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

@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

Jump to this post

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.

Liked by Leonard, passang

REPLY

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…….

Liked by Leonard

REPLY
@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…….

Jump to this post

@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

Liked by passang

REPLY
@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

Jump to this post

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

Liked by Leonard

REPLY
@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

Jump to this post

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?

Liked by Leonard

REPLY

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?

REPLY
@dap

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.

Jump to this post

Hi, @dap – how is your husband doing this week so far? How are things going with the mood swings you were describing?

REPLY
@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

Jump to this post

@passang
It sounds like your having Tonic Clonic (old term is Grand Mal) Seizures since your bitting your tongue. Do you sleep afterwards or are you tired, aching or confused? Possible Focals but not enough info for an educated guess. There are Focal Seizures consistent with some of your symptoms.
Are you still having seizures? Are you having fewer seizures since you began taking your medicine?
Have you had an EEG or an MRI or CT scan? If you’ve had any EEG’s have they been normal or abnormal?
Another thing I’m concerned about is if your seizures could be caused by Psychological reasons and are possibly Psychogenic Non-Epileptic Seizures.
Here is an article about Focal Seizures (Partials) that may appear to be Panic Attacks.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1118775/#!po=2.63158

If you read about Epilepsy you’ll probably see most references mention 3 phases, however in my opinion there are 4. Not everyone experiences Auras (Phase 2) and even
fewer experience Prodroma (Stage 1)
Many supposed experts

(Phase 1.) PRODROMAL
These symptoms happen minutes to days before a seizure and can vary between people and seizure type. They can include among others, headache, Irritability, Depression, Insomnia, agitation,
Concentration issues, Lightheadedness, Vertigo, Dizziness, Mood changes, Overly tired, Intestinal or Urological symptoms.

Phase 2. AURA

Not everyone has Auras. I’ve had over 13,000 seizures and have never had one. They can include, sudden weird light, smell, taste, thoughts, deja vu, blurriness

Phase 3. ICTAL (actual seizure

Absence
Focal
Tonic Clinic
Tonic
Clonic
Myoclonic

Phase 4. POST ICTAL

The postictal state is the altered state of consciousness after an epileptic seizure. It typically lasts between 5 and 30 minutes, but can last hours to days in more severe seizures, and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine, and other disorienting symptoms.

Are you seeing a Neurologist or Psychiatrist?
Best of luck,
Jake

REPLY
@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

Jump to this post

@passang
I would recommend a MedicAlert bracelet over a Seizure Response Plan. The bracelet is easier to spot and is capable of more information and it’s always with you.
Any information wherever it is certainly is better than none.
Jake

REPLY

Hello everyone,

I'd like to invite you to join us today, Monday, October 28 at 11:30 a.m. CT for a video Q&A with Dr. Alfredo Quinones-Hinojosa, Chair, Neurosurgery, and Dr. Anthony Ritaccio, neurologist, about epilepsy. Drs. Quinones and Ritaccio will answer questions during the broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/ for details, and to post your questions.

Return to this webpage, https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/ to take part in the video Q&A live on October 28 at 11:30 a.m. CT. It will also be archived on this page.

REPLY

For many years I was experiencing vertigo. As I got older it got more frequent and for longer durations. About three years I went through all sorts of testing to see what is causing it. The final test was an EEG. I was diagnosed with partial complex seizure disorder presenting as Vertiginous Epilepsy. Since then I have been being treated with 150m x2 of Vimpat. I have had two Clonic Tonic seizures that I went to the hospital for. Each EEG I have still presents seizure activity. I have an appointment to see my doctor in two weeks. I’m wondering if I should talk to him about other treatment options? Is this a controllable disorder by diet and other natural methods, such as sleep, etc.? Any experience/ advice?

Liked by Leonard

REPLY
@debirwin

For many years I was experiencing vertigo. As I got older it got more frequent and for longer durations. About three years I went through all sorts of testing to see what is causing it. The final test was an EEG. I was diagnosed with partial complex seizure disorder presenting as Vertiginous Epilepsy. Since then I have been being treated with 150m x2 of Vimpat. I have had two Clonic Tonic seizures that I went to the hospital for. Each EEG I have still presents seizure activity. I have an appointment to see my doctor in two weeks. I’m wondering if I should talk to him about other treatment options? Is this a controllable disorder by diet and other natural methods, such as sleep, etc.? Any experience/ advice?

Jump to this post

I understand what you are saying. I have had quite a few LOC due to migraines and now I have a pinched nerve in my neck that I have to be careful with. However, I would definitely ask your neurologist and/or primary care physician regarding a diet that may help as well as meds.

