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?

Jake,

Absolutely no criticism at all. I wanted to convey to the folks that you have a lot of experience in may portions of epilepsy. I don't doubt that you have been a fantastic source for many people you never hear back from. Your opinions, I have found accurate for me. The truth be known, I'm a bit embarrassed to say, is have had and still do, a bit of bitterness for what this country has the ability to give, but knowingly drops the ball.

To listen to children's parents is pretty rough. I feel a bit sheepish every time closing the page and going on about my day after reading theirs. After those I feel fortunate, if the term is fair to use.

I thank you for the information you have given me.

Rick

REPLY
@djsmom

Ok you found info I haven't! She has progressed from the cationic to grand mal with puberty…her pediatric neuro has been great up until now. He was hesitant with answers and it scares me! She takes 200mg of lamictal twice a day 20 mg aderall in the a.m. and only if she's in school. A .2mg clonidine at nite. 10mg diastat for when seizures happened. That worked for the most part, had the occasional break thru seizures but the diastat stopped them instantly it seemed. Since puberty really hit about a yr ago, she was a premie, 3lbs 12ozs, was told we'd have some deveopmental delays, they turned into grand mals and it requires an er visit because the diastat failed. Now her neuro added a 500mg keppra halved given a half in the a.m. and half p.m. she's shown the aggressive personality you mentioned. She's hot headed anyways but it is bad since the added meds 8 days ago tonite. amy advise is greatly appreciated!! Thank you so much for responding to me! I feel so useless to her and I'm so frustrated!!!! I can't fix it!!! This is my baby, a mother sees about her children. We also have a 14 yo son that has no medical issues other than pollen allergies…he lives thru it with us in fear of the next one. I'm sorry so lengthy or spelling or whatever, I kind of just poured it all out there. Thank you so very much again! I'll stop here for now.thank you
Dj's mom

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@djsmom
You mention “I feel so useless to her” and “I can’t fix it” I think all parents feel like that. But what can parents do? All things considered doctors and pharmaceuticals do a fairly good job. About 7 out of 10 seizure patients are controlled on meds. Of course that’s not helping your daughter but don’t give up. Hope the Keppra works and her seizures are controlled. About 70% of Epilepsy patients have Idiopathic Epilepsy will never know the cause of their Epilepsy. I don’t understand why she is taking Clonidine? Does she have ADHD or anxiety? Since Diastat is a rescue medication I assume she is having cluster seizures. How often do you administer Diastat?
Hope the Keppra works soon and her dose doesn’t have to be increased too much.
Blessings,
Jake

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@1634517678

Jake,

Absolutely no criticism at all. I wanted to convey to the folks that you have a lot of experience in may portions of epilepsy. I don't doubt that you have been a fantastic source for many people you never hear back from. Your opinions, I have found accurate for me. The truth be known, I'm a bit embarrassed to say, is have had and still do, a bit of bitterness for what this country has the ability to give, but knowingly drops the ball.

To listen to children's parents is pretty rough. I feel a bit sheepish every time closing the page and going on about my day after reading theirs. After those I feel fortunate, if the term is fair to use.

I thank you for the information you have given me.

Rick

Jump to this post

@1634517678
Howdy Rick,
I was honored by your kind words. I never thought for a second you were being critical. But when you mentioned being cynical I got to thinking I might be somewhat cynical at times. I think probably because I’ve seen the worst of the worst. So many people I knew who died, had seizures made worse by surgery, the falsification of research of pharmaceuticals and medical devices, incompetent doctors, lack of information provided by doctors. etc etc etc. Two high risk people I knew were never told about SUDEP. The use of an anti suffocation pillow may have prevented their deaths. Hazel was only 17. She deserved better from her doctors. Just because I may not want a particular medication, surgery or treatment doesn’t mean someone else wouldn’t benefit from them.
Take care buddy,
Jake

