A list of epilepsy questions

[radisyn]

Hi again,

Sorry (@N Sperlo, but at folks in general too) about the "epileptic" thing - as I said, I've really never spoken to anyone about this directly, and I've personally referred to myself that way. I'll watch myself in the future, when and if I do encounter other folks with epilepsy (... is that a preferable phrasing? just wonderin')

Mad

 

[urza3277]

Also, another quick inquiry for you folks:

How old were you when you were diagnosed? And, how long has it been since then? And if it's been limited, do you know how many seizures you've had?

I was found by my father in my crib blue in the face having a tonic clonic so about 25+ years since then. I think I was maybe 2? Not sure on that though.
Ive had really good years and I've had really bad years. Most of my early child hood was fine since I was on Phenobarbital and I was seizure free for a long time. Then for whatever reason I switched meds and I started having tons of auras again.
Basically Things got worse with Highschool up till 10th grade when I did the Ketogenic Diet an extreme form of Atkins. And I was seizure free from 10th grade in 2003 - 2006 Then things got worse again till I had my resection in 2008.As for the count of seizures Iv'e had? I lost count lol.

For me I was 18, and it's only been about three years. I've had seven all told. I've been told it's a little unusual to develop epilepsy after childhood, but I'm not sure if there's any truth to that.
Even one seizure is one too many. Do you have Tonic Clonics or partials and what kinds of meds are you on currently? Keppra has worked the best for me but the Mood changes it causes some people can't tolerate. Especially the keppra rage.
If I can be perfectly Honest with you. I went to Ireland/Europe in 2012 from January - May for my senior semester and I Only had one TC the entire time I was there but It was from an antibiotic I was taking and may not have been necessarily related to my epilepsy. But as soon as I came home to the US and started eating american food again
My Epilepsy went through the Fan. I personally don't believe its a coincidence since you literally are what you eat and diet control has always been the most effective form of controll for me personally. In the form of avaoiding artifical flavors and colors and preservatives like sodium Nitrate and BHT and TBHQ.

Did you ever have a chance to drive or do you live in an area with public transit?

Also Who told you that its not common to develop Epilepsy after childhood? Alot of Atheletes especially Football players develop E or Seizures from the head injuries that are part of their profession. Also the Body literally changes completely every 7 years roughly and during puberty too people can still develop E. Maybe the info you received was directed at a specific type of epilepsy?

Cheers!
Urza3277

 

[CQ:)]

How old were you when you were diagnosed?
I was 9 months old when I had my 1st tonic clonic but wasn't diagnosed until I was about 11 months. I took Tonic clonic seizures on a regular basis until I was about 3 & was kept on medications until I was 7.

I went 21 years seizure free until I started taking seizures again when I was 24.

And, how long has it been since then?
Do you mean how long was it since I was diagnosed???
If so I was 1st diagnosed in 1978 & my seizures returned in May 2002.

And if it's been limited, do you know how many seizures you've had?
I had brain surgery on 10th March 2011 & I have been seizure free since the surgery but I still have funny feelings in my head which are usually triggered by stress

 

[radisyn]

Also, another quick inquiry for you folks:

How old were you when you were diagnosed? And, how long has it been since then? And if it's been limited, do you know how many seizures you've had?

I was found by my father in my crib blue in the face having a tonic clonic so about 25+ years since then. I think I was maybe 2? Not sure on that though.
Ive had really good years and I've had really bad years. Most of my early child hood was fine since I was on Phenobarbital and I was seizure free for a long time. Then for whatever reason I switched meds and I started having tons of auras again.
Basically Things got worse with Highschool up till 10th grade when I did the Ketogenic Diet an extreme form of Atkins. And I was seizure free from 10th grade in 2003 - 2006 Then things got worse again till I had my resection in 2008.As for the count of seizures Iv'e had? I lost count lol.

