One of the doctors responsible for my brain surgery told me he could take a pic of my brain for me while they were in there.

I love that guy.

World Epilepsy Awareness Day

Throughout March and especially today on the 26th we focus on spreading awareness about epilepsy.

There are so many types of epilepsy and therefore seizures which affect different parts of the brain and cause different symptoms. Not all seizures involve loss of consciousness, repetitive movements or convulsions. Symptoms and the post-ictal phase (after a seizure) are all very different from person to person and type/origin of the seizure. This can make it hard to seek help, for seizures to be recognized for what they are and for people to get the treatment they need.

Raising awareness can be what helps people get the help they need. Like me - after years of misdiagnosed seizures, I saw a video of someone explaining there seizures and recognized how similar that was to what I experienced. This helped me do further research and come to my GP with this information and begin the process.

Seizures are very different, symptoms are very individual and it can be incredibly hard to get diagnosed because of this and many other factors. The more awareness raised, hopefully we can help other people and maybe save someone from years of untreated epilepsy.

Hey! We don't know each other but I found you through the PNES tag. I'm trying to find out more info about PNES versus temporal lobe epilepsy, to help me figure out how likely it is that I need medication for what I'm pretty sure are focal seizures.

My question is: can PNES seizures have an aura?

Are there any ways you know of to tell the difference aside from an EEG during an episode? I am planning on getting a neuro referral at my next doctor's appointment but it's been giving me bad anxiety worrying about it.

Thank you for your time.

Hello! I really hope things go well with your appointment! I know how scary all of it can be. I have full faith that you've totally got this though!!

So, to answer your question: yes, some people with PNES can and will experience an aura before a seizure, but others won't. The way that PNES affects people and is experienced can vary from person to person. For example, like I said, I do experience an aura sensation before I have a seizure. My head begins to fog up in a way that's kind of hard for me to fully describe. For me, it's almost like I'm slowly becoming mentally numb, like a fog is rolling in that puts me on high alert. But I also have other tell-teale signs that I'm about to seize: my left hand always starts to tremble, and I always become vastly less-than-aware of myself and my surroundings. Other people with PNES might have different cues, or similar cues, or anything else entirely. That being said, the seizures themselves can differ, too. While mine include no longer being in control of my limbs and violent convulsions and twitches, some people may have ones that look like absence seizures, or even another type completely.

Before I was officially diagnosed, I went to two different neurologists and had two different EEG scans done: one in office and one overnight. They monitored how my brain behaved both outside of a seizure and during a seizure. PNES seizures and epileptic seizures look very different on EEGs, which is to be expected due to their different causes. It's actually pretty cool to see the difference, I recommend looking up some different scans to see! But outside of the tests, my doctors ran through my symptoms and how I experience having a seizure, and were able to jot down the differences in what I was experiencing compared to someone with epilepsy. For example, I'm actually able to hear everything around me during a seizure, but since I'm seizing, I'm unresponsive no matter what, which tends to be abnormal for the type of seizure I experience. I also go completely nonverbal after a seizure for anywhere from 10 minutes to an hour. But again, that's just how I experience them. Experiences can and often times will vary from person to person, but the cause is the same: PNES is brought on by an emotional response, while epileptic seizures are caused by a physical response from the brains nerves cells.

Now that being said, temporal lobe epilepsy doesn't seem to be caused by an emotional reaction, but rather, can be triggered by an emotional reaction (usually high stress levels) due to the epilepsy being present in the, well, temporal lobes. Which then circles back around to the overall cause being different, though symptoms can be similar.

To be honest, due to their similarities, I'm not sure if you could be diagnosed with one or the other without having EEGs and other tests done. But the good news is, none of the tests hurt! And for all of them you'll be closely monitored so in the event of a seizure you won't be injured then, either.

(I'm a "glass half full" kind of person lmao)

I cannot stress enough how important it is to be honest with your doctor about what you're experiencing. It's definitely anxiety inducing for a lot of us, but the more open and honest you are with them, the more they can help steer you in the right direction. And if you get saddled with a doctor unwilling to listen or simply write you off, please don't hesitate to really advocate for yourself. You really need to be in your own corner so you can get the correct diagnosis, so you can then get the proper help and treatment you need. It'll take time, and at some points it'll probably be frustrating--I know it was for me--but it's so important to get the proper treatment for the true problem.

I really, really hope that things go well for you and that you can figure out what it is that you're experiencing! I'm rooting for you!!

