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?

My daughter has been having sezuire' s since she was 11 years .
Since that time we have been through so many Ct scans and have repeatedly been told that no one can understand why she has them.
We have had her medication changed up so many different times it seems so unreal.
The last 3 years her episodes have progressed.
She is no able to work (( X Ray Technician. )
I had heard about a producer which a small electronic devices is incerted into her body which will help to stop her episodes.
Has anyone here had or know someone who has went through the steps and most importantly has it help ?
Thank you in advance

Liked by Leonard

REPLY
@kimberly1967

My daughter has been having sezuire' s since she was 11 years .
Since that time we have been through so many Ct scans and have repeatedly been told that no one can understand why she has them.
We have had her medication changed up so many different times it seems so unreal.
The last 3 years her episodes have progressed.
She is no able to work (( X Ray Technician. )
I had heard about a producer which a small electronic devices is incerted into her body which will help to stop her episodes.
Has anyone here had or know someone who has went through the steps and most importantly has it help ?
Thank you in advance

Jump to this post

Hi, @kimberly1967 – welcome to Mayo Clinic Connect. You may have noticed I moved your post to this existing discussion, "Living with epilepsy – Introduce yourself & meet others" so that you can connect with other who have experience with epilepsy themselves or with someone close to them. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be so hard to go through all those scans with no explanation of why your daughter may be having seizures, and also with her episodes progressing. Very difficult she can no longer work in her job with this.

Hoping others in this thread can answer your question about a device to help control seizures. Are you perhaps thinking of vagus nerve stimulation (VNS) https://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/about/pac-20384565?

REPLY

@kimberly1967
Good morning,
Oops!, just noticed this didn’t post.
It’s not at all unusual no one knows the cause of your daughters seizures. The vast majority of people have normal CT’s/MRI’s. Most people seem to have some form of Idiopathic Epilepsy.
What type of seizures is she having? What meds has she tried? How often is she having them.
I’m assuming her EEG’s are normal as well. This too is not uncommon. I have nearly constant seizure activity that always registers on the electroencephalogram, thankfully after mostly daily seizures for close to 50 years they are no longer symptomatic. Unfortunately I know what your daughter is going through and how debilitating seizures can be.
As far as devices that reduce, stop or cause seizures to be less severe, it is dependent on the type of seizures.
A device called the RNS is proving to be beneficial in Focal seizure patients. Here is the Neuro Pace website
https://www.neuropace.com/the-rns-system/?gclid=EAIaIQobChMIifSAjbPU4QIVgxh9Ch1y4AJaEAAYASAAEgIlS_D_BwE

The VNS is another option.
Here is Cyberonics website

https://us.livanova.cyberonics.com/healthcare-professionals/about-usa

You may want to review this site before making a definitive decision, The VNS Message board founded by an aquaintance of mine. She and others did a lot of investigative research

I personally refused this device and although I haven’t had a seizure in 6 years, if I were to start having multiple daily seizures again I would still refuse this device. As serious and life threatening as my E has been neither my parents or I have ever considered E surgery. Don’t get me wrong, but both VNS and surgery have had their successes but I suppose I’ve known, seen and read to many horrendous outcomes. Maybe I’m just a coward. Maybe overly cautious but I’ve known, read and heard about too many people who never made it off the table or whose seizures were worse or died years after surgery. One man had no history of Convulsive Status yet 5 years after surgery he died in Status. Others died of S.U.D.E.P. (Sudden Unexpected Death in Epilepsy,) of course no one will ever know for sure about some of these deaths.
I believe doctors, parents and patients alike are overly optimistic about E surgery. Families and patients are often vulnerable due to there desperation for seizure control. I have seen families whose small child had fewer seizures in a year than I did in a day, yet they opted for E surgery and some of their outcomes included worsening seizures, weakness, paralysis. Doctors are not Gods, they don’t always meet their goal of complete control.
I hope your Seizures are soon controlled,
Jake

REPLY

Hi, I'm new and I need some questions answered please.
My son is 19 and was diagnosed with absence seizures. He won't take his medicine. He's had 2 grandmals since he was diagnosed. His doctor has told him that it could happen again at anytime, but he still refuses to take them.
I don't know what to do. I get it he's angry, depressed, distant from everyone. I am at my wit's end. He has also had testing done and it shows low levels of his medicine.

