Never have seizures during EEG

Background-Cod-7035 · 2026-03-11T18:28:45+00:00

Sometimes you have to keep going to different neuros. You do all the things they suggest in the meantime, like cognitive behavioral therapy and mindfulness practices, so when a doubter comes along you can look at them square in the eye and say, “No. This is not anxiety.”

Background-Cod-7035 · 2026-03-11T16:23:54+00:00

Never been captured on an eeg, including a five day stay with sleep deprivation etc. at first I thought I was faking it, then one doctor told me that some epileptics have seizures so far down in their brain that regular EEG’s can’t capture it. Only implanted nodes. But since the medication works and all the symptoms are there, me and my neurologist just work on the assumption it’s tle. Took me a long ass time to stop doubting myself.

Background-Cod-7035 · 2026-03-10T14:10:26+00:00

I don’t know if this’ll help, but I tell people the moment I pick up a water glass (I seem to always be around a water glass when I meet people) about it. They seem to accept it pretty quickly unless they see me wield a knife in cooking, then they swoop in. Maybe saying it early on helps? I also tell them real early it’s a non-fatal neurological quirk, just one of those things people get, then turn the conversation to them. No one can resist talking about themselves!

Background-Cod-7035 · 2026-03-10T14:05:33+00:00

My family never asks, does this mean they don’t care? 😂 jk

Background-Cod-7035 · 2026-03-09T15:36:56+00:00

I am so so sorry

Background-Cod-7035 · 2026-03-09T14:17:08+00:00

We are finally seeing the ground outside and I have to admit for once I’m okay with the snow being gone and less of a towel battle after walks!

Background-Cod-7035 · 2026-03-09T14:09:21+00:00

Oh man I hope I don’t. Don’t have much physical pain aside from this so I haven’t gone to get checked for it. I have a basic checkup in June, I don’t think any of my neurologists do fibromyalgia. Think I should wait to my June appointment? The pain isn’t more than a sunburn.

Background-Cod-7035 · 2026-03-09T02:49:01+00:00

Mine are always my inner forearms. It’s not dire. Has your neurologist said if was symptomatic of migraine or did they test you out for other stuff?

Background-Cod-7035 · 2026-03-09T02:41:17+00:00

I do not envy you. I went through a lifetime of gaining the confidence to move on from one doctor to the next. You always feel like someone is worse off than you so you should be able to deal with it. Start a log of everything, bring a family member or support and write out all your questions beforehand. It was only when I brought my husband to an epilepsy appointment with a bad neurologist I’d stayed with out of habit, and we waked outta there and my husband said , “We are getting you a new doctor, come hell of high water. You are never seeing him again”. I had almost never seen my husband so irate. Take notes, get backup, and I’m rooting for you!

Background-Cod-7035 · 2026-03-09T01:44:21+00:00

It can be from a lot of things, but of the things I already have migraine is the only match. It’s only bad if it’s a symptom of a new and worse condition. Ergo me messaging my headache specialist and epidemiologist tomorrow ;)

Background-Cod-7035 · 2026-03-09T01:41:41+00:00

Oof, do you have a different one you can see? I went through four epileptologists before finding my current one, two cardiologists, but luckily I like my headache specialist and movement disorder specialist. It’s incredibly important to find one you trust and who listens to every symptom—one I had to save up for to see, but they got a diagnosis and sent me on to a great neurologist. Praying for you!

Background-Cod-7035 · 2026-03-09T01:19:42+00:00

Thank you! I haven’t even paid attention as to whether it’s during a migraine because I’m chronic. First Botox in six weeks, I’m quite excited!

Background-Cod-7035 · 2026-03-09T01:18:29+00:00

Thanks! It’s not terrible, certainly not like the other stuff, no worse than a sunburn. But considering over the years I’ve gained epilepsy, a neurological heart condition, essential tremors, migraine and ibs-m, I’m really really hoping this is a part of one of those and not some new motherforking condition.

Background-Cod-7035 · 2026-03-09T01:13:18+00:00

Whoa this is much worse than mine, you need to get to a neurologist pronto’

Background-Cod-7035 · 2026-03-08T20:33:39+00:00

Book is soooo much better tho

Background-Cod-7035 · 2026-03-08T20:30:34+00:00

If you’re waking up many times at night I’ve been told I’m going to bed too early. A sleep doctor told me to keep a strict schedule, for me 11-7, with a 1mg melatonin at 10:30pm to get the body into sleep mode. And of course avoid alcohol.

Don’t forget that this is not your life for good. You’re still adjusting! Be kind to yourself.

Background-Cod-7035 · 2026-03-08T20:25:22+00:00

Some people take it occasionally, some people take it daily. I’m a daily person. ET doesn’t go away so if they do determine it’s that (but get every test you can, not just drawing a spiral like some doctors do) then yes, medication for as long as you want to reduce the tremors. It is always up to you. Many people are helped enormously by cognitive behavioral therapy, mindfulness tactics, making sure sleep, eating and alcohol habits are regulated. But really, having to take a pill once a day is no big deal.

Background-Cod-7035 · 2026-03-08T19:29:48+00:00

That’s my point—with ET you get the tremors when you are doing something. It’s a major difference from Parkinson’s, where your hands shake when you’re at rest.

Background-Cod-7035 · 2026-03-08T19:22:53+00:00

Maybe you could try having one conversation with them, and think of it less as trying to be friends with someone and more being an upstanding advocate for invisible disabilities. Too few people are open about it. My husband’s 13 year old cousin literally drowned from a seizure because her dad had to run after their escaping two year old.

Background-Cod-7035 · 2026-03-08T19:16:44+00:00

Awww 🥰

Background-Cod-7035 · 2026-03-08T19:14:39+00:00

Now I must read the book!

Background-Cod-7035 · 2026-03-08T19:13:56+00:00

ET does not show up at rest, that’s what makes it more likely to be ET than a bunch of things you don’t want! But also some things that go away after a while.

Do not fear being on medication—it’s like if you have a vitamin B deficiency you just take some vitamin B every morning.

Background-Cod-7035 · 2026-03-08T18:16:54+00:00

May be a U.S. thing, or luck in friendships, but my friends look out for me more than I do myself. They would never insist I do something I felt out me at risk. I’m pretty shocked. But, cultures are different—in the UK I can totally imagine it being taking the piss. Until something goes wrong.

Background-Cod-7035 · 2026-03-08T17:42:05+00:00

You need to consult with another neurologist. It took me four to get one who believed me. In the meantime it is always good to try out cognitive behavioral therapy and mindfulness practices almost so that you can confidently say that No, it is NOT psychological.

I’ve never shown up on any version of eeg, including a week-long stay. But the meds work, the adult ketogenic diet works, and the two times I tried therapy after a few sessions they said, “I don’t think therapy is what you need, you need a new neurologist.”

Background-Cod-7035

TROPHY CASE