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?

@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.

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

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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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@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

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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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@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

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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.

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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?

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@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.

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@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

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@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

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@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.

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@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

I am currently trying to write down what seems to trigger the seizures; however, I tend to lose or misplace my notebook, lol. However, I read to at least educate myself on what not to do and/or things to limit. I appreciate all the help I can get because half the time, it is a crap shoot as to what triggers them and the other half it’s play the game-“lets make a deal.” My team of docs do their best, I think, to keep me from being in the prone position or in a hospital bed. I do, sincerely want to thank each person who replies to my “ramblings.”

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@debirwin

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.

Jump to this post

@debirwin
If your wine tasting or drinking is small amounts I wouldn't worry about it. But if you drink heavily and go through alcohol withdraw you’ll probably have problems.
Jake

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My daughter was diagnosed with Absence seizures 10 years ago but 3 years ago she started having grand mal seizures we went two years seizure free and then they returned but this time she ruptured her ear drum and she doesn’t seem to be the same. This is a lot to handle in our family because we miss her having her usual teenager dictator behavior. Now she doesn’t even have the energy to go to school and when she does she comes home and sleeps all afternoon.

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