REPLY
@jakedduck1

@djsmom
You mention “I feel so useless to her” and “I can’t fix it” I think all parents feel like that. But what can parents do? All things considered doctors and pharmaceuticals do a fairly good job. About 7 out of 10 seizure patients are controlled on meds. Of course that’s not helping your daughter but don’t give up. Hope the Keppra works and her seizures are controlled. About 70% of Epilepsy patients have Idiopathic Epilepsy will never know the cause of their Epilepsy. I don’t understand why she is taking Clonidine? Does she have ADHD or anxiety? Since Diastat is a rescue medication I assume she is having cluster seizures. How often do you administer Diastat?
Hope the Keppra works soon and her dose doesn’t have to be increased too much.
Blessings,
Jake

Jump to this post

Her neuro said he feels her biggest seizure trigger is stress and lack of sleep,I have to give it to her at nite, helps calm her and help her go to sleep. It's been very random and frequent lately…last one was 10 days ago, but was close Saturday afternoon while we were swimming. So we took them home and I immediately gave her the dose of lamctil. It took about an hour but it passed. She just seems to be going backwards. Where we had gotten to where we only had 3 or 4 breakthrough seizures a year for 2 years now we're back to 1 about every week or two, with no response to the diastat anymore, I have to take her to the er for Adivan thru an iv.
Have a blessed day,
Dj's mom

REPLY
@djsmom

Her neuro said he feels her biggest seizure trigger is stress and lack of sleep,I have to give it to her at nite, helps calm her and help her go to sleep. It's been very random and frequent lately…last one was 10 days ago, but was close Saturday afternoon while we were swimming. So we took them home and I immediately gave her the dose of lamctil. It took about an hour but it passed. She just seems to be going backwards. Where we had gotten to where we only had 3 or 4 breakthrough seizures a year for 2 years now we're back to 1 about every week or two, with no response to the diastat anymore, I have to take her to the er for Adivan thru an iv.
Have a blessed day,
Dj's mom

Jump to this post

Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery… we are planning to go… but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon … and I am really afraid of this new procedure.
He is not going to school, or playing anymore… everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

REPLY
@djsmom

Her neuro said he feels her biggest seizure trigger is stress and lack of sleep,I have to give it to her at nite, helps calm her and help her go to sleep. It's been very random and frequent lately…last one was 10 days ago, but was close Saturday afternoon while we were swimming. So we took them home and I immediately gave her the dose of lamctil. It took about an hour but it passed. She just seems to be going backwards. Where we had gotten to where we only had 3 or 4 breakthrough seizures a year for 2 years now we're back to 1 about every week or two, with no response to the diastat anymore, I have to take her to the er for Adivan thru an iv.
Have a blessed day,
Dj's mom

Jump to this post

@djsmom
Good morning,
Perhaps it’s time to seek out an Epileptologist and/or be referred by your doctor to an Epilepsy Center. Mayo Clinic’s E Center in Minn has been ranked as the best in the U.S. and is a level 4 Center. Although my own personal opinion is they may be a bit aggressive with Epilepsy Surgery. But I do believe it’s probably the best there is.

Have you ever considered the Epilepsy Diets? It may be advisable to discuss this with the Neurologist.
1 Ketogenic
2 Modified Atkins
3 Medium chain triglyceride
4 Low glycaemic index treatment

Here are some foods your daughter may want to avoid.
Besides MSG (I believe most processed foods contain MSG) & Aspartame, refined carbohydrate foods such as pizza, soft drinks, white bread, cakes, bagels, white rice, white pasta, mangos, raisins, bananas, mashed potatoes and dates,
chips. In other words, the good stuff. Try low glycemic-index foods like whole grains, brown rice, whole-wheat bread and pasta, legumes, yogurt and nuts. Low glycemic foods help keep your glucose from fluctuating as much. The brain is fueled primarily by glucose and requires a constant supply since glucose is not stored in the brain like it is in muscles. Actually carbohydrates are stored in muscles in the form of
glycogen and converted into glucose.

