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?

@jb24
Hello again,
Oops, I just saw your other post that your daughter has Tonic-Clonic seizure. Please excuse my negligence. About 32% or so of people in the autism spectrum also have epilepsy.
Jake

Liked by jb24

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Thank you, Leonard! No, she has never had any of those tests. Nor has she seen any other specialists. The difficulty is where we live and the fact that she is on medicaid. There is only one adult Neuro in a 50-75 mile range that will accept medicaid. Yes, she is dx'ed epileptic and she has PDD-NOS (pervasive developmental disorder – not otherwise specified). She has an anxiety disorder and also sensory disorder. She takes Zoloft for her anxiety. Had 4 years of occupation therapy for her sensory DX. Yes, her seizures are Tonic-Clonic, and pretty violent. No, she doesn't bite her tongue or cheeks. Yes she has a medical bracelet, that also states she is allergic to Lamictal. That was not a good ride to the ER! The reason she is only on Depakote is that all the others were tried and didn't work or put her in a bad state. Depakote alone has controlled her seizures. I take all precautions with her, she takes showers only, wears a life jacket in the water, etc. No one ever told me anything! I was the one who through research found her needs and other dx's at 10yrs old. Doctors never seemed to go further than epilepsy, Or even giving me advice or other tests she may need! It's been a long and difficult road for this mother and advocate! She has an appt. today with her Primary. I called him yesterday and he got her in today. He is really good with her.
Thanks again! jb24

Liked by Lisa Lucier, Leonard

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Her doctor today ordered blood levels and a CT. He will start from there. He agrees that it may be underlying seizure activity, and we may just need to up her meds a bit. I pray that's all it is!
jb24

Liked by Leonard

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@jb24

Thank you, Leonard! No, she has never had any of those tests. Nor has she seen any other specialists. The difficulty is where we live and the fact that she is on medicaid. There is only one adult Neuro in a 50-75 mile range that will accept medicaid. Yes, she is dx'ed epileptic and she has PDD-NOS (pervasive developmental disorder – not otherwise specified). She has an anxiety disorder and also sensory disorder. She takes Zoloft for her anxiety. Had 4 years of occupation therapy for her sensory DX. Yes, her seizures are Tonic-Clonic, and pretty violent. No, she doesn't bite her tongue or cheeks. Yes she has a medical bracelet, that also states she is allergic to Lamictal. That was not a good ride to the ER! The reason she is only on Depakote is that all the others were tried and didn't work or put her in a bad state. Depakote alone has controlled her seizures. I take all precautions with her, she takes showers only, wears a life jacket in the water, etc. No one ever told me anything! I was the one who through research found her needs and other dx's at 10yrs old. Doctors never seemed to go further than epilepsy, Or even giving me advice or other tests she may need! It's been a long and difficult road for this mother and advocate! She has an appt. today with her Primary. I called him yesterday and he got her in today. He is really good with her.
Thanks again! jb24

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@jb24
I want you to know that I have the greatest respect for you and although I don’t have any hands-on experience in the situation that you’re in, I have had some caregiving experience. At 58 my father was paralyzed from the neck down (Quadriplegic.) I took care of my mother for a while including seven months while she was bedridden and I am my cousin's conservator and trustee, he’s developmentally disabled.
Anxiety and depression are unfortunately quite common in people with epilepsy and are triggers for seizures in some people.

Are the doctor sure that her seizures are caused by abnormal electrical activity which would be Epilepsy or could her seizure activity be brought on due to her anxiety or other psychological reasons which may well be psychogenic none-Epileptic seizures.Although if your daughters seizure stopped when she started her medication then they wouldn’t be psychedelic. However people can have both psychogenic seizures and epilepsy at the same time.
I have a question, does the Zoloft help your daughter? My cousin takes that and I hate the fact that he’s on it. I suggested to his caregivers that they go buy some capsules and fill them with sugar and get rid of the Zoloft and see how he does for 10 days or so. They had him on some antipsychotic medications which when I found out I put a stop to and the only thing they ever accomplished was to give him a movement disorder.
I wanted to tell you something else but I went to do something and now I forgot what it was, probably wasn’t important anyway,
Take care,
Jake

