Seizure Disorder

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I Lived 27 Years in Confusion Before Learning I Had Complex Partial Seizures

For years, I thought I was just “too sensitive.”

I blamed myself for struggling to focus, for my poor memory, and for the anxiety that seemed to follow me everywhere.

At 18, during college, I had what I thought was a heart attack.

Sudden dizziness.

Panic.

A deep fear that I was dying.

But the hospital said everything was normal.

Blood tests, ECG — all clear.

I was told:

“You're just stressed.”

I wanted to believe them.

But something inside me knew… it wasn’t just stress.

Childhood: My Silent Beginning

I grew up in a home filled with emotional tension, financial problems, and arguments. As a child, I didn’t understand what trauma meant — but I was living in it. My mind stored every fear, every scream, every moment of shame.

In school, I faced judgment, discouragement, and emotional isolation. I commuted in overcrowded buses, studied while facing constant comparison and shame, and heard discouraging words from many directions.

No one saw what was happening inside me.

I didn’t even understand it myself.

Age 18 to 27: A Decade of Silent Suffering

After that first panic attack, the symptoms kept coming — but in strange ways that didn’t always make sense:

I would feel like I was watching myself from outside.

My awareness would “slip” for a few seconds or minutes.

I’d have sudden episodes of fear, dizziness, or numbness.

My memory was getting worse.

Learning anything new took so much effort.

My body would feel different — like I wasn’t fully in control.

I had shame I couldn’t explain. Guilt I didn’t deserve.

I asked myself questions like:

“Why is my brain like this?”

“Why can’t I think clearly like others?”

“What’s wrong with me?”

No one had answers.

Even I didn’t.

Looking Back Hurts

Now, I’m 27. And sometimes it hurts to think:

“What if someone noticed earlier?”

“What if I got the right help when I was a child?”

“Could my life have been easier?”

Maybe I wouldn’t have blamed myself so much.

Maybe I would’ve believed in my abilities.

Maybe I would’ve stopped hiding my struggles.

The Diagnosis That Changed My Life

After another overwhelming episode, I finally got an EEG and an MRI.

And that’s when I got the diagnosis:

Mesial Temporal Sclerosis (MTS)

A structural brain condition where part of the hippocampus (mine was on the right side) is damaged or smaller. It affects memory, emotion, and behavior.

Complex Partial Seizures

Neurological episodes that don’t look like the typical “seizure” you see on TV. Mine would come as dream-like disconnections, unusual physical sensations, confusion — and for years, they were invisible to others.

I wasn’t “too sensitive.”

I wasn’t weak.

I was living with a neurological condition no one could see.

💪 I Survived What I Didn’t Understand

In those 10 years of silent suffering, I still:

🎓 Completed my Undergrad

🎓 Finished my MCA

💻 Became a Mobile App Developer in the IT field

I worked hard — harder than most, because my brain was fighting a silent battle every day.

And yet… I made it this far.

💬 A Letter to the Person I Was (and Maybe Someone Reading This)

Dear Me,

You’re not broken.

You never were.

You were simply surviving something you didn’t yet understand.

You lived with invisible trauma, silent seizures, and misunderstood emotions.

And still — you kept going.

Now that you finally know the truth…

Now, real healing can begin.

You are brave.

You are not alone.

And if someone else out there feels the same way:

Please don’t give up. Keep searching for answers.

You deserve to be heard. You deserve peace.

— Me, Age 27

🧠 Final Thought

To anyone living with anxiety, strange mental experiences, confusion, or emotional overwhelm — especially when tests come back “normal” — don’t give up.

Sometimes the problem isn’t just emotional. Sometimes it’s neurological.

You are not imagining it.

You are not weak.

You are just waiting to be understood.

You’re not alone.

#complexpartialseizure #MentalHealth #SeizureDisorder

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I'm new here!

Hi, my name is Heidi. I'm here because I want to support others and have support myself due to having epilepsy mingled with mental health conditions. It has been a difficult road to navigate. I didn't start with a seizure disorder until I was 18years old. After living that long with a "normal" life it was challenging to begin to have to change everything and watch others, especially my mother, give up part of themselves to help me. Mom has been in this battle since the beginning and watched my thinking process and behaviors change. I know she has cried in private and been worried that each day will be my last. I have also had many moments to laugh about along the way such as, trying to take off the over door after a seizure, talking to random people and coming to with a look of confusion, or coming to and having my kitchen clean after frying sausage on the stove stop and trying to find the sausage and finding it weeks later in a Tupperware dish in the cabinet I kept them in.....needless to say I did not consume the sausage. I just want to be an advocate and educator not just for people with epilepsy (which I do think is desperately needed), but people with co-morbidities and how they affect the person's mental health. At times we are not treated as a whole person, but as our disability and when we describe other symptoms to our doctors, they can be dismissive and talk down to us saying such things as what you are feeling isn't an actual symptom of your illness. As a social worker and formally working with many populations I saw this type of treatment among them. I would see the brokenness within others when they just kept being told they were not good enough or their past and their disability define.