Liked by Leonard

REPLY
@dragonoma07

Hi, I'm new and I need some questions answered please.
My son is 19 and was diagnosed with absence seizures. He won't take his medicine. He's had 2 grandmals since he was diagnosed. His doctor has told him that it could happen again at anytime, but he still refuses to take them.
I don't know what to do. I get it he's angry, depressed, distant from everyone. I am at my wit's end. He has also had testing done and it shows low levels of his medicine.

Jump to this post

@dragonoma07
Hi there,
Welcome to Mayo Clinic Connect.
I have heard that same situation countless times myself included.
I have had Epilepsy for 52 years.
I think you already know there isn’t much you can do. After all teenager know best, to hear them tell it.
When I was 15 my seizures were severe and uncontrollable. I was an impatient and spoiled brat. I went to every type of doctor and was in UCD, UCSF, Stanford, UCLA etc etc. I had daily Cluster Tonic Clonic Seizures and since no doctor or hospital could offer me any help I figured I knew best. I was in for a rude awakening. I stopped my meds and ended up in the hospital in Convulsive Status Epilepticus. I was put into an induced coma to stop the seizures and was fortunate enough to wake up 8 months later. Although at the time I probably didn’t think I was fortunate. The nurse came in and said your parents are taking you home today. Parents? What parents? I was terrified, who were these people? When I got home my parents had pictures and photo albums out and since I look just like my Dad I must have accepted them lol. When I was woke up every memory I ever had was gone. I didn’t know anything, not even my name. To this day none of those memories ever returned. I was put in about 8-10 comas after that, occasionally with a similar outcome. Not because I stopped my medication again though, I learned my lesson. A lesson I hope no one ever has to learn. But I’ve had friends who have died from Status and even if you tell your son he may reply like I would have, back in the day, “it won’t happen to me.” He should thank God he doesn’t have a more severe form Epilepsy. How old was he when he developed the absences? Where they ever controlled? IF, he continues to refuse his meds he will be at an increased risk of SUDEP (Sudden Unexpected Death In Epilepsy) since he is now having Tonic Clonic Seizures. He could have Nocturnal Seizures sometime so as a precaution I’d invest in a seizure pillow. Some people have suffocated using regular pillows during a Nocturnal Seizure. (Warning, they aren’t very comfortable. At least they didn’t use to be.)
Does he drive?
I wish I had an answer for you but I’ve never been a parent. I’d probably cram them down his throat somehow. I wonder if a pharmacy, perhaps a Compounding Pharmacy could formulate a liquid that would be tasteless that you/someone could put in his drink. I’m sorry I don’t have the answers you need so badly.
Wishing you all the best,
Jake

REPLY
@bonnieh218

I am on Levetiracetam, which is the generic for Keppra, 500 mg twice a day. This works for me. No auras now.
I have taken Tegretol before. It didn’t work for me.

Jump to this post

My daughter's neurologist just added this medicine to her meds she's been on for 8 years. It really seems to be affecting her badly. She's 15, we started half a 500mg twice daily on Sunday. Monday I had to go pick her up from school around 10because she was extremely dizzy. She is adhd, doesn't slow down much but she missed school Tuesday and Wednesday and laid on a mat most of Thursday and Friday. Her doctor doesn't seem concerned and I've always valued his opinion but I'm not so sure if he's right with this partial medicine. Did you adjust to it easily?

Liked by Leonard

REPLY
@djsmom

My daughter's neurologist just added this medicine to her meds she's been on for 8 years. It really seems to be affecting her badly. She's 15, we started half a 500mg twice daily on Sunday. Monday I had to go pick her up from school around 10because she was extremely dizzy. She is adhd, doesn't slow down much but she missed school Tuesday and Wednesday and laid on a mat most of Thursday and Friday. Her doctor doesn't seem concerned and I've always valued his opinion but I'm not so sure if he's right with this partial medicine. Did you adjust to it easily?

