A list of epilepsy questions

radisyn

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Hi there, folks -

My name is Madisyn, I'm 21 years old and I've been diagnosed with epilepsy for three years since I had my first (of seven) seizures when I was 18.

I've got a good support system, but I haven't spoken with any epileptics ever as far as I recall. So, I'm curious what peoples' general experiences are; what are your auras like (if you have any that you recall)?

Some of the many questions I've had: Have you ever been able to "stop" a seizure, and how does that work for you? What's the worst seizure-related injury you've sustained? What activities have you stopped doing since you've been diagnosed? Has it changed your activities? Do you drink? Do any drugs? Did you do so and then stop after being diagnosed? Would you say your epilepsy is "controlled"? Do you tell many people? Like, how long after you meet someone/make a friend do you wait to tell them? Do you worry about how people view you when they find out? 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...) 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? 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)?

I have lots of questions apparently, which I'm just now realizing... if you have any thoughts I'd love to hear them. This is my first time ever expressing any of these worries/questions, so anything you know/think will be helpful and interesting to me.

Thanks for you time and attention!

Madisyn
 
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Belinda5000

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Hello Madison,
Your lucky to have a good support system.
1.you can't stop a seizure once it starts you have to let it run its course.
2.I've broken my nose,busted my teeth just for a few.
3.I don't drink and never have really cared to drink.You don't drink with your medicine.
4.I tried my hand at pot but that's it.
5.You don't tell everyone you have epilepsy unless your going to be around that person a lot or you just want to tell them .It's up to you how long u wait till u tell them.
6.My neuro I've had 23 years and he knows a lot and use to be a professor.
I'm not an epileptic I'm a person with a seizure disorder and I'm a person first.
7.I take Tegretol,Topamax,Onfi,Phenobarb.
I was diagnosed when I was 2 years old < I've have epilepsy 50 years.
I don't let my epilepsy define me.I get out and I go places and if I have a seizure thats life.I'm intractable and I've had brain surgery and the VNS and my sz's keep coming.
 
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Hi and welcome! I'm also glad to hear that you have some good support. Tried to answer all your questions. Let us know your answers, too.

Have you ever been able to "stop" a seizure, and how does that work for you?

Nope, never been able to stop.

What's the worst seizure-related injury you've sustained?

Concussion and joint tears. I've been pretty fortunate.

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

Driving

Has it changed your activities?

Yes, but some of it is medication related right now

Do you drink?

Not since I was 25. For me drinking made things worse.

Do any drugs?

If marijuana becomes legal in my state I will use it. For me it made things better.

Did you do so and then stop after being diagnosed?

Stopped before I was officially tested/diagnosed.

Would you say your epilepsy is "controlled"?

Not really, not yet.

Do you tell many people?

Don't go out of my way to tell people but if it comes up I'm open about it.

Like, how long after you meet someone/make a friend do you wait to tell them?

I only mention if there is a reason for it to come up.

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

At this point in my life I don't really care

Would you say you have a particularly manic mind/ADD-ish attributes?

I was diagnosed with some sort of psychosis and ADD before anyone thought to stick an EEG on my head.

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

Yep

What meds do you take? How do they affect your behavior (if at all)?

Right now, Trileptal (and Ativan and Klonopin if I've had seizures.) It's new and has me depressed at the moment.

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, not really.
 
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radisyn

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Wow! Yours sounds much more intense than mine, though I know it's an unpredictable and very widely differentiated condition.

Do you have any triggers? I know of photosensitive epileptics, and people who are sensitive to alcohol but nothing else.

I find I'm reasonably open about it now, but when I first was diagnosed I was not only in denial (which led to more seizures because I didn't take my meds for a while), but I kept it a secret because it scared me to suddenly have that adjective applied to me - though I know I'm a person first, it's still a defining characteristic of my life. I've come to terms with it much more since then, but still.

