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?

@lisalucier

Hi, @mmas – how are things with your daughter? Did you end up doing another increase with her cannabidiol (Epidiolex)?

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Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

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This week's member spotlight is for one of our most active members @jakedduck1. He's always willing to offer his support and share some laughs.

Transforming stigma to acceptance: Meet @jakedduck1
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/transforming-stigma-to-acceptance-meet-jakedduck1/

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Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

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@dap

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

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Hello, @dap – it sounds as though your husband had been through a lot. That's very difficult that seizures and the medications for them are compromising his quality of life now.

I'm hoping that Connect members like @crstyday40 @jakedduck1 @dawn_giacabazi @jenniferhunter and others may have some input related to the seizures and effects of the medications he's taken for control.

Have you heard back from the hospital? If so, how did they want to proceed?

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@dap

Hello, I am writing on behalf of my husband, who has had 6 seizures after a stroke at age 74. He is 77 now, and was doing pretty well, except for a seizure about every three months. The stroke was in his right hemisphere, temporal and parietal. He had an abnormality in that his language center is located on the right side, even though he is left handed. He almost fully recovered from the stroke, with aphasia being the most resistant to therapy. It is the seizures, and the medications for them, that are severely affecting his quality of life.

Does anyone have any experience to report on being on Keppra 2500mg./day, Lamotrigine 50 mg./day, and Vimpat 200 mg/day? He was on Keppra 3000 mg/day after the first thee seizures, and then after the fourth, the neurologist at a hospital in Boston added the Lamotrigine and the Vimpat. He was found to be at toxic level on the Keppra when they started to slowly reduce the dosage and he had the most recent seizure. His cogntition, mood, gait, balance and ability to function are now severely compromised. I know it is important to not have any more brain tissue damaged, but this state is not sustainable for him. I sent in a mesage via the hospital portal asking if they could at least do a level, or look at the combination. I know any reduction in dose is also a possible trigger for a breakthrough seizure. Any information would be appreciated. Thanks in advance!

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@dap
You made a statement I’d like to briefly address.
“I know any reduction in dose is also a possible trigger for a breakthrough seizure.” Although I generally agree with your premise that statement is not always true. I’ve known some people who lowered their medication and either reduced and one mans seizures stopped.
Cognitive, mood, gait and balance problems are side effects of his medications. I have known countless people who discontinued Keppra due to mood issues, most often women. I’ve been on Anticonvulsants for 52 years, when I walk down the sidewalk I sway from the street to people’s lawns. I also fall occasionally. You mentioned he’s having “Ability to function” issues. Are you talking about his Functional abilities like activities of daily living? For instance,
Walking, Talking, Eating, Dressing, Bathing, Drinking or more cognitive problems like Memory, speech, vision, making decisions, solving problems. I assume he’s having Tonic Clonic Seizures. If not could you describe them.
Take care,
Jake

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@mmas

Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

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Hi, @mmas – wondering how your daughter is doing with her increased oxcarbazepine (Trileptal) recently? How did her summer neuro appointment go?

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@jakedduck1

@dap
You made a statement I’d like to briefly address.
“I know any reduction in dose is also a possible trigger for a breakthrough seizure.” Although I generally agree with your premise that statement is not always true. I’ve known some people who lowered their medication and either reduced and one mans seizures stopped.
Cognitive, mood, gait and balance problems are side effects of his medications. I have known countless people who discontinued Keppra due to mood issues, most often women. I’ve been on Anticonvulsants for 52 years, when I walk down the sidewalk I sway from the street to people’s lawns. I also fall occasionally. You mentioned he’s having “Ability to function” issues. Are you talking about his Functional abilities like activities of daily living? For instance,
Walking, Talking, Eating, Dressing, Bathing, Drinking or more cognitive problems like Memory, speech, vision, making decisions, solving problems. I assume he’s having Tonic Clonic Seizures. If not could you describe them.
Take care,
Jake

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Hello, and thanks for responding. His first seizure, at 5 months after his stroke, was a really bad grand mal. Each seizure had an aura where he sees red overlay over his vision. The second and third seizures were him just fading out after the aura- no convulsions, but his head and eyes got torqued to the left and his pupils were extremely to the left as well. He has had Todd’s paralysis after the last three seizures. He becomes unconscious for a couple days in the post-ictal stage. It takes weeks to have him come close to baseline. Each time he seems to have more and more setbacks with gait, ADLs, and aphasia, (which he always has had since the stroke). The ability to function is in some ways global- like not being able to remember how to fasten his watch band, remembering where things are in the house, putting on his clothes backward, and not being able to construct logical thought processes. He has not been able to read for pleasure since the stroke and of course, cannot drive. The mood swings are really awful. He is kind of flat most of the time but occasionally gets really angry and feels like breaking things or expresses desire to jump out of the car if we go over a bridge. This is so unlike him, ever, and has only been happening for the last month. (The most recent seizure started on 8/27.)

