Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@jakedduck1

@nadinen
I was working on a reply to you but wanted to say a little something regarding your fear.
But first I have had over 13,300 seizures in my life. You absolutely cannot live your life in fear of the next one. YOU CAN’T! Fear can be very destructive, don’t allow it to be. It’s a total waste of time and effort to worry about things you have NO control over. Besides, what good does it do? Let me answer that for you, IT DOES NO GOOD. Did you ever think of the harm your worrying may do? It’s even possible your may be causing some of your own seizures. That theory isn’t as far fetched as you May be thinking right now. Fear, worry, stress, anxiety have been proven to be major seizure triggers. You need to enjoy your life. Live your life with gusto.
Sure you need to be cautious of certain things. If you have Tonic clonic Seizures you shouldn’t take a bath without someone with you. In the shower you should have a thermostat installed so you don’t accidentally scald yourself. Always have someone with you when swimming. Using elevators instead of stairs. Just go out there and live your life like every day is the first day of the rest of you life and if you have a seizure so be it. Shake it off and move on.

Jump to this post

Yes i understand. When i was in my teenage years if i was to have a seizure i would only have one in that day and thats it!

I believe when i had 3 in one day the last two were from shock and fear! Auras got so heavy and i believe i literally tricked myself to have a seizure. It was traumatizing. So now definitely i have learned to stay positive because like u said it does no good to be fearful.

Liked by Leonard

REPLY
@nadinen

The problem is i have had mri and eeg and no results..ever.. nothing ever shows..

I even did a sleep deprived eeg.

I am worried to do these again and be told i am just hallucinating or have anxiety..

I am tegratol i think it is controlling the seizures very well but the auras.. maybe i should change my drug? However i am too scared to try this

Did they tell u a aura is a seizure… or could these be side affects from medications.. i am very lost, i just want answers 🙁

Jump to this post

Me too. I had years of these same tests with no results, I understand how you are feeling. I was so angry with the medical world.
Is there something that you know will cause these auras?
When I was at Mayo, they listened to everything I was saying, hooked me up to an eeg 24/7 and recreated situations best they could to bring on an aura or seizure. Took a couple of days. That’s how they were able to capture it.
They said an aura is essentially a warning that a seizure might occur. It is not a seizure in itself.
Have you gone elsewhere to get another opinion? I actually went to Mayo for a long time without ever discovering anything and being told I had anxiety. I kept pushing them and they finally set up appointments with neurologists that found out what was happening. You have to be your own advocate, be strong and positive. They aren’t experiencing what you are and rely on tests to disprove you. I actually broke down crying in the doctors office one time with both the doctor and nurse in there. I told them I felt this would never be solved; the nurse told me they wouldn’t stop until it was solved. That was the turning point for me.
I also have heart problems, a very fast heart rate. Just a couple years ago I was in a cardiologists office with him telling me that it was anxiety. The next day I went back and told him I wanted another opinion. He relented and sent me to a doctor specializing in fast heart rates. That doctor confirmed what I was telling him, treated me for a fast heart rate which is still under control today.
Sorry for the long response. Just sayin that being your own advocate helps.

Liked by Leonard

REPLY
@bonnieh218

Me too. I had years of these same tests with no results, I understand how you are feeling. I was so angry with the medical world.
Is there something that you know will cause these auras?
When I was at Mayo, they listened to everything I was saying, hooked me up to an eeg 24/7 and recreated situations best they could to bring on an aura or seizure. Took a couple of days. That’s how they were able to capture it.
They said an aura is essentially a warning that a seizure might occur. It is not a seizure in itself.
Have you gone elsewhere to get another opinion? I actually went to Mayo for a long time without ever discovering anything and being told I had anxiety. I kept pushing them and they finally set up appointments with neurologists that found out what was happening. You have to be your own advocate, be strong and positive. They aren’t experiencing what you are and rely on tests to disprove you. I actually broke down crying in the doctors office one time with both the doctor and nurse in there. I told them I felt this would never be solved; the nurse told me they wouldn’t stop until it was solved. That was the turning point for me.
I also have heart problems, a very fast heart rate. Just a couple years ago I was in a cardiologists office with him telling me that it was anxiety. The next day I went back and told him I wanted another opinion. He relented and sent me to a doctor specializing in fast heart rates. That doctor confirmed what I was telling him, treated me for a fast heart rate which is still under control today.
Sorry for the long response. Just sayin that being your own advocate helps.