For me I was 18, and it's only been about three years. I've had seven all told. I've been told it's a little unusual to develop epilepsy after childhood, but I'm not sure if there's any truth to that.
Even one seizure is one too many. Do you have Tonic Clonics or partials and what kinds of meds are you on currently? Keppra has worked the best for me but the Mood changes it causes some people can't tolerate. Especially the keppra rage.
If I can be perfectly Honest with you. I went to Ireland/Europe in 2012 from January - May for my senior semester and I Only had one TC the entire time I was there but It was from an antibiotic I was taking and may not have been necessarily related to my epilepsy. But as soon as I came home to the US and started eating american food again
My Epilepsy went through the Fan. I personally don't believe its a coincidence since you literally are what you eat and diet control has always been the most effective form of controll for me personally. In the form of avaoiding artifical flavors and colors and preservatives like sodium Nitrate and BHT and TBHQ.

Did you ever have a chance to drive or do you live in an area with public transit?

Also Who told you that its not common to develop Epilepsy after childhood? Alot of Atheletes especially Football players develop E or Seizures from the head injuries that are part of their profession. Also the Body literally changes completely every 7 years roughly and during puberty too people can still develop E. Maybe the info you received was directed at a specific type of epilepsy?

Cheers!
Urza3277

I do have tonic clonics, and I'm on Lamictol which seems to work fine for me, especially compared to Keppra which did not agree with me.

As for diet, I have no idea if my diet affects my epilepsy. I've always been lucky enough to eat quite well, and presently almost obsessively so - veggies, fruit, beans, grains, etc. with very little artificial/processed anything, much less colors or preservatives. Six of my seven seizures were in the US - I traveled most of last year and only had a seizure when I stayed in one place for several months, though my med intake didn't change. I'm not sure if I can live my life constantly second-guessing every last thing that might affect my body chemistry - there's just too much going on, I feel, too many variables. I think I would just feel paralyzed trying to parse them all out. Have you had help from neurologists on this or has it all being personal experience?

Early on my mom tried to blame it on such commonplace/nebulous things as lack of sleep, stress, hunger, thirst, etc. - none of which I am ever particularly susceptible to. I try not to live my life in fear, tiptoeing around my epilepsy as if I could "awaken" it necessarily. Which is why I'm so curious about "fighting off" seizures, because I've had several experiences in which I've felt the initial aura twinges and have either just been lucky or have actually prevented it somehow... though I'm still not sure if that's even possible, it doesn't stop me from trying. I just don't know, my neurologist was very vague and shrugged it off noncommittally.

As for the age thing, I honestly know almost nothing about different kinds of epilepsy - I know general terms but not much specific. I had never suffered a particularly grievous head injury before my first seizure (one time I fell off my bike onto my face, many years before my first seizure). Not that that rules anything out, really.

So much to know, so much to wonder about.

Thanks a billion again!

Mad

 

[marika853]

Welcome Radisyn,
I am one of those that developed E later in life. I am 60 years old but started having auras at 53. Coincidentally, I was going thru menopause, which I directly attribute my seizures to. I had also had a lot of stress in my life at that time. Luckily, when I was having these my husband was with me. I started taking generic Keppra in 2006. I've been on it ever since. Unfortunately, my beloved husband of 38 yrs. passed away in 2008 and I had several seizures. Luckily, I only have had the auras and have been able to avoid ever getting hurt. I am very well on 750 mg. Keppra daily. I was on a much higher dosage initially but have reduced it myself.
To answer your question of how it impacts my life. I have 3 grown sons that I live close to. I watch my 2 yr. old grandson during the day. I also occasionally take care of my son's disabled sister-in-law, who is 37. I drive, I go to church and enjoy people. My children know I have this but I think they don't realize how serious it Can be. All my friends know and I think they don't realize either how bad it Could be.
I sometimes am fearful of something happening during the night but the way I look at it, "if it's meant to be, I can't do anything" I try not to dwell on it. I think we can let something consume us, and it will, or we can live our lives to the fullest and just Let go and Let God!
M

 

[N Sperlo]

How old were you when you were diagnosed?

16

How long has it been since then?

11 years

If it's been limited, do you know how many seizures you've had?

My seizures are controlled now. Until I was controlled I could have had tens a day (partial). I stopped taking my medicine and I could have had many then (partials). I believe I have had three tonic clonic seizures before I had the seizures under control once again.

