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?

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

@heal33

Hi, I'm Linn. I have had partial seizures for over 40 years. I have tried different medications but none have ever stopped my seizures. Recently I tried Keppra and later Tegretol as add ons but neither worked and caused acid reflux. I have been taking Lamictal since 2004 because that doesn't have intolerable side effects but unfortunately does not eliminate them. I have tried neurofeedback and the ketogenic diet (which I was on for 1 year and quit due to acid reflux). Thought of maybe going to Mayo to see if someone there might be able to help with a cases where meds don't work.

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Hi @heal33, welcome to Mayo Clinic Connect. It is frustrating to have medication resistant epilepsy.
Mayo Clinic experts in epilepsy care work together to provide individualized care to each patient. You can read more about epilepsy care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

Fellow members @oyeks and @debirwin stated these discussions that may interest you:
– Seizures despite medication https://connect.mayoclinic.org/discussion/oyeks-1/
– Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? https://connect.mayoclinic.org/discussion/new-medicine/

Would you like me to connect you with other members who are also patients of Mayo Clinic?

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@heal33

Hi, I'm Linn. I have had partial seizures for over 40 years. I have tried different medications but none have ever stopped my seizures. Recently I tried Keppra and later Tegretol as add ons but neither worked and caused acid reflux. I have been taking Lamictal since 2004 because that doesn't have intolerable side effects but unfortunately does not eliminate them. I have tried neurofeedback and the ketogenic diet (which I was on for 1 year and quit due to acid reflux). Thought of maybe going to Mayo to see if someone there might be able to help with a cases where meds don't work.

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@heal33
Welcome to Mayo Connect Linn, nice to have you with us.
Wow, 40 years of seizures with no control, unfortunately I know what it’s like. I’ve had Epilepsy for 53 years and frequent generalized seizures for 44 years. I’ve had some close calls during partials (Focals.)
Going to the Mayo Clinic Epilepsy Center and consulting with an Epileptologist sounds like the best decision you could make.
Here is some information on the Mayo Clinic Epilepsy Center in Rochester Minnesota.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Also if I were you I’d ask the Neurologist about DNA testing (Pharmacogenomics) for the best seizure medication and dose. Here is some information from Mayo Clinic.
https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/translational-programs/pharmacogenomics
Wishing you the best of luck,
Jake

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@jakedduck1

@heal33
Welcome to Mayo Connect Linn, nice to have you with us.
Wow, 40 years of seizures with no control, unfortunately I know what it’s like. I’ve had Epilepsy for 53 years and frequent generalized seizures for 44 years. I’ve had some close calls during partials (Focals.)
Going to the Mayo Clinic Epilepsy Center and consulting with an Epileptologist sounds like the best decision you could make.
Here is some information on the Mayo Clinic Epilepsy Center in Rochester Minnesota.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Also if I were you I’d ask the Neurologist about DNA testing (Pharmacogenomics) for the best seizure medication and dose. Here is some information from Mayo Clinic.
https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/translational-programs/pharmacogenomics
Wishing you the best of luck,
Jake

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Thanks for the info. I've never heard of pharmacogenomics.

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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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Hi, I was diagnosed with epilepsy at age 7 and am retired now. I have complex partial and tonic clonic. The tonic clonic are well controlled and the same with complex partial if all of my triggers (sugar and sleep) are under control. I have had a number of medicines over the years ranging from phenobarbital to Vimpat. I spent most of my years on valproic acid. My complex partial, until the last few years, show as "twitches" around the mouth. Now I am getting hand "twitches" which is a side effect of the Vimpat. I may be returning to Keppra in the near future. Thanks for creating this chat area.

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I spent the last 6 hours or so reading these posts and came away with a couple of things 1) I didn't know there were epilepsy specialists. Since I managed to have a tonic clonic while at the Mayo clinic about 10 years ago they already have a file on me. I may give them a call and see if they would like to see me. 2) Someone mentioned having had IVIG and Rituxan therapy which I found interesting because I had it too but for Idiopathic Thrombocytopenia Purpura (ITP) a fancy way of saying they don't know why but I didn't have enough platelets. I certainly didn't know it could be used to treat epilepsy. 3) No one has mentioned CPAP as a treatment so I will. Lack of sleep is a trigger for me. I also snore. Years ago I had a sleep study done and it was found I had borderline sleep apnea. I was given a temporary CPAP machine while the particulars were worked out with my insurance company. What I found was the CPAP therapy improved my sleep quality to such an extent my complex partial seizures disappeared. The insurance company eventually agreed to pay for it due to this as opposed to my sleep apnea diagnosis. What I found out is the quality of sleep matters. Bring on the Rapid Eye Movement (REM) please. 4) Almost any medicine I have been put on works perfectly for me (complex partials disappear) and then it seems my body adjusts and they return. My tonic clonic are well controlled at all times. 5) When folks are talking about a seizure here I assume you are talking about the tonic clonic variety as opposed to the little "twitches" (complex partial) I have which lasts for a split second and most uneducated folks don't even notice. I have been tired since I was 7 years old (I just turned 65). Tired is normal for me.

