My Cushing’s disease brain fog has a mind of its own

Brain fog is one of the most frustrating issues I face with Cushing’s disease. It’s not one thing, but a collection of symptoms, such as memory lapses, confusion, trouble focusing, mental cloudiness, and unease.

I didn’t realize that Cushing’s disease was causing my brain fog at first. I was diagnosed in 2020 and had my first surgery shortly after. I experienced cloudiness, unease, and trouble focusing, but chalked it up to medication and recovery. But when my tumor came back, the brain fog hit harder and was very difficult to manage.

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Like having 50 balloons attached to my head

The hardest part was realizing I had memory loss. It was mostly short-term, but it would come up in conversations with friends. They’d ask me about a song they had mentioned to me, or something that we did together, and I’d have no recollection. Entire conversations seemed to disappear. Dates were especially hard, but it wasn’t just normal forgetfulness. A friend would tell me they’d brought something up two or three times that seemed completely foreign to me. I dismissed this at first, thinking I was scatterbrained, but it happened too many times to be a coincidence.

I began having trouble recalling things. If someone sat down and was very specific in retelling a memory, it could trigger a memory, but if I tried to think back on it myself, it would be quite difficult. I later found out this was also affecting my ability to speak clearly, which is why I developed a bit of a stutter. This showed up slowly at first, with struggling to find words, but became exacerbated over time.

It’s hard to explain how brain fog feels, but I like to describe it as having 50 balloons attached to my head. It’s like my head is splitting in two, but it’s not necessarily painful. Just airy, or empty. It hurts my eyes as well, and makes the room feel like it’s buzzing. It isn’t consistent for me. It comes and goes, and is usually worsened by flare-ups, lack of sleep, or medication changes.

There’s no perfect solution

Now, with treatment, I’m doing better overall. However, when I get less sleep, my brain fog symptoms come back tenfold. I forget tasks, conversations, recipes, and even memories. To combat this, I keep track by writing down everything that I need, having a daily to-do list, and communicating with my friends and family about my memory issues. I’ve come to terms with the fact that there isn’t a perfect solution to this. It’s something that’s a part of me now.

Of course, there have been frustrating moments where I’ve forgotten plans and not shown up, and awkward conversations where people remind me of something I’ve forgotten. I used to brush it off out of embarrassment, but now I own up to it. Brain fog is out of my control, and I’m not a bad friend because of it. I’m simply doing my best despite the circumstances I’ve been handed.

Follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.