Jump to this post

Im really not sure the triggers.. did u know your triggers and what is your aura?
I tried avoiding certain foods but nothing workes..im pretty sure im underweight now from being paranoid to certain things ( thanks to google)

Liked by Leonard

REPLY

Most people with Epilepsy who have an EEG many don’t have activity during their test so it comes out normal. Mine are always abnormal. I haven’t had a lot of Focal Aware Seizures and the ones I had were never a precursor to a Tonic Clonic. I never knew of any triggers. Had seizures in in every conceivable place and every imaginable situation.
Congratulations on your positive attitude, a definite plus. Overcoming fear can be a difficult challenge but as you found out its possible to conquer.
You may ask your Neuro if Depakote is a viable option to control the Focal Aware Seizures.
Best of luck to you,
Jake

REPLY
@jakedduck1

Most people with Epilepsy who have an EEG many don’t have activity during their test so it comes out normal. Mine are always abnormal. I haven’t had a lot of Focal Aware Seizures and the ones I had were never a precursor to a Tonic Clonic. I never knew of any triggers. Had seizures in in every conceivable place and every imaginable situation.
Congratulations on your positive attitude, a definite plus. Overcoming fear can be a difficult challenge but as you found out its possible to conquer.
You may ask your Neuro if Depakote is a viable option to control the Focal Aware Seizures.
Best of luck to you,
Jake

Jump to this post

My focal aware/aura is the beginning of the tonic clonic..thats why it is frustrating
It can vary to all day for a few days then go away slowly or not come for a few days or even just a few times in the afternoon or even when i wake..i feel them in my sleep sometimes.. i used to wake up to a seizure into a tonic clonic aseell..

Anyways what makes you suggest depakote
Have you tried this?

Liked by Leonard

REPLY
@nadinen

Im really not sure the triggers.. did u know your triggers and what is your aura?
I tried avoiding certain foods but nothing workes..im pretty sure im underweight now from being paranoid to certain things ( thanks to google)

Jump to this post

@nadinen I have a hard time describing my auras. They happen in my stomach. As I look back on things and after reading and research I can understand why doctors said I had anxiety, what I was saying sounded just like all the symptoms of anxiety. There really was no pattern as to when they happened, anytime of the day or night. So, I kept a diary of all my activity prior to each one happening.
After doctors and technicians reading that and then having me stay inpatient at the epilepsy center they tried to replicate all things I was doing that they thought were significant. I still don’t understand if they were able to trigger one or if I was just incredibly lucky that they were able to record one.
Anything is worth a shot. Is there an epilepsy center near you? Maybe by writing down all your activity you might see a pattern and doctors might be able to capture some activity. This will require a great deal of patience but it might pay off.

Liked by Leonard

REPLY

@nadinen
Yes, I’ve been on Depakote but I was thinking of Absence seizures and writing about Focal Aware seizures. Between hundreds of thousands of seizure pills and so many seizures it’s a miracle my brain functions at all lol. Sorry for the confusion.
1) carbamazepine (Tegretol)
2) lamotrigine (Lamictal)
3) valproate (Depakote)
4) oxcarbazepine (Trileptal)
5) gabapentin (Neurontin)
6) topiramate (Topamax)
I refuse to take Topamax, better known by some Epilepsy patients as Dope-a-max including myself.
These are some of the supposedly best meds for Focals. Although some newer ones might head the list now. Older drugs have always worked better for me and a lot of people I know.
Neurontin never phased me and I took the recommended max dose (34 or 3600mg) I know a man on over 7,000mg but he’s stopping it to, to much med for to little help.
I take Carbatrol (A brand name of extended release carbamazepine) and Phenobarbital, which has been around for 107 years. I haven’t had an Absence or Focal in eons and haven’t had a Tonic clonic for 6 years.
My Neurologist refuses to give anyone regular Tegratol because he claims the serum level fluctuations are too great.
.

REPLY

@nadinen
Have you ever considered the RNS? Check it out.

https://www.neuropace.com/?utm_expid=113899019-0.syyhvPhVT8ikFCsTQQAxAA.0

Jake

REPLY
@bonnieh218

@nadinen I have a hard time describing my auras. They happen in my stomach. As I look back on things and after reading and research I can understand why doctors said I had anxiety, what I was saying sounded just like all the symptoms of anxiety. There really was no pattern as to when they happened, anytime of the day or night. So, I kept a diary of all my activity prior to each one happening.
After doctors and technicians reading that and then having me stay inpatient at the epilepsy center they tried to replicate all things I was doing that they thought were significant. I still don’t understand if they were able to trigger one or if I was just incredibly lucky that they were able to record one.
Anything is worth a shot. Is there an epilepsy center near you? Maybe by writing down all your activity you might see a pattern and doctors might be able to capture some activity. This will require a great deal of patience but it might pay off.

Jump to this post

What happens when they do catch an aura… i mean do they change your meds or they just confirm u have epilepsy?
Sorry but i hope they catch it on eeg but do more than just confirm i have epilepsy when i already know that..hope i make sense?

