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Living with epilepsy - Introduce yourself & meet others

Posted by @colleenyoung, Dec 7, 2016

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?

REPLY

@colleenyoung

Welcome new members @kneubauer1 @janna520 and @tracy612.

@kneubauer1, please meet fellow "epilepsy moms" @tparks6, @patrassi, @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You can read more about them in these discussions:
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Kneubauer, can you tell us more about how the CBD oil works for your son?

Janna, you might also be interested in this discussion about concussion:
– Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

Tracy, I'm glad you found this group too. When you sense a seizure coming, and smell dark dirt, do you have enough time to make yourself safe? What tends to trigger the seizures?

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@colleenyoung: We live in Wa. State, so it's a rec and medical legal. We currently get RSO oil that is super concentrated and dilute it in grapeseed oil to make it easier to dose. But from what I understand (which is very little) it calms his brain down. He has a pretty high dose of CBD but low THC, and it works best that way. Hemp oil didn't do much. There has been a lot of trial and error. We had heard it could work for epilepsy and his Neuro said go ahead and try it but he can't really advise much since there is so little research. He was having break through seizures at least once a week when on his other meds. He hasn't had any for 3 weeks and that one he did have was cause he was sick(fever) so his threshold was lower. Sorry it's not more helpful. Since he has epilepsy from a genetic disorder (OPHN) we don't have much hope for him to "outgrow" the seizures.
I will say since coming off of the pharmaceuticals, his cognitive skills have grown immensely, went from 3-4 word sentences to long compound sentences. And he is retaining more information so not as much re-teaching.

@colleenyoung

Welcome new members @kneubauer1 @janna520 and @tracy612.

@kneubauer1, please meet fellow "epilepsy moms" @tparks6, @patrassi, @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @krd94 and @blath2000. You can read more about them in these discussions:
– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Kneubauer, can you tell us more about how the CBD oil works for your son?

Janna, you might also be interested in this discussion about concussion:
– Adult Life after a Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/

Tracy, I'm glad you found this group too. When you sense a seizure coming, and smell dark dirt, do you have enough time to make yourself safe? What tends to trigger the seizures?

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Greetings, when i smell dirt, i usually have meer seconds to get safe..When i first began seizures, i caused some brain damage. Now any highs or lows,.(extremes) seem to bring the seizure on,,,but it also seems to work itself up over a few days. I dont sleep well and I loose balance previous to a seizure. If i can answer any more questions, plz ask. I dont have a nero dr right now, im thinking of coming to Mayo…This has caused me to be on disability, and I think Im not getting benefits from my meds anymore…1000mgs of Keppra, 2x daily…thank you for what you are doing..tracy johnston
.

@tracy612

Greetings, my name is tracy612. I have had siezures for about 4yrs now. They started on the operating table during my 3rd neck surgery. The first yr was horrible, with all the seizures and tests, and accsidents that went along with the seizures. That first yr was so active, that I ended up with slight brain damage in my frontal lobes. Nothing has been the same sence then. I have Chronic fatigue syndrum, a skin condition, called Sneddens Wilkenson, and my balanne is poor. I went from being a nurse for 25yrs and an EMT to not being able to leave my home. I recently had 7 seizures in 1 afternoon, and I lost 4 days from them…Before that day, I was only having 1to 2 a month. Although I did recieve some blessings from the seizures, like colors are so vivid, ive taken up painting rocks, and i now am involved in all types of crafts,(your trash is my craft)..I still dont understand my diseace very well, and im scared I might get early onset Altimers or/dementia. I just want to talk with others so Im not feeling so alone…I have unconscience onset gand maul seizures, im on 2000mgs of Keppra,..and everytime i have a seizure I cant remeber things. Sometimes I cant understand what folks are saying to me, and sometimes, I will say a complete paragraph, and its off topic and makes no sence to the people around me..I smell dark dirt right before a seizure and I loose my taste buds for days after..Thanks for listening,..im glad i found this group…Blessings Tracy612

