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?

Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this! My seizures probably started when I was young, and then @ around 30 I had the first of several gran mal seizures. The reason I say "probably" is that I always thought everyone felt those weird, "deja vu", moments of blankness type feelings. I was put on Dilantin, which controlled everything. "Fast forward" to this past year (20+ years later) and my neurologist explained that being on Dilantin for so long is not healthy and could cause irreversible neurological and liver damage. So, he switched me to Tegretol (the switch was NOT fun – I felt SO awful – sluggish, depressed, anxious, etc – while having to titrate off Dilantin and onto the Tegretol!!!). I've now been Dilantin-free for about a year, and I'm doing fine. I feel different than when taking the Dilantin, but I'm seizure-free.
A bit over a year ago, my now 15 year old daughter was diagnosed with anxiety-induced Absence seizures. We're having SO many issues trying to find a medication that controls her seizures without causing her extreme depression. She's been on Zonegran, Zarontin, Keppra (which caused her so much depression she couldn't even get out of bed!) and is just now switching from Aptiom to Fycompa (again because of depression). We're not going to even try Lamictal because several family members have had allergic reactions (bad rash, etc). She's also just started on birth control because I've noticed her seizures are worse just before her period. My daughter is taking online school because the anxiety of going to classes (and the loudness/activity of a high school is SO overstimulating) triggers multiple seizures. She LOVES school, so this is hard for her. I'm just not sure what to do next for her…Praying that the Fycompa and birth control will help without the awful side effects. Doctor doesn't want to put her on Tegretol since she's not having gran mal seizures.

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@isalenamom

Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this! My seizures probably started when I was young, and then @ around 30 I had the first of several gran mal seizures. The reason I say "probably" is that I always thought everyone felt those weird, "deja vu", moments of blankness type feelings. I was put on Dilantin, which controlled everything. "Fast forward" to this past year (20+ years later) and my neurologist explained that being on Dilantin for so long is not healthy and could cause irreversible neurological and liver damage. So, he switched me to Tegretol (the switch was NOT fun – I felt SO awful – sluggish, depressed, anxious, etc – while having to titrate off Dilantin and onto the Tegretol!!!). I've now been Dilantin-free for about a year, and I'm doing fine. I feel different than when taking the Dilantin, but I'm seizure-free.
A bit over a year ago, my now 15 year old daughter was diagnosed with anxiety-induced Absence seizures. We're having SO many issues trying to find a medication that controls her seizures without causing her extreme depression. She's been on Zonegran, Zarontin, Keppra (which caused her so much depression she couldn't even get out of bed!) and is just now switching from Aptiom to Fycompa (again because of depression). We're not going to even try Lamictal because several family members have had allergic reactions (bad rash, etc). She's also just started on birth control because I've noticed her seizures are worse just before her period. My daughter is taking online school because the anxiety of going to classes (and the loudness/activity of a high school is SO overstimulating) triggers multiple seizures. She LOVES school, so this is hard for her. I'm just not sure what to do next for her…Praying that the Fycompa and birth control will help without the awful side effects. Doctor doesn't want to put her on Tegretol since she's not having gran mal seizures.

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Hi, @isalenamom – welcome to Mayo Clinic Connect. Thanks for sharing about your own journey with seizures and taking phenytoin (Dilantin) and then carbamazepine (Tegretol), and now doing fine. That must be hard to now see your daughter with anxiety-induced absence seizures and having so many issues finding a medication that controls the seizures without causing extreme depression for her, .

I'd like to introduce you to @jakedduck1 @dawn_giacabazi @aroman @mythreeguys @kelliann, who may have some input for you as you seek some answers for your daughter and what to do next for her.

How are things going with the perampanel (Fycompa) so far?

Liked by isalenamom

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@lisalucier

Hi, @isalenamom – welcome to Mayo Clinic Connect. Thanks for sharing about your own journey with seizures and taking phenytoin (Dilantin) and then carbamazepine (Tegretol), and now doing fine. That must be hard to now see your daughter with anxiety-induced absence seizures and having so many issues finding a medication that controls the seizures without causing extreme depression for her, .

