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?

@burner12

Hi there, my name is Richard, & in 1988, when I was 18 months old, I was diagnosed with epilepsy, I'm now 31. I had a small number of grand-mal seizures. My epilepsy was made of some nocturnal & mainly complex-partial seizures. From 1988 until late 2017 I had epilepsy. Neurologists have always said live with someone for safety. So I live with my mom in Jacksonville Fl. She & her brother had epilepsy but out grew it in their teen years. I had brain surgery at Mayo Clinic in May 2017. We did a follow up EEG study in September 2017 & they saw no activity. I'm now 1 year seizure free, after being told I'll always have epilepsy. Thank You Lord! In September I drove a car for the 1st time in my life. I took lessons & got my license. I now own a new Toyota Camry.
That brings me to my question. All my life, until this past September 2018, I've been in the passengers seat. Now driving, after being told I'll never be able to, & owning my own car has changed my life & opened the world to me. Thank You Lord! I'm Christian in case you haven't noticed ;-). Has anyone in this group had or know someone who had epilepsy, then got it under control, got their license, & can drive? If so what's their experience like? My life is completely different from what it used to be. I used to be house bound, now I'm not. I'm just curious as to what others have experienced going from having epilepsy to not having it & driving?

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@burner12
Hello Richard and thanks for joining us at Connect, Welcome!!!
I’m sorry it’s taken me so long to get back to you.
I’ve had Epilepsy for 52 years and have many thousands of seizures and have been in comas because of them. I was also in my 30’s when I got my license which I lost numerous times from seizures. Doctors told me I’d never be able to drive. I knew what it was like to drive prior to getting my license. I drove our car, uncle’s truck and tractors on his ranch. I knew what I was missing out on so for me it was really hard watching my brother drive off in his new ‘67’ Mustang. When I went more than one year I immediately went to the Department of Motor Vehicles to take my test, got 100% on written test.
I want to congratulate you on your successful surgery and your freedom and new mobile independence, a wondrous feeling isn’t it.
Go wherever you want whenever you want for whatever reason you want. When I finally got my license I gleefully drove off to San Francisco alone, I suppose just because I finally could. No more relying on walking, biking, family, friends, buses, trains or whatever. I felt such freedom, take whatever route and turn anywhere, stop anywhere etc.
I know how you feel Richard and am so very happy for you. Hopefully you will never have another seizure.
Blessings,
Jake

Liked by Lisa Lucier

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Hi my name is David Waldahl and live in las Vegas. Resources seem to be very limited here compared to other city's and from stories I read. I'm 49 years old and have been having seizures for about 30 years. Have always been codependent, more dependent on others. I'm having to depend on myself now and is scaring the !!!! Out of me. No confidence. Just leaving my condo is tough. I'm going to need to get a job very soon and that's something that seems impossible. I'm even getting embarrassed in public when I have one. I know it will be coming and I know that's a poor way to think but after so many years it's hard to think different. It can take up to a week to recover from a seizure or multiple ones that always land me in the hospital. Just would like advise or a friend or two. Thank you. Still have fight!

Liked by Leonard

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@davidinvegas

Hi my name is David Waldahl and live in las Vegas. Resources seem to be very limited here compared to other city's and from stories I read. I'm 49 years old and have been having seizures for about 30 years. Have always been codependent, more dependent on others. I'm having to depend on myself now and is scaring the !!!! Out of me. No confidence. Just leaving my condo is tough. I'm going to need to get a job very soon and that's something that seems impossible. I'm even getting embarrassed in public when I have one. I know it will be coming and I know that's a poor way to think but after so many years it's hard to think different. It can take up to a week to recover from a seizure or multiple ones that always land me in the hospital. Just would like advise or a friend or two. Thank you. Still have fight!

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@davidinvegas
Hey there David,
I know exactly how you feel and what your going through. BUT, don’t you EVER be embarrassed (okay a few exceptions here) or ashamed that you have Epilepsy or have seizures, and that’s an order!!! The last thing that’s needed is one more person perpetuating the stigma already associated with Epilepsy, especially if it’s from one of our own. My friend in Birmingham, England had a Focal Impaired Awareness seizure in McDonalds where she removed all her clothes. She never would have known had the police or friend not told her what happened. I’ve had Epilepsy for 52 years. I’ve had well over 10,000 seizures and have been found in every conceivable place. There is virtually nothing we can do to prevent them, like it or not, we’re going down regardless of what we’re doing or where we are at. There will unfortunately always be more than enough ignorant people to keep the stigma going strong. Please don’t help them David. As far as confidence and seizures are concerned I understand it’s hard to be confident over something you have no control over. I’m assuming you live alone. You were courageous moving to your condo and that courageousness had to give you confidence to some degree. You are a very courageous fellow and I have great respect and admiration for your accomplishments. I’m sure if you think about it you’ll realize just how confident you really are. I’m curious if you may have ‘confidence’ and very realistic ‘fears’ mixed up. Anyone with Epilepsy living alone faces innumerable potential dangers and those fears and dangers only escalate when you go out in public. But like all diseases, disorders, conditions or syndromes life goes on. If you have a seizure get up when you can dust yourself off and continue along life’s journey, but you have to accept your limitations too.
If you live alone you might consider a roommate. Do you have a seizure pillow? What type seizures do you have? What meds are you on? Ever had VNS surgery or other treatments? How often do you have seizures?
Wishing you health happiness and a seizure free future.
Jake

