find a gentle way to remind us. I admit, I'm a bit of a prideful person, so I can get a bit defensive when my husband asks how much water I've had or if I've taken my meds (especially when I'm already frustrated at myself for forgetting). However, we have found a way for him to present the question so it doesn't make me feel bad and helps him to keep taking care of me. (I also just need to suck it up and recognize he's trying to help instead of getting all huffy-puffy about it! )

Lastly, assure us that it's ok. Being exhausted and not being able to do the physical things that you want? It sucks. But, on top of that, forgetting "simple" things and just feeling all stuffed up in your mind? That really sucks. So give us a big hug and/or tell us it's ok when we beat ourselves up about it. Sometimes we need to be reminded that we aren't crazy or a big ol' burden.