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My concern is with the cumulative effect of seizures. I am noticing a loss of memory, the ability to focus and the need for naps. It is hard to tell if this is due to the seizures, the medicine or something else including aging. It is extremely hard for me to tell when I have a "twitch" since effectively I am not there but if I have averaged 5 a day for 58 years the number of seizures is in excess of 100,000. While the symptoms did end my career early I do recognize the severity of my seizures in no way compares to anyone else who has posted here. Thanks for your time.

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@mxyzptlk32

I spent the last 6 hours or so reading these posts and came away with a couple of things 1) I didn't know there were epilepsy specialists. Since I managed to have a tonic clonic while at the Mayo clinic about 10 years ago they already have a file on me. I may give them a call and see if they would like to see me. 2) Someone mentioned having had IVIG and Rituxan therapy which I found interesting because I had it too but for Idiopathic Thrombocytopenia Purpura (ITP) a fancy way of saying they don't know why but I didn't have enough platelets. I certainly didn't know it could be used to treat epilepsy. 3) No one has mentioned CPAP as a treatment so I will. Lack of sleep is a trigger for me. I also snore. Years ago I had a sleep study done and it was found I had borderline sleep apnea. I was given a temporary CPAP machine while the particulars were worked out with my insurance company. What I found was the CPAP therapy improved my sleep quality to such an extent my complex partial seizures disappeared. The insurance company eventually agreed to pay for it due to this as opposed to my sleep apnea diagnosis. What I found out is the quality of sleep matters. Bring on the Rapid Eye Movement (REM) please. 4) Almost any medicine I have been put on works perfectly for me (complex partials disappear) and then it seems my body adjusts and they return. My tonic clonic are well controlled at all times. 5) When folks are talking about a seizure here I assume you are talking about the tonic clonic variety as opposed to the little "twitches" (complex partial) I have which lasts for a split second and most uneducated folks don't even notice. I have been tired since I was 7 years old (I just turned 65). Tired is normal for me.

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I want to look into that CPAP more. I've made an appointment twice but both have been cancelled. Once due to the virus and one she cancelled for other reasons. Time to check into other doctors who treat the problem.

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@heal33

I want to look into that CPAP more. I've made an appointment twice but both have been cancelled. Once due to the virus and one she cancelled for other reasons. Time to check into other doctors who treat the problem.

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Hello heal33, If a trigger for you is sleep I cannot recommend a CPAP enough. A sleep study should be one of the 1st tests a neurologist runs after an epilepsy diagnosis. I am not a doctor, to be clear, however just a bit of research of sleep apnea should illicit an "oh crap" from any neurologist that hasn't ran the test. Here is a snippet from Mayo about sleep apnea "sleep disorder in which breathing repeatedly stops and starts." Really all you have to ask yourself is how much REM sleep do you get while your breathing starts and stops. Logic tells me very little. Then tie REM sleep back to epilepsy especially if a trigger is sleep.

I tried posting the link about sleep apnea from the Mayo site but couldn't. You can do a search on sleep apnea for more detailed info. If you need help linking the two conditions let me know.

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If I had sleep apnea the seizures wouldn't necessarily happen at night, correct? They could happen during the day too I guess because I wasn't getting a good night's sleep. I have nasal congestion and snore and was told once I stopped breathing but don't know that I have sleep apnea. My neurologist told me to have a sleep study at the hospital when I first saw him. It wasn't something that he said I should do right away. I think he thought I should have it done because I snore. He resigned so I am seeing another neurologist there. The only thing the appointment with the sleep specialist has been canceled twice so I am thinking of looking for another doctor who does sleep study. The one time it was canceled because of the virus and another recently saying she couldn't see me and to reschedule.

I have an appointment with another neurologist next month. It is a Level 4 Epilepsy Center so maybe they can give me some answers. It would be closer to home too. I think they would have a sleep specialist there.