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Hi Janna,..doesnt it suck!! I was always so active, and now, just like you brain damage. I would love to talk with you, you sound alot like me, lonly,..Plz let me know if you are interested in getting to know each other, I am,..Tracy

@tracy612

Greetings, my name is tracy612. I have had siezures for about 4yrs now. They started on the operating table during my 3rd neck surgery. The first yr was horrible, with all the seizures and tests, and accsidents that went along with the seizures. That first yr was so active, that I ended up with slight brain damage in my frontal lobes. Nothing has been the same sence then. I have Chronic fatigue syndrum, a skin condition, called Sneddens Wilkenson, and my balanne is poor. I went from being a nurse for 25yrs and an EMT to not being able to leave my home. I recently had 7 seizures in 1 afternoon, and I lost 4 days from them…Before that day, I was only having 1to 2 a month. Although I did recieve some blessings from the seizures, like colors are so vivid, ive taken up painting rocks, and i now am involved in all types of crafts,(your trash is my craft)..I still dont understand my diseace very well, and im scared I might get early onset Altimers or/dementia. I just want to talk with others so Im not feeling so alone…I have unconscience onset gand maul seizures, im on 2000mgs of Keppra,..and everytime i have a seizure I cant remeber things. Sometimes I cant understand what folks are saying to me, and sometimes, I will say a complete paragraph, and its off topic and makes no sence to the people around me..I smell dark dirt right before a seizure and I loose my taste buds for days after..Thanks for listening,..im glad i found this group…Blessings Tracy612

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Hi Tracy! It more than sucks! I can’t even ever remember feeling so scared of what life will be like and if it will ever be normal! Thank you for reaching out to me!

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

@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 @sarfraz, I deleted the images of the reports that you uploaded with your message because they contained a lot of personal health and identifying information about your brother. Please keep in mind that Connect is a public forum and we advise against post personal identifying information and contact details.

Should you wish to seek medical advice in a safe and secure manner, please contact Mayo Clinic appointments office mayocl.in/1mtmR63

Hello all, Shane here. Epilepsy since 2012. Currently taking:
Vimpat 150mg 2 times daily
Depakote(Divalproex ER) 500mg twice daily
Keppra(Levetiracetam) 1250mg twice daily
Onfi(Clobazam) 10mg twice daily
Topamax(Topiramate) 100mg twice daily

I also have a VNS device to try and control my seizures. I've somewhat recently started cbd oil. I wouldn't say it's helped my seizures, but it's helped with an anxiety feeling I seem to get or have. So I'm still having seizures just about everyday or every other. I'm curious if anyone knows their thoughts on my current meds and dosage. Are there any better meds maybe? Also, what/who might be the best dr/hospital for epilepsy in my area (San Antonio) and in the country?

One last thing, I am a type1 diabetic, but my Dr tells me I'm always in good control as far as that's concerned.

My name’s Nadine I’m a 42 yr old female who wants to talk with someone b/w 30-50 who’s gone through things I have born with epilepsy b/c mom had a fever during pregnancy that we later discovered from an MRI formed a lesion on left temporal lobe. Went to see neurologist who prescribed many different regimens of drugs. I’ve had over 3600 seizures in 20 yrs of marriage which has caused major deficits with short term memory reasoning and sequencing b/c seizures we’re from the left temporal lobe. In 2013 lesion fixed and left hippocampus removed. Seizures being controlled with meds and the surgery butt short term memory is getting worse. Some people are asking if I have altheimers. The dr says no. I’m just wondering how to cope

@shanef86

Hello all, Shane here. Epilepsy since 2012. Currently taking:
Vimpat 150mg 2 times daily
Depakote(Divalproex ER) 500mg twice daily
Keppra(Levetiracetam) 1250mg twice daily
Onfi(Clobazam) 10mg twice daily
Topamax(Topiramate) 100mg twice daily

I also have a VNS device to try and control my seizures. I've somewhat recently started cbd oil. I wouldn't say it's helped my seizures, but it's helped with an anxiety feeling I seem to get or have. So I'm still having seizures just about everyday or every other. I'm curious if anyone knows their thoughts on my current meds and dosage. Are there any better meds maybe? Also, what/who might be the best dr/hospital for epilepsy in my area (San Antonio) and in the country?