Liked by Leonard

REPLY
@debirwin

For many years I was experiencing vertigo. As I got older it got more frequent and for longer durations. About three years I went through all sorts of testing to see what is causing it. The final test was an EEG. I was diagnosed with partial complex seizure disorder presenting as Vertiginous Epilepsy. Since then I have been being treated with 150m x2 of Vimpat. I have had two Clonic Tonic seizures that I went to the hospital for. Each EEG I have still presents seizure activity. I have an appointment to see my doctor in two weeks. I’m wondering if I should talk to him about other treatment options? Is this a controllable disorder by diet and other natural methods, such as sleep, etc.? Any experience/ advice?

Jump to this post

@debirwin
Good morning,
Do you know your seizure trigger? Is it a sound or a certain movement or another trigger? Has your doctor mentioned if you have TLE (Temporal Lobe Epilepsy) or a Reflex Epilepsy? You said your seizures were Complex Partial (Focal Impaired is the new terminology.) Do you remember anything that happened during the seizures?
I knew a man in Canada who was able to control his Epilepsy with vitamins & minerals. The site below was created for children with drug resistant Epilepsy but has some good information.

http://www.thedaisygarland.org.uk/epilepsy-and-vitamins-minerals

A few things that may help.

1️⃣ Lack of sleep is a major trigger.
2️⃣ Don’t consume to11 much alcohol (If any)
3️⃣ Control Anxiety & Depression
4️⃣ Have Vitamin D level checked. Nearly half the people with Epilepsy have low Vitamin D
5️⃣ There are herbs that some believe makes Seizure meds more effective.
6️⃣ Cut out Nicotine
7️⃣ Cut out or lower caffeine, only caffeine I get is from my candy. The one vice I can't shake.
8️⃣ Ketogenic Diet
9️⃣ Extracranial neurostimulators
🔟 Exercise and eat healthy.
11 There are Neurostimulation units that may help. (Neuropace)

Here is a recent video from Mayo Clinic doctors answering some epilepsy questions.

https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/?pg=1#comment-342281

Jake

REPLY
@theshewolf1

I understand what you are saying. I have had quite a few LOC due to migraines and now I have a pinched nerve in my neck that I have to be careful with. However, I would definitely ask your neurologist and/or primary care physician regarding a diet that may help as well as meds.

Jump to this post

@theshewolf1
Do you have seizures?
Jake

REPLY
@jakedduck1

@debirwin
Good morning,
Do you know your seizure trigger? Is it a sound or a certain movement or another trigger? Has your doctor mentioned if you have TLE (Temporal Lobe Epilepsy) or a Reflex Epilepsy? You said your seizures were Complex Partial (Focal Impaired is the new terminology.) Do you remember anything that happened during the seizures?
I knew a man in Canada who was able to control his Epilepsy with vitamins & minerals. The site below was created for children with drug resistant Epilepsy but has some good information.

http://www.thedaisygarland.org.uk/epilepsy-and-vitamins-minerals

A few things that may help.

1️⃣ Lack of sleep is a major trigger.
2️⃣ Don’t consume to11 much alcohol (If any)
3️⃣ Control Anxiety & Depression
4️⃣ Have Vitamin D level checked. Nearly half the people with Epilepsy have low Vitamin D
5️⃣ There are herbs that some believe makes Seizure meds more effective.
6️⃣ Cut out Nicotine
7️⃣ Cut out or lower caffeine, only caffeine I get is from my candy. The one vice I can't shake.
8️⃣ Ketogenic Diet
9️⃣ Extracranial neurostimulators
🔟 Exercise and eat healthy.
11 There are Neurostimulation units that may help. (Neuropace)

Here is a recent video from Mayo Clinic doctors answering some epilepsy questions.

https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/?pg=1#comment-342281

Jake

Jump to this post

Hi Jake,
I don’t remember the terminology my doctor used (I have a hard time remembering anything anymore) but he did say the activity starts on the left side of my brain and then moves around. All of this is new to me. That’s why I’m here. I’m hoping to educate myself and possibly have some control of the seizures.
I have had two clonic tonic seizures. Both played out exactly the same. I was wine tasting both times. (I am not a “drinker” per say but I love the wine tasting experience). The first time I was in Paso Robles. We tasted on Friday. Saturday morning I got up, had a cup of coffee and suited up to go on a bike ride with a group of friends. Half way through the ride my aura started. I didn’t know what the feeling was. It lasted about an hour before the seizure. During the time i was coherent but not able to articulate. I couldn’t speak but I could hear. I couldn’t make sense out what was being said to me. After about an hour I had a clonic tonic. The second time I was wine tasting in Napa valley. Minus the bike ride, it was pretty much the same scenario. Both times I was not drunk, and woke up fine. I thought the trigger may be the sugar in the wine, dehydration, or the coffee. Although I love wine tasting I am willing to forgo it to eliminate seizures.

Liked by Leonard

REPLY
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