I'd like to introduce you to @jakedduck1 @dawn_giacabazi @aroman @mythreeguys @kelliann, who may have some input for you as you seek some answers for your daughter and what to do next for her.

How are things going with the perampanel (Fycompa) so far?

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@lisalucier Thank you! Because of side effects, my daughter has been taken off of the Fycompa. She was getting extremely angry, kept falling and was having panic attacks which of course triggered more seizures. The doctor is going to try her on Vimpat. The poor girl seems to have so many negative side effects for all these meds! Praying this will help!

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@isalenamom

Hi everyone! After practically a lifetime of seizures, it's nice to find a group like this! My seizures probably started when I was young, and then @ around 30 I had the first of several gran mal seizures. The reason I say "probably" is that I always thought everyone felt those weird, "deja vu", moments of blankness type feelings. I was put on Dilantin, which controlled everything. "Fast forward" to this past year (20+ years later) and my neurologist explained that being on Dilantin for so long is not healthy and could cause irreversible neurological and liver damage. So, he switched me to Tegretol (the switch was NOT fun – I felt SO awful – sluggish, depressed, anxious, etc – while having to titrate off Dilantin and onto the Tegretol!!!). I've now been Dilantin-free for about a year, and I'm doing fine. I feel different than when taking the Dilantin, but I'm seizure-free.
A bit over a year ago, my now 15 year old daughter was diagnosed with anxiety-induced Absence seizures. We're having SO many issues trying to find a medication that controls her seizures without causing her extreme depression. She's been on Zonegran, Zarontin, Keppra (which caused her so much depression she couldn't even get out of bed!) and is just now switching from Aptiom to Fycompa (again because of depression). We're not going to even try Lamictal because several family members have had allergic reactions (bad rash, etc). She's also just started on birth control because I've noticed her seizures are worse just before her period. My daughter is taking online school because the anxiety of going to classes (and the loudness/activity of a high school is SO overstimulating) triggers multiple seizures. She LOVES school, so this is hard for her. I'm just not sure what to do next for her…Praying that the Fycompa and birth control will help without the awful side effects. Doctor doesn't want to put her on Tegretol since she's not having gran mal seizures.

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@isalenamom
I’m happy to hear your seizures are controlled. But sorry to hear of your daughters issues. I took Dilantin also for over 30 years. I have Neuropathy from my feet to just above my waist as a result. I’m curious about what side effects your daughter had on Zarontin and when did it start. Did she have depression on Zonegran, Zarontin and Keppra?
Does your daughter fear having another seizure? Does she accept the fact she has Epilepsy? I’ve had Epilepsy for over 50 years. Since I was 15. In the very beginning it was no big deal. As the seizures changed to Convulsive Status, they increased in intensity and frequency and I was put in medically induced comas for weeks to months on end. I couldn’t cope with it and I had had a nervous breakdown. Stress is a major seizure trigger so anything that can be done to reduce it should help. Do you know what is causing her anxiety? Just like in Epilepsy it’s important to recognize your triggers in anxiety as well. Perhaps if she saw a Psychologist to help her recognize her irrational thoughts and how to overcome them, just maybe her seizures would stop or at least ease up.
Considering her difficulties with medication you may want to try Pharmacogenomic testing. Below is a link to the Mayo Clinic which explains it better than I can.

http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp

I wish you both the very best of luck and hope you remain controlled and your daughter is controlled soon.
Blessings,
Jake

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@jakedduck1

@isalenamom
I’m happy to hear your seizures are controlled. But sorry to hear of your daughters issues. I took Dilantin also for over 30 years. I have Neuropathy from my feet to just above my waist as a result. I’m curious about what side effects your daughter had on Zarontin and when did it start. Did she have depression on Zonegran, Zarontin and Keppra?
Does your daughter fear having another seizure? Does she accept the fact she has Epilepsy? I’ve had Epilepsy for over 50 years. Since I was 15. In the very beginning it was no big deal. As the seizures changed to Convulsive Status, they increased in intensity and frequency and I was put in medically induced comas for weeks to months on end. I couldn’t cope with it and I had had a nervous breakdown. Stress is a major seizure trigger so anything that can be done to reduce it should help. Do you know what is causing her anxiety? Just like in Epilepsy it’s important to recognize your triggers in anxiety as well. Perhaps if she saw a Psychologist to help her recognize her irrational thoughts and how to overcome them, just maybe her seizures would stop or at least ease up.
Considering her difficulties with medication you may want to try Pharmacogenomic testing. Below is a link to the Mayo Clinic which explains it better than I can.

