Howdy...errrrrm...folks. I'm kind of new to this whole scene. I'm a bit nervous, here. I have questions, and would like to hear some experiences. My diagnosis is general onset epilepsy with some focal tendencies... tentatively stated....I may be a bit off in the first part, technically speaking. Basically I was told my seizures start in the deepest part of the brain and work their way outwards....but my EEG indicates focal activity as well....whatever that means. I'm actually currently in the hospital having a video EEG done. It's been....flustering. Finding out that things I've experienced my entire life that I thought were products of either psychiatric disorder or just being a bit dingy were actually seizures.... it's an adjustment. I also have these horrid, awful, wretched jolt, or "zapping" sensations in my head. Sometimes they last all day, occur if every few minutes, mercilessly. The slightest sound worsens them, increases the activity. I was told my my amazing Neuro that these are textbook seizures for my type. But I've never heard of them. They're not really concerning, health wise...just extremely uncomfortable, so it's not something to be aggressively treating. Aside from taking an Ativan to slow them down, there's really nothing to be done. It's actually pretty depressing, for some reason. Being miserable, and knowing there's nothing you and anyone can do about it. I've had these jolt/zap sensations since I was an early teen. I jus didn't know what they were and it's gotten progressively worse the older I get. I was also told I have non epileptic seizures as well. Which of course makes me feel FANTASTIC. Sorry for the super long post...I'm just a bit overwhelmed by it all, and am experiencing a ridiculous array of emotions. Thanks for listening, errrrrm reading. I you have any insight, experience, advice, it would be welcomed.
Hey....new here.
- Thread starter Danniele
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Hi Danniele
Firstly, welcome to CWE. You don't need to feel nervous as we are all in the same situation here so we all understand
It can be alot to take in especially if you are new to epilepsy or in your case where you were dealing with the zapping sensations for so long & not knowing what they were.
Good luck with your VEEG, I sure hope they get answers & your brain 'performs'.
My story is long & I tend to crap on so I'll tell you my story in another post lol
Firstly, welcome to CWE. You don't need to feel nervous as we are all in the same situation here so we all understand
It can be alot to take in especially if you are new to epilepsy or in your case where you were dealing with the zapping sensations for so long & not knowing what they were.
Good luck with your VEEG, I sure hope they get answers & your brain 'performs'.
My story is long & I tend to crap on so I'll tell you my story in another post lol
Apparently I have nocturnal epilepsy...this is all very new to me and very scary.
My seizures have been 6 weeks to 2 months apart so far. They knock the hell out of me and I feel quite depressed for days afterwards. Climbed a mountain with my dog today...climb or go crazy...
My seizures have been 6 weeks to 2 months apart so far. They knock the hell out of me and I feel quite depressed for days afterwards. Climbed a mountain with my dog today...climb or go crazy...
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I've had epilepsy most of my life with a few breaks in between the seizures.
I had my 1st seizure when I was 9 months old which was a tonic clonic & I took tonic clonics until I was 3. I spent the rest of my childhood & teens seizure free & all up was 21 years seizure free until I started having seizures again in May 2002 when I was 24.
When my seizures returned I was diagnosed temporal lobe epilepsy due to scarring on my left temporal lobe which showed up on all MRIs I've had.
After my seizures returned I started having auras/ simple & complex partial seizures with the odd tonic clonic. My auras were a dream like vision which I only remembered when I was having the seizure & the feeling that I wanted to go to the bathroom (but I never lost control of my bladder). After the aura I would go into the complex partial seizure where I would do weird things. I usually didn't remember anything from the aura until I came out of the seizure & often relied on family & friends to tell me what happened.
My neurologist I used to see tried me on a variety of meds Tegretol, Lamictal, Topamax, Keppra & Neurontin. None of these meds controlled my partials so in late 2009 my neurologist said there wasn't much more he couldn't do so suggested I look into having surgery. He referred me to an epiologist in the city who I saw in mid 2010. When I saw the epiologist he went through my complete history of epilepsy & agreed I would be a good candidate for surgery. I then started the process to see if I could have surgery by having a variety of pre surgery tests.
I had my surgery in March 2011, I went 2 years seizure free & was even able to reduce my meds going from 2 meds down to 1 med. But in 2013 I started having funny feelings again. The neurologist I saw at the epilepsy clinic (at the hospital where I had my surgery) adjusted my meds & putting me back on the 2nd med but I still had the funny feelings. My neurologist agreed I was having seizures but as most of the funny feelings I had I've been on my own he could only go on what I told him & the gibberish I wrote after the aura.
In 2015 the neurologist asked me if i'd be happy to have a VEEG so they could try capture my funny feelings on video which help them get a better idea of what type of seizures I was having. I wanted answers as much as the neurologist so was happy for the VEEG. When I had the VEEG even though my meds were reduced & eventually taken off them & I sleep deprived my brain was being stubbern & it took almost a week before I had any funny feelings. But when I did they were able to capture enough good footage to confirm that the funny feelings were auras & I was having focal seizures (pretty much partial seizures).
