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?

@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, @mmaryemc – how are you doing? Wondering if you might provide an update on your granddaughter?

Liked by Leonard

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@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

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Hi, @patrassi – how are you? How is your little son who was having seizures? Did he end up having another surgery?

Liked by Leonard

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Hi all,
I am 56 years old and have recently been diagnosed with Epilepsy after experiencing a tonic clonic seizure back in October. Testing confirmed TLE on my right side. I have been on Keppra and experienced a lot of side effects the first few weeks but things got better. I do think my mood swings are related to the pill and that is difficult to deal with at times. My question to the group is this: I experience a tingling sensation on the right side of my head at random times. It will last just a few seconds but it’s very noticeable. I had a 3 day EEG to see if they could capture that moment, but of course it didn’t happen. Does anyone else experience this sensation? I’m not sure if it’s from the Keppra or some form of a dampened seizure? I never experienced this sensation before all of this happened.

Thank you.

Liked by Leonard, Leonard

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@frosty27

Hi all,
I am 56 years old and have recently been diagnosed with Epilepsy after experiencing a tonic clonic seizure back in October. Testing confirmed TLE on my right side. I have been on Keppra and experienced a lot of side effects the first few weeks but things got better. I do think my mood swings are related to the pill and that is difficult to deal with at times. My question to the group is this: I experience a tingling sensation on the right side of my head at random times. It will last just a few seconds but it’s very noticeable. I had a 3 day EEG to see if they could capture that moment, but of course it didn’t happen. Does anyone else experience this sensation? I’m not sure if it’s from the Keppra or some form of a dampened seizure? I never experienced this sensation before all of this happened.

Thank you.

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Hello, @frosty27, and welcome to Mayo Clinic Connect. Thanks for sharing about your recent epilepsy diagnosis and the levetiracetam (Keppra) you are taking. I moved your post here to this discussion so that you can meet others who are living with epilepsy.

I'm guessing members here can tell you if your experience having side effects the first few weeks of taking levetiracetam (Keppra) also occurred in their cases, and hoping they also have some input for you related to the tingling sensation on the right side of your head at times. Please meet @jakedduck1 @crstyday40 @ryman @robertjr @dawn_giacabazi @bonnieh218.

Did your neurologist have a theory on the tingling sensation? If so, what did he or she think it might be?

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@lisalucier

Hello, @frosty27, and welcome to Mayo Clinic Connect. Thanks for sharing about your recent epilepsy diagnosis and the levetiracetam (Keppra) you are taking. I moved your post here to this discussion so that you can meet others who are living with epilepsy.

I'm guessing members here can tell you if your experience having side effects the first few weeks of taking levetiracetam (Keppra) also occurred in their cases, and hoping they also have some input for you related to the tingling sensation on the right side of your head at times. Please meet @jakedduck1 @crstyday40 @ryman @robertjr @dawn_giacabazi @bonnieh218.

Did your neurologist have a theory on the tingling sensation? If so, what did he or she think it might be?

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My neurologist asked if I got any type of headache after the tingling sensation as she thought it could be a migraine aura. I seldom get a headache after the episode and I rarely had headaches prior to the seizure. Initially I got a headache within an hour or so of taking the Keppra but that has subsided.

Liked by Lisa Lucier, Leonard

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@frosty27

Hi all,
I am 56 years old and have recently been diagnosed with Epilepsy after experiencing a tonic clonic seizure back in October. Testing confirmed TLE on my right side. I have been on Keppra and experienced a lot of side effects the first few weeks but things got better. I do think my mood swings are related to the pill and that is difficult to deal with at times. My question to the group is this: I experience a tingling sensation on the right side of my head at random times. It will last just a few seconds but it’s very noticeable. I had a 3 day EEG to see if they could capture that moment, but of course it didn’t happen. Does anyone else experience this sensation? I’m not sure if it’s from the Keppra or some form of a dampened seizure? I never experienced this sensation before all of this happened.

Thank you.