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Well that certainly qualifies you as a caregiver! Thank you so much for your care! When my daughter was 5 days old they did her first EEG and she did have some seizure activity and they caught it on the EEG. Before I got her back to the hospital when I saw her first one, she had 7 seizures by the time I got her there. But then of course they stopped until they had her on the EEG and she started with another one. I also spoke with her neuro at the time she was 17 and she expressed for the first time an aura before her seizure, and it was ants biting her feet and began to go up her legs. 20 seconds later her seizure started. I told the neuro that the aura proved it began in the parietal part of her brain. He gave me the strangest look and said "Yes, you are right." He had no idea how much research I had done! LOL Zoloft has been a life saver for my girl, not only for her anxiety, but also for her reasoning ability! Which she did not have before it. It amazed me. It also controls her "Flight Fight" down to a bare minimum. Otherwise we would be experiencing alot of Jet Li sequels!
Tell me the something else when you remember, my friend. : )
Peace,
jb24

Liked by Leonard

REPLY

I was diagnosed with Epilepsy when I was approximately 2 years old. I was told it was caused by a high fever. I had seizures as a child that were about a month or so apart. Many were Grand Mal seizures with convulsions. I have been on a prescription of Dilantin and Phenobarbital as long as I can remember. I grew up wanting to be a truck driver like my dad. I did get my Wisconsin’s Chauffeur’s License at age nineteen after I had been seizure free for two years but was restricted to intrastate commerce only in Wisconsin where I lived. In 2014 at the age of 57, I sought help at the federal level to try and get a interstate commerce exemption so that I could drive a commercial motor vehicle across state lines. Wisconsin Senator Ron Johnson’s Office told me about a Federal Motor Carrier Safety Administration (FMCSA) Pilot Program for drivers with a history of well controlled seizures. I applied for the exemption and was granted my first of three 2 year medical waivers and am in the process of applying for number four. After my first waiver, I went from driving only in Wisconsin to driving in Wisconsin, Minnesota, and Michigan’s Upper Peninsula as my job required. I switched companies 2 years ago and now drive from Wisconsin to 11 western states. I am required to have a yearly drivers physical instead of 2 years and I have to reapply for the waiver every 2 years, at least for now. I still am taking my prescription meds daily. I have been seizure free for over 40 years. I feel fortunate and wish all others that suffer from epilepsy that they find a way to eventually get it under control.

Liked by Leonard

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@rhartl

I was diagnosed with Epilepsy when I was approximately 2 years old. I was told it was caused by a high fever. I had seizures as a child that were about a month or so apart. Many were Grand Mal seizures with convulsions. I have been on a prescription of Dilantin and Phenobarbital as long as I can remember. I grew up wanting to be a truck driver like my dad. I did get my Wisconsin’s Chauffeur’s License at age nineteen after I had been seizure free for two years but was restricted to intrastate commerce only in Wisconsin where I lived. In 2014 at the age of 57, I sought help at the federal level to try and get a interstate commerce exemption so that I could drive a commercial motor vehicle across state lines. Wisconsin Senator Ron Johnson’s Office told me about a Federal Motor Carrier Safety Administration (FMCSA) Pilot Program for drivers with a history of well controlled seizures. I applied for the exemption and was granted my first of three 2 year medical waivers and am in the process of applying for number four. After my first waiver, I went from driving only in Wisconsin to driving in Wisconsin, Minnesota, and Michigan’s Upper Peninsula as my job required. I switched companies 2 years ago and now drive from Wisconsin to 11 western states. I am required to have a yearly drivers physical instead of 2 years and I have to reapply for the waiver every 2 years, at least for now. I still am taking my prescription meds daily. I have been seizure free for over 40 years. I feel fortunate and wish all others that suffer from epilepsy that they find a way to eventually get it under control.