I am somewhat concerned about your daughters attitude regarding Epilepsy surgery. Although I would never have it done and perhaps I should have chanced it, after all 13,000+ seizures is a bit excessive and the time I spent in induced comas cumulatively was years. I don’t mean to be all doom and gloom about Epilepsy Surgery. After all there are many successful Epilepsy Surgeries performed. One person just recently posted her success story. The problem as I see it is those are the examples told to prospective patients while the negatives are downplayed if mentioned at all.
It amazes me at the incuriousness of many patients and parents. I truly don’t mean to sound judge-mental I am very concerned that people expect a quick, complete and permanent fix and although it does sometimes happen, I cannot speak to its permanence but it’s far from a guarantee and I’d very strongly recommend you visit every Epilepsy forum and check out people who have gone through it.
Doctors are not Gods, they are not performing miracles. Doctors are not infallible, accidents happen. Mistakes happen.
A study by Johns Hopkins estimates that more than 250,000 Americans die each year from medical errors. Medical errors are the third leading cause of death in the U.S.
Sorry, I guess I got a bit carried away.
Best of luck to you & yours,
Jake

Liked by djsmom

REPLY
@patrassi

Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery… we are planning to go… but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon … and I am really afraid of this new procedure.
He is not going to school, or playing anymore… everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

Jump to this post

I hope the doctors are able to help your son! We are blessed Dj's aren't daily…1 a week at most but they are violent and leave her exhausted. It's incredibly hard to watch your child go through such traumatic sickness and not to have the answers, I just keep digging and looking hoping to find something to help her. We have insurance but the medical debt is overwhelming, but blessed to have something that does help a little.
I sure hope that you can find answers and help for your son!! Thank you for responding, it's comforting to having people that care. Much love
Dj's mom

REPLY
@jakedduck1

@djsmom
Good morning,
Perhaps it’s time to seek out an Epileptologist and/or be referred by your doctor to an Epilepsy Center. Mayo Clinic’s E Center in Minn has been ranked as the best in the U.S. and is a level 4 Center. Although my own personal opinion is they may be a bit aggressive with Epilepsy Surgery. But I do believe it’s probably the best there is.

Have you ever considered the Epilepsy Diets? It may be advisable to discuss this with the Neurologist.
1 Ketogenic
2 Modified Atkins
3 Medium chain triglyceride
4 Low glycaemic index treatment

Here are some foods your daughter may want to avoid.
Besides MSG (I believe most processed foods contain MSG) & Aspartame, refined carbohydrate foods such as pizza, soft drinks, white bread, cakes, bagels, white rice, white pasta, mangos, raisins, bananas, mashed potatoes and dates,
chips. In other words, the good stuff. Try low glycemic-index foods like whole grains, brown rice, whole-wheat bread and pasta, legumes, yogurt and nuts. Low glycemic foods help keep your glucose from fluctuating as much. The brain is fueled primarily by glucose and requires a constant supply since glucose is not stored in the brain like it is in muscles. Actually carbohydrates are stored in muscles in the form of
glycogen and converted into glucose.

I am somewhat concerned about your daughters attitude regarding Epilepsy surgery. Although I would never have it done and perhaps I should have chanced it, after all 13,000+ seizures is a bit excessive and the time I spent in induced comas cumulatively was years. I don’t mean to be all doom and gloom about Epilepsy Surgery. After all there are many successful Epilepsy Surgeries performed. One person just recently posted her success story. The problem as I see it is those are the examples told to prospective patients while the negatives are downplayed if mentioned at all.
It amazes me at the incuriousness of many patients and parents. I truly don’t mean to sound judge-mental I am very concerned that people expect a quick, complete and permanent fix and although it does sometimes happen, I cannot speak to its permanence but it’s far from a guarantee and I’d very strongly recommend you visit every Epilepsy forum and check out people who have gone through it.
Doctors are not Gods, they are not performing miracles. Doctors are not infallible, accidents happen. Mistakes happen.
A study by Johns Hopkins estimates that more than 250,000 Americans die each year from medical errors. Medical errors are the third leading cause of death in the U.S.
Sorry, I guess I got a bit carried away.
Best of luck to you & yours,
Jake