Liked by Lisa Lucier

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@jakedduck1

@davidinvegas
Hey there David,
I know exactly how you feel and what your going through. BUT, don’t you EVER be embarrassed (okay a few exceptions here) or ashamed that you have Epilepsy or have seizures, and that’s an order!!! The last thing that’s needed is one more person perpetuating the stigma already associated with Epilepsy, especially if it’s from one of our own. My friend in Birmingham, England had a Focal Impaired Awareness seizure in McDonalds where she removed all her clothes. She never would have known had the police or friend not told her what happened. I’ve had Epilepsy for 52 years. I’ve had well over 10,000 seizures and have been found in every conceivable place. There is virtually nothing we can do to prevent them, like it or not, we’re going down regardless of what we’re doing or where we are at. There will unfortunately always be more than enough ignorant people to keep the stigma going strong. Please don’t help them David. As far as confidence and seizures are concerned I understand it’s hard to be confident over something you have no control over. I’m assuming you live alone. You were courageous moving to your condo and that courageousness had to give you confidence to some degree. You are a very courageous fellow and I have great respect and admiration for your accomplishments. I’m sure if you think about it you’ll realize just how confident you really are. I’m curious if you may have ‘confidence’ and very realistic ‘fears’ mixed up. Anyone with Epilepsy living alone faces innumerable potential dangers and those fears and dangers only escalate when you go out in public. But like all diseases, disorders, conditions or syndromes life goes on. If you have a seizure get up when you can dust yourself off and continue along life’s journey, but you have to accept your limitations too.
If you live alone you might consider a roommate. Do you have a seizure pillow? What type seizures do you have? What meds are you on? Ever had VNS surgery or other treatments? How often do you have seizures?
Wishing you health happiness and a seizure free future.
Jake

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@eallank you for your words. They are conforting. I do have a lot of worry outside of medical ones. I took care of mom for close to 5 yrs till her passing, she did her very best to take care of me. I've never wanted to apply for disability but I feel it's time. I've been seeing the same Neuro for about 12yrs. We are looking into vns but pacemaker needs looked at first. I have a roommate that I have known for 35yrs. I'm renting a room to him but there has not been any financial contribution on his part at all. Come January I will be owed over 3000$ from him. The little bit of money left over after selling moms and buying condo is gone. Boy he has it easy. Bad to mix friends and business, one always wins. I'm taking briviact, lamotrigine, vimpat, ofi, and lorazepam if I get that feeling. I do sometimes. I'll have some really weird feelings and maybe some small seizures. Most of the time I will just wake up in hospital. I'm getting very afraid of the missing time, the darkness of what happened. Ya I don't have seizers everyday but they are bad. So much damage to the rest of my body. My roommate has been here to call ambulance 2x already. I'm very uncomfortable having him here though. He is more comfortable than me. I have spoke with roommate, I won't complain but if I need to complain I usually loose my temper. Roommate brought up how lucky I am that he was here during my last seizure. To bad it was during a financial conversation. I don't like him here. It's a shame I'm not comfortable in my own house. It's going to cost money I don't have to have him evicted. Now my wife xwife what ever is unwilling to help until money starts coming in on my side. I don't blame her. Can only live a day at a time, trying to end with a smile and start morning with one. Order is received and will be obayed. Thank you for your words of wisdom. Being dependent on only myself is a lot tougher than I thought. Like a child mentally.

Liked by Leonard

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Hi, I am new to this forum . Just started generic Keppra. Have seizure like symptoms. I am 60 years old. Hope it helps.

Liked by Leonard

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@debvat

Hi, I am new to this forum . Just started generic Keppra. Have seizure like symptoms. I am 60 years old. Hope it helps.