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@rhartl
Hello,
First, congratulations on getting your commercial license, that’s great. In the beginning, your story sounded just like mine. I was on Dilantin and Phenobarbital too until the Dilantin became unstable and my level was either low or toxic, so I switched switched to Carbatrol. My dad was also a truck driver, although later he did less driving and became dispatcher and shop foreman. I can’t believe that after 40 years they’re still making you go through all that trouble. I think it’s a little much but I know of a man in Scotland who was seizure-free for 50 years and then had one out of the blue, so one never knows. But realistically how often does that really happen?
Stay safe out there,
Jake

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@1710dave

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

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1710dave
First of all, I’d like to welcome you to the Mayo Clinic Connect Forum. I spotted your post right away and replied but I did something stupid and the post disappeared, do that’s why the delay.
Yes, if it were me I would find a Neurologist who specializes in Epilepsy even if your seizures are under control. You probably know the unpredictability of seizures so who’s to say what could happen in the future. I always feel more comfortable with a specialist. Unfortunately, and I’ll probably get in trouble for saying this but it’s true, there are neurologists out there who are dumb as dirt and they care just about as much.
If your seizures are uncontrolled and no one has been able to decrease their frequency or severity I would recommend going to an Epilepsy Center to see an Epileptologist. Now it’s time for the inquisition, I’ll try to keep it short and give you a break since you’re new. Do you know what type of epilepsy you have? What type of seizures do you have? What medications are you on? Do you have nocturnal seizures? How long have you had epilepsy? Have you had the usual blood tests, MRI or another type of imaging or EEG? Were they normal?
Take care,
Jake

Liked by Leonard

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@jakedduck1

1710dave
First of all, I’d like to welcome you to the Mayo Clinic Connect Forum. I spotted your post right away and replied but I did something stupid and the post disappeared, do that’s why the delay.
Yes, if it were me I would find a Neurologist who specializes in Epilepsy even if your seizures are under control. You probably know the unpredictability of seizures so who’s to say what could happen in the future. I always feel more comfortable with a specialist. Unfortunately, and I’ll probably get in trouble for saying this but it’s true, there are neurologists out there who are dumb as dirt and they care just about as much.
If your seizures are uncontrolled and no one has been able to decrease their frequency or severity I would recommend going to an Epilepsy Center to see an Epileptologist. Now it’s time for the inquisition, I’ll try to keep it short and give you a break since you’re new. Do you know what type of epilepsy you have? What type of seizures do you have? What medications are you on? Do you have nocturnal seizures? How long have you had epilepsy? Have you had the usual blood tests, MRI or another type of imaging or EEG? Were they normal?
Take care,
Jake

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Hello Jake,I had my first seizure 1/5/14 lasted approx.30 minutes.The eeg test read that the eeg is consistent with a focal area of neuronal dysfunction in the right frontal region that has increased epileptic potential.All other test are normal.i have had one grand mall about once every two years,two were at night and two during the day and they last about 20 minutes.The last one I had I could hear people talking to me but I could not see anything and it lasted 10 minutes.I am on 500mg keppra twice a day.I have had health issues for the last 20 years and no doctor could find anything wrong.I did some research and all the issues I had where listed under mercury poisoning from amalgam fillings from the dentist.No doctor will even talk to me about possible mercury poisoning,they will not even admit it is a neurotoxin.After I bring up mercury half of the doctors would not see me anymore.I have tried detox myself and that is when I had another seizure.I am still looking for a doctor that isn't so narrow minded .The night I had my first seizure is the only time any test were ran.since then when I go to the doctor they do nothing just refill the prescription.Thank you for getting back with me.Hope I didn't make this too long.