Jump to this post

Not at all! I read every response! We are NOT having surgery she was just sick and tired and her neuro made it SOUND like a quick fix to her. I know it takes a toll on her little body, and has to frustrate her not to be able to get her learners permit like the rest of the kids, to have to take so much medication every day, to me going in her room countless times during the nite to check on her. I'm just reaching out hoping to stumble onto something, anything to give her positive outlook. I want her to be optimistic about her future! I do not want any sort of surgery preformed on her unless there is no other option. Diabetes does run in my family so I've always be strict about sugary sweets, a lot more lenient towards chips though. We grow a garden each year as to save $ and provide organicly grown foods with no chemicals. We eat what we can and I freeze the rest for thruout the winter. That's not to say she never has any of the things you've mentioned but I do try to monitor the things she eats and drinks and keep it as healthy and fresh as possible. We all really do appreciate any feedback we get and it's only to benefit her. We want her to see all options, not just what her neuro said in our visit last week. Thank you Jake for your honest feedback, i take all information right back to her! Showing her what others have to say/think that way she does see that she does have a choice, voice, and is being heard. Thank you!
Dj's mom

Liked by Leonard

REPLY

@djsmom
Hello again,
I just thought of something else a man on Connect started his daughter on the drug EPIDIOLEX which is a drug derived from marijuana without any THC. Not sure how it’s working although the research showed it worked quite well. It is VERY EXPENSIVE about $30,000 a year. Financial aid is available.
https://www.epidiolex.com/engage-patient-support/assistance
Jake

Liked by djsmom

REPLY

Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about to start on Epilodex. Apparently in Illinois, Blue Cross/Blue Shield insurance will cover part of the cost. He has been on Medical Marijuana for several years (in the form of an oral oil). It has helped a little, but has not completely stopped the seizures or improved his activities of daily living skills. What it has done is improve his ability to bear weight so that I can transfer him from car to wheelchair and back, so that he can attend his day program. So that definitely improves his quality of life. The cost for that–about $500.00/month–is not covered by insurance. We have a wonderful neurologist who is willing to do all the paperwork for us to try these treatments. She is semi-retired, but still sees a few long-time patients. We are very grateful to her.

Liked by Leonard

REPLY
@pamelastewart5

Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about to start on Epilodex. Apparently in Illinois, Blue Cross/Blue Shield insurance will cover part of the cost. He has been on Medical Marijuana for several years (in the form of an oral oil). It has helped a little, but has not completely stopped the seizures or improved his activities of daily living skills. What it has done is improve his ability to bear weight so that I can transfer him from car to wheelchair and back, so that he can attend his day program. So that definitely improves his quality of life. The cost for that–about $500.00/month–is not covered by insurance. We have a wonderful neurologist who is willing to do all the paperwork for us to try these treatments. She is semi-retired, but still sees a few long-time patients. We are very grateful to her.

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@pamelastewart5
Hello again,
You have probably read the thread about epidiolex but in case you haven’t @mmas is giving it to his 6 year old daughter. It hasn’t been helpful the last time I heard from him but now she should be on the maximum dose. Hope he updates us soon. I thought I read Epidiolex was about 25% effective but I can’t remember if that was for Tonic Clonic Seizures or it’s overall effectiveness. I’ll try and get some accurate info about that. Does anyone know? Atonic or Drop seizures associated with Lennox–Gastaut syndrome appear to be nearly 42% effective provided its used as an add on medication in adults.
Not quite the wonder drug they had thought it would be.
Best wishes,
Jake

REPLY
@lisalucier

Hi, @anna61, and welcome to Mayo Clinic Connect and this discussion on living with epilepsy. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like to introduce you to @joannern @nadinen @punkychica @jakedduck1 @valm and others in this discussion. Please also meet @hopeful33250.