 

[giveasmile]

I had absence seizures in childhood that were never diagnosed. Simple/complex partials and nocturnal-only tonic clonic age 18-38, all misdiagnosed as some sort of mental illness. Age 38 my tumors were found. Finally sent for (first) Neuro consult and EEG and diagnosed. I still have all the seizure types I had when younger and now have tonic clonic in daytime too.

Lamictal had the least side effects for me and stopped all but one kind of my seizures. Sadly, I got a bad rash and had to stop it.

Tried Keppra, Topomax, Phenobarbital, Klonopin/Ativan, Neurontin, Just Ativan, Trileptal to no avail. Now I am on Vimpat which I really can not afford and another will be added if it won't work by itself.

I don't get aura or warning. Sometimes I have a partial seizure before it generalizes, but I'm either not aware of either, or not able to stop the progression. When I was younger, and didn't know it was seizures, I'd fight and fight to try and break out of the partials. It became very, very, traumatic as all it did was cause me to be semi-conscious at the start of my tonic clonic-- something I would not wish on my worst enemy. Now, it's rare for me to be aware that anything is happening until it's over.

 

[Nakamova]

Hi Radisyn, welcome to CWE!

Here are my answers to your excellent questions:

Have you ever been able to "stop" a seizure, and how does that work for you? No -- though that's because I don't get any true warning aura/simple partial. I just launch right into the tonic-clonic.

What's the worst seizure-related injury you've sustained? Dislocated shoulder. I was unconscious during the dislocation which helped, but I figured it out when I "came to". Additional seizures further damaged the shoulder (it started popping out all the time), so I had to have surgery.

What activities have you stopped doing since you've been diagnosed? Other than a brief period where I wasn't allowed to drive, nothing has changed for me.

Has it changed your activities? No, though I made a point of moving to a location with good access to public transportation in the event I were to lose my driving privileges in the future.

Do you drink? Yes, I'm fortunate that I can have a few mixed drinks or glasses of beer/wine without it being triggering or making me too sleepy.

Do any drugs? Only in my distant past, and I stopped long before I started having seizures.

Would you say your epilepsy is "controlled"? Yes, I've been fortunate that my seizures responded to medication. I'm nearly 6 years seizure-free.

Do you tell many people? No. My main friends and family are aware, and I would share it in the right context, but I don't bring it up in conversation.

Like, how long after you meet someone/make a friend do you wait to tell them?
Since my seizures are controlled, it doesn't tend to come up. Some of my newer friends don't know at all.

Do you worry about how people view you when they find out? I do think there is still a lot of misunderstanding and stigma when it comes to epilepsy, but I have no problem setting someone straight if they have the wrong idea.

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...) No, in fact I'm the opposite -- my friends and family tend to seek me out as a calming influence! But I think some of those traits are more associated with partial seizures. In some cases the moodiness and ADD can be misdiagnoses of what are actually partial seizures, and in other cases they may be co-occurring disorders.

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood? I think some neurologists with limited experience are unaware of all the forms in which epilepsy can manifest, and of the individual factors that may affect treatment. In addition, some are too quick to rely on the EEG as the gold standard of treatment (whereas clinical symptoms should be the deciding factor). I've found that self-education via the web has been useful to fill in in some instances where the neurologists may have fallen short.

What meds do you take? Lamotrigine.

How do they affect your behavior (if at all)? As far as I know, very little.

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)? Even though I spend a fair amount of time here at CWE, epilepsy is not a big part of my identity. This is probably due in part to its late onset (age 35) and to being well-controlled at this point.

what are your auras like (if you have any that you recall)? No auras, though long before my seizures, I would on very rare occasions experience scintillating scotoma (flashing zigzag light patterns). Could have been some form of migraine, or some kind of early sign that my brainwaves weren't always well-behaved.

How old were you when you were diagnosed? 35

How long has it been since then? 15 years.

If it's been limited, do you know how many seizures you've had? Between 15 and 20 tonic-clonic seizures. Though my seizures are now controlled by medication, there were some busy periods where I tried going med-free (with my doctor's supervision), and others where my dose was on the low side and needed to be increased a tad.

 

[jh2]

How old were you when you were diagnosed?
i was 11 when i was diagnosed.

And, how long has it been since then?
19 years

And if it's been limited, do you know how many seizures you've had?
i've had 5 grand mal seizures. but countless complex and simple partials.