(Also this got very long very quickly, but I hope it helps nonetheless!)

I love seeing folks joke about getting lobotomies. Bitch I did it before it was cool. Epilepsy was keeping me trendy.

Good news: I found one of my seizure triggers

Bad news: I had a seizure

Trigger I found is sleep deprivation. I'm not surprised - as if narcolepsy wasn't bad enough, now I have this to worry about too. I don't even know if I'll get to see my neurologist on time to get the letter I need to be exempt from jury duty. I just know I'm going to have sleep attacks if I get selected. But I can't afford any doctors rn 🫠

It’s one thing for a man with temporal lobe epilepsy, schizophrenia and several personality disorders to succumb to his own delusions.

It’s quite another for 1.9b people to follow him down the rabbit hole of his madness.

like?? it’s honestly no wonder i have epilepsy tbh?? and it’s kinda surprising that i didn’t realise earlier

Temporal lobe epilepsy...

I asked her to allow that frightened, abandoned girl to tell her what it had been like to be all alone, her illness compounded by family rejection.

"The Body Keeps the Score: Mind, brain and body in the transformation of trauma" - Bessel van der Kolk

Epilepsy Word Vomit

It’s been over a year since I last had a seizure and this morning I woke up with a purple inside of my mouth and a vague recollection of “shit goin down” aka having a seizure. It’d been a very glitchy day - in and out of consciousness a few times and trying to carry on as normal. So I start the grief process again. Every time. Over the years the process got speedier. Instead of hitting me 2 days later like a tonne of bricks it became a slowly creeping entity that came to rest beside me after a few hours. We are slightly more comfortable with each other now. Now that the general shape of my life and dreams has morphed considerably. I call her over with a guided mediation and we sit in the quiet together and sigh. It is so confusing. Invisible illness screams to be seen to “feel validated” at times - and yet when it is here, rearing it’s terrifying head, there is a sickly concoction of grief and validation that sits uncomfortably on my chest and crushes me. Are you meant to feel guilt for sympathy you receive for something out of your control? This morning my Dad says “oh, you were doing so well”.

I have an undiagnosed seizure-like disorder, and I would love some input from people who’ve dealt with this kind of thing.

It started out of nowhere one night and has been going on for months. I have these episodes where I spasm and stutter, as well as seeing flashing lights and hearing things. I get super nauseated from them, especially as they’re coming on and first starting. I also feel like I’m falling or in an elevator, and sometimes I get deja vu about everything. Sometimes they only last a few minutes but other times it’s hours.

I can’t go anywhere or even do anything around the house when I have them, or else they escalate to where my body is spasming so violently I can’t even sit up straight in my wheelchair. They also make me sensitive to light and sound, so even if I make it to my college classes, doing the homework causes or worsens episodes. I’ve been hospitalized twice for it, and both times they found nothing wrong with my brain or electrolytes or anything.

I have cyclic vomiting syndrome, another poorly understood disorder that causes my autonomic nervous system to try and kill me in response to strong emotions, plus anxiety and depression. I’m also AFAB and I have some childhood trauma from being a hella sick kid. All this makes me a stereotypical candidate for functional neurological disorder. But my symptoms also match temporal lobe epilepsy perfectly, and if seizures aren’t treated, it could be dangerous. I’m afraid I’ll get fast tracked to an FND diagnosis without properly getting the TLE ruled out.

If you have FND or TLE, have any advice on getting a diagnosis accurately? What has your experience been with dealing with the medical system?

Just had my first ever seizure in my sleep that I was fully aware of

A description of severe temporal lobe epilepsy along with possible Mesial Temporal Sclerosis.

Some people with temporal lobe seizures will have more mild symptoms, some people with temporal lobe seizures have a more spiritual experience.

I don't know what's worse - seizures themselves or the post ictal phase when I'm recovering.

Van Gogh's Health: What Was Going On?

Interesting findings about famous artist Vincent Van Gogh

Van Gogh’s Mental and Physical Health Van Gogh, the famous artist, had some medical conditions that doctors have been trying to understand for a long time. Let’s take a look at some of the possible reasons for his mental and physical health issues. Temporal Lobe Epilepsy One possible condition Van Gogh had was temporal lobe epilepsy. This caused him to have seizures. Some doctors believed that…

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holy shit, cracked the code as to why i was having so many seizures back between 2018 and 2021 and haven’t had many since