#MightyTogether #Anxiety #Depression #Migraine #Epilepsy

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I’m new here!

Hi, my name is clgraf2023. I'm here because I have intractable generalized epilepsy. I was diagnosed in 2002 after having my 1st grand Mal seizure. After the initial EEG & other tests, it was determined by the treating neurologist that I had been having absence seizures since infancy. After a trial of numerous combinations of seizure medications, finally found two that seemed to work but my neurologist recommended a Vagus Nerve Stimulator to add on as an adjunct therapy. My 1st one was implanted in 2011. I had a few serious hospitalizations, two because of status elepticus. Since then, my VNS has been replaced once & my seizures have reduced significantly. However over the last six months, I've had 4 grand Mal seizures resulting in injuries, & another seizure medication added to the two I'm already taking. Very frustrating. Sorry for the long post

#MightyTogether #Epilepsy #VNS #SeizureDisorder

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I’m new here!

Hi, my name is chroniclife87.
I have chronic debilitating Hemiplegic Migraines and a seizure disorder that is part of the migraine auras. I am looking for help, support, resources for employment and much more!
#MightyTogether

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Update #exhaustion

I've been completely exhausted and in pain for quite a while (not counting the chronic pain I have because of cerebral palsy, which is a life long thing). This situation has been going on for six months. I went to the doctor the other day and among other things she had me do a blood level concerning my seizure disorder meds. I got the phone call yesterday - it turns out that my Keppra levels were high, which causes at least exhaustion.

So now, I have to change up my med routine. I take Keppra, 100mg and 500mg twice a day (I also take Lamictal 150mg, but there's no problem there). What my doctor wants me to do is keep me taking Keppra 100mg, but instead of taking the 500mg, I'll take it differently - cut it in half at 250mg. I think it'll wind up being 500mg somehow, but things'll be different because I'm taking it at 250mg at a time. Luckily, all of the instructions will be on the bottle so I'll get it all straight - I have ADHD, so if the information wasn't on the bottle, I'd be in big trouble.

Now, the irony of this is that the Keppra may be making me exhausted, but at the same time I know by experience that any time I change my seizure meds for any reason, it takes me 10 days to 2 weeks to get the cobwebs out of my brain and used to the new dosage.

Ah, my life is so much fun! Reminder: develop a better attitude about life, ASAP! 😉

Oh yeah...about the pain not caused by having cerebral palsy - how am I going to get rid of that? I have no freaking idea!

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We Are Getting There #Hyperthyroidism #CKD #Anxiety #SeizureDisorder

Update from my last post. The black cat in the picture is my hospice foster Lady Greensleeve AKA Green Bean as I call her. The yellow cat is my foster fail Hatch. Yesterday I posted about how stressed and overwhelmed I was with Green Bean. Today, I had a seizure at church and I'm fine but was exhausted so I laid down for a nap. I woke up to her and a total of 5 out of my 6 cats in bed with me. These two were the only ones left when I was able to get a picture. First time she's actually slept with me. I am still tired but glad she is doing better than yesterday and I am going to eat then the cats and I are going to get more sleep.

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I'm new here!

Hi, my name is LavaMoon74. I'm here because my person and soulmate and love of my life has DID, and its been almost 2yrs now since her repressed childhood trauma and her alters have surfaced and in our 27yrs together we were both/all completely speechless and dumbfounded bcuz although weve known and were aware of her having mental illness and a seizure disorder, we had no clue or idea about any abuse or trauma in her early childhood or any alters or splitting or dissociation or any of it, now we also know its partly due to the fact my persons family hid it, buried it and inserted another life over it and narcissistically abused me spouse with denial, deflection and lying to her her whole life. We have a Love we know to be rare, unique, alien and unheard of in modern civilzation. We connect and operate on a level and existence deeper, stronger and more pure and bound in truth then anything weve ever known Love to be or described as. She is gifted and blessed with so many abilities and dare i say powers, its the stuff fictonal stories are filled with, but she is also severly dissociative and lost in her mind sometimes and the disparity is wreaking havoc on our marriage and our 3 daughters and some family members are turning it into the worst possible scenario in some areas and im looking for others out there that Love and are devoted to their person with plurality and it helps me to understand her more and be more forgiving when i connect with others in our same or similar circumstances, thanks for having me, be sound and be grateful for each other everyone!!!

#MightyTogether

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My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology

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