I don't see my neurologist much, but when I asked him if one can "fight off" seizures he basically said everyone is different and some folks have ways to stave them off. I've learned about a case study of a woman who used to be able to fight them off by going for a run. And I know I've felt them coming on and managed to lie down and focus on not seizing. But I've also tried to fight them off and seized anyway, and fallen a few times as a result (got two black eyes one time).

Yeah, it seems it's pretty unusual that I developed this so late - it's usually a thing from very early childhood.

Thanks for your input! You're the first person I've ever gotten any answers from, it's very enlightening.
 

radisyn

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@giveasmile

It's interesting, I asked my neurologist once if seizures can be "fought off" and he answered very neutrally, like he thinks some people can, but that it's different for everyone. I was under the impression that neurologically speaking you can't stop them - my neuroscience-major friend explained the process to me, and it sounded unstoppable, but I've read/heard case studies about folks who could - such as a woman who would go for a run as soon as she felt a seizure coming on.

About a week ago, I felt my aura coming on (speaking of which, what are your auras like? I've heard some people feel seizures coming on long before they actually happen, but I experience mine as a deluge of images and thoughts - nothing random, everything relevant to my life, just all at once - and then I black out and seize very shortly after) while I was on a run. I stopped and laid down on the path and focused for a couple of a minutes, breathing evenly and whatnot, and then felt better and got up and finished my run with no incident.

I have a tendency in my life to be very open, and I tend to break the ice in social situations with somewhat personal information, as I find it often makes people feel at ease and people are more inclined to trust/like me since I let them in so openly. So it is odd for me to have to eschew this particular detail early on in my interactions, since it tends to make people uncomfortable...

I take Lamotrigine and have noticed no real side effects - it's also a medication used for bipolar disorder, so if anything it probably calms me down/stabilizes me. I did take Keppra for a little bit, and it caused me to rage - known as "Kepprage", I've heard - so I went off that one rather quickly. I take it twice a day, but it seems if I forget even a couple I will seize almost invariably. I'm still learning, obviously (it's only been about three years), which is why I know next to nothing about epilepsy/seizures in general, much less my own. I guess part of me is still burying it/denying it a little, but by joining this forum I'm trying to enhance/round out my knowledge as much as I can...

Madisyn
 

chmmr

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Madisyn, not sure if you know this but an aura is actually a type of seizure as we'll ( they are called partial seizures because they happen in one area of the brain as opposed to a tonic clonic seizure that is a generalized seizure because it happens throughout the whole brain)

:)
 

radisyn

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Oh, I thought an aura was the precursor feeling to a seizure... Wikipedia defines it as "a perceptual disturbance experienced by some with migraine or seizures before either the headache or seizure begins".

"When occurring, auras allow epileptics time to prevent injury to themselves and/or others. The time between the appearance of the aura and the migraine lasts from a few seconds up to an hour. The aura can stay with a migraine sufferer for the duration of the migraine; depending on the type of aura, this can leave the person disoriented and confused. It is not uncommon for migraine sufferers to experience more than one type of aura during the migraine. Most people who have auras have the same type of aura every time."

Are the two not correlated then? Goes to show how uninformed I am I suppose...
 

CQ:)

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Hi Madisyn,

Welcome to the forum.
An aura is the same as a simple partial seizure but it is usually called an aura when it is followed by another seizure eg complex partial or tonic clonic.
 
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CQ:)

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Have you ever been able to "stop" a seizure, and how does that work for you? Nope, never been able to stop a seizure, I usually just wait for it to end then once I feel ok I will write it down.

What's the worst seizure-related injury you've sustained?
I'm lucky because I've never had a seizure related injury. Worse thing I've had after a seizure is a really bad headache.

What activities have you stopped doing since you've been diagnosed?
I had epilepsy as a baby/ toddler but stopped taking seizures when I was about 3. I went 21 years seizure free until my seizures returned in 2002 when I was 24.

After my seizures returned the main thing that epilepsy affected me from doing was working full time as when I did try working full time or doing to much i would have more partial seizures.

I have never driven or had an interest in driving so having epilepsy hasn't affected my licence since I haven't got one.