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@heal33

If I had sleep apnea the seizures wouldn't necessarily happen at night, correct? They could happen during the day too I guess because I wasn't getting a good night's sleep. I have nasal congestion and snore and was told once I stopped breathing but don't know that I have sleep apnea. My neurologist told me to have a sleep study at the hospital when I first saw him. It wasn't something that he said I should do right away. I think he thought I should have it done because I snore. He resigned so I am seeing another neurologist there. The only thing the appointment with the sleep specialist has been canceled twice so I am thinking of looking for another doctor who does sleep study. The one time it was canceled because of the virus and another recently saying she couldn't see me and to reschedule.

I have an appointment with another neurologist next month. It is a Level 4 Epilepsy Center so maybe they can give me some answers. It would be closer to home too. I think they would have a sleep specialist there.

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I have seizures during the day and I know I have them at night due to EEG results. I say night when I should actually say while asleep. My original sleep study shows…what is it they called them, can't remember now…essentially interruptions of normal sleep. My CPAP machine provides the same report. The first machine I had over 30 years ago didn't.

I would certainly think an Epilepsy Center would be the place to go. I don't keep up as well as I should but I would hope the specialists have made the connection between sleep apnea and epilepsy by now. It sounds like your neurologist has. I encourage you to get the sleep study done, get a CPAP even if it is the epilepsy that ends up justifying the CPAP. Get a loner CPAP from the doctor if there are any questions. No one would have known the effects of CPAP on me without the loner.

The sleep study will show the number of sleep abnormality instances (when you quit breathing) without a CPAP, then they will give you a CPAP and record the number again. That is what mine did but that was 30 years ago. It was an eye opening experience for my sleep study doctor, my neurologist and my primary care at the time. By now I would hope they have studies showing the correlation between these sleep abnormalities and frequency of seizures.

As I look back, it is unfortunate the doctors took my word my seizures decreased as opposed to recording the results with an EEG. I think we were all so excited we forgot about the science.

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@mxyzptlk32

My concern is with the cumulative effect of seizures. I am noticing a loss of memory, the ability to focus and the need for naps. It is hard to tell if this is due to the seizures, the medicine or something else including aging. It is extremely hard for me to tell when I have a "twitch" since effectively I am not there but if I have averaged 5 a day for 58 years the number of seizures is in excess of 100,000. While the symptoms did end my career early I do recognize the severity of my seizures in no way compares to anyone else who has posted here. Thanks for your time.

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@mxyzptlk32
Hi there,
First, I’m curious about your user name. Does it have some special significance you’d be willing to share?
Second, i’m sorry that I just now saw your post. My email notifications don’t seem to be working any longer, I suspect it’s some of Apple’s handiwork.
Age 7 huh, wow 58 years, the fun never stops but at least it improved in your case. It’s always heartwarming to hear when someone gets control of their seizures.
Thank you for sharing your story. You mentioned,
“my seizures in no way compares to anyone else who has posted here.” I disagree with your statement. Epilepsy is a very personalized condition and it affects everyone differently. I believe your story has great significance to a lot of people and again I thank you for sharing it with us.
I’m sure glad sugar wasn’t a trigger for me, I’m a sugarholic.
Your concerns for cumulative concerns are certainly valid ones, memory focus and being tired as I imagine you already know are all side effects of both seizures and the medication, virtually everyone I have ever talked to complains about these same issues. I have had Epilepsy since I was 14 or 15. I had always thought it started at age 15 but I found some records that are dated from the fall of 1966 at which time I would’ve been 14. My memory is also shot, I have no memory of my childhood. At age 15 I was in a coma for 8 months from convulsive status epilepticus and my memory was totally wiped out (retrograde amnesia) and none of that has ever returned. But that was only the first of 8 or nine more comas to come, some with more devastating consequences.
I was wondering a couple of things if you don’t mind humoring me.
1. What was your experience like with phenobarbital, did it ever help you?
2. If you ever took generic meds did you ever pay any attention to whether or not your pharmacy changed manufacturers since your previous prescription pick-up? If so did it aggravate your seizures?
Has your doctor diagnosed your twitches as some form of Myoclonus, simple or complex partials (Focal Aware or Impaired,) Myoclonic jerks or Myoclonic seizures?
Take care,
Jake

