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

Hi Robert,
E for 59 years, long time huh. I’m 65 and had E for 51 yrs and have had some of the same problems so I can relate to how you feel. I sometimes feel like you about the childhood memories. However when looking through our old pictures I really miss the memories that go with them, especially those of my parents. I didn’t even know my parents when they picked me up to take me home from the hospital after being in an induced coma for a month. It was so frightening to go with basically strangers to who knew where. But it all turned out well. My parents sat with me one on each side with pictures and explaining where, when and all the details. We sat for hours they answered all my questions. The nurse had called my parents and told them how scared I was to see them. When they did the Mental Status Test I was Oriented X1 which means you only know who you are. I’m not sure I knew that much.
I was recently thinking about the prom too. No girlfriend here either. It’s painful to know all the things we missed during our younger years (assuming you missed the same things too.) I do wish I remembered something about my best friend though. I see him occasionally and it’s somewhat awkward. Even now I don’t remember trips. I went to Yosemite with a couple friends and don’t remember the trip at all. Don’t remember anything about the Worlds Fair in New Orleans except the horrible humidity. It’s like that about everything I do. To this day my brother can name virtually every city we went through and what the wether was like in those cities. My brother when talking about our childhood with my mom he always says “Do you remember, no you don’t” and I don’t. It doesn’t bother me at all. I also had very few friends even now I have only about 3 friends (true friends.) Having seizures in front of people never bothered me since I was usually having one. I was asked to leave school in the 10th grade since the floor was my desk most of the time. If I wasn’t seizing I was post Ictal. I’ve had seizures everywhere, roof, tree, on bike, driving, stairs, middle of the street, swimming pool, space mountain at Disneyland you name it. I laid on the floor a lot while watching TV since I’d be there soon anyway. Are you still having any seizures Robert?

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had a few in october, nov, dec,now on vimpat and keppra.dont drive,only go in water if theres people around,havehad to avoid a lot of things.lived most of life near the ocean,never swan in ocean,been up to my knees thats it,sex ok for me just had a late start,lol.

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The keto Diet? Thinking about trying it. Anyone have thought about it?

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Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

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@sweetpea81212

Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

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Do you know if she is having typical Absences or Atypical Absences? Typicals rarely if ever cause tiredness. If Atypical it’s common to be tired and need to rest or sleep especially if they have more than one or a group of them. Atypical Absences also last longer, usually 10-30 seconds. Does she just stare for a very short time maybe 3 seconds or so or is there some type of movement like lip smacking, rubbing fingers together, eye movements blinking. Can you arouse her at all. If having a typical Absence the person can’t be aroused. These seizures usually begin prior to age 6. They very often stop by age 18. Has she ever had a Grand Mal Seizure? Now known as Tonic Clonic. If so has the doctor ever mentioned Lennox Gastaut syndrome (LGS) With most people with Epilepsy an EEG and MRI are usually normal.

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@sweetpea81212

Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

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They last for 12seconds and up her eyes go up and her head goes up and I have taken things from her hand while having one and she doesn't recall it happing she has nor memory of what is going on while she has them they do have her on med but it is not working and they are wanting to do a 48 hrs eeg end of August and a mri this week do I home school her because she is tired and I don't think she can handle a 8hr day and she takes a 2hr to 3 hr naps and goes to bed of. Ti.e

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@janna520

Can I ask how long it took for disability? I’ve been waiting a year and a half!

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Time varies from 30 days to about 2 years or more that I’ve seen but there is no absolute time period. If your claim is for a terminal condition you’ll probably be approved in 30 days. If it goes to the second phase it may be approved or denied in 6-12 months. In some cases 4 months but I wouldn’t count on it.
If the claim goes before an administration law judge your chances for approval have gone down substantially and can take a year or more. Usually helps to have an attorney. Good luck!!!

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When I have a seizure my lips smack and I twist my right fingers like I'm snapping. As a result I have to do hand and finger exercises. The hand your squeezing something like a ball and for the fingers there are tools that have weights that you hold in your hand and move your fingers like your playing a piano to make them stronger. You can get these weights at a sporting goods store. I'm in my 40's and I'm also having to do some things with my left hand because my right hand and fingers get tired. You might have to home school or get an IEP individualized education plan. You'll have to talk to the school

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@sweetpea81212

Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

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Let your daughter take a nap as long as she needs. Fatigue can be a trigger of a seizure as well. By having several seizures daily she's exhausted

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@sweetpea81212

Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

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Hi sweetpea81212, They sound like typical absences to me but they also sound like they have some Atypical characteristics which only a doctor can decipher. The hours of sleeping confuses me. Are you sure she isn’t having another type of seizure, perhaps. In typical absences removing something without notice makes since without remembering. Does she ever jerk, arms legs head?? Although It doesn’t sound like Myoclonic jerks, has the doctor ever mentioned that? The EEG will show a slow wave pattern if Absences are present. Most MRI’s in Epilepsy patients when looking for causation turn out to be negative.
One important thing you need to know is studies have been done showing how important it is to not switch drugs from Brand to Generic and vs versa and ALWAYS use the same manufacturer too. What drug/drugs is your daughter taking. Phenobarbital has been in use for over 100 years. It is the number one used seizure medication in the world Wishing your daughter the best and your
family too.

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For those moviegoers who have epilepsy and are photosensitive please be aware of this warning if you plan to take your children (or grandchildren) to see Incredibles 2:

June 19, 2018

"If you’re one of the roughly 4,000 Americans with photosensitive epilepsy, going to the movies may not be as simple — or fun — as you’d like to think. At least that may be the case if the Disney Pixar smash hit Incredibles 2 is on your must-see list.