Has it changed your activities?
Nope because I have never been much of a sociable person eg - dont like going out to clubs. When my seizures returned I continued doing voluntary work & the odd bit of Part Time/Casual work until I got my 1st full time job 5 months ago.

Do you drink?
Nope, never been interested in drinking. I may have the odd drink but usually only 1 o 2 a year & it is usually a little bit of alcohol mixed with something eg a tiny bit of baileys with milk.

Do any drugs?
Nope

Would you say your epilepsy is "controlled"?
At the moment it is because I haven't had a seizure for 3 years since I had surgery in 2011. Surgery doesn't work for everyone & I am one of the lucky ones who have had success with surgery.

Do you tell many people?
I am open about my epilepsy but I don't go around telling every person I meet.

Like, how long after you meet someone/make a friend do you wait to tell them?
It depends on the situation as to how soon I tell a person, if it is someone who has become a friend or a work collegue I might wait a while before I tell them.
Before my surgery when I had any work or did voluntary work I would tell the employer/supervisor when I met them mainly because my partial seizures weren't under control so wanted them to know what to look out for if I was to have a complex partial & what to do.

Do you worry about how people view you when they find out?
Nope, epilepsy is a part of me & if people don't like that then they aren't worth wasting my time on.

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...)
Nope

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 am lucky because I always had really good neurologists, I was with the same local neurologist for 8 years until he suggested I look into having brain surgery & referred me to a epiologist in the city.

I have been seeing the same neurologist at the epilepsy clinic I go to in the clinic for the last 3 years & he is great.

My local neurologist was really nice but he is a regular neurologist (so treats patients with all different neurological) & the one I see now seems to be more knowledgable about epilepsy as he focuses on epilepsy.

What meds do you take?
At the moment I only take Keppra but after my seizures returned I tried tegretol, Lamictal, Topamax & Neurontin. I was on a variety of AED as a baby but dont know which meds they were.

How do they affect your behavior (if at all)?
I have't had any problems with Keppra, it is nicknamed 'Keppra rage' as it is known to affect your moods but I haven't had that problem.
Worse med I was on was Neurontin has it made me really emotional, moody, tired & Im sure it affected my memory.

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 like calling myself an epileptic but instead I am a person who has epilepsy. I will not let epilepsy take over my life & continue living my life the best I can. I refuse to feel sorry for myself as I know there are a lot of people worse of then me.

what are your auras like (if you have any that you recall)?
When I sued to have an aura (or simple partial) I used to have a strange dream pop in my head, it was always the same type of dream but the only time I remembered this dream was when I was having a simple partial or aura. I had a epiologist once ask me to describe the dream but I had trouble describing it because I couldn't remember it & all I knew was that it involved maybe going somewhere. After I had the strange dream come in my head I had the feeling that I needed to go to the toilet & used to sometimes have a funny feeling in my head. I often didn't remember anything from the time I was heading to the toilet until after I came out of a seizure so if I had someone see me have an aura then complex partial I needed them to tell me what happened when I had the complex partial so I could write it down in my seizure diary.
 
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radisyn

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Belonging or being?

I don't like to think of it as something wrong with me, and I definitely don't like to play the victim because I know I have it on a very low level - it is more or less controlled, I have had very few, I know of people who have had much more harmful experiences, there are folks who have them multiple times a day...

Nevertheless, a big part of coming to terms with this (because it surfaced in my life so late) was accepting it as an adjective for myself. I don't think it's taken over my life, but I personally needed to incorporate into my self-image in order to move forward with my life.

I'm always curious how other people do so. It's very much a semantic distinction, but because human beings are so varied in their personalities, and we are such delicate, complex creatures in every way, it is fascinating to me the way people cope with any sort of disorder.

It seems that many folks have had seizures as part of their lives for a very long time (like since infancy), and I've never spoken to someone whose epilepsy/seizure disorder surfaced later in life. I have listened to many case studies/accounts of folks who are either severely epileptic or have taken to regarding their epilepsy as a separate entity from themselves - like a creature, presence, companion, whether antagonistically or amicably. I've just realized recently that I've been processing it almost completely internally, and the only external processing I've done has been exclusively with non-epileptics. Which is interesting - though not unexpected, since according to some sources about 1% of all people are epileptic, and 80% of those people are in developing countries. Though those are just statistics.