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@frosty27
Hello Frosty,
First of all I’d like to welcome you to Mayo Clinic connect.
You said testing confirmed TLE (TLE temporal lobe epilepsy.) I assume your EEG was abnormal showing seizure activity in your Right Temporal lobe or do you have a structural abnormality like a lesion on or near your temporal lobe?
May I ask what dose of Keppra your taking and how frequent your seizures are? I agree Keppra may be having an effect on your mood. Keppra is notorious for causing those issues. I have known many people who have had to stop taking it because their symptoms were so severe. Are your mood issues improving over the last few months? Has your neurologist ever mentioned anything about possible focal aware seizures causing your tingling?
Do you ever have Auras prior to your Tonic-Clonic Seizures.
I know this isn’t very helpful and I’m sorry I posted so late I thought I had it posted but that’s what happens when I think.
Take care of yourself,
Jake

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Hello, members of this discussion on living with epilepsy,

Thought you might be interested in a brand new group dedicated to COVID-19 https://connect.mayoclinic.org/group/covid-19/ Mayo Clinic Connect just opened up. If you're interested in following it, click the +Follow in the upper right hand of the page. Please feel free to look through the discussions, participate where you'd like and start new discussions about topics relevant to any aspect of coronavirus, COVID-19.

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My 24 yr old son began having seizures three yrs ago. He has a Neurologist now, has had scans of all sorts, is on medication and still has seizures. The seizures themselves don't seem to be causing as much upheaval as the behavior post seizure. He has Tonic Clonic Seizures which seem to last 2-5 minutes followed by loss of consciousness, then the worse part is the waking up/coming to that usually lasts 10-30 minutes during which he flails around like a zombie, cannot communicate, is totally out of control, can trash a room quicker than 10 happy Labradors knocking everything off tables and shelves with their tails. This is all followed by me having PTSD over the whole incident and feeling completely helpless. Do others have these same experiences? Does he need a different doctor? Is he ever going to be able to live alone or do I need to accept this as my "new" way of life? I'm approaching retirement and can't imagine him having to always live with me and not being able to work and have a life due to these seizures. I need someone to talk to.

Liked by Leonard, saneezrimal

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So sorry.
Some kind of COUNSELLING should be automatically given, to the patient, and to the family.
It just DOESN'T seem to happen. Sadly.

Liked by Leonard

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@momofconcern

My 24 yr old son began having seizures three yrs ago. He has a Neurologist now, has had scans of all sorts, is on medication and still has seizures. The seizures themselves don't seem to be causing as much upheaval as the behavior post seizure. He has Tonic Clonic Seizures which seem to last 2-5 minutes followed by loss of consciousness, then the worse part is the waking up/coming to that usually lasts 10-30 minutes during which he flails around like a zombie, cannot communicate, is totally out of control, can trash a room quicker than 10 happy Labradors knocking everything off tables and shelves with their tails. This is all followed by me having PTSD over the whole incident and feeling completely helpless. Do others have these same experiences? Does he need a different doctor? Is he ever going to be able to live alone or do I need to accept this as my "new" way of life? I'm approaching retirement and can't imagine him having to always live with me and not being able to work and have a life due to these seizures. I need someone to talk to.

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I am so sorry that you or any of us have to go through this… It is so scary , disheartening, depressing, sad….. Makes me want to cry 😢😢. I have a 17 year old with similar issues so I have the same questions. I just keep praying & not lose hope because I know there are things out there that can & will improve his quality of life. It is just so hard to keep searching & not findind things that really work. But please don't give up & I defently would get 2nd, 3rd, 4th ….. Opinions. Lifting you & your family up now.

Liked by Lisa Lucier, Leonard

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My son, 24 yrs old, started having seizures 3 yrs ago. I have witnessed several of these seizures and want to know if what I'm witnessing is typical. He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness. He has no remembrance of any of this and usually "wakes" to find me hovering over him wondering why I'm hovering over him. All this is followed by splitting headaches, sometimes a bitten tongue and generally feeling horrible. It can take him several hours before he even feels like participating in life again. Is this common? Are most of you experiencing these scenarios?

Liked by Leonard

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@momofconcern

My son, 24 yrs old, started having seizures 3 yrs ago. I have witnessed several of these seizures and want to know if what I'm witnessing is typical. He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness. He has no remembrance of any of this and usually "wakes" to find me hovering over him wondering why I'm hovering over him. All this is followed by splitting headaches, sometimes a bitten tongue and generally feeling horrible. It can take him several hours before he even feels like participating in life again. Is this common? Are most of you experiencing these scenarios?