http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp

I wish you both the very best of luck and hope you remain controlled and your daughter is controlled soon.
Blessings,
Jake

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@jakedduck1 The reaction/Neuropathy you have is the very reason my Neurologist took me off of the Dilantin. Hopefully, my taking it for 20 years won't affect me down the line.
My daughter had extreme depression on the meds – that's been the major reason we keep looking for something different for her. Her seizures are stress/anxiety induced; so I'm doing everything I can to keep her life "normal", calm and stress-free. Unfortunately, I'm going through a divorce, which brings some stress into the home. She also stresses about school. She is seeing a therapist to try to help with the anxiety/stress issues. Praying that the Vimpat will be the key for her seizures, which should also help with the anxiety (because she's stressed about having seizures)
Thank you for your thoughts/suggestions!! I appreciate the support so much!

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This past week l saw my new neurologist and my new cardiologist. I had very good appointments. After my eeg my neurologist wanted me to be inpatient so he can see if l am having seizures. He told me at first it was going to be 3day but now its 5days. On my first visit l knew l went to his clinic but l don't remember seeing him or talking to him. I told him at my second appointment this and also told him l thought he was short. And that is because he of his name. It's an Indian name. And when l told him that he said l haven't been short for 30yrs and we both laughed. When l am admitted in the hospital l can't leave the room for the entire 5 days because l will have wires in my head so they can see if l am having a seizure. Amy food from outside they have to check it. So this is going to be exciting. When l told my cardiologist my diagnosis he said yes you have seizures. And l.knew this since 1998 after my brain injury, my first neurologist test me and told me l have absent seizures. I have been going through all this testing just to prove some of my neurologist was wrong. Even at the mayo clinic the neurologist didn't believe it but sometimes you can have seizures and your test are normal even the eeg. Thank God l have insurance because l don't know what l would do if l didn't.

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Hi @techi that must be so frustrating.

I'd like to bring in fellow Connect members in this discussion like @jakedduck1 @dawn_giacabazi @aroman @mythreeguys and @kelliann as they may be able to offer you support as you work through this.

Back to you @techi, how are you feeling? Did the first neurologist give you any treatment options?

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@mmaryemc

I started a discussion about 8 months ago about my granddaughter who was hospitalized because she was having seizures. She was put into a medically-induced coma and given countless numbers of medications. Now to this day. She is still in a coma. They can't wake her up and they don't know why. Today we were told that we need to find a long-term rehab facility for her. They're done and they don't know what to do for her next. They want her out of the hospital and we have to find a place for her ASAP. She's 14 years old and on a respirator. Anyone? Suggestions? Recommendations? Comments? ANYTHING!?

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Hi Mary,
I’m very sorry to hear that. Have the seizures stopped yet. So she can’t breath on her own at all when they try and wake her? Have you tried to contact any other Epileptologists at other Epilepsy Centers? Perhaps joining some Epilepsy forums. No telling what others have been through. I’m trying to contact someone in London who is an Electroneurodiagnostic technologist, perhaps she will have some suggestions.
Below is a link on some research. It’s about glucose metabolism in the brain and may be able to predict if a person will wake up from a coma. The test to determine that is a specialized PET scan. Might be worth asking the doctors about.

https://www.cell.com/current-biology/fulltext/S0960-9822(16)30346-3

I would imagine the doctors informed you waking up can be a prolonged process, sometimes taking months.
Mayo Clinic’s Epilepsy Center is the top rated center in the U.S. It might be worth a phone call.
I can’t begin to imagine how terrible this ordeal has been on your family.
Hang in there,
Jake

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I started a discussion about 8 months ago about my granddaughter who was hospitalized because she was having seizures. She was put into a medically-induced coma and given countless numbers of medications. Now to this day. She is still in a coma. They can't wake her up and they don't know why. Today we were told that we need to find a long-term rehab facility for her. They're done and they don't know what to do for her next. They want her out of the hospital and we have to find a place for her ASAP. She's 14 years old and on a respirator. Anyone? Suggestions? Recommendations? Comments? ANYTHING!?

