Does anyone know someone who has nonepileptic seizures?

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
Please no trolling or BS. I know we have some intellectuals here, so let me explain all the testing I've undergone over 34 years.
The first episode was while watching Poltergeist on tv the first time it aired, I was 4. Shrink said it's impossible to remember that far back, he was a dumb shit. 9 years old, diagnosed with a fainting disorder. 14 yrs old, I was fully tested for epilepsy, nothing. EEG, MRI, and an EKG. Nothing. 2014 same tests, nothing. 48 hour EEG, nothing. Over the last couple of months, the same EEG, EKG, no MRI. 48-hour EEG with multiple episodes, nothing showed for epilepsy.
Thoughts and ideas?
 

wizer

1k+⚡Milestone
Reaction score
1,151
A seizure can be anything from dropping to the floor and having convulsions to just spacing out for a brief period of time and then returning to "reality" and realizing something weird just happened but you can't recall exactly what happened.

The latter is typically due to a TIA (Transient Ischemic Attack) which is also referred to as a "mini stroke".

My dad's gotten them for years. An MRI showed some scar tissue in his brain. Nothing specific was diagnosed, most often it isn't. Certain medications can reduce or eliminate the prevalence of these events.
 

Larry Loungelizard

1k+⚡Milestone
Reaction score
3,304
Location
Milwaukee
Please no trolling or BS. I know we have some intellectuals here, so let me explain all the testing I've undergone over 34 years.
The first episode was while watching Poltergeist on tv the first time it aired, I was 4. Shrink said it's impossible to remember that far back, he was a dumb shit. 9 years old, diagnosed with a fainting disorder. 14 yrs old, I was fully tested for epilepsy, nothing. EEG, MRI, and an EKG. Nothing. 2014 same tests, nothing. 48 hour EEG, nothing. Over the last couple of months, the same EEG, EKG, no MRI. 48-hour EEG with multiple episodes, nothing showed for epilepsy.
Thoughts and ideas?
Have medical staff advised you of any medications to take?
 
OP
OP
Iggy McLulz

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
Have medical staff advised you of any medications to take?
No, they don't want to prescribe anything without a diagnosis. Tegritol was tried and failed. The one med that seems to help is hard to get a hold of. It's called Gabitril. It's an anti-convulsant and works wonders for anxiety too. Insurance won't pay for it as an anxiety med because there's no scientific proof that it works. I can't get it for epilepsy because I apparently don't have that.
 

Admin.

60k+⚡Milestone
Reaction score
17,768
Location
In Your Head
No, they don't want to prescribe anything without a diagnosis. Tegritol was tried and failed. The one med that seems to help is hard to get a hold of. It's called Gabitril. It's an anti-convulsant and works wonders for anxiety too. Insurance won't pay for it as an anxiety med because there's no scientific proof that it works. I can't get it for epilepsy because I apparently don't have that.
I have heard of Gabitril, I think a neighbor or maybe my Sister, was on it for anxiety or something like that, but it didn't quite work for him. as I recall, I hope you find something that helps you. It sounds frustrating af. I think my sister may have something like the seizures you're talking about, she's retired and travels around the west coast to timeshare's she's invested in, and talks about mini blackout episodes while driving (ikr?) she thinks it's a sleep apnea type thing, she'll just wake up while driving and realize like Wizer said knowing something odd just happened with her, but not quite sure what....she's seeing Doctors taking tests trying different meds etc.
 

Larry Loungelizard

1k+⚡Milestone
Reaction score
3,304
Location
Milwaukee
No, they don't want to prescribe anything without a diagnosis. Tegritol was tried and failed. The one med that seems to help is hard to get a hold of. It's called Gabitril. It's an anti-convulsant and works wonders for anxiety too. Insurance won't pay for it as an anxiety med because there's no scientific proof that it works. I can't get it for epilepsy because I apparently don't have that.
Hmmm, I thought for a moment that maybe Depakene would be an option. It was the med that my uncle used for a while.
 
OP
OP
Iggy McLulz

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
I have heard of Gabitril, I think a neighbor or maybe my Sister, was on it for anxiety or something like that, but it didn't quite work for him. as I recall, I hope you find something that helps you. It sounds frustrating af. I think my sister may have something like the seizures you're talking about, she's retired and travels around the west coast to timeshare's she's invested in, and talks about mini blackout episodes while driving (ikr?) she thinks it's a sleep apnea type thing, she'll just wake up while driving and realize like Wizer said knowing something odd just happened with her, but not quite sure what....she's seeing Doctors taking tests trying different meds etc.
It doesn't work for most people, but for whatever reason, it worked for me. It's super frustrating.
Holy shit! She could have narcolepsy. With mine, I drop like a rock and twitch a little. Sometimes I twitch a whole lot and have a whole dream after I fall. Usually, I have an aura and can safely sit or lie down. I'd need a little more info, but that sounds like Narcolepsy to me.
 
OP
OP
Iggy McLulz

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
Hmmm, I thought for a moment that maybe Depakene would be an option. It was the med that my uncle used for a while.
That's one I never heard of. It sounds awful, the side effects.
My husband has epilepsy, but doesn't have episodes unless he has a high fever. He stopped having seizures during his teens, except during illnesses. Hasn't been on medication for years but still tests positive for epilepsy. Crazy how the brain works.
 