That sounds very challenging living with intractable epilepsy with grand mal seizures for 16 years. Good to hear your experience at Mayo Clinic was so positive and that they discovered this small area of scar tissue in your right temporal lobe.

You said one of the options given to you was to participate in a clinical trial with laser ablation, and that you elected this and had your procedure last July. Will you share a bit more about what it was like for you with undergoing the laser ablation procedure you had within this trial? Were you nervous or feeling calm beforehand? How was your recovery from it?

@1634517678 – Thanks for all your perspective here on dealing with epilepsy, doctors, medication, and working and living a life with epilepsy.

You mentioned that at one point many years ago you did not want to take medications. Are you now taking medication for your epilepsy?

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Lisa,

Yes, using meds now.

Someone asked about Lamictal a few conversations back so I'll add to it:
Limictal XR (Extended Release) 500mg once 6 AM. I've been on for approx 16 years with good control of general nocturnal. Some other seizures(?), are two other, by 3 neurologists over 30 years, still present. First lasts 30 to 90 seconds. Experience is not being able to speak without slurring words, cannot read, or understand what anyone may be saying. I am aware it is taking place the entire time and safe to wash knives, glass dishes. The second is 75% same as the first but, cannot make eye contact with anyone, duration 3-10 minutes with a 30 min residual confusion. However, dizzy enough to force sitting down within 30 seconds, not safe to stand, mild headache after with urge to go to sleep. All neurologists have said they are not willing to call last 2 epilepsy, more likely mild concussion related, which there was 1-2 years prior to first nocturnal gm in my twenties. Both always a 30 second warning.

Lamictal,,, does it control the gm? No gms in the last 14 years, awake or sleep. The other 2, I may not see for 3 months, and then will come in series of 5 to 8, over 2 weeks, then gone again. I was offered Lamictal 200mg per day, in the manufacturers test group before available for use for 1 year. No seizures of any during that time. GMs never returned since start of Lamictal. The others gradually came back around month 14-16 from start. I tried lamictal look alike with no success. About 5% of users must be brand only.

Lamictal and Lamictal XR are very expensive, 30k ish per year if out of pocket. I get it through GSK for approx $35 per month. Is Lamictal only though GSK, not sure. GSK, (well? who really) dropped coverage of non XR 2 yrs ago. It's a lengthy process (documents and neurologists participation) to get it but, of course worth it. GSK 866-728-4368. If on just Lamictal (not XR) check with neurologist for a change to XR but… XR is usually done to smooth/lengthen the stomachs digestion/absorption if one thinks the drug blood level is too up-down with the non-XR.

Rick

REPLY
@pamelastewart5

Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about to start on Epilodex. Apparently in Illinois, Blue Cross/Blue Shield insurance will cover part of the cost. He has been on Medical Marijuana for several years (in the form of an oral oil). It has helped a little, but has not completely stopped the seizures or improved his activities of daily living skills. What it has done is improve his ability to bear weight so that I can transfer him from car to wheelchair and back, so that he can attend his day program. So that definitely improves his quality of life. The cost for that–about $500.00/month–is not covered by insurance. We have a wonderful neurologist who is willing to do all the paperwork for us to try these treatments. She is semi-retired, but still sees a few long-time patients. We are very grateful to her.

Jump to this post

Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But…when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.

Liked by Leonard

REPLY
@patrassi

Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery… we are planning to go… but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon … and I am really afraid of this new procedure.
He is not going to school, or playing anymore… everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

Jump to this post

I feel your pain! My daughter has been through 2 surgeries and still has seizures. It’s just very frustrating but did see a big difference in quality of life after surgeries despite physical set backs. It was a hard decision but glad we did it while she was young. Good luck and I’m here if you need to vent! I hate seizures! So unpredictable!

REPLY
@mmas

Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But…when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.

Jump to this post

@mmas
Thank you for the update and information. I’m sure it will help others.
Jake

REPLY
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