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

@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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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.

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@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.

Liked by Lisa Lucier, Leonard

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@bbr

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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@bbr
Welcome to Connect.
I'm sorry to hear your daughter has seizures. I don't understand how a ruptured eardrum could be responsible for the symptoms you mention. Ruptured eardrums usually heal on there own quickly, 2-3 months. Has it been a couple months since it happened and if so has she been back to the doctor to confirm if it's healed? Did the rupture happen as a result of falling during the seizure? If so I wonder if she could have sustained a concussion. How long has this been going on? Could she be having more seizures? If so that could explain the sleeping or perhaps her seizures could have changed, perhaps she could be experiencing nocturnal seizures which would explain daytime fatigue.
People with Epilepsy also have about a 33% higher occurrence rate of sleep apnea, that too might explain the drowsiness. Does she sleep everyday after school? Could she be suffering from depression? Has her medication changed or increased? Here is a link to “Fatigue” from Mayo Clinic.
Best of luck,
Jake

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Discussion regarding Epilepsy and Cognition
December 17, 2019 12:00pm – 1:00 EST
Offered by the Epilepsy Foundation

Topics

1️⃣ Making sense of memory and cognitive complaints
2️⃣ Cognitive changes with normal aging
3️⃣ Assessing memory and cognition
4️⃣ Cognition and memory in epilepsy (adults and children)
5️⃣ Maintaining cognitive health
https://www.epilepsy.com/article/2019/11/webinar-epilepsy-and-cognition?ct=t(eNewsletter-11-20-2019)
Jake

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@jakedduck1

Discussion regarding Epilepsy and Cognition
December 17, 2019 12:00pm – 1:00 EST
Offered by the Epilepsy Foundation

Topics

1️⃣ Making sense of memory and cognitive complaints
2️⃣ Cognitive changes with normal aging
3️⃣ Assessing memory and cognition
4️⃣ Cognition and memory in epilepsy (adults and children)
5️⃣ Maintaining cognitive health
https://www.epilepsy.com/article/2019/11/webinar-epilepsy-and-cognition?ct=t(eNewsletter-11-20-2019)
Jake

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@jakedduck1 – I moved your post on the epilepsy webinar here to this discussion of living with epilepsy where it seems the most members affected by this disease have been part of the discussion.

Will you be taking part in this webinar, Jake?

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@lisalucier

@jakedduck1 – I moved your post on the epilepsy webinar here to this discussion of living with epilepsy where it seems the most members affected by this disease have been part of the discussion.

Will you be taking part in this webinar, Jake?

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Thank you Lisa,
I probably will try to take part in it. Although primarily organized for Epilepsy patients I'm wondering if it may be beneficial for Traumatic Brain Injury and stroke patients as well and anyone facing memory or cognitive impairment. Maybe I'll email Epilepsy Foundation tomorrow and ask.
Thanks again,
Jake

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Good morning, I am Amieejean 46 and I have the silent seizures ( lost of consciousness and the stare)with underlying other health issues. What exactly does this mean on type of seizures? I’m not on medication tried over 10 plus with a last resort of only having the 3rd VNS.

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@amieejean

Good morning, I am Amieejean 46 and I have the silent seizures ( lost of consciousness and the stare)with underlying other health issues. What exactly does this mean on type of seizures? I’m not on medication tried over 10 plus with a last resort of only having the 3rd VNS.

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@amieejean
Good morning and welcome to Mayo Clinic Connect.
It sounds as though you may be having Absence Seizures. However, you mention having a VNS which are treat Focal Seizures. Since its unclear what type of Seizures your experiencing Absence Seizures are Generalized Seizures meaning the entire brain is affected.
Focal Seizures have a specific seizure Focus (Where a seizure begins) for example, if they start in the back of the head (Occipital lobe) you may experience visual symptoms, if they start on the side of your head (Temporal lobe) you may experience a metallic taste, or other unusual taste, unusual smell, weird feeling in stomach sometimes fear. If the seizure starts on top of your head (Parietal lobe) burning, numbness or tingling may occur. Lastly, if it starts in the front of your head then you may observe grimacing, stiffness, abnormal posturing. Has your doctor ever mentioned Focal, Partial (Aware or Impaired) Petit Mal or Absence (Typical or Atypical) Seizures? I don't understand your comment of ”Having the 3rd VNS.” Did you go through 3 separate surgeries not including battery replacement and have three different VNS models implanted? Have you taken Zarontin/Ethosoruximide or Depakote/Valproic Acid?
Here is some information about Absense Seizures from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/petit-mal-seizure/symptoms-causes/syc-20359683
Jake

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