Larry Loungelizard

1k+⚡Milestone
Reaction score
3,304
Location
Milwaukee
That's one I never heard of. It sounds awful, the side effects.
My husband has epilepsy, but doesn't have episodes unless he has a high fever. He stopped having seizures during his teens, except during illnesses. Hasn't been on medication for years but still tests positive for epilepsy. Crazy how the brain works.
We know more about outer space than the human mind.
 

Admin.

60k+⚡Milestone
Reaction score
17,768
Location
In Your Head
The brain is complex. It's been suggested that it's psychological for me due to intense trauma. I want another diagnosis. Something that has a solution.
I went through a period of time doing workaholic shit, 'slinging metal' aka selling cars on at the dealership, I was single living essentially alone and working like 70 plus hours a week plus or minus, not eating well hitting the bar for a couple hours after a 10-12 hour day sometimes 2-3 days a week, I was working the floor, selling cars and rocking and rolling I had two days a week off on the schedule but it was very rare that I didn't at least go down to the lot for a couple hours just to make sure I wasn't missing that big but rare grand slam on the car lot being suddenly full of consumers begging and pleading us to buy cars, it happens very rarely like that, but....I started having anxiety/panic attacks....the first time I had one was at work feeling tired and "hiding" in the back just kind of bleary and hoping one more cup of coffee and maybe a breakfast burrito form the 'gourmet' fast food place across the street would put me in character....and all of a sudden it sort of felt like the floor opened up and I was falling in an insanely fast mad rush....but I wasn't...I was just sitting there trying to get it together....and then another time driving down the 84 on that bright sunny day...I did Zoloft or one of those for a couple years, but the main thing was scaling back on the obsessive hours at work and taking better care of myself, not working 70+ hours for the next several years and getting more sleep less drinking, eating healthier and more exercise and then retiring to a 'cozy little cabin by the sea'
 

wizer

1k+⚡Milestone
Reaction score
1,151
The brain is complex. It's been suggested that it's psychological for me due to intense trauma. I want another diagnosis. Something that has a solution.

Getting a diagnosis is possible, even probable, you may need a neurological referral. But did you know that neurology as a profession differs from virtually every other medical profession in that the vast majority of cases they can diagnose a condition, and provide recommendations on how to deal with it but unfortunately unless it's a brain tumor requiring referral for surgery if it's even operable, generally whatever is diagnosed cannot be treated.
 
OP
OP
Iggy McLulz

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
I went through a period of time doing workaholic shit, 'slinging metal' aka selling cars on at the dealership, I was single living essentially alone and working like 70 plus hours a week plus or minus, not eating well hitting the bar for a couple hours after a 10-12 hour day sometimes 2-3 days a week, I was working the floor, selling cars and rocking and rolling I had two days a week off on the schedule but it was very rare that I didn't at least go down to the lot for a couple hours just to make sure I wasn't missing that big but rare grand slam on the car lot being suddenly full of consumers begging and pleading us to buy cars, it happens very rarely like that, but....I started having anxiety/panic attacks....the first time I had one was at work feeling tired and "hiding" in the back just kind of bleary and hoping one more cup of coffee and maybe a breakfast burrito form the 'gourmet' fast food place across the street would put me in character....and all of a sudden it sort of felt like the floor opened up and I was falling in an insanely fast mad rush....but I wasn't...I was just sitting there trying to get it together....and then another time driving down the 84 on that bright sunny day...I did Zoloft or one of those for a couple years, but the main thing was scaling back on the obsessive hours at work and taking better care of myself, not working 70+ hours for the next several years and getting more sleep less drinking, eating healthier and more exercise and then retiring to a 'cozy little cabin by the sea'
I'm not a fan of Zoloft, mainly because it used to be the go-to with a side of Xanax. Personally, I see it as a red flag when those 2 meds are recommended over any other options. I can't take Xanax; it makes me delusional and paranoid.
Not getting enough rest and overworking yourself will absolutely lead to anxiety/panic issues. Working swing shift will screw with your physical and mental health too.
 
OP
OP
Iggy McLulz

Iggy McLulz

1k+⚡Milestone
Reaction score
1,522
Location
Shiloh, P.A.
Getting a diagnosis is possible, even probable, you may need a neurological referral. But did you know that neurology as a profession differs from virtually every other medical profession in that the vast majority of cases they can diagnose a condition, and provide recommendations on how to deal with it but unfortunately unless it's a brain tumor requiring referral for surgery if it's even operable, generally whatever is diagnosed cannot be treated.
I have a follow-up appointment coming up with my newest neurologist in June. I read all these great things about being able to diagnose even mental health conditions via EEG testing, but here I am, almost 48 years old, and they're still shrugging their shoulders. I get what you're saying. I used to work with a guy in the late 90s, he had epilepsy that they couldn't control very well with meds. Ran into him a few years back when I worked at FedEx Ground. This old guy had surgery years prior that fixed him! Got his driver's license and lived happily ever after.