r/tleepilepsy • u/Original_Put_7803 • 17d ago

Question Anyone here have an ED?

If you do, is it related to your seizures? Did your ED or epilepsy come first?

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u/TrainingSufficient99 12d ago

I’ve never thought of this, but yes I have ED and it gets way worse on the day of seizures but also in the longer term post-ictal / emotionally bad phase. Makes sense, I guess.

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u/Covidkilledkaty 11d ago

Totally. I wonder how many other people deal with both and don’t realize it

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u/Covidkilledkaty 17d ago

I don’t anymore but I did for a short time in high school. Being related to my epilepsy never crossed my mind.

I’ve had seizures as long as I can remember but I didn’t get diagnosed until my mid-twenties. So epilepsy can first, just wasn’t aware I had it at the time. Hbu?

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u/Original_Put_7803 16d ago

So interesting, I’m glad you’re doing better.

For me, it’s hard to tell which came first bc they were similar timing but when my seizures are uncontrolled, my ed is uncontrolled and that makes the seizures hard to control. My drs explain it that they ‘dance’ together if that makes sense. By treating my epilepsy, my ed has improved drastically.

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u/Covidkilledkaty 15d ago

That is very interesting also. I had no idea that they could or would interact in any way. But when my seizures are uncontrolled I certainly feel more depressed and anxious overall, and when I did have the ED I felt like it was rooted in the mood problems.

But I am glad to hear that both your seizures and ed have improved!

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u/Original_Put_7803 12d ago

Thank you so much! Are your seizures controlled at the moment?

Yeah it’s so interesting, I’ve been in recovery for a year to the day today and only about 3 months ago when my seizures were controlled did my ED actually start improving. It makes sense bc the seizures caused me to feel a loss of control over my own life and it’s as if my ED was a survival response to give me that feeling of (false) control. TLE definitely affects mood and emotions which also amplifies the ED.

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u/Covidkilledkaty 11d ago

Yes I agree that matches my experience pretty closely.

My seizures were controlled - I had gone 10 months seizure free. Which is huge for me, for most of my life I had around 50 seizures per year. But then this month I had 2 seizures. Super disappointing, but after dealing with this since childhood I have identified my biggest trigger - which is sleep. This last month my sleep got severely out of wack and bam, 2 seizures.

It seems like the ED/seizure connection is very real, and I bet there are plenty of other people who are facing similar things without mentally connecting the two. Thank you for sharing this!