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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Hi everyone,

I’m Sarah. I’m here because I think I’m having myoclonic seizures and some really crazy stuff has happened to me lately and I was hoping to find some answers here.
I’ve done my research, but google can only take me so far (forgive me google, you wonderful beautiful thing!)

I’ve been having myoclonic jerks for a couple years. They started in one leg, and now they’ve progressed to going through my core and producing a “umph!” sound from me.
3 weeks ago my feet were super itchy at night, 2 weeks ago I had what appears to be neuropathy in my feet, then it traveled up to my knee, then to a few inches above that. It comes and goes in the legs and is always there in the feet.
An ER sent me to the hospital because they worried I had a rare disease that I turned out not to have. They took a ton of blood and tested me for I could swear everything but the bubonic plague. Then they accused me of faking when I said enough, I’m going home.
Fakers don’t get spinal taps k? That’s all I have to say about that!
So… yesterday I had an EEG. The jerks responded to a bunch of the things she did, but one pattern made my legs completely WIG OUT, shaking and kicking all over the place. I felt really tired and sick most of the rest of the day.
Then today, I was sitting at the table and I got extremely dizzy. I couldn’t focus my eyes so I just closed them but it wasn’t passing. I did a few of the jerks, so I decided to stand up and try to shake it off with some movement.
My legs shook a bit and then my foot just picked up and stomped back down on its own. I was worried I’d fall so I sat back down. A few minutes later my legs went nuts the same way they did in response to that pattern. It lasted maybe a minute. Then my ears popped and I heard a ladies voice for a second and fell asleep. When I woke up, I felt nauseous.
I’m worried that I’m just going to go on and on without answers. Are these jerks going to show up in that EEG?
And did I have a seizure today? If anyone has any experience with this, please come talk to me about it! I’m starting to wonder if this is ever going to be diagnosed and the EEG results won’t be back til the 20th but even when they do I don’t know whether it will even show up!
Thanks for reading my 📖 lol

Liked by Leonard

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Hi Sarah,
My name is Hannah. And I am so so sorry they had accused you of faking your seizures. I know how that can feel. I had a concussion during one of my wrestling practices last season and i had post concussion syndrome for about 4 or 5 months and I was out the rest of the season. When I was in the psychiatric hospital a few months ago, I constantly had seizures. as least one or two a day while I was in there. And now that i'm out, the seizures would slowly decrease in how often they were happening, but they are still happening. The hospital I was at for mental health had an emergency room connected to it so they did a CAT scan and it was clear and the ER doctor thinks that it was all psychosomatic even though they said it lasted about 4 minutes and i was postictal for about 20 minutes. my last seizure was today and it happened when I was driving and I was at a stoplight, i held up traffic of course but all i did was bump my head on the window. I was with a friend when it happened and he knows that I have seizures sometimes so he didn't call 911. when i came to, he took over and drove us to his house since it was closest and i wasn't really aware of what was happening around me. they have been getting scarier for me when i come to. I just really dont know whats happening, if I have epilepsy or anything like that. Most of the times, the seizures seem to happen when i am really stressed out in a particular situation or when im overworking my body at wrestling practice. So I understand your frustration in not knowing what's happening to your body, it really is not a great feeling. But I am glad they are trying to find you some answers with this EEG. I don't think an EEG would be helpful in my case, for my seizures aren't myoclonic like. Mine usually slowly come around. Like I would feel really dizzy at first, then all sound around me would just slowly fade out, then lately it's been happening to where I would just feel almost detached from my body and i would go limb and fall and shake uncontrollably. My boyfriend had took a video of one happening, that's how I know what happens after the sound fading out because that's all I remember from these when they happen. But please make sure to keep everyone updated on your EEG results, I am really eager to hear what they show!!

Liked by Lisa Lucier, Leonard

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Hello, I am new here. I am JB24. I am not sure how to make a new post for everyone to introduce myself ? I have a 29 yr old daughter who was born with GE, grand – mal seizures. Also she falls under the Autism Spectrum. I have been and am her mother, advocate, caretaker, and Legal Guardian. I have never had others to talk to about this who understand except Doctors and Neurologists, who in our years of experience haven't helped enough. Simply want to control her seizures. Even with years of experience I still have many questions! : ) So, if you could show me the ropes of getting around in here, I would sure appreciate it. Glad to be here. Thank you!

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@jb24

Hello, I am new here. I am JB24. I am not sure how to make a new post for everyone to introduce myself ? I have a 29 yr old daughter who was born with GE, grand – mal seizures. Also she falls under the Autism Spectrum. I have been and am her mother, advocate, caretaker, and Legal Guardian. I have never had others to talk to about this who understand except Doctors and Neurologists, who in our years of experience haven't helped enough. Simply want to control her seizures. Even with years of experience I still have many questions! : ) So, if you could show me the ropes of getting around in here, I would sure appreciate it. Glad to be here. Thank you!

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Nice to meet you, @jb24, and welcome to Mayo Clinic Connect. This discussion on living with epilepsy is a great place to start. More info on Connect can be found on "Get Started on Connect" in the gray box at the bottom of any Connect page.

Connect also has an Autism group you might check out for those living with autism as a patient or loved one of someone with the diagnosis https://connect.mayoclinic.org/group/autism/

I'd like you to meet @crstyday40 @amieejean
@hhannah2000 @jakedduck1 @decembersun79 and others, who may have input on your 29-year-old daughter and getting some control of the seizures from their own experiences.

When you said in your years of experience the doctors haven't helped her enough, is this with seizure control, advice managing day to day life or safety, the medications they have prescribed?