Jump to this post

@djsmom
Does your daughter have Epilepsy? If so what type Seizures is she having and what other medications is she on? Personally If my child had Epilepsy and ADHD I would not use Amphetamines. People I’ve known in the past who had children with E & ADHD felt the ADHD medications lowered their children’s seizure thresholds. Although whether or not ADHD medications are the culprit is difficult if not impossible to decipher.
The side effects of Keppra may resolve in a few months. Dizziness and drowsiness are probably the most common. I remember when Keppra came out. It was also causing personality problems, mood and anger issues, easily annoyed even becoming aggressive, these personality issues happened almost solely in women. Keppra has close to if not 100 potential side effects.
Hope your daughter feels better soon,
Jake

REPLY
@jakedduck1

@djsmom
Does your daughter have Epilepsy? If so what type Seizures is she having and what other medications is she on? Personally If my child had Epilepsy and ADHD I would not use Amphetamines. People I’ve known in the past who had children with E & ADHD felt the ADHD medications lowered their children’s seizure thresholds. Although whether or not ADHD medications are the culprit is difficult if not impossible to decipher.
The side effects of Keppra may resolve in a few months. Dizziness and drowsiness are probably the most common. I remember when Keppra came out. It was also causing personality problems, mood and anger issues, easily annoyed even becoming aggressive, these personality issues happened almost solely in women. Keppra has close to if not 100 potential side effects.
Hope your daughter feels better soon,
Jake

Jump to this post

Mostly this is to those here who have children with epilepsy, and some credit given to Leonard, for you. I don't very often write in but I do read here. I'm 64, have had e since approx 23, and have tried probably 90% of drugs out there, when there was about 3-4 only too. ^ neurologists during that time.

I was out of my parents house when seizures started and I have been alone approx 28 years of those, married now for 15. In the beginning my attitude was, no point in taking meds (note too 3-4 available when 22) because they didn't work (and it was true), and thought if I ate well enough I'd be fine. Eating well contributes it's definite good but seizures did prevail. Mine were nocturnal grandM only 1st 20 years but, I had to hide a chewed tongue for a few days at work. Leonard and I have more not so cute stories we probably won't be sharing but… I think the worst of this tour has been INFORMATION (good information!). It's poor enough anywhere, in epilepsy fields as bad, so hang on. A very important note on that !!!…. Not all info will be bad or useless. You can flood yourself days on end, get nothing, and not be sure who/what to trust. A neurologists fact is that they can be a dime a dozen and,,, when an adult with your child, with e,,, neurology EXpertS can have you in panic. DO accept that they could be wrong. Remember that their information at best is just a few years ahead of yours and that their practical use of new info is subject to not enough history on new science/uses. Keep reading and listening to other stories. Occasionally something will come through useful. Visit/read other groups for parents with children with disabilities that are not epilepsy.

My seizures are not GM any more (any more?) but enough to keep me from a regular job. Being self employed got me through that hoop, not everyone can, not as great as some say and it has it's stomach acid too. Disability $ doesn't buy rent these days. Start chasing any source of money you can find to help too.

Leonard has to have been a good filter for e info in his life. Go ahead and trust what he has to give. We (older groups) don't have all the answers but have run through a large portion of junk info to get there. You will find some (older groups) who have given up, think they are doing battle, become too tired and some cynical/angry. Don't let it discourage you. There is an evolution of drug-epilepsy-medical info that our age group has seen that will give you another perspective. I'm not as well equipped as Leonard. I've read his input for a couple years. Go ahead and use it.

Rick

REPLY

I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

REPLY

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?

Liked by Leonard

REPLY
@jakedduck1

@djsmom
Does your daughter have Epilepsy? If so what type Seizures is she having and what other medications is she on? Personally If my child had Epilepsy and ADHD I would not use Amphetamines. People I’ve known in the past who had children with E & ADHD felt the ADHD medications lowered their children’s seizure thresholds. Although whether or not ADHD medications are the culprit is difficult if not impossible to decipher.
The side effects of Keppra may resolve in a few months. Dizziness and drowsiness are probably the most common. I remember when Keppra came out. It was also causing personality problems, mood and anger issues, easily annoyed even becoming aggressive, these personality issues happened almost solely in women. Keppra has close to if not 100 potential side effects.
Hope your daughter feels better soon,
Jake

Jump to this post

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

REPLY
@1634517678

Mostly this is to those here who have children with epilepsy, and some credit given to Leonard, for you. I don't very often write in but I do read here. I'm 64, have had e since approx 23, and have tried probably 90% of drugs out there, when there was about 3-4 only too. ^ neurologists during that time.