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@jakedduck1

@mxyzptlk32
Hi there,
First, I’m curious about your user name. Does it have some special significance you’d be willing to share?
Second, i’m sorry that I just now saw your post. My email notifications don’t seem to be working any longer, I suspect it’s some of Apple’s handiwork.
Age 7 huh, wow 58 years, the fun never stops but at least it improved in your case. It’s always heartwarming to hear when someone gets control of their seizures.
Thank you for sharing your story. You mentioned,
“my seizures in no way compares to anyone else who has posted here.” I disagree with your statement. Epilepsy is a very personalized condition and it affects everyone differently. I believe your story has great significance to a lot of people and again I thank you for sharing it with us.
I’m sure glad sugar wasn’t a trigger for me, I’m a sugarholic.
Your concerns for cumulative concerns are certainly valid ones, memory focus and being tired as I imagine you already know are all side effects of both seizures and the medication, virtually everyone I have ever talked to complains about these same issues. I have had Epilepsy since I was 14 or 15. I had always thought it started at age 15 but I found some records that are dated from the fall of 1966 at which time I would’ve been 14. My memory is also shot, I have no memory of my childhood. At age 15 I was in a coma for 8 months from convulsive status epilepticus and my memory was totally wiped out (retrograde amnesia) and none of that has ever returned. But that was only the first of 8 or nine more comas to come, some with more devastating consequences.
I was wondering a couple of things if you don’t mind humoring me.
1. What was your experience like with phenobarbital, did it ever help you?
2. If you ever took generic meds did you ever pay any attention to whether or not your pharmacy changed manufacturers since your previous prescription pick-up? If so did it aggravate your seizures?
Has your doctor diagnosed your twitches as some form of Myoclonus, simple or complex partials (Focal Aware or Impaired,) Myoclonic jerks or Myoclonic seizures?
Take care,
Jake

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Hello Jake,
Actually one of your earlier posts encouraged me to share.

Anyway, the user name, Mxyzptlk was a character in DC comic books that pestered Superman. You can search the net if you haven't already for more info. I got started reading early because of comic books. What can I say? I like books with pictures, as Forrest Gump said "and that's all I have to say about that". My brother was always amazed I knew who Nostradamus was because of a comic book.

Sugar: hypoglycemic for me. I eat more sugar now than when I was a kid, which still isn't much. I am lucky in the sense I like fruits vegetables, meat and potatoes.

58 years: Yes I was walking home from school and had my first grand mal(tonic clonic). I banged into a tree in our neighbors yard. That is all I remember of the first incident. The only potential reason I ever heard for the onset was I had all of the childhood diseases one on top of the other. I wasn't extremely sick with them but it was the only thing that had happened to me out of the ordinary.

Memory: mine is slowly fading I think. It is very hard to say what causes it because it could be age. I don't figure epilepsy is helping though. I have never been in a coma and no great blanks as far as I can tell. Although there are things I did in childhood that my brother remembers and I don't. I could chalk that up to what leaves an impression on one person but not another. Once told to me I seem to remember it but I have an active imagination too. It could just be me filling in the blanks.

Humoring you, I don't mind:
1) phenobarbital was the first medicine they put me on. About all I remember about that is the nasty bitter taste from the white quarter inch cube. That is what I mean about my memory. I wasn't on the phenobarbital long. It must have been about that time they discovered barbiturates wasn't a good thing and took me off of it. I believe my next medicine was depakene(valproic acid) and I was on that for years. It is possible I was on something between the phenobarbital and the depakene. I do remember being put in the hospital when I was in the 4th grade because I was tired. My Mom was no one to get in the way of so when she said she wanted some tests that is what happened. I don't think phenobarbital was any better or worse than anything else I have tried.

2) Generic drugs I have bounced around with no problems. My symptoms are so mild it doesn't seem to matter. I have had less than 10 tonic clonic seizures in my life. I had 3 between ages 7 and 16. I didn't have another until 9 or 10 years ago and those were induced (accidentally) by steroids. They tried to treat my ITP with steroids. I was on 60mg of dexamethasone for too long of a time. I have been told that is enough for a horse. My wife and grown daughters were there to witness it. It was the first time they had seen me have a tonic clonic. I am guessing it affected them more than it did me. They knew I had epilepsy but other than the "twitches" it was more a bit of knowledge than real.

My diagnosis is complex partial. I hadn't heard the word Myoclonus before I read it here. It is an apt description of my twitches though. I will see what my nurse says when I talk to her next. I told her about it over the phone and my reaction to what she was saying is it is possibly the Vimpat I am taking.

Focal aware or impaired: impaired, blank stare, stop right in the middle of a sentence then start again when it is over. Most last the time it takes you to flip a light switch. To the untrained eye, nothing happened. What I call "harder" ones I suspect are longer in duration and cause my head to bob. I have very few "hard" ones. When I have more of them I can trace it right back to a lack of sleep. By lack of sleep I mean several nights running, maybe a week. Sometimes I get an interesting feeling on my head as if someone has placed a hand on my forehead. That is when I know I am really tired.

Good to talk to you.

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