One last thing, I am a type1 diabetic, but my Dr tells me I'm always in good control as far as that's concerned.

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Did your doctor suggest any IVIG therapy or Rituxan? Just curious.

Welcome to Connect, Nadine @12271997,

I can imagine you are concerned. Besides the members in this discussion, I'd also like to introduce you to @specialkt @bonnieh218 @richardlsolomon @micakath @twiceinalifetime @robertjr @ahernandez, as I think they may be able to relate to your symptoms.

@sail has written about her husband's right temporal lobe epilepsy and @doughboy47 has posted about having, "right temporal lobe, hippocampus, and amygdala removed due to epilepsy." I'm certain they will also join in with their insights.

You may also be interested in this discussion.
– Newly Diagnosed and Trying to Process https://connect.mayoclinic.org/discussion/newly-diagnosed-and-trying-to-process/

Nadine, could you share more about the medications you've been prescribed? How are you coping or managing symptoms at present?

@robertjr

Hi Isabel,ive had grandmals from 5 years old to now,im 63..The confusion soundslike me after a seizure ,things seem familiar but parts of my memory are missing,As the months go by the memoryof my sezures disappear..My confusion through theyears is more like the epilepsy is taking parts ofmy memory..Ive gone long enough 58 years,to realize that even beiing free for amounts of time such as 5 years doent mean much.Had a 5 year span .then bac! to normal..epilepsy will be with alwaysbut learned to live with it.

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How are you dealing with that? I'm almost 43 and I have people wondering if I have early althiemers dementia? My neurologist says no I don"t .Seizures are being controlled with meds lamotrigine xr 250mg in am, valproic acid 500 mg, Clonazepam 0.5 mg, Mirtazepine 30 mg, divalproex sodium er 500mg, and Onfi 10 mg all in pm. I also had the lesion that was causing the seizures on the left temporal lobe and left hippocampus removed in 2012

@iwetklow

Hi. I’m Irene from Az. Retired and enjoying.
I have photosensitive epilepsy. Strobe lights or certain pattern will trigger a seizure. I haven’t read much with others dealing with this type. I am not on any meds. Trying to use avoiding triggers. 8 years ago I tried meds and there were too many side effects.
I am glad to find this site.
Blessings
Irene

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Two things that help are put on sunglasses or cover one eye. Small led lights moving quickly and the stupid lights on the children' shoes especially when there running can give me a horrible migraine on the left side of the brain where the left temporal lobe is located

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

Hello,I had a grand mall seizure in 2014 and i believe it was caused by mercury poisoning from my fillings.Has anyone else think they have any neurological issues from amalgam mercury fillings in their teeth.All the research i have done makes me believe that is my issue.i have found people on line that were told they had ms and found out the mercury caused the issue.For some reason every doctor i have been to will not admit mercury is a neurotoxin.would really like to hear from anyone that has any info on the mercury and what to do to get it out of your brain.

Hi Everybody.
My name is Brai. I suffer from Partial Complex Seizures(Temporal Lobe) also paired with Severe Depression & Anxiety diagnosed in middle school(now 24). I had a fibril seizure when I was a baby and as I got older everything just continued to grow and symptoms kept adding up until I could fully convey what was going on and tada epileptic. My seizure threshold is unfortunately pretty sensitive but my doctor is trying to keep me on meds that are safer for "the young people" who still want kids and have lots of life ahead of them haha. Currently my meds are all over the place dealing with some life changes.
Daily :
Maxed out on Keppra
250 of Vimpat
Zoloft(recently weaned off of due to complications with my epilepsy)

I'm hoping to try and find some support as my depression and anxiety have gotten worse and I'm not finding much support in family/friends. I've been living with this condition since middle school so it's nothing new but as I get older things keep changing and progressing.

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