Thank you
Dave

Liked by Leonard

REPLY
@1710dave

Hello Jake,I had my first seizure 1/5/14 lasted approx.30 minutes.The eeg test read that the eeg is consistent with a focal area of neuronal dysfunction in the right frontal region that has increased epileptic potential.All other test are normal.i have had one grand mall about once every two years,two were at night and two during the day and they last about 20 minutes.The last one I had I could hear people talking to me but I could not see anything and it lasted 10 minutes.I am on 500mg keppra twice a day.I have had health issues for the last 20 years and no doctor could find anything wrong.I did some research and all the issues I had where listed under mercury poisoning from amalgam fillings from the dentist.No doctor will even talk to me about possible mercury poisoning,they will not even admit it is a neurotoxin.After I bring up mercury half of the doctors would not see me anymore.I have tried detox myself and that is when I had another seizure.I am still looking for a doctor that isn't so narrow minded .The night I had my first seizure is the only time any test were ran.since then when I go to the doctor they do nothing just refill the prescription.Thank you for getting back with me.Hope I didn't make this too long.

Thank you
Dave

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1710dave
Not too long for me. There’s a man on here who writes posts that make war & peace look like a sentence, lol.
I doubt you’re going to find a doctor to agree that amalgam filling‘s are responsible for your seizures. Not that long back I also was concerned about that and so I called poison control about it. They claim there’s no valid proof that amalgam filling’s can cause mercury poisoning. They claim a person can get more mercury eating tuna than from the mercury in a filling.
They claim that very extensive testing has been done that has not proven that amalgam fillings can cause mercury poisoning even if the filling has shrunk or is cracked. My amalgam filling‘s have all been replaced because they have worn out. There are blood tests you can order to verify it one way or the other but without a doctor you'll have to pay for it yourself and I am not sure if the mercury test is one of them that you can order. Why they refuse I don’t know.
i’m assuming you’re still having seizures, you mentioned having tonic clonic seizures about every two years. Are your focal seizures under control or do you still have some occasionally. Have you been on 1,000mg of Keppra since 2014 or have you been on other meds or dosages?
If you have been on 1000 mg of Keppra since 2014 and have continued to have seizures I’d be curious why your doctor never increased it.
How do you try to detox yourself?
Take care,
Jake

Liked by Leonard

REPLY
@1710dave

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

Jump to this post

1710dave
Something crazy is going on my posts are changing what they say I’m in the process of correcting it now.
Jake

REPLY

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

Liked by Leonard

REPLY
@1710dave

I need to get a new neurologist and I was wondering since they said I have epilepsy should I see a doctor that specializes in that field.because they all have different field they list on line that they specialize in

Jump to this post

Hi, @1710dave – wondering how things are going for you? Are you still considering going to see an epileptologist?

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@lisalucier

Hi, @1710dave – wondering how things are going for you? Are you still considering going to see an epileptologist?

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Hello Lisa,yes I have an appointment the end of march.I cannot believe all the doctors I have been to and not one will listen to me about all the issues I am having.All they say is we cannot find anything wrong.They quit seeing me when I bring up amalgam mercury poisoning,which every issue I have is listed under mercury poisoning.Have been working on this for six years.Thanks for asking
Take care
Dave

Liked by Lisa Lucier

REPLY
@jakedduck1

@rhartl
Hello,
First, congratulations on getting your commercial license, that’s great. In the beginning, your story sounded just like mine. I was on Dilantin and Phenobarbital too until the Dilantin became unstable and my level was either low or toxic, so I switched switched to Carbatrol. My dad was also a truck driver, although later he did less driving and became dispatcher and shop foreman. I can’t believe that after 40 years they’re still making you go through all that trouble. I think it’s a little much but I know of a man in Scotland who was seizure-free for 50 years and then had one out of the blue, so one never knows. But realistically how often does that really happen?
Stay safe out there,
Jake

Jump to this post

Thank you Jake. The USDOT law book had said that if you had ever had epilepsy, you could not drive a Commercial Motor Vehicle (CMV) in interstate commerce. I think that specialist in the field decided on a time period formula that they estimated a driver with a history of epilepsy was know longer any less safe then a driver with no history. I still am on the pilot program and do not know when if ever I will be taken off. I am just happy to be doing what I am doing.

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