But yes i definitely need to go to an epilepsy centre as ive actually never been… ive only been to neurologists but not epilepsy specialists

Liked by Leonard

REPLY
@jakedduck1

@nadinen
Yes, I’ve been on Depakote but I was thinking of Absence seizures and writing about Focal Aware seizures. Between hundreds of thousands of seizure pills and so many seizures it’s a miracle my brain functions at all lol. Sorry for the confusion.
1) carbamazepine (Tegretol)
2) lamotrigine (Lamictal)
3) valproate (Depakote)
4) oxcarbazepine (Trileptal)
5) gabapentin (Neurontin)
6) topiramate (Topamax)
I refuse to take Topamax, better known by some Epilepsy patients as Dope-a-max including myself.
These are some of the supposedly best meds for Focals. Although some newer ones might head the list now. Older drugs have always worked better for me and a lot of people I know.
Neurontin never phased me and I took the recommended max dose (34 or 3600mg) I know a man on over 7,000mg but he’s stopping it to, to much med for to little help.
I take Carbatrol (A brand name of extended release carbamazepine) and Phenobarbital, which has been around for 107 years. I haven’t had an Absence or Focal in eons and haven’t had a Tonic clonic for 6 years.
My Neurologist refuses to give anyone regular Tegratol because he claims the serum level fluctuations are too great.
.

Jump to this post

What is your focal like if u dont mind me asking..im confused om weather to call my problem a focal or an aura..

Anyways what do u mean about the tegratol serum levels…

Somthing interesting happened..my new neurologist seemed not to understand why my blood levels came back as 4.9 on a daily 500mg dose of tegratol
And monthes before that i had a 4.9blood test result on daily 200mg dose

So he made me feel as if i cheated my results and said there is no way a 200 mg dose can result this which made me feel like he doesnt know what hes talking about…

Liked by Leonard

REPLY
@nadinen

What happens when they do catch an aura… i mean do they change your meds or they just confirm u have epilepsy?
Sorry but i hope they catch it on eeg but do more than just confirm i have epilepsy when i already know that..hope i make sense?

But yes i definitely need to go to an epilepsy centre as ive actually never been… ive only been to neurologists but not epilepsy specialists

Jump to this post

@nadinen when they caught an aura on the eeg they discovered that what was perceived as an aura was actually another type of seizure. They did then change my treatment plan with new meds.
All along I thought I was having an aura and it was actually a seizure.
An aura is often called a warning and it indeed is just that. But sometimes, as I have learned, an aura might actually be a simple seizure. So maybe catching what we are thinking is just an aura on an eeg might give us different information and send us down a different treatment path. Also, doctors may be able to identify in which part of the brain seizure activity is originating which, I believe, also changes treatment.
Just more thoughts to ask your doctor about and if it might apply to you in any way.

Liked by Leonard

REPLY
@bonnieh218

@nadinen when they caught an aura on the eeg they discovered that what was perceived as an aura was actually another type of seizure. They did then change my treatment plan with new meds.
All along I thought I was having an aura and it was actually a seizure.
An aura is often called a warning and it indeed is just that. But sometimes, as I have learned, an aura might actually be a simple seizure. So maybe catching what we are thinking is just an aura on an eeg might give us different information and send us down a different treatment path. Also, doctors may be able to identify in which part of the brain seizure activity is originating which, I believe, also changes treatment.
Just more thoughts to ask your doctor about and if it might apply to you in any way.

Jump to this post

Well im happy for you that they caught the aura .. what medication are you on? And have u ever taken tegratol before..
Do u have any aura now?
Thank u very much for your replies

Liked by Leonard

REPLY
@nadinen

Well im happy for you that they caught the aura .. what medication are you on? And have u ever taken tegratol before..
Do u have any aura now?
Thank u very much for your replies

Jump to this post

I am on Levetiracetam, which is the generic for Keppra, 500 mg twice a day. This works for me. No auras now.
I have taken Tegretol before. It didn’t work for me.

Liked by Leonard

REPLY
@bonnieh218

I am on Levetiracetam, which is the generic for Keppra, 500 mg twice a day. This works for me. No auras now.
I have taken Tegretol before. It didn’t work for me.

Jump to this post

I would like to try this but worried of a risk of a big seizure or increase of auras

I wonder if it can be taken with tegratol in a smaller dose maybe
I will have to ask a neurologist

Liked by Leonard

REPLY
@nadinen

I would like to try this but worried of a risk of a big seizure or increase of auras

I wonder if it can be taken with tegratol in a smaller dose maybe
I will have to ask a neurologist

Jump to this post

Although Keppra wouldn't be my first choice, however; if you used it as an add-on drug I wouldn't worry about having additional Auras or a Tonic-Clonic since your still on Carbamazepine. I'd be curious what add-on drug your Neurologist recommends.
Best of luck,
Jake

REPLY
Please login or register to post a reply.