Living with epilepsy - Introduce yourself & meet others

Posted by Colleen Young @colleenyoung, Dec 7, 2016

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
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.
.

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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…

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@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

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@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.

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@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.

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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

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@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

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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.

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@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.

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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

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@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

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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

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My daughter has been having sezuire' s since she was 11 years .
Since that time we have been through so many Ct scans and have repeatedly been told that no one can understand why she has them.
We have had her medication changed up so many different times it seems so unreal.
The last 3 years her episodes have progressed.
She is no able to work (( X Ray Technician. )
I had heard about a producer which a small electronic devices is incerted into her body which will help to stop her episodes.
Has anyone here had or know someone who has went through the steps and most importantly has it help ?
Thank you in advance

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@kimberly1967

My daughter has been having sezuire' s since she was 11 years .
Since that time we have been through so many Ct scans and have repeatedly been told that no one can understand why she has them.
We have had her medication changed up so many different times it seems so unreal.
The last 3 years her episodes have progressed.
She is no able to work (( X Ray Technician. )
I had heard about a producer which a small electronic devices is incerted into her body which will help to stop her episodes.
Has anyone here had or know someone who has went through the steps and most importantly has it help ?
Thank you in advance

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Hi, @kimberly1967 – welcome to Mayo Clinic Connect. You may have noticed I moved your post to this existing discussion, "Living with epilepsy – Introduce yourself & meet others" so that you can connect with other who have experience with epilepsy themselves or with someone close to them. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be so hard to go through all those scans with no explanation of why your daughter may be having seizures, and also with her episodes progressing. Very difficult she can no longer work in her job with this.

Hoping others in this thread can answer your question about a device to help control seizures. Are you perhaps thinking of vagus nerve stimulation (VNS) https://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/about/pac-20384565?

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@kimberly1967
Good morning,
Oops!, just noticed this didn’t post.
It’s not at all unusual no one knows the cause of your daughters seizures. The vast majority of people have normal CT’s/MRI’s. Most people seem to have some form of Idiopathic Epilepsy.
What type of seizures is she having? What meds has she tried? How often is she having them.
I’m assuming her EEG’s are normal as well. This too is not uncommon. I have nearly constant seizure activity that always registers on the electroencephalogram, thankfully after mostly daily seizures for close to 50 years they are no longer symptomatic. Unfortunately I know what your daughter is going through and how debilitating seizures can be.
As far as devices that reduce, stop or cause seizures to be less severe, it is dependent on the type of seizures.
A device called the RNS is proving to be beneficial in Focal seizure patients. Here is the Neuro Pace website
https://www.neuropace.com/the-rns-system/?gclid=EAIaIQobChMIifSAjbPU4QIVgxh9Ch1y4AJaEAAYASAAEgIlS_D_BwE
The VNS is another option.
Here is Cyberonics website
https://us.livanova.cyberonics.com/healthcare-professionals/about-usa
You may want to review this site before making a definitive decision, The VNS Message board founded by an aquaintance of mine. She and others did a lot of investigative research

I personally refused this device and although I haven’t had a seizure in 6 years, if I were to start having multiple daily seizures again I would still refuse this device. As serious and life threatening as my E has been neither my parents or I have ever considered E surgery. Don’t get me wrong, but both VNS and surgery have had their successes but I suppose I’ve known, seen and read to many horrendous outcomes. Maybe I’m just a coward. Maybe overly cautious but I’ve known, read and heard about too many people who never made it off the table or whose seizures were worse or died years after surgery. One man had no history of Convulsive Status yet 5 years after surgery he died in Status. Others died of S.U.D.E.P. (Sudden Unexpected Death in Epilepsy,) of course no one will ever know for sure about some of these deaths.
I believe doctors, parents and patients alike are overly optimistic about E surgery. Families and patients are often vulnerable due to there desperation for seizure control. I have seen families whose small child had fewer seizures in a year than I did in a day, yet they opted for E surgery and some of their outcomes included worsening seizures, weakness, paralysis. Doctors are not Gods, they don’t always meet their goal of complete control.
I hope your Seizures are soon controlled,
Jake

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Hi, I'm new and I need some questions answered please.
My son is 19 and was diagnosed with absence seizures. He won't take his medicine. He's had 2 grandmals since he was diagnosed. His doctor has told him that it could happen again at anytime, but he still refuses to take them.
I don't know what to do. I get it he's angry, depressed, distant from everyone. I am at my wit's end. He has also had testing done and it shows low levels of his medicine.

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@dragonoma07

Hi, I'm new and I need some questions answered please.
My son is 19 and was diagnosed with absence seizures. He won't take his medicine. He's had 2 grandmals since he was diagnosed. His doctor has told him that it could happen again at anytime, but he still refuses to take them.
I don't know what to do. I get it he's angry, depressed, distant from everyone. I am at my wit's end. He has also had testing done and it shows low levels of his medicine.

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@dragonoma07
Hi there,
Welcome to Mayo Clinic Connect.
I have heard that same situation countless times myself included.
I have had Epilepsy for 52 years.
I think you already know there isn’t much you can do. After all teenager know best, to hear them tell it.
When I was 15 my seizures were severe and uncontrollable. I was an impatient and spoiled brat. I went to every type of doctor and was in UCD, UCSF, Stanford, UCLA etc etc. I had daily Cluster Tonic Clonic Seizures and since no doctor or hospital could offer me any help I figured I knew best. I was in for a rude awakening. I stopped my meds and ended up in the hospital in Convulsive Status Epilepticus. I was put into an induced coma to stop the seizures and was fortunate enough to wake up 8 months later. Although at the time I probably didn’t think I was fortunate. The nurse came in and said your parents are taking you home today. Parents? What parents? I was terrified, who were these people? When I got home my parents had pictures and photo albums out and since I look just like my Dad I must have accepted them lol. When I was woke up every memory I ever had was gone. I didn’t know anything, not even my name. To this day none of those memories ever returned. I was put in about 8-10 comas after that, occasionally with a similar outcome. Not because I stopped my medication again though, I learned my lesson. A lesson I hope no one ever has to learn. But I’ve had friends who have died from Status and even if you tell your son he may reply like I would have, back in the day, “it won’t happen to me.” He should thank God he doesn’t have a more severe form Epilepsy. How old was he when he developed the absences? Where they ever controlled? IF, he continues to refuse his meds he will be at an increased risk of SUDEP (Sudden Unexpected Death In Epilepsy) since he is now having Tonic Clonic Seizures. He could have Nocturnal Seizures sometime so as a precaution I’d invest in a seizure pillow. Some people have suffocated using regular pillows during a Nocturnal Seizure. (Warning, they aren’t very comfortable. At least they didn’t use to be.)
Does he drive?
I wish I had an answer for you but I’ve never been a parent. I’d probably cram them down his throat somehow. I wonder if a pharmacy, perhaps a Compounding Pharmacy could formulate a liquid that would be tasteless that you/someone could put in his drink. I’m sorry I don’t have the answers you need so badly.
Wishing you all the best,
Jake

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@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.

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My daughter's neurologist just added this medicine to her meds she's been on for 8 years. It really seems to be affecting her badly. She's 15, we started half a 500mg twice daily on Sunday. Monday I had to go pick her up from school around 10because she was extremely dizzy. She is adhd, doesn't slow down much but she missed school Tuesday and Wednesday and laid on a mat most of Thursday and Friday. Her doctor doesn't seem concerned and I've always valued his opinion but I'm not so sure if he's right with this partial medicine. Did you adjust to it easily?

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