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Hi, @momofconcern – I applaud you for your interest in and pursuit of learning more about seizures, with your 24-year-old son starting to have them three years ago. I've moved your post to this discussion where you were participating before, "Living with Epilepsy: Introduce Yourself and Meet Others," as there have been many participants in this discussion who can potentially respond to your questions in trying to understand seizures.

Hoping that others here can share about whether this seizure pattern that ultimately culminates in basically destroying the room till he regains consciousness, with him having no memory of the whole incident and then feeling rather horrible thereafter and not wanting to participate in things for several hours is typical of their own or a loved one's experiences with seizures. I'd like to invite @caseybach @jakedduck1 @patrassi @crstyday40 @dawn_giacabazi @mmas @frosty27 and others to share and offer some support as you look for answers.

How often does your son have this type of seizure? Has he gotten injured at all during these episodes?

Liked by Leonard

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@momofconcern

My son, 24 yrs old, started having seizures 3 yrs ago. I have witnessed several of these seizures and want to know if what I'm witnessing is typical. He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness. He has no remembrance of any of this and usually "wakes" to find me hovering over him wondering why I'm hovering over him. All this is followed by splitting headaches, sometimes a bitten tongue and generally feeling horrible. It can take him several hours before he even feels like participating in life again. Is this common? Are most of you experiencing these scenarios?

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@momofconcern
Good afternoon,
OK here we go again. I’ve already lost two messages.
First I’d like to welcome you to Mayo Clinic connect.
I think the first and most important thing to understand is that epilepsy is an extremely individualized condition, different people react very differently. You made the following statement,
”He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness.”
The following sounds like a normal tonic clonic seizure, ”stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep” The part I’m not understanding is where you say,
”then rouse and get up off the floor all the while being unconscious)”
Are you sure that he’s not in the post ictal stage (Recovery phase) of his seizure where he’s very confused versus unconscious?
is the episode that you mention his regular seizure or does the getting up part seldom happen. if he is unconscious I’d be curious to know if he’s having a focal impaired seizure after the tonic clonic. I don’t know if that ever happens although I know the reverse can happen which is known as a focal to bilateral tonic clonic seizure.
does your son ever have focal seizures or an Aura? Once he comes to after walking around the room does he sleep again or is he very tired? Have his doctors tried switching, adding or increasing medications in the past three years? since he’s been having seizures for three years has his doctor ever mentioned that he may have intractable epilepsy? i’m not sure where you’re at or if you’re even in the United States. I was going to say that Mayo Clinic in Rochester Minnesota has the best epilepsy center in the US. has he ever had a video EEG? you might request from your neurologist that he be seen by an Epileptologist who are the most knowledgeable epilepsy specialists. they are often better trained in the interpretation of EEG’s.
As far as it taking several hours for him to feel like participating in life or game yes that’s extremely common, which is known as the post-ictal phase.
For the most part of what you describe it's a typical tonic-clonic seizure scenario?
Have you told his neurologist the same story that you did here? i’d be curious in knowing how he replied.
Do you know what type of epilepsy your son has Temporal Lobe, Frontal Lobe or does he have an epilepsy syndrome?
In case you decide to have your son seen at an epilepsy center below is a link of centers throughout the United States, just enter your zip code or State.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
I also posted your message on an epilepsy site and will let you know of any replies.
Blessings,
Jake

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@momofconcern

Here are a couple of replies that I got from the coping-with-epilepsy forum.

1….. It can't hurt to get a second opinion from a neurologist on treatment options for your son. There are a lot of medications out there — a second neuro could review the ones your son is on and perhaps suggest modifications or a different combination that might provide some relief. The neuro might also have advice for how to cope with your son's chaotic post-seizure recovery routine.

Was there a precipitating event for your son's seizures or did they arrive out of the blue? How is he when he's not having seizures? I imagine he has some opinions about the direction his care should take as well.