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@debvat
Hi Deb,
First I’d like to welcome you to Connect.
Can you explain more about your symptoms?
Do you lose consciousness?
Do you know what type seizures you have? Is the Keppra stopping them?
Do you know your specific diagnosis? What dose of Keppra are you on?
Health and happiness,
Jake

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@jakedduck1

@debvat
Hi Deb,
First I’d like to welcome you to Connect.
Can you explain more about your symptoms?
Do you lose consciousness?
Do you know what type seizures you have? Is the Keppra stopping them?
Do you know your specific diagnosis? What dose of Keppra are you on?
Health and happiness,
Jake

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@debvat
Hi again,
Wanted to let you know if you begin on a generic Anticonvulsant don’t switch to brand and vice versa. Also ALWAYS make sure your future refills are from the same manufacturer. Subtle differences in ingredients can make a big difference in the effectiveness of seizure control.
Hope alls well,
Jake

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@jakedduck1

@debvat
Hi Deb,
First I’d like to welcome you to Connect.
Can you explain more about your symptoms?
Do you lose consciousness?
Do you know what type seizures you have? Is the Keppra stopping them?
Do you know your specific diagnosis? What dose of Keppra are you on?
Health and happiness,
Jake

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Hi Jake, I am very new to all this but not new to medical issues. I have short staring episodes and I do not loose consciousness. I sweat and shake and do not remember things I was doing. I haven't been diagnosed with seizures. I am being treated for migraines and the staring episodes became a lot worse. I am on 500mg bid of Levetiracetam. Thanks for the tip about manufacturers. Deb in Illinois near the Iowa border. Freezing here!

Liked by Leonard

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@debvat

Hi Jake, I am very new to all this but not new to medical issues. I have short staring episodes and I do not loose consciousness. I sweat and shake and do not remember things I was doing. I haven't been diagnosed with seizures. I am being treated for migraines and the staring episodes became a lot worse. I am on 500mg bid of Levetiracetam. Thanks for the tip about manufacturers. Deb in Illinois near the Iowa border. Freezing here!

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Hi, @debvat. I'd also like to welcome you to Mayo Clinic Connect. I wanted to mention that if you'd like to discuss migraines with others, you may wish to check out these discussions

https://connect.mayoclinic.org/discussion/how-do-you-get-relief-from-frequent-migraines

https://connect.mayoclinic.org/discussion/silent-migraines

How is the levetiracetam working for you with the seizure-like symptoms? You mentioned not being diagnosed with seizures. Was a diagnosis given for the episodes you described?

Liked by Leonard

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This is my first time here in the group and I’m happy I was able to join. I’ve had epilepsy since the age of 17 and being part of support groups such as this has been very important to me. I have two of my own epilepsy support groups on Facebook and I’m also part of a another group as well. I really look forward to sharing my own experiences with epilepsy and seizures here as well.

Liked by Leonard

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@colleenyoung

Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I’d like to invite you to the new group dedicated to discussions about epilepsy and seizures. It’s a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

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Hello and boy do I need advice I have phenobarbital controlled epilepsy for 30 years I am 55 and this past year have been having a ridiculous amount of memory, cognitive and balance issues. Dr says it's the meds and I need to consider switching two years ago a different neoro told me not to try to switch as my seizures were Grand mal,last one so many years ago they say was 5 minutes I dunno , she said just switching could kill me. My dilemma! I know epilepsy is danger no matter what but I've done so good to have my brain function back would be amazing honestly I can't remember a thing anymore,,,thoughts?

Liked by Leonard, isalenamom

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Hi my name is Kelli. I recently got diagnosed with epilepsy in the last year. They are saying it is from my intense chemotherapy and chemo pill. I have come off all chemo. Anyone else get diagnosed after cancer?

Liked by Leonard

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@mythreeguys
Good morning and welcome to Connect.
Whatever you do DON’T DISCONTINUE PHENOBARBITAL ABRUPTLY or any other Anticonvulsant.
The potential for Convulsive Status Epilepticus is dangerously real.
I don’t understand why the doctor believed you shouldn’t switch medications. Dying from changing from Phenobarbital is extremely rare unless it’s stopped abruptly. Did you suffer from Cluster Seizures? Have you ever been in an induced coma, especially in the last year? What dose of Phenobarbital do you take?
Best of luck,
Jake

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@kelliann

Hi my name is Kelli. I recently got diagnosed with epilepsy in the last year. They are saying it is from my intense chemotherapy and chemo pill. I have come off all chemo. Anyone else get diagnosed after cancer?

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Welcome to Connect, @kelliann. What type of cancer did you have? What type of chemotherapy?

Liked by Leonard

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@kelliann
Good afternoon,
I’m sorry to hear about your Cancer and Epilepsy diagnosis. I wish I was able to help in some way but I don’t know anything about the causative effects of Cancer or it’s treatments. About all I do know is that having Epilepsy can complicate chemotherapy since numerous drugs can cause seizures. Wish I could have helped you more.
Wishing you good health,
Jake

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