Has a cause been found for your seizures?

Has a cause been identified for your seizures? (Choose all that apply)

  • No. It's a big mystery.

    Votes: 80 35.6%
  • Maybe. We have some suspicions, but it's hard to know.

    Votes: 74 32.9%
  • Yes. There was an event, injury, or an illness/physical cause that caused my seizures.

    Votes: 56 24.9%
  • It's a confusing topic - I may have more than one cause, some we know, some we don't..

    Votes: 30 13.3%
  • I don't care what the cause is, so don't ask me.

    Votes: 2 0.9%
  • I care what the cause is. I want to know.

    Votes: 50 22.2%

  • Total voters
    225

AlohaBird

New
Messages
1,920
Reaction score
0
Points
0
has been considered idiopathic, and I would LOVE to know the reasons for it.
And, my seizures are nocturnal. I've noticed that since I've been diagnosed as a celiac, and stayed on the celiac diet, that my problems with waking up exhausted from any nocturnal seizure are pretty well gone. I think it's only happened once, or twice since then.
Yep, "idiopathic" is just medspeak for "your guess is as good as mine". I have been scanned backwards forwards and sideways and no answers.
Mine are nocturnal too. I wonder if these are harder to diagnose (?)
I've done very well on a ketogenic diet (also cuts out all the things that would bother a celiac).
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
I've done very well on a ketogenic diet (also cuts out all the things that would bother a celiac).
Following the ketogenic diet does not cut out all things that would bother one with celiac disease. Those with celiac still need to be concerned with cross-contamination regardless of what the food product is. Those who feel they are "gluten sensitive" but do not have a diagnosis of celiac disease do not have to be concerned with cross-contamination.
 

AlohaBird

New
Messages
1,920
Reaction score
0
Points
0
OK, I should have said "most", not "all". Thank you so much for finding an oversight in a post that's over a year old and bringing it to my attention.:clap:
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
OK, I should have said "most", not "all". Thank you so much for finding an oversight in a post that's over a year old and bringing it to my attention.:clap:
What difference does the age of a post make?? Lots of people here "regenerate" an old thread; this happens to be a thread I never paid attention to before. Besides, I know you don't want folks here to be mislead by incorrect information so I thought I was doing you and other forum readers a favour by clarifying the fact that following a ketogenic diet does not automatically imply the diet is gluten free.
 
Last edited:

resaebiunne

Stalwart
Messages
639
Reaction score
1
Points
78
For the record,

I have never found a cause of my epilepsy. There are things that might point to a cause, but that said, I've had numerous MRIs, EKGs, blood work, CAT scans, EEGs, so on and so forth that have never revealed anything useful. I've also had a workup by a neuropsychologist who did a batch of cognitive tests. I have both epilepsy and schizoaffective disorder bipolar type and there doesn't appear to be any cause for either of those conditions. They may be related, they might not be, who knows. The doctors haven't been of much help as even on Keppra I still have seizures.

I'm skeptical of the diet changes and supplements that people recommend on this forum. I would prefer to find a medication regimine that stops the seizures but so far that's not helped either. Doctors are of limited help but there is still some hope that I'll find a decent doctor who can help out with my conditions.
 

JJR1956

New
Messages
154
Reaction score
0
Points
0
The docs say it's from my car accident in 2000. It was a bad one. A drunken jerk hit me and I had major c-spine damage, (along with broken bones), and I hit my head. Weird thing is, I had my seatbelt on.
 

Howll

New
Messages
118
Reaction score
0
Points
0
For the record,

I have never found a cause of my epilepsy. There are things that might point to a cause, but that said, I've had numerous MRIs, EKGs, blood work, CAT scans, EEGs, so on and so forth that have never revealed anything useful. I've also had a workup by a neuropsychologist who did a batch of cognitive tests. I have both epilepsy and schizoaffective disorder bipolar type and there doesn't appear to be any cause for either of those conditions. They may be related, they might not be, who knows. The doctors haven't been of much help as even on Keppra I still have seizures.

I'm skeptical of the diet changes and supplements that people recommend on this forum. I would prefer to find a medication regimine that stops the seizures but so far that's not helped either. Doctors are of limited help but there is still some hope that I'll find a decent doctor who can help out with my conditions.

Just out of curiosity, why are you sceptic of diet/supplement improvisation? I mean, most can't do anything but good and are worth a try if you're still having seizures. I'd rather put natural substances such as food/CBD oil/minerals etc into my body over invasive medication any day.
 

gnault

New
Messages
259
Reaction score
0
Points
0
I have had the same neurologist for years and I have never been told a specific cause or possible cause for the seizure(s) that I had in the past. The note that I have on my file is that I had a generalized clonic tonic seizure and was diagnosed with frontal lobe seizure disorder.

My wife noticed many partial seizures before my clonic tonic occurred. I googled the description of status epilepticus as my wife stated that I was in and out of seizing 15 minutes from the time she was able to get the phone and call 911. I believe total time was about 20 minutes. My neurologist had a note on one of my letter's to my family doctor that I had a gliosis that showed up on the MRIs. I don't know how a gliosis affects me long term.

I also had three separate head injuries during my school years. In grade three or four I was bumped off a desk I was sitting on and hit my head on the desk next to me. Cut my head open, went home and no doctor's visit involved (early 70s). A few years later fell on the ice on a skating rink. Hit my chin on the ice and broke my front teeth, once again no hospital or doctor's visit (not that I remember at least). Then in high school getting on the bus I received an elbow to the during some pushing getting on. I broke my previously broken front tooth again.