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I am a 24yr old female.
I am looking for some help.. i feel no doctor understand what is wrong with me
I have had epilepsy since around puberty.. around age of 12 when i got my period… i had alot of seizures until i was finally controlled on tegratol 200mg

Throughout my teenage years they decreased
When i married and fell pregnant i was a doctor lowered my dose to one pill 200mg only at night. This was because i had no seizures for atleast 6monthes.
Then i had no seizures for 5 years.
Now i am 24 suddenly i had 3 seizures in one day. I was taken to hospital and given a magnesium injection
This was 2 monthes after giving birth and not getting periods back due to breastfeeding..

I made myself sick fearing to eat anything or stress myself as i never knew what triggered it.

I visited a neurologist,he said my dose is too low. He said take 200mg at night and 300mg at night because i mainly get seizures when i wake..

Anyways through all of this i get symptoms of seizures throughout the afternoon and night and when i wake… so i get alot of auras but no seizures.(the feeling before i get the seizure) Ive had this problem since ive had epilepsy
How would i get rid of these auras??

My doctor seems to be confused and says its just anxiety but i know what im feeling. And it is the same feeling before my seizures (electric shock feeling in my right thumb)
He wanted to put me on xanax..

Do i need this much medication?? When i used to have seizures i would have only one in a day but after having 3 in one day i got worried

I have had multiple eeg and mri and they never find anything..

Please if you can help me.. i am sick of living life in fear

What would you advise me to do..

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@nadinen

I am a 24yr old female.
I am looking for some help.. i feel no doctor understand what is wrong with me
I have had epilepsy since around puberty.. around age of 12 when i got my period… i had alot of seizures until i was finally controlled on tegratol 200mg

Throughout my teenage years they decreased
When i married and fell pregnant i was a doctor lowered my dose to one pill 200mg only at night. This was because i had no seizures for atleast 6monthes.
Then i had no seizures for 5 years.
Now i am 24 suddenly i had 3 seizures in one day. I was taken to hospital and given a magnesium injection
This was 2 monthes after giving birth and not getting periods back due to breastfeeding..

I made myself sick fearing to eat anything or stress myself as i never knew what triggered it.

I visited a neurologist,he said my dose is too low. He said take 200mg at night and 300mg at night because i mainly get seizures when i wake..

Anyways through all of this i get symptoms of seizures throughout the afternoon and night and when i wake… so i get alot of auras but no seizures.(the feeling before i get the seizure) Ive had this problem since ive had epilepsy
How would i get rid of these auras??

My doctor seems to be confused and says its just anxiety but i know what im feeling. And it is the same feeling before my seizures (electric shock feeling in my right thumb)
He wanted to put me on xanax..

Do i need this much medication?? When i used to have seizures i would have only one in a day but after having 3 in one day i got worried

I have had multiple eeg and mri and they never find anything..

Please if you can help me.. i am sick of living life in fear

What would you advise me to do..

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Hi, @nadinen, and welcome to Mayo Clinic Connect. I can imagine that would be quite a change from having no seizures in 5 years to now having them three times in one day.

You'll notice I have moved your message to this existing discussion, "Living with epilepsy – Introduce yourself & meet others" in the Epilepsy & Seizures group. I did this so that you could talk with the members in this conversation who've had experience with epilepsy. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.

Members like @dawn_giacabazi @jakedduck1 @isalenamom@debvat @aroman @techi and others may have some thoughts on experiencing the auras you mentioned. They also might have input on your sense that the feeling you've described before having a seizure might be interpreted by your doctor as anxiety.

You mentioned being sick of living life in fear. What would you say is making you most fearful at present?

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@lisalucier

Hi, @nadinen, and welcome to Mayo Clinic Connect. I can imagine that would be quite a change from having no seizures in 5 years to now having them three times in one day.