Have you ever been able to "stop" a seizure, and how does that work for you?
not completely. but i amaware of my triggers and when i do not feel well.ill often find a place to rest awhile.

What's the worst seizure-related injury you've sustained?
slight asphasia from lack of oxygen to the brain during a seizure in the ocean.

What activities have you stopped doing since you've been diagnosed?
i dont drink alcohol

Has it changed your activities?
no but it has made me more cautious as to what activities i undertake.

Do you drink?
no

Do any drugs?
no

Did you do so and then stop after being diagnosed?
i did drink alcohol but never to excess. i found alcohol and tegretol didnt mix so stopped.

Would you say your epilepsy is "controlled"?
compared to others i have spoken too my grand mals are well controlled, but my simple and complex partials still surface from time to time.

Do you tell many people?
if they ask i am open to discussing it with them. but i dont go out of my way to tell people. usually only letting bosses and university lecturers etc know

Like, how long after you meet someone/make a friend do you wait to tell them?
if it comes up ill tell them.or if we find ourselves in a situation were disclosure seems neccessary eg the pool.

Do you worry about how people view you when they find out?
i use to nut not anymore. i will answer their questions. but if they still react in a negative way their not worth my time.

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...)
no. if anything i have ODD characteristics

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood?
i have had good and bad neurologists. unfortunately epilepsy itself has been embedded in negative stigma for years (mostly misinformed). and there are over 40 types of seizures . neurologist do they best they can in each individual case.

What meds do you take? How do they affect your behavior (if at all)?
i take 800 tegretol XR a day. my behaviour is generally not affected

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way).
epilepsy is a part of who i am , but it doesnt define who i am.

 

[C0urt]

Some of the many questions I've had: Have you ever been able to "stop" a seizure, and how does that work for you? no clue

What's the worst seizure-related injury you've sustained? i ripped off an ear

What activities have you stopped doing since you've been diagnosed? swimming and martial arts tourneys.

Has it changed your activities? a bit, but more the injuries have stopped me from a lot of things pinched nerve in my shoulder, that sort of thing.

Do you drink? Do any drugs?no
Would you say your epilepsy is "controlled"? no

Do you tell many people? depends, the situation Like, some cases you can't avoid telling people. I have a myoclonic jerk when my blood sugar gets low.

how long after you meet someone/make a friend do you wait to tell them? not sure. met a girl few night a didnt tell her, but i didnt tell her my name either.

Do you worry about how people view you when they find out? considering the list of thing i find out people have or at least think they have on a regular basis, nah. I can count the number of people i know on disabilty on both hands

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...)nah i am pretty laid back, rule number one. never be in a rush. makes waiting rooms eaiser.

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood? What meds do you take? LOTS!!

How do they affect your behavior (if at all)? Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?not really, because I have other things to think about, and I look sexy in spandex. :-D

 

[valeriedl]

Have you ever been able to "stop" a seizure, and how does that work for you?
I usually only have partial seizures, with maybe one tonic colonic (the type when you shake) a year. I have a VNS (vagus nerve stimulator) and if I feel that I'm having an aura (semi partial seizure) I will use it and it may stop a complex partial from coming on, not always though. If I'm having a complex partial there is no actually stopping it I just have to ride it out.

What's the worst seizure-related injury you've sustained?
I haven't had any injuries so far, knock on wood. The only thing is I will get a major headache after the seizure that will last for hours.

What activities have you stopped doing since you've been diagnosed?
I'm unable to drive now.

Has it changed your activities?
Not really. Since I can't drive I can't get together with my friends as often, they all live about 45 minutes away. I can't go shopping quite as much as did because I have to rely on someone else to get me to the store.

Do you drink?
I never really drank in general, before and after having epilepsy. I do have a drink every so often, only a glass, and have never had any problems.

Do any drugs?
Only my prescription ones.

Would you say your epilepsy is "controlled"?
No. With the meds I'm on and the VNS I'm having less seizures a month than I had at the beginning.

Do you tell many people?
My family and close friends all know.