I just heard back from the neurologist about an hour ago, via the portal. She wants him to continue increasing his Lamictal from the 25 bid to 150 bid. She said he probably won’t need to be on all three medications forever, and maybe the Vimpat can be dropped, and that after we get the new neurologist (we have no appointment with the local one, who is an epilepsy specialist) until December 6. We live in a rural area with no neurologist at the local hospital. I don’t know if this can go on like this until then. He is on the waiting list for a cancellation. I think one option would be to drive to a nearby city where he was inpatient twice and go to the emergency room. It seems like any adjustment may take time? He is extremely averse to hospitals in general- probably because of the aphasia, which so many providers just don’t understand, and think he has dementia instead.

After reading more of the postings on the Mayo site, it is sobering to see how many people face so many hurdles to being seizure free. Any help is appreciated and I respect the experiences you have been through in your own life, and the breadth of your knowledge.

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Name = Passang Norbu Sherpa
Age =29/ male
County = Bhutan
I am suffering from epilepsy more than 20 years more and panic attacks too, but due to my poor family background I could not get treatment from start.I start my treatment only when I was at the age of 24. I also attain counselling but could not continue. But I am taking my medicines on time but…….

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@passang

Name = Passang Norbu Sherpa
Age =29/ male
County = Bhutan
I am suffering from epilepsy more than 20 years more and panic attacks too, but due to my poor family background I could not get treatment from start.I start my treatment only when I was at the age of 24. I also attain counselling but could not continue. But I am taking my medicines on time but…….

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@passang
Hello Passang,
Welcome to Mayo Clinic’s Connect.
I’m sorry to hear you too have Epilepsy. What kind of seizures do you have and how often? What meds are you taking?
Bhutan is a very picturesque place.
Take care,
Jake

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@jakedduck1

@passang
Hello Passang,
Welcome to Mayo Clinic’s Connect.
I’m sorry to hear you too have Epilepsy. What kind of seizures do you have and how often? What meds are you taking?
Bhutan is a very picturesque place.
Take care,
Jake

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Thank you for welcoming me, yes I too have Epilepsy plus panic attacks. But I don't know what kind of epilepsy is it. Most of the time I get headaches, dizziness, scary and after that my eye gets blur. Unable to breath and loss the body control after that I don't know what happened to me. When I get to my sense my mouth will be wounded and tongue bitten.
Medicine =
1. Sodium Valporite 400mg
2. Phenytoin 300mg
3. Amitriptyline 75mg
4. Vit B & C and
5. Propranolol 20mg
are my treatment till now.suggest me what should I have to do?
PLEASE HELP ME!
As our country is small and under-development it is hard to understand

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@passang

Thank you for welcoming me, yes I too have Epilepsy plus panic attacks. But I don't know what kind of epilepsy is it. Most of the time I get headaches, dizziness, scary and after that my eye gets blur. Unable to breath and loss the body control after that I don't know what happened to me. When I get to my sense my mouth will be wounded and tongue bitten.
Medicine =
1. Sodium Valporite 400mg
2. Phenytoin 300mg
3. Amitriptyline 75mg
4. Vit B & C and
5. Propranolol 20mg
are my treatment till now.suggest me what should I have to do?
PLEASE HELP ME!
As our country is small and under-development it is hard to understand

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Hi, @passang. I'd like to join @jakedduck1 in welcoming you to Mayo Clinic Connect.

Since you mentioned you have epilepsy and panic attacks, I wanted to offer some Mayo Clinic information on these. Perhaps the one on epilepsy will shed some light for you on what type of seizures you may have.

– On epilepsy https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093

– On panic attacks and panic disorder https://www.mayoclinic.org/diseases-conditions/panic-attacks/symptoms-causes/syc-20376021

As we are not medical professionals, we can't suggest treatments. However, we connect patients who have similar disease circumstances. We find members are very supportive of one another as well as often provide some useful insights, as they have "been there." Please meet these members and others in this discussion who have been talking about epilepsy in themselves or a loved one, such as @dap @bruceg @mmas @pamelastewart5 @1634517678. I'd also like to introduce you to @dawn_giacabazi and @johnbishop, who also may have some input for you as you seek some answers about what kind of epilepsy you have and how it might best be treated.

How have the medications you've used so far worked for managing your symptoms, passang?

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Hello @passang, I would like to add my welcome to Connect along with @lisalucier and other members. There is a lot of good information on the Epilepsy Foundation's website that may be helpful for you. The one thing I saw that stood out to me that might be helpful is a Seisure Response Plan. Here is the page on their website that discusses making a plan to help or track the seizures.

Seizure Response Plans 101
https://www.epilepsy.com/learn/managing-your-epilepsy/seizure-response-plans-101

Have the medications you are taking reduced or helped with the seizures?

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