I am still having seizures but have been working with my neurologist to reduce the seizures by adjusting meds. I am currently on 3 meds Tegretol, Keppra & Zonegran but the seizures have been reducing.
I had my 1st seizure when I was 9 months old which was a tonic clonic & I took tonic clonics until I was 3. I spent the rest of my childhood & teens seizure free & all up was 21 years seizure free until I started having seizures again in May 2002 when I was 24.
When my seizures returned I was diagnosed temporal lobe epilepsy due to scarring on my left temporal lobe which showed up on all MRIs I've had.
After my seizures returned I started having auras/ simple & complex partial seizures with the odd tonic clonic. My auras were a dream like vision which I only remembered when I was having the seizure & the feeling that I wanted to go to the bathroom (but I never lost control of my bladder). After the aura I would go into the complex partial seizure where I would do weird things. I usually didn't remember anything from the aura until I came out of the seizure & often relied on family & friends to tell me what happened.
My neurologist I used to see tried me on a variety of meds Tegretol, Lamictal, Topamax, Keppra & Neurontin. None of these meds controlled my partials so in late 2009 my neurologist said there wasn't much more he couldn't do so suggested I look into having surgery. He referred me to an epiologist in the city who I saw in mid 2010. When I saw the epiologist he went through my complete history of epilepsy & agreed I would be a good candidate for surgery. I then started the process to see if I could have surgery by having a variety of pre surgery tests.
I had my surgery in March 2011, I went 2 years seizure free & was even able to reduce my meds going from 2 meds down to 1 med. But in 2013 I started having funny feelings again. The neurologist I saw at the epilepsy clinic (at the hospital where I had my surgery) adjusted my meds & putting me back on the 2nd med but I still had the funny feelings. My neurologist agreed I was having seizures but as most of the funny feelings I had I've been on my own he could only go on what I told him & the gibberish I wrote after the aura.
In 2015 the neurologist asked me if i'd be happy to have a VEEG so they could try capture my funny feelings on video which help them get a better idea of what type of seizures I was having. I wanted answers as much as the neurologist so was happy for the VEEG. When I had the VEEG even though my meds were reduced & eventually taken off them & I sleep deprived my brain was being stubbern & it took almost a week before I had any funny feelings. But when I did they were able to capture enough good footage to confirm that the funny feelings were auras & I was having focal seizures (pretty much partial seizures).
I am still having seizures but have been working with my neurologist to reduce the seizures by adjusting meds. I am currently on 3 meds Tegretol, Keppra & Zonegran but the seizures have been reducing.
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Hi Danniele, welcome to CWE!
I'm glad you've gotten a diagnosis that makes sense for your symptoms -- that can be a relief in and of itself.
Now that you know what to look for, you might consider is keeping a seizure/symptom diary. It's a good way to see if your seizures are increasing in duration, frequency, and/or kind. That can be helpful when considering treatment. You may not need to "aggressively" treat them now, but if they escalate in any way that can be a warning sign. Untreated seizures have a tendency to lead to more seizures as the paths the take in the brain become "worn in", so you want to make sure to keep them in check if at all possible.
Another potential benefit of a diary is identifying triggers or stressors. You mention sound or noise as one. Other triggers can be things like fatigue or physiological stress. Since your symptoms began in your early teens your seizures might also have a hormonal component (causes by occasional spike in estrogen).
What are the "non-epileptic" seizure symptoms the docs have identified, and how can they be sure that they are non-epileptic? (Often, seizures get tagged as non-epileptic when there's a negative EEG; but a negative EEG doesn't rule out epilepsy, especially if the seizures originate deep in the brain and/or are transient.
I'm glad you've gotten a diagnosis that makes sense for your symptoms -- that can be a relief in and of itself.
Now that you know what to look for, you might consider is keeping a seizure/symptom diary. It's a good way to see if your seizures are increasing in duration, frequency, and/or kind. That can be helpful when considering treatment. You may not need to "aggressively" treat them now, but if they escalate in any way that can be a warning sign. Untreated seizures have a tendency to lead to more seizures as the paths the take in the brain become "worn in", so you want to make sure to keep them in check if at all possible.
Another potential benefit of a diary is identifying triggers or stressors. You mention sound or noise as one. Other triggers can be things like fatigue or physiological stress. Since your symptoms began in your early teens your seizures might also have a hormonal component (causes by occasional spike in estrogen).
What are the "non-epileptic" seizure symptoms the docs have identified, and how can they be sure that they are non-epileptic? (Often, seizures get tagged as non-epileptic when there's a negative EEG; but a negative EEG doesn't rule out epilepsy, especially if the seizures originate deep in the brain and/or are transient.