That’s because the film contains scenes with sequences of flashing lights that may cause problems for those with the condition, according to moviegoers’ accounts posted on Twitter. The Epilepsy Foundation says those with photosensitive epilepsy are prone to seizures “triggered by photic stimulation” or “induced by light.”

After moviegoers expressed concern on social media, Disney Pixar emailed a letter to theaters screening the film on June 15 instructing them to post warnings for those with photosensitive epilepsy. The signs caution moviegoers about scenes in the film that contain “a sequence of flashing lights which may affect customers who are susceptible to photosensitive epilepsy or other photosensitivities.”

To read the entire article, please follow this link, https://www.everydayhealth.com/epilepsy/incredibles-2-triggers-photosensitive-epilepsy-susceptible-theatergoers/

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Hello and Good Afternoon!

My younger brother Matt of 28 years has just had his seizure medication changed to Vimpat since he had close to 10 Grand Mal seizures this year, having been seizure free since November 2009.

My Questions:

Do doctors usually have more inputs than just a person's weight, age, and last Grand Mal seizure for seizure medication adjustments?

Do medical teams reporting to prescribing doctors, use the genome of the patient to mathematically model upcoming nerve stimulations?

If so, would the intent of the model be to predict the magnitude of neuron release from the synapse based on blood content circulating through the brain in addition to the air content being inhaled?

If so, would all Mayo Clinic sites do this type of modeling, or would the Rochester site be solely assigned to modeling neuron output of a patient's synapse?

I see many parts of both questions could possibly be answered from this thread.

Thank you for being my brother's voice.

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Hi, my name is Denise and my 31 year old son was diagnosed as having epilepsy after having 2 seizures within a few months of each other. the VA doctor actually said "if you have 2 or more seizures you have epilepsy". That was over a year ago and he continues to have seizures. They gave him Keppra and sent him on his way. Nothing more. I am looking for a plan of attack for these seizures. What do we do next. He is not satisfied to just take Keppra.
he has both private insurance through his job and the VA. What is his next step? I found him a Neurologist and will see him in a week. The Keppra does not work very well and he is afraid he will not be able to drive,hence not work,hence no private insurance. All this anxiety is not good for his condition and the Keppra doesnt help his anxiety at all. We need a plan what do we do Now? where do we go for REAL answers?
Any ideas would be appreciated. Thank You!

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@michele0161

Hi, my name is Denise and my 31 year old son was diagnosed as having epilepsy after having 2 seizures within a few months of each other. the VA doctor actually said "if you have 2 or more seizures you have epilepsy". That was over a year ago and he continues to have seizures. They gave him Keppra and sent him on his way. Nothing more. I am looking for a plan of attack for these seizures. What do we do next. He is not satisfied to just take Keppra.
he has both private insurance through his job and the VA. What is his next step? I found him a Neurologist and will see him in a week. The Keppra does not work very well and he is afraid he will not be able to drive,hence not work,hence no private insurance. All this anxiety is not good for his condition and the Keppra doesnt help his anxiety at all. We need a plan what do we do Now? where do we go for REAL answers?
Any ideas would be appreciated. Thank You!

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At which medical center did your son receive his diagnosis? I would like to suggest visiting the Mayo. If the Keppra isn’t working for him, they will keep working to find something that works. They will also look at other things, like the anxiety, that might be contributing factors and not just the epilepsy. They can also do gene testing to find which medication works best for him. I don’t know if this is a possibility for you or not, but with three Mayo Clinics now I strongly believe this is the best option. Sending best wishes to you as you move forward.

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@michele0161

Hi, my name is Denise and my 31 year old son was diagnosed as having epilepsy after having 2 seizures within a few months of each other. the VA doctor actually said "if you have 2 or more seizures you have epilepsy". That was over a year ago and he continues to have seizures. They gave him Keppra and sent him on his way. Nothing more. I am looking for a plan of attack for these seizures. What do we do next. He is not satisfied to just take Keppra.
he has both private insurance through his job and the VA. What is his next step? I found him a Neurologist and will see him in a week. The Keppra does not work very well and he is afraid he will not be able to drive,hence not work,hence no private insurance. All this anxiety is not good for his condition and the Keppra doesnt help his anxiety at all. We need a plan what do we do Now? where do we go for REAL answers?
Any ideas would be appreciated. Thank You!

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They started me on Keppra, and I made it 58 days without another seizure.. then I had a seizure 2 days in a row, so my neurologist added Vimpat and now I”m 75 days seizure free.

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Thank you Bonnie and valm. We are in Syracuse and heading to a Dr. at Crouse Med center next week. I'm hoping he has a plan or at least more information. I am not opposed to going to Rochester. I believe there is a Mayo Clinic there. My son is the type of guy that needs to know all the science behind his health issues. He likes action and is not satisfied with vague answers. He can get agitated with "experts" and caregivers that he feels are just trying to "manage" him. This is his problem with the VA. They just want to attribute all issues to PTSD and up his disability and be done with it.
I know his anxiety and sleep problems play a significant role in the frequency of these seizures and I would like to see that addressed. The Keppra is causing increased depression and mood swings that he has to work so hard to control. It is exhausting for him.
I'll let you know how it goes and whether we will be going to Rochester for more help. Thank you valm, I will be asking about Vimpat..

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