Like, how long after you meet someone/make a friend do you wait to tell them?
It depends on how long I'm going to be spending time with the person. If I'm going to be with them all day I want them to know what's going on if I have a seizure. On my first date with my now husband I let him know for two reasons - first to let him know what to do if I have a seizure and second - just to make sure he knew what he was getting himself into. If he didn't want to deal with a woman who had epilepsy/seizures then I didn't want either of us to waste our time dating each other. My boyfriend that I was with when I had my first seizure stayed with me for a few months then broke up with me because of it.

Do you worry about how people view you when they find out?
A lot of times when people find out I have epilepsy they will look at me because they think 'epilepsy' and 'seizure' mean shaking. I explain to them what my seizures are like. In general I don't care how they view me.

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...)
I'm on Keppra and have Keprage. That has made me want to punch a hole in the wall several times. Other than that I'm a pretty funny laid back person. I try not to get worried about things too much because that can cause a seizure for me.

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood?
I've had the same neurologist for about 7 years now and I love him. He takes time with me during my visits, it's not just and in and out thing. He takes time with me asking questions and listening to my answers. I may be trying to describe something to him about a seizure that I've had but I can't think of the words. He can usually finish the sentence for me saying exactly what I was trying to. If I have any questions for him he will give me advice on what to do or make changes to things. If I call the office with a medical question it's usually him who calls back, not a nurse or secretary. I was seeing his nurse practitioner for some of my visits and she was a whole different story. She had all the answers and knew everything. I would tell her problems that I was having and she always told me that I wasn't taking my meds and that's why these things were happening. I blew up at the office and told them that I was not seeing her ever again. If I couldn't see my actual neruo for my visits then I was finding a new place to go. Haven't seen, or talked to her since I did that.

What meds do you take?
Depakote, Tegretol, Keppra, Lamictal and I have a VNS

How do they affect your behavior (if at all)?
I have Keprage from the Keppra. I know that some of them make me tired, not sure which ones though.

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
I don't incorporate it in my self-image at all. I keep myself busy doing things like spending time with my family, reading, crossword puzzles, crochet and many other things (cleaning should be one of them too!). I don't just sit there and think 'I haven't had a seizure in a while now so I know one is due to come on soon'. The only time I really think about it and talk about it is when I'm on here, which is a good thing not a bad thing.

what are your auras like (if you have any that you recall)?
During an aura or semi partial seizure I will get confused about what I'm doing. Have some trouble talking, like I can't figure out the right word to say. Sometimes my lips will tingle and I'll get blurred vision.
During a complex partial I'll blank out and stare. Talk (if that's what you want to call it) in just slurred speech, not actually saying words. I may pick up things and play with them, not using them for what they should be used for. Once I took a pillow in a pillow case and kept trying to put it on my leg like a sock. My husband tried to take it off of me but I wouldn't let him have it so he just let me keep doing what I was doing till I was out of the seizure.

How old were you when you were diagnosed?
26

How long has it been since then?
11 years.

If it's been limited, do you know how many seizures you've had?
On average I have about 7 partials (semi and complex) a month. I usually have 1 tonic colonic a year.

 

[dani_mc]

Also, another quick inquiry for you folks:

How old were you when you were diagnosed? And, how long has it been since then? And if it's been limited, do you know how many seizures you've had?

I have not been diagnosed as such (still awaiting) but i had my first seizure aged 22, and have had 7 in the five years since. I have never been on any medication for them, as they have always occured the night after heavy drinking (something i always felt i could control by drinking in moderation, but now have decided the risk isn't worth it-teetotalism beckons!).

Have been receiving mixed reviews regarding my situation. I've been told in some cases it counts as a diagnosis after your second seizure, whereas some say that if alcohol or some other external factor is casuing it, it's not necessarily epilepsy. I have never had any kind of episode in 'normal' day to day life, and went nearly 2 years without anything happening at all (without meds) Really don't know what to think!

