• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Illness started with a severe seizure. What could that mean?


Senior Member
I have had seizures as long as I can remember. They only appeared at night and I was conscious during them but past out right after and often didn't remember it happening the afterwards. I first get an aura before the seizures. But since I was sleeping it brings on the exact same dream/nightmare EVERY single time. Its very basic, everything is white and then the white gets overtaken by black color while I have that aura feeling and BAM I wake up with a seizure.

My brother has the exact same type of seizure and he has a similar dream associated with it! Isnt that crazy?? In his dream the colors are red and green. We are not diagnosed and I luckily haven't had a seizure since January 2016, knock on wood.

The weird thing is my illness actually started with an incredible powerful seizure in 2014 and that was right before sleep and I past out when it was over. It had never been this extreme, I legit thought I was going to die. It felt way too much for my brain to tolerate. Next day I woke up and went to work and felt very off. Tried to continue working and looked up at the clock and I thought this wont work. My brain was super dull and brainfoggy. I had never gone to the Dr for anything and my Dr was in another city. But I felt so weird that I wanted to check it out and went to the ER. They just brushed me off and said it sounded psychological.

Another weird thing is that this was the first time it happened while being awake. for the next two years I had around 10 seizures everyone while being awake and I thought I was going to die everytime because it was feeling like my brain was going to short circuit. They were a lot more severe than I had had in my earlier years.

The seizures I had is very similar to Autosomal dominant partial epilepsy with auditory features (ADPEAF).

I did a 30 minute EMG months after one of the seizures and of course it didn't show anything. And After it stopped in 2016 I didn't see any reason to continue pursuing it. It happened quite rare growing up so the 10 times while being awake during 1.5 years ish was a lot. I had been very sick for 3 weeks 2 months prior which felt like a hardcore cold, which may have been Mono. Idk. I have EBV antibodies but Idk if it stems from that illness. And I want to add that I probably was a little tired the weeks/months prior but I was in my early twenties and felt like superman so who cares about a little fatigue right?

It was really disappointing to find out how arrogant and uninterested doctors are in general. When I figured that out I remember I told myself that I never would let an arrogant narrow sighted ass get to me. In hindsight it was a good learning experience because those doctors are the norm. Human beings that choose their career because its a good education and pays well and not because they want to find the root cause and help people. This is a fact, I don't like to generalize but the majority of doctors I have met falls into this category.

Anyone else had/have seizures? Any idea what it could mean? Infection? Common in ME CFS?


Senior Member
South east England
But I felt so weird that I wanted to check it out and went to the ER. They just brushed me off and said it sounded psychological.
Does'nt sound psychological to me. I understand how much you mistrust Doctors but there are a few good ones around who might be able to find out whats wrong. Can you think of anything that triggered the seizures?


Psalm 46:1-3
Great Lakes
I honestly just skimmed the following page but maybe it will give you some ideas: https://en.wikipedia.org/wiki/Causes_of_seizures

They just brushed me off and said it sounded psychological.

I'm sorry but I think the medical professionals are getting PSYCHO-logical as @Rvanson very smartly put it recently. I swear they'll be telling us things like a broken leg or (fill in the blank) is PSYCHO-logical next.

That and their love of prescribing anti-d's for everything under the sun.