It probably doesn't help that over my first five to ten years in the navy that I was exposed to trichloroethane and other cleaning agents.
 

AlohaBird

New
Messages
1,920
Reaction score
0
Points
0
What difference does the age of a post make?? Lots of people here "regenerate" an old thread; this happens to be a thread I never paid attention to before. Besides, I know you don't want folks here to be mislead by incorrect information so I thought I was doing you and other forum readers a favour by clarifying the fact that following a ketogenic diet does not automatically imply the diet is gluten free.
Oh, heavens, no. I wouldn't want someone to run the grave risk of assuming that ketosis removed all possible risk of cross contamination issues.

Thank you so much, as I already said, for bringing such an important point up. And as I already said, my bad, I should have said "most" not "all".

It's great to know that you can always be counted on to scour my old posts and correct such egregious errors.
 

masterjen

New
Messages
2,080
Reaction score
0
Points
0
It's great to know that you can always be counted on to scour my old posts.
Scour your old posts?! I have better things to do with my time. I saw something someone (in this case, you) who said something that may cause other forum members to perhaps incorrectly think that a ketogenic diet was inherently gluten free. Since this is not the case, I made the correction. END OF STORY. Now, leave it alone.
 
Messages
1,914
Reaction score
0
Points
0
Chicken pox sent me down the road at ten. With Tonic Clonic.. But the doc said I pretty much had the petit mal all along. The docs gave me the shingles shot this year because with that virus and I if I got the flu I would be in big trouble. I had Sepsis last year and I don't want to have that again.Love Teresa
 

Porkette

Veteran
Messages
1,420
Reaction score
12
Points
148
Hi,
They found scar tissue on the right temporal lobe of my brain is what caused my sz. and when I went in for surgery they found damage on the frontal and left temporal lobe that not a single test showed (MRI, PET scan, SPECT scan, depth electrode e.e.g.) because the damage was in to deep in the brain for any test to show, I was told I was a weird case by my Dr. because what caused the scar tissue is to many cells on the temporal lobe that never dissolved as I grew up and in turn the cells turned into scar tissue. Wishing all of you only the best and May God Bless You!

Sue
 

Hobbes

New
Messages
91
Reaction score
0
Points
0
Daughter's first neuro thought it was due to damage from hydrocephalus but things have changed and the current epi thinks it could be genetic. Someday cheaper testing that insurance springs for will answer many people's causative questions, won't fix treatment and prognosis as quickly.

If anyone likes to see changes in genetic issues, I recommend 'Beyond The Ion Channel' at epilepsygenetics dot net.
 

txtiger

Pillar
Messages
91
Reaction score
0
Points
31
For years, my neurologist was never sure what caused my seizures. Then, when I began seeing an epileptologist, he had me in the hospital for video EEG monitoring and used a 3T MRI machine, which found my "Bilateral periventricular/subependymal heterotopia", but more extensive on the left, with the right hippocampus appearing normal.

As I've been reading up on heterotopia, from what I understand, the type I have usually appears in women in the second decade, which lines up with my situation. I started having funny feelings I later learned were seizures in my late teens, early twenties, once I was in college and probably getting less sleep.
 

seagull

New
Messages
2,268
Reaction score
0
Points
0
Oh, heavens, no. I wouldn't want someone to run the grave risk of assuming that ketosis removed all possible risk of cross contamination issues.

Thank you so much, as I already said, for bringing such an important point up. And as I already said, my bad, I should have said "most" not "all".

It's great to know that you can always be counted on to scour my old posts and correct such egregious errors.
lol you crack me up:roflmao:where you been

for what it worth boink on head caused mine.
I got habbit of bringing old threads back partly because got wrong specs on don't see date
 

Alanna

New
Messages
10
Reaction score
0
Points
0
Thanks for bringing this thread back - I'm new here and really appreciated reading other folks' experiences. My doctors and I are still looking at what could have caused my seizures. They came out of the blue, there's nothing obvious that I can think of that would have triggered seizures at my age (51). Nothing showed up on the CT scan so the doctors are looking harder. I'm being sent to an Immunologist to diagnose my extremely rare and strange immune disorder - the testing just became available. This disorder may have contributed to reducing my seizure threshold. I'll be having an "epilepsy MRI" in two weeks. Apparently they'll do many thin slices to hopefully find something. For what it's worth, my neurologist thinks I have a small "scar" (his word) possibly in or near my hippocampus. I had nocturnal C/T seizures in January and then in March. I'm on meds and haven't had more seizures. I'm trying not to stress out too much about the testing and potential results. Reading posts on this forum has helped. Thanks.
 

seagull

New
Messages
2,268
Reaction score
0
Points
0
For me something happened when I was child but flaming great boink when I was 34 and pregnant about 9months later had X-ray and showed possible skull fracture maybe if I gone to hospital had brain rest things may been different I will never know spent years speculating but life to short now it happened and ain't a thing I can do so live life to the max cos long time dead what will be will be all those euphoniums
 

Janus

New
Messages
944
Reaction score
0
Points
0
Yes. I have a traumatic brain injury TBI. It was from the 1980's but they have found in brain studies now that many times the epilepsy shows up decades later, as did in my case. PS I learned this info at a brain-injury conference. I have confirmed this with on line data but I have no real proof outside of my history. I am not qualified to advise. Just ..02 $
 
Messages
49
Reaction score
0
Points
0
One "benign" lesion "the size of a golf ball" "which is small" on my occipital lobe, some smaller ones around it. Also minor scarring on the left temporal lobe.
 
Top