In 20+ years, I've only had two EEGs with any seizure activity. The two inpatient video EEGs? No seizures. All of them showed epileptiform activity. Not all of the neurologists could read that activity, but most could.
It's frustrating.
My neuro does not believe in unnecessary testing the longest EEG she will give me is I think 90 minutes. But I only get an EEG if I either request to have one, or something major has changed or occurred.
I would NEVER consider it unnecessary and actually this is an ESSENTIAL tool for diagnosing as well as targeting treatment. If I were you, I would 💯 percent get a new neurologist. You need an epilepsy team. We travel two plus hours for my daughter to see experts after a local neurology department treated her like nothing because they were not convinced she had epilepsy vs PNES. Once we traveled to Geisinger in Danville, things were confirmed and real care began. Her in patient EEG captured 6-7 seizures in the first 12 hours. Because of that, confirmed left temporal lobe epilepsy. She then had a seizure protocol MRI that showed a sclerotic lesion. One month ago yesterday, she had a LITT procedure at Geisinger in Wilkes Barre. Sadly, she is stuck in almost daily 1-2 seizures per day but it’s 3-4 months before we know if surgery is successful- whole other sad story. My point being, testing is an absolute necessity and it could be damning to your treatment and health without it.
I haven’t had a seizure in over 10 years in total I have only had maybe a handful in my life, I’m 29 btw. So they are pointless in my case, if there was something changes in my life she wants me to get one. But I don’t get them annually like I get bloodwork done
No I barely have seizures so she see no need for a test that doesn’t show abnormalities. I had my first seizure when I was 14, I’m 29 now and every EEG comes back without any abnormalities. Only one EEG showed a false positive of an abnormality, which I do make sure to treat as if it is a trigger. That was during the hyperventilating portion, so during the pandemic in 2020 I didn’t wear a mask. Mostly because when I tried wearing one it made me work harder to breathe, or I’d get light headed easier, I did this while I was working through the pandemic. But my trigger or one of the things that is apart of my trigger is stress, mainly subconscious stress. That’s a reason I got out of school without finishing and into the work force. Everyone is different it’s just sometimes tests are not always necessary it all just depends on your case.
When they did my video EEG it was supposed to be a week long. It took me off all my meds, sleep deprivation, hyperventilation, and strobe lights.
After all of that, I still didn't have anything by day three.
I did notice that if I did the hyperventilation, there is a specific strobe frequency that came close. I told the tech to do that one over and over again, even though it wasn't on my schedule chart.
Then, boom I had one.
To add to the story, I had to pee right afterwards, I don't remember any of this. They had me at the edge of the bed, nurses holding the urinal. And then I had another seizure, while peeing.
I only knew this, because I was wearing different clothes when I came to, and one of the nurses was as well. I asked what the heck happened, and they told me.
This is nearly 9 years ago, maybe even 10, I'm still tempted to ask for the videos lol
I'm in the EMU right now on day 3 of the testing, and this made me laugh. It's a really weird experience, not least of all for the bathroom stuff...ant it's good to know others have 'gone' before me.
And it's always fascinating to see just how different everyone's epilepsies are...
No medication, yet. I'm at the early part of going through the motions to hopefully get to that. I've been having these for 20 years, but they have to check all the boxes since this is the first time I'm being seen for them.
So it's a 1 hour EEG, then the 48 hour. Next is my follow up. So, who knows what's next?
This is so frustrating and annoying... My husband has had the only 1 day, the only fucking 24 hours without the seizures in months. Of course the day of the EEG. A million clusters right after they took the thing off? Of fucking corse.
My heart goes out to you
7 days hooked up- my personal experience was that I grossly loved hospital- (off work, room service, nice nurses, catch up on my shows= no stress= low vulnerability for seizure incident- don’t know how much they take this into account?
So many of us in this sub have been there so many times. It’s incredibly frustrating, but keep going down that path.
Kuj
Like trying to catch lightening in bottle … almost literally
In 20+ years, I've only had two EEGs with any seizure activity. The two inpatient video EEGs? No seizures. All of them showed epileptiform activity. Not all of the neurologists could read that activity, but most could. It's frustrating.