 

[Minkous]

Hope this helps you hear other peoples views, I've found other peoples answers helpful too:

Have you ever been able to "stop" a seizure, and how does that work for you?
I am new to all of this and diagnosed within the past 1.5yr but some seizures I can feel the aura or a bad feeling coming and I feel as though I'm mentally trying to hold on, recently I was able to kinda hang in there till I reached the hospital and got shot up with some meds. But as far as tonic clonics, they come with no warning

What's the worst seizure-related injury you've sustained? Prolly just bad bruising and the chewed up tongue of course, I've been pretty fortunate

What activities have you stopped doing since you've been diagnosed? Besides the using driving, riding a motorcycle, work... Idk social life has kinda died without a car and friends that live locally

Has it changed your activities? Idk if it's my medicine but I've recently been more creative and really getting into finer woodworking and doing things the old school way and just really taking my time and enjoying projects

Do you drink? Hell No! I'd be too scared

Do any drugs? If you consider marijuana then yes. I smoke and have been smoking thru the day daily for years. My doctor didn't tell me to stop; his response was "just don't do cocaine".

Would you say your epilepsy is "controlled"? Not close

Do you tell many people? My mom seems to babysit me and loves to try and talk for me like I'm mentally challenged and tells everyone which is embarrassing

Like, how long after you meet someone/make a friend do you wait to tell them?
Immediately, only for my own safety and security

Do you worry about how people view you when they find out? Seems like they are freaked out and don't want to be around or be responsible if something happens

Would you say you have a particularly manic mind/add ish? My mind never turns off, until i smoke a joint am I able to chill and relax from thinking so much

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual case understood?
My dad works in the med field and explained that the mind is very complex and what works for one person might not work for another and some meds may work for a period and then stop working

What meds do you take? Lamotrigine. Vimpat. Klonopin. Prozac

How do they affect your behavior (if at all)? Noticing that they were making me very tired but learned if I stay busy doing something then I won't get tired , it's weird I know

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
Religion has honestly played a big part in how I view my condition. So I try not let it define me, I try my best to accept how God made me. Even tho at times you want to give up

what are your auras like (if you have any that you recall)? Panicky, light headed, gagging, clammy

How old were you when you were diagnosed? 26

How long has it been since then? 1.5yrs

If it's been limited, do you know how many seizures you've had? Too many to count, recently had 18 in one weekend and they are getting worse

 

[petero]

Hi there and welcome aboard!
My name is Peter and here are my answers specifically:

Have you ever been able to "stop" a seizure, and how does that work for you?
-no, having had tonic-clonic and absence seizures

What's the worst seizure-related injury you've sustained?
I'm not really sure. I have a big scar on my lip now, but also I've suspected I have broken bones I never checked out (chipped hipbone and arm). And something like PTSD I guess.

What activities have you stopped doing since you've been diagnosed?
Driving. Enjoying.

Has it changed your activities?
Bussing everywhere can be a drag. But if you bus, get the "Transit" app

Do you drink?
12 yrs. sober, recovering alcoholic.

Do any drugs?
I smoke marijuana when I can.

Did you do so and then stop after being diagnosed?
I did ecstasy a few times about 15 years ago.

Would you say your epilepsy is "controlled"?
I still have seizures so I guess not, but they seem to be getting more regularly timed - weird.

Do you tell many people?
Whoever needs to know - ppl I'm around a lot who need to hear the "in case I have a seizure" thing

Like, how long after you meet someone/make a friend do you wait to tell them?
Within the first couple times of being with them.

Do you worry about how people view you when they find out?
No. Epilepsy is one of the worst diseases. If they have a problem with it then they don't deserve to be around me.

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...)
Manic, rapid-thinking. ADDish

Have you noticed how little neurologists generally know about epilepsy?
No. On the contrary. It's just that what they do is treat it and not counsel people regarding it. I'm sure they could talk you to death with knowledge.

Like, how different everyone is and how even individual cases are not well understood?
True-ish

What meds do you take? How do they affect your behavior (if at all)?
Phenytoin, Vimpat, Invega are my Rx's - and marijuana.

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
My life is altered by it in many ways. But not my state of mind.

 

[MIKEJ]

Have you ever been able to "stop" a seizure, and how does that work for you?
Sometimes when I have a partial seizure it seems like I can control it. It's like im able to control a very weird dream or travel in time.

What's the worst seizure-related injury you've sustained?
I broke a cheek bone. I came to after a seizure and later that day I noticed my left cheek was grinding above my teeth and hurt like hell so went to the hospital and ended up with a plate and a few screws in my face. But the worse was a mental injury about 18 months ago I had 5 seizures then unconscious for 5 days and when I came to I had amnesia for the past 10-12 years and to this day still have very few memories and the ones I do have it's like I remember looking at a picture of an event but not being there.