I was out of my parents house when seizures started and I have been alone approx 28 years of those, married now for 15. In the beginning my attitude was, no point in taking meds (note too 3-4 available when 22) because they didn't work (and it was true), and thought if I ate well enough I'd be fine. Eating well contributes it's definite good but seizures did prevail. Mine were nocturnal grandM only 1st 20 years but, I had to hide a chewed tongue for a few days at work. Leonard and I have more not so cute stories we probably won't be sharing but… I think the worst of this tour has been INFORMATION (good information!). It's poor enough anywhere, in epilepsy fields as bad, so hang on. A very important note on that !!!…. Not all info will be bad or useless. You can flood yourself days on end, get nothing, and not be sure who/what to trust. A neurologists fact is that they can be a dime a dozen and,,, when an adult with your child, with e,,, neurology EXpertS can have you in panic. DO accept that they could be wrong. Remember that their information at best is just a few years ahead of yours and that their practical use of new info is subject to not enough history on new science/uses. Keep reading and listening to other stories. Occasionally something will come through useful. Visit/read other groups for parents with children with disabilities that are not epilepsy.

My seizures are not GM any more (any more?) but enough to keep me from a regular job. Being self employed got me through that hoop, not everyone can, not as great as some say and it has it's stomach acid too. Disability $ doesn't buy rent these days. Start chasing any source of money you can find to help too.

Leonard has to have been a good filter for e info in his life. Go ahead and trust what he has to give. We (older groups) don't have all the answers but have run through a large portion of junk info to get there. You will find some (older groups) who have given up, think they are doing battle, become too tired and some cynical/angry. Don't let it discourage you. There is an evolution of drug-epilepsy-medical info that our age group has seen that will give you another perspective. I'm not as well equipped as Leonard. I've read his input for a couple years. Go ahead and use it.

Rick

Jump to this post

Thank you!! As I'm reading this tears are streaming, please see my reply to Jake. I just need somewhere to turn, answers instead of dead ends and my child suffering for my failure to be able to control and stop it. What's really broken me down is when we saw her neuro and his answer was 500mg keppra split in half twice daily, adding a pill, same way halved, we can only go to 3 twice daily and then it's off to a surgeon?!?! And my baby says she'd rather have surgery than to keep having to take so much meds…I'm lost…please help
Dj's mom

REPLY
@anna61

I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

Jump to this post

What an amazing story, @anna61. You must be so pleased that you traveled to Mayo for a second opinion. It really worked out well for you.

What type of follow up care do you have? Do you ever anticipate having another laser ablation or has this one cured the problem?

REPLY
@anna61

I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

Jump to this post

@anna61
Hello Anna, welcome to Connect.
Thank you for sharing your story. It’s always heart warming and encouraging to hear that someone has a successful outcome.
I suppose I have become somewhat cynical about certain Epilepsy treatments from the decades of participating on Epilepsy forums. One problem is Seizure patients who have Refractory Epilepsy or children with serious Epilepsy Syndromes or bad experiences are the ones who seem to use forums most and usually have the worst outcomes.
Take care,
Jake

REPLY
@anna61

I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!

Jump to this post

@anna61
Hello Anna, welcome to Connect.
Thank you for sharing your story. It’s always heart warming and encouraging to hear that someone has a successful outcome. Rick @1634517678 mentioned some become cynical and angry. To a degree I’m guilty of cynicism but not anger.
I suppose I have become somewhat cynical about certain Epilepsy treatments from the decades of participating on Epilepsy forums. One problem is Seizure patients who have Refractory, severe, cluster, hard to treat or children with serious Epilepsy Syndromes or who had bad experiences are the ones who seem to use forums most. Those are the people I am most familiar with so sometimes my opinions may not be as impartial as they should. Thank you for pointing this out Rick.
Congratulations Anna,
Jake

REPLY
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