2….. Often when a person has temporal lobe epilepsy they sometimes get a hot temper after the seizure or before. I've had temporal lobe epilepsy for 48 yrs. and before a seizure I would sometimes get mad and break dishes or punch the wall and I was conscious during all of this. I later found out that the seizure med I was taking was causing a lot of the problems and after I went off of tegretol I was much better.
You may want to take your son to see an Epileptologist which is a Dr. that specializes in epilepsy and knows how to treat it very well. I saw many different neuros over the yrs. but after seeing an Epileptologist the Dr. did a DNA test on me to find the best seizure med for me, he told me what caused my seizures and I was able to have surgery to reduce the seizures. Tell your son to put a cold washcloth on his face and the back of his neck 3 times a day and anytime he starts to feel a seizure begin if he does this it will calm the neurons down in the brain a stop the seizure or reduce them. I was in a medical study a few yrs. ago and they found that my temperature went up a couple degrees but when I put the cold washcloth on my face it stopped my seizures and the coldness from the washcloth calmed the neurons down. My Dr. also put me on cbd oil
(med marijuana) and I am amazed at how that has brought my seizures to the lowest in my life. I wish you and your son only the best and
May God Bless The Both of You,
Sue

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@jakedduck1

@momofconcern
Good afternoon,
OK here we go again. I’ve already lost two messages.
First I’d like to welcome you to Mayo Clinic connect.
I think the first and most important thing to understand is that epilepsy is an extremely individualized condition, different people react very differently. You made the following statement,
”He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness.”
The following sounds like a normal tonic clonic seizure, ”stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep” The part I’m not understanding is where you say,
”then rouse and get up off the floor all the while being unconscious)”
Are you sure that he’s not in the post ictal stage (Recovery phase) of his seizure where he’s very confused versus unconscious?
is the episode that you mention his regular seizure or does the getting up part seldom happen. if he is unconscious I’d be curious to know if he’s having a focal impaired seizure after the tonic clonic. I don’t know if that ever happens although I know the reverse can happen which is known as a focal to bilateral tonic clonic seizure.
does your son ever have focal seizures or an Aura? Once he comes to after walking around the room does he sleep again or is he very tired? Have his doctors tried switching, adding or increasing medications in the past three years? since he’s been having seizures for three years has his doctor ever mentioned that he may have intractable epilepsy? i’m not sure where you’re at or if you’re even in the United States. I was going to say that Mayo Clinic in Rochester Minnesota has the best epilepsy center in the US. has he ever had a video EEG? you might request from your neurologist that he be seen by an Epileptologist who are the most knowledgeable epilepsy specialists. they are often better trained in the interpretation of EEG’s.
As far as it taking several hours for him to feel like participating in life or game yes that’s extremely common, which is known as the post-ictal phase.
For the most part of what you describe it's a typical tonic-clonic seizure scenario?
Have you told his neurologist the same story that you did here? i’d be curious in knowing how he replied.
Do you know what type of epilepsy your son has Temporal Lobe, Frontal Lobe or does he have an epilepsy syndrome?
In case you decide to have your son seen at an epilepsy center below is a link of centers throughout the United States, just enter your zip code or State.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
I also posted your message on an epilepsy site and will let you know of any replies.
Blessings,
Jake

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Thank you Jake for responding. Some of the terms you mentioned are new to me. My son was in college when these seizures began and I went to the Neurologist with him in the beginning stages. Since then, he has regularly seen that doctor but I have not been at those appointments. I have not heard of the Ictal stage, but that sounds right. He reports to me that he doesn't hear me and is not aware of my presence during the post seizure time frame when he is very confused and stumbling and unpredictable. There doesn't seem to be any anger attached to any part of this seizure process, it appears to be more like a zombie. The neuro has not labeled his epilepsy as temporal lobe or frontal lobe or any other that I know of. I'm at a phase of wanting to know more now that he has dropped out of college and returned home and I am experiencing these seizures with him more often. He tried to stay in school and was not letting on how difficult his life had gotten until he finally broke down and admitted that he just couldn't handle the stress of it all. He was failing more classes than he was passing and partly due to the missed classes/tests/etc as a result of the seizures. I want him to have a high quality of life and get a handle on this epilepsy to minimize its effect. I want to understand this better so I can help him more so I really appreciate your help. I will be looking into the Epileptologist idea, I had no idea they existed. Just for record, we are in Georgia.
Namaste'
Cheryl

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