What activities have you stopped doing since you've been diagnosed?
Driving has been off and on for years but the most disappointing was the permanent loss of my pilots license I used to love to fly.

Has it changed your activities?
Not for the most part except for whats listed above.

Do you drink?
Not as a rule I can have a couple of glasses of wine now and again maybe once every 3 months.

Do any drugs?
No

Would you say your epilepsy is "controlled"?
NO 2 weeks ago I was 2 days in emergency strapped to the bed.

Do you tell many people? No. My main friends and family are aware, and I would share it in the right context, but I don't bring it up in conversation.

Like, how long after you meet someone/make a friend do you wait to tell them?
I usually see how it goes but I usually dont mention it especially if it's a parent of one of my kids friends.

Do you worry about how people view you when they find out?
I do think there is still a lot of misunderstanding and stigma when it comes to epilepsy, but I have no problem setting someone straight if they have the wrong idea.

Have you noticed how little neurologists generally know about epilepsy?
Not really I find they are more like mechanics and just look to fix the broken part of the brain and lack bed side manner so they come across fairly sterile and lacking compassion.

What meds do you take?
Carbamenzapine and Keppra

How do they affect your behavior (if at all)?
Keppra I hate It gives me a very short fuse.

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
I've become very isolated and introverted.

what are your auras like (if you have any that you recall)?
I tend to seem like I travel in time and get very nauseated but after a full tonic clonic seizure I lose a great deal of memory and recognize everyone I look at for about a week.

How old were you when you were diagnosed? 30

How long has it been since then? 17 years.

 

[Phredhead]

Here are my answers.

Have you ever been able to "stop" a seizure? Yes, I have an aura before each seizure. I felt it coming on while watching 4th of July fireworks one year, I immediately ran inside, laid down on the bed, closed my eyes and focused on something I knew was real. I was able to slowly make the aura go away and didn't have a seizure.


What's the worst seizure-related injury you've sustained?
I hit my head pretty good falling out of a very high chair.

What activities have you stopped doing since you've been diagnosed?
Drinking. Diving. And recently, driving.

Has it changed your activities?
Not for the most part. I still do everything else, just no drinking, diving or driving.


Do you drink?
Not anymore, but I was never a big drinker anyway

Do any drugs?
Nope


Would you say your epilepsy is "controlled"? Not really


Do you tell many people? Just my family knows right now. I will have to tell my director about it because I will need time off for the VEEG and I'm sure it will quickly spread around my unit.

Like, how long after you meet someone/make a friend do you wait to tell them? I don't unless I need to.


Do you worry about how people view you when they find out? Yes, they either hover or steer clear of you, like they're going to catch it.

Would you say you have a particularly manic mind/add ish? Yes, I was diagnosed with ADD when I was 8, but have only been taking meds for about 3 years.


Have you noticed how little neurologists generally know about epilepsy? Being in the medical field myself, I know how difficult it is to know everything about everything. Neurologists cannot possibly know everything there is to know about Epilepsy, that's why there are Epileptologists.



What meds do you take? Currently 500mg of Keppra twice a day. I also take Adderall for ADD and Synthroid for hypothyroidism.

How do they affect your behavior (if at all)? The Keppra makes me unfocused (hence the Adderall) and kinda out of it. It also makes me get agitated easily, thankfully my husband is a very patient man!

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)? I do not define myself by it at all. I wear the label everytime I put my medical alert bracelet on. I have epilepsy, epilepsy doesn't have me.



what are your auras like (if you have any that you recall)? My whole body starts tingling, starting with my head and working it's way down to my toes. Once it hits my toes everything kinda slows down, almost dream like, my ears feel like they have cotton in them and I hear a loud ringing in my ears. Once the ringing starts, I don't remember anything after that. I wake up on the floor with the ringing, cotton and tingling.

How old were you when you were diagnosed? 22


How long has it been since then? 7 years

If it's been limited, do you know how many seizures you've had? 5 as far as I know. They don't really know what kind I have, all signs point to partial onset, but you never know.