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Nice to meet you, Lisa! Thank you. Hello, all! I am figuring out my way around in here by just going everywhere. lol. First off, the neuro's we have seen have been 4 different ones. We have also seen a few Behavioralists. The Neuro's have done many tests, EEG's, MRI's, blood work etc, over the years to always the same conclusion, they find nothing that causes her seizures. They were no help in suggestions or options for her or me other than meds to control the seizures. Her seizures began in the womb. I knew that the first she had for me to see and hold her at three days old and holding her against me I knew that was the funny feeling I felt in the womb. She is super sensitive to meds and it took a while to get her meds right to stop the seizures. At 2 yrs old they took her off meds to see if the seizures had stopped. They did! Until she was sick and had a fever at 6 yrs old that caused a really long and difficult seizure lasting 30 minutes and then 5 hours for her to come out of her after sleep. Then at 17 yrs old they started again and have not stopped. So she has been on depakote since because it is the only one that works for her. I have hated the side effects, but then she can't have her seizures because of how violent they are. She is on it indefinitely. : ( In the past few weeks she has been getting dizzy spells that are now every day. I called her Primary for an appt. we will probably get in tomorrow. I feel like the dizzy spells are a seizure trying to break through. Is that possible? Is that common? Maybe her meds should be increased some? Thank you for reading this long post…….jb24

Liked by Lisa Lucier, Leonard

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@jb24

Nice to meet you, Lisa! Thank you. Hello, all! I am figuring out my way around in here by just going everywhere. lol. First off, the neuro's we have seen have been 4 different ones. We have also seen a few Behavioralists. The Neuro's have done many tests, EEG's, MRI's, blood work etc, over the years to always the same conclusion, they find nothing that causes her seizures. They were no help in suggestions or options for her or me other than meds to control the seizures. Her seizures began in the womb. I knew that the first she had for me to see and hold her at three days old and holding her against me I knew that was the funny feeling I felt in the womb. She is super sensitive to meds and it took a while to get her meds right to stop the seizures. At 2 yrs old they took her off meds to see if the seizures had stopped. They did! Until she was sick and had a fever at 6 yrs old that caused a really long and difficult seizure lasting 30 minutes and then 5 hours for her to come out of her after sleep. Then at 17 yrs old they started again and have not stopped. So she has been on depakote since because it is the only one that works for her. I have hated the side effects, but then she can't have her seizures because of how violent they are. She is on it indefinitely. : ( In the past few weeks she has been getting dizzy spells that are now every day. I called her Primary for an appt. we will probably get in tomorrow. I feel like the dizzy spells are a seizure trying to break through. Is that possible? Is that common? Maybe her meds should be increased some? Thank you for reading this long post…….jb24

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@jb24
Hello,
Welcome to our family,
I have had epilepsy for 52 years I'm quite sure I'm somewhat familiar with what your daughter has been going through. I have heard people mention they felt dizzy preceding a seizure, but usually when they did they would be dizzy and then a seizure would follow, usually a tonic clonic seizure. I wouldn’t say that the dizziness is common, least not from what I’ve heard other people talk about on various forums. I would get the dizziness checked out from your primary care doctor or an ENT or if you have an appointment coming up with your neurologist he should be able to help.
It’s not uncommon for EEG’s, MRIs, bloodwork even spinal taps to come out normal, but that doesn’t rule out epilepsy. Approximately 50% of the people who have normal EEGs actually have epilepsy. Has she ever had a sleep-deprived EEG of an Ambulatory EEG Where are you where are the monitor for a few days to a few weeks. I’m surprised he hasn’t because the dizziness itself can show up as altered brain waves which could aid in his diagnosis. Has she ever been to an epilepsy center and seen by an Epileptologist? They would probably do a VEEG (Video Electroencephalogram) to determine a various things including the seizure type and seizure focus (Where the seizure begins.) Is she having Tonic-Clonic (Old terminology Grand Mal) seizures? If so I’m curious if she bites her tongue and/or cheeks? Has she actually received a diagnosis of epilepsy. I have heard in the past from a number of people who had focal seizures that went from focal to bilateral Tonic-Clonic seizures and many were preceded by dizziness. Is she only taking Depakote? What does is she on? How frequently is she having seizures and what type? Has she been on other medications along with the Depakote? 75% of people diagnosed with epilepsy have idiopathic epilepsy, so I wouldn’t be very concerned if they can’t find a cause, it would be nice but it just doesn’t happen that often. Has any doctor suggested your your daughter may have PNES (Psychogenic Non-Epileptic Seizures?) Does your daughter have any psychological or emotional problems, anxiety, depression or a lot of stress?
”I have hated the side effects, but then she can't have her seizures because of how violent they are.” It sounds as though your daughter may have been in convulsive status epilepticus during that 30 minute seizure episode. Do you remember the doctors mentioning that term? I am Magine your daughter knows not to take baths unless someone is right there with her.
Does she have a medical alert bracelet or something similar? In case not here’s the MedicAlert website, they are the best in my opinion. they’re getting a little pricey but they do offer a lot of services and they also have sponsored memberships if finances are tight.
https://www.medicalert.org/?destination=products/everybody/french-rope-classic-medical-id-bracelet&gclid=EAIaIQobChMI4-Dyu6yW5wIVlsVkCh0ncgbmEAAYASAAEgLGLPD_BwE
Wishing your family the very best of luck,
Jake

Thank you for reading my long post, I hope it was as a little helpful.

Liked by Lisa Lucier

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