You'll notice I have moved your message to this existing discussion, "Living with epilepsy – Introduce yourself & meet others" in the Epilepsy & Seizures group. I did this so that you could talk with the members in this conversation who've had experience with epilepsy. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.

Members like @dawn_giacabazi @jakedduck1 @isalenamom@debvat @aroman @techi and others may have some thoughts on experiencing the auras you mentioned. They also might have input on your sense that the feeling you've described before having a seizure might be interpreted by your doctor as anxiety.

You mentioned being sick of living life in fear. What would you say is making you most fearful at present?

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Well yes it was an outburst of 3 in one day then it never happened again but had so much auras since.. its frustrating because u take extra precaution of having a seizure for no reason so you feel fear and worry all the time

Ive googled a million things and became too obsessed with trying new diets or cutting things out so i can see if it makes any difference but it all just comes back every few days anyways… i kept a diary of everything and i see no pattern. Its hard not knowing what causes these shocks …mainly when i first wake or in the afternoon..

Im trying to stay positive now because i dont want epilepsy to take over my life anymore. I worry more than having the actual seizure which shows its become too much..

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@nadinen I had a seizure when I was 21. No more after this. I was having auras thereafter, although for many years doctors always told me this sounds just like anxiety and I wasn’t aware I was actually experiencing auras. Finally I discovered Mayo in Rochester MN. They were able to capture these experiences with an eeg and told me they were auras. After about a year of trial and error with meds and tons of frustration on my part, and them as well, I was put on Keppra, right after it first came out, and haven’t ever had an aura since. Sometimes it just takes time.

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@bonnieh218

@nadinen I had a seizure when I was 21. No more after this. I was having auras thereafter, although for many years doctors always told me this sounds just like anxiety and I wasn’t aware I was actually experiencing auras. Finally I discovered Mayo in Rochester MN. They were able to capture these experiences with an eeg and told me they were auras. After about a year of trial and error with meds and tons of frustration on my part, and them as well, I was put on Keppra, right after it first came out, and haven’t ever had an aura since. Sometimes it just takes time.

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The problem is i have had mri and eeg and no results..ever.. nothing ever shows..

I even did a sleep deprived eeg.

I am worried to do these again and be told i am just hallucinating or have anxiety..

I am tegratol i think it is controlling the seizures very well but the auras.. maybe i should change my drug? However i am too scared to try this

Did they tell u a aura is a seizure… or could these be side affects from medications.. i am very lost, i just want answers 🙁

Liked by Nadn

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@nadinen

Well yes it was an outburst of 3 in one day then it never happened again but had so much auras since.. its frustrating because u take extra precaution of having a seizure for no reason so you feel fear and worry all the time

Ive googled a million things and became too obsessed with trying new diets or cutting things out so i can see if it makes any difference but it all just comes back every few days anyways… i kept a diary of everything and i see no pattern. Its hard not knowing what causes these shocks …mainly when i first wake or in the afternoon..

Im trying to stay positive now because i dont want epilepsy to take over my life anymore. I worry more than having the actual seizure which shows its become too much..

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@nadinen
I was working on a reply to you but wanted to say a little something regarding your fear.
But first I have had over 13,300 seizures in my life. You absolutely cannot live your life in fear of the next one. YOU CAN’T! Fear can be very destructive, don’t allow it to be. It’s a total waste of time and effort to worry about things you have NO control over. Besides, what good does it do? Let me answer that for you, IT DOES NO GOOD. Did you ever think of the harm your worrying may do? It’s even possible your may be causing some of your own seizures. That theory isn’t as far fetched as you May be thinking right now. Fear, worry, stress, anxiety have been proven to be major seizure triggers. You need to enjoy your life. Live your life with gusto.
Sure you need to be cautious of certain things. If you have Tonic clonic Seizures you shouldn’t take a bath without someone with you. In the shower you should have a thermostat installed so you don’t accidentally scald yourself. Always have someone with you when swimming. Using elevators instead of stairs. Just go out there and live your life like every day is the first day of the rest of you life and if you have a seizure so be it. Shake it off and move on.

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