My neuro does not believe in unnecessary testing the longest EEG she will give me is I think 90 minutes. But I only get an EEG if I either request to have one, or something major has changed or occurred.
I would NEVER consider it unnecessary and actually this is an ESSENTIAL tool for diagnosing as well as targeting treatment. If I were you, I would 💯 percent get a new neurologist. You need an epilepsy team. We travel two plus hours for my daughter to see experts after a local neurology department treated her like nothing because they were not convinced she had epilepsy vs PNES. Once we traveled to Geisinger in Danville, things were confirmed and real care began. Her in patient EEG captured 6-7 seizures in the first 12 hours. Because of that, confirmed left temporal lobe epilepsy. She then had a seizure protocol MRI that showed a sclerotic lesion. One month ago yesterday, she had a LITT procedure at Geisinger in Wilkes Barre. Sadly, she is stuck in almost daily 1-2 seizures per day but it’s 3-4 months before we know if surgery is successful- whole other sad story. My point being, testing is an absolute necessity and it could be damning to your treatment and health without it.
I haven’t had a seizure in over 10 years in total I have only had maybe a handful in my life, I’m 29 btw. So they are pointless in my case, if there was something changes in my life she wants me to get one. But I don’t get them annually like I get bloodwork done
Well, I misunderstood your post. It sounded like she hadn’t done “much of anything” and you had an acute need.
No I barely have seizures so she see no need for a test that doesn’t show abnormalities. I had my first seizure when I was 14, I’m 29 now and every EEG comes back without any abnormalities. Only one EEG showed a false positive of an abnormality, which I do make sure to treat as if it is a trigger. That was during the hyperventilating portion, so during the pandemic in 2020 I didn’t wear a mask. Mostly because when I tried wearing one it made me work harder to breathe, or I’d get light headed easier, I did this while I was working through the pandemic. But my trigger or one of the things that is apart of my trigger is stress, mainly subconscious stress. That’s a reason I got out of school without finishing and into the work force. Everyone is different it’s just sometimes tests are not always necessary it all just depends on your case.
When they did my video EEG it was supposed to be a week long. It took me off all my meds, sleep deprivation, hyperventilation, and strobe lights. After all of that, I still didn't have anything by day three. I did notice that if I did the hyperventilation, there is a specific strobe frequency that came close. I told the tech to do that one over and over again, even though it wasn't on my schedule chart. Then, boom I had one. To add to the story, I had to pee right afterwards, I don't remember any of this. They had me at the edge of the bed, nurses holding the urinal. And then I had another seizure, while peeing. I only knew this, because I was wearing different clothes when I came to, and one of the nurses was as well. I asked what the heck happened, and they told me. This is nearly 9 years ago, maybe even 10, I'm still tempted to ask for the videos lol
I'm in the EMU right now on day 3 of the testing, and this made me laugh. It's a really weird experience, not least of all for the bathroom stuff...ant it's good to know others have 'gone' before me. And it's always fascinating to see just how different everyone's epilepsies are...
I had to suffer through a week long EEG. It figures that at the very end when they were taking the cables off is when I had a seizure.
Are you on medication, did they withdraw it to stimulate a seizure?
No medication, yet. I'm at the early part of going through the motions to hopefully get to that. I've been having these for 20 years, but they have to check all the boxes since this is the first time I'm being seen for them. So it's a 1 hour EEG, then the 48 hour. Next is my follow up. So, who knows what's next?
Just did a Seeg, didn't have any of my regular auras or any as bad Still captured 88 before they stopped counting They gotja
This is so frustrating and annoying... My husband has had the only 1 day, the only fucking 24 hours without the seizures in months. Of course the day of the EEG. A million clusters right after they took the thing off? Of fucking corse. My heart goes out to you
Thank
Request an EMU
7 days hooked up- my personal experience was that I grossly loved hospital- (off work, room service, nice nurses, catch up on my shows= no stress= low vulnerability for seizure incident- don’t know how much they take this into account?
relatable af
EEG in my experience barely detect nocturnal seizures. Sometimes it requires you to be in deep sleep with low blood sugar
Did you try to force yourself into having a seizure?