Monday, April 25, 2016

Forgetfulness and Fear

One of my scariest symptoms is memory loss. When it first started, my husband would look at me with fear in his eyes when I would state that I had no memory of the conversation he could clearly recall us having. It wasn’t a feeling of forgetting something; it was simply not there.

I still have these empty spots in my mind. It goes beyond the normal day-to-day forgetfulness that stress and being busy cause for many people. It is more than brain fog that many of us experience. It is profound and brings with it a sense of vulnerability. There are days where I literally can not remember my phone number and address. I have them written in the margins of my calendar in case someone asks me.

Like most dysautonomia symptoms, it comes and goes. I can go months without feeling like I’m losing my mind, and then suddenly I’m forgetting how to get somewhere while I’m driving or I can’t remember which way to turn the faucet for hot water.

I had a psychological work-up done during the last flare of this symptom. I refused an MRI, although that is always an option if I decide I want it. The evaluation showed non-organic dementia. In his professional opinion it was related to pain and depression. Honestly, I’m less depressed now than I’ve been since I got my diagnosis, but I know science shows that emotions change the brain. I don’t consider my pain to be too bad compared to many other people out there, but it is apparently enough to hinder cognitive functioning.

I remember learning as a nurse that heart attack patients fear swimming. They are afraid it will happen when they are in the water and can’t make it safely to shore. This is a less extreme version of that. I’m fearful of doing things out in town by myself for fear of not being able to function and not being able to get help or get home. I have gotten lost while walking several times, and the inability to think clearly makes the panic worse. It greatly affects my decision-making ability, so I make a succession of poor choices which furthers the problem.

The fear has faded (mostly). We try to have a sense of humor about it, but it’s tough because I love my brain. Who doesn’t love their brain? It’s full of my memories and makes me ME. So, I work at the managing the causes -

It’s important to recognize it before it hinders my decision-making.
I admit when I’m overdoing it and lie down. Perfusion to the brain is important!
I nap when I’m tired. Fatigue makes everything worse.
I do brain exercises. This was recommended by the psychologist.
I try to do things to manage my stress and depression. Exercise and laughter are big on this list.
I take pain medication when I hurt. Even if it means I’m taking extra pills.
Write it down right away. Sticky notes in every room and car. Calendar.
Medication tops with clocks. My daughter bought me these, and they’re genius.
Alarm on phone for midday pills. Mine is actually on my Fitbit!
Plan ahead. Take a checklist for safety.
Don’t overheat. I have a cooling towel I use. I take my shoes off a lot, and I wear layers.
Tell someone where you are going and when you should be back.


  1. I am so sorry you have this problem, I am Epiletic so know what it is like to have something that "comes and Goes". I was diagnosed 32 years ago but it has not really bothered me, I have travelled to The States, Spain and Ireland on my own. I wish you well and hope you can carry on , When I was dianosed I told my late husband"It's going to live with me and NOT the other way round......Take care, will be thinking of you.

    1. Thank you. There are some with dysautonomia who have epilepsy. I'm glad to hear that yours is under control and that you are still able to have great traveling experiences!

  2. Those medication tops are genius.

    I'm curious to know what kind of brain exercises you do. Maybe that will be one of your upcoming posts?

    1. Aren't they, though?
      I should do that, thanks for the idea!

  3. I can't imagine how fearful this kind of scenario would be. Having never experienced it (I only have minor forgetfulness, even if it's right after doing said thing), I can't directly relate, but I have witnessed it with an ex of mine.

    She would undergo ECT treatments and many times they weren't so bad unless doing a number of them in succession. There was one time she couldn't remember some of the things you mentioned. Addresses, numbers, names. But then the scary moments of not knowing she should be where she was (her home)? Was she supposed to be there? Why was she there? I'm not really sure how to explain it, but it was scary. Different instances, but perhaps similar elements.

    Hopefully with the different skills you've developed over time, this happens less frequently.

    I was also curious about the brain exercises mentioned!

  4. Mine was never that bad, and I can see how that would be terrifying (even if you knew it was a short-term side effect). It does sound similar. It's such an untethered feeling. I remember watching ECT treatments as a nursing student. It seemed so awful, but I know it does help many people.


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