Sent from my iPhone using Tapatalk

 

[Belinda5000]

Have you ever been able to stop a seizure? Ye I have been.
I never know when I might have an aura.

what's the worst seizure -related injury you've sustained?
I busted my head open falling out of the shower onto the tile.

what activities have you stopped doing since you've been diagnosed?nothing

Has it changed your activities?I wear a helmet when I'm having a lot of seizures.

Do you drink? Never have

Do any drugs? just prescription.

Would you say your epilepsy is controlled? nope

Do you tell many people? family,friends ppl I'll be around a lot.

Like how long after you meet someone?Depends on the situation if they need to know.

Do you worry about how people will view youn when they find out? nope

would you say you have a particularly a manic mind/addd ish?no

Have you noticed how little neurologist know about epilepsy?I noticed the specialist knew less than my neuro who was a professor.


what meds do you take? 900MG Tegretol Topamax400MG Phenobarb 90MG.

How do they effect my behavior ? not at all.


Have you "incorporated" epileptic " into your self image?I do not define myself by epilepsyI am more than a person that just has seizures.

What are your auras like?when I get an aura I just get a sensation in my head.

How old were you when you were diagnosed?2

How long has it been since then?50 years

 

[bighealey]

I was/am 54. I had a head injury when I was a teen skiing. Now I am having seizures some 40 years later. I had two big ones and now loads of little ones through out the day.

 

[jenagade]

Have you ever been able to "stop" a seizure, and how does that work for you?
Not at all, I feel really aware during some of them, like I should be able to stop whats going on, but I can't.

What's the worst seizure-related injury you've sustained?
Concussion from a fall, it was a short fall too so just watch out for that, I was sitting up against a wall after having a seizure then started having another one and hit the deck.

What activities have you stopped doing since you've been diagnosed?
Driving is the big one, I've had my license suspended twice since being diagnosed due to uncontrolled seizures. More recently I have stayed away from anything which could become risky if I fell, like cooking etc. but that is because my seizures are out of control at the moment and I am very unstable, once I get better I will go back to doing that sort of thing.

Has it changed your activities?
Not really, I am a bit more cautious when doing some activities though.

Do you drink?
I continued to drink, maybe a few in the weekend, after I was diagnosed, but I stopped drinking entirely 3 months ago when I started having seizures after drinking.

Do any drugs?
I have used marijuana once since being diagnosed, no adverse effects. I wasn't a regular user before my diagnosis and had only used it a handful of times.

Would you say your epilepsy is "controlled"?
At the moment not at all, I've had problems changing over medications and am having multiple seizures a day at the moment.


Do you tell many people?
Previously I would only tell people who I would be spending time with long term, as my seizures were controlled, didn't even tell my work initially because it wasn't an issue. Now I tell anyone who is going to be around me for any extended period of time just so they know what to do.

Do you worry about how people view you when they find out?
No, people do get a bit uncomfortable around me because of it, but when I tell them that I don't have tonic-clonic seizures they relax. I understand the unease people feel because my ex had tonic-clonic seizures and initially they terrified me because it sounded like he was choking and they were quite violent.

Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...)
I have a bit of a manic mind, initially it was thought I was bipolar, because I also have depression, but that was one of the things that indicated I might be having seizures.


Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood?
I've noticed that some GP's and nurses don't know what to do when someone has a seizure, which is a bit worrying since that sort of thing is taught in basic CPR classes. As for neurologists, the ones I have seen seem to know a lot, but they divulge very little.

What meds do you take?
Lamactial and Keppra. I was on Tegretol XR but I started having really bad side effects on them.

How do they affect your behavior (if at all)?
One consistent thing seems to be that I feel quite heavy and in a bit of a haze.

Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
No, it does worry me, I do think about it a lot and its definitely at the forefront of my life at the moment but I don't feel that it has changed my self-image at all.

what are your auras like (if you have any that you recall)?
I sometimes have an intense feeling of rage which swells up rapidly until its like someone flicks a switch and then I have a seizure. Other times I get a feeling like I'm being pulled out of my body and get a tingle up my spine.

How old were you when you were diagnosed?
25

How long has it been since then?
2.5 years