I am getting more interested in the idea of self-image - separate from the way others see you, but instead how you see yourself - since to me it seems that being epileptic or having epilepsy does change one's self-image... though maybe some folks have managed to distance themselves enough from it? I personally felt I had to make it a part of me, I couldn't view it as something outside of myself, as something I "have" - I had to see it as something I "am". It doesn't feel like possession to me - it feels like being. Does that make sense? What's your take on it? Am I being obnoxiously abstract about this? Feel free to disregard my seemingly-inane ramblings; I've done very little expressing of any of this to anyone, so this is all just coming out now, in a raw, jumbled form.

There are two amazing podcasts - The Moth and Radiolab - that both did episodes concerning case studies of epileptics/people with epilepsy. The Moth's episode was called "Me & Her & It", and it dealt with a man whose wife had seizures often and violently and how he felt as if her epilepsy was like a third presence in their marriage because of it's sheer intensity (which of course I can't equate or relate to hardly at all, what with my epilepsy being so contained... but this isn't really a contest, just a way to compare/contrast my experience/thought process with the experiences/thought processes of others... but I digress).

The other podcast - Radiolab - did an episode called Head Over Heels/Brains Gone Wild about an ultrarunner named Diane Van Deren. I mentioned her - though not by name - earlier. She took up running to help "stave off epileptic seizures", for which she ultimately she had a "lobectomy" - reportedly removing a chunk of her brain about the size of a kiwi (WHAT.). This surgery disrupted her ability to judge the passing of time, something which has helped her ultra-running. Thoughts? I don't know what ya'lls' surgeries were like (for those of you who had them). Have you heard of her? What did you think?

Curiouser and curiouser,
Mad
 

radisyn

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Also: the question I asked about the way people view you when they find out you're epileptic/have epilepsy was less about "judgment" than just about potential societal stigmas/etc. I know most people don't really know how to react - mostly they just ask what they should do if I have a seizure, and are often to surprised to find out that no, they shouldn't put a spoon in my mouth, or restrain me, or call the paramedics (y'know, unless I hit my head or something)... I don't tell just anyone of course, but at some point if I know I will be spending a certain amount of time around someone, or in a somewhat dangerous capacity (like deep-water diving... something that was perhaps ill-advised but I went ahead and did anyway, after informing my dive partners of course), I know I have an obligation to tell people. If only so they don't freak out and call the paramedics who would take me to the hospital - which costs ridiculous amounts of money - only to tell me what I already know, or shove something in my mouth in case I "swallow my tongue" (why do people even think that anyway?)...

Just remember that: I'm not worried about people judging me, I don't care if they "don't like it", I'm just always curious about how people perceive it - not how they judge it. I frankly knew almost nothing about epilepsy before I was diagnosed, and people are actually often pretty curious about it, as it is uncommon enough that most people don't know more than a handful of epileptics, at most.

Just a train of thought I'm on, among many others.
Busy mind and all that. :)
 

kirsten

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what are your auras like (if you have any that you recall)?

I don't really know if I have auras as such. Not in terms of preceding tonic clonics, certainly--I never, ever know when they're on the way. They happen, completely unexpectedly. I have aura-like seizures, where I have auditory and visual hallucinations, a sense of dread, feeling out of my body, but they are never followed by tonic clonics. I know that's unusual, though.

Have you ever been able to "stop" a seizure, and how does that work for you?
No, but I did read a study recently where doctors observed epilepsy patients to see if they unconsciously tried to stop their seizures. All but one had a different method of trying to get theirs under control. It's understandable and I probably do have my own habits for trying to feel in control of my epilepsy because it is scary, but I don't know what I do and I'm pretty sure it's purely about trying to feel in control rather than trying to actually gain control. Bernard has listed CBT as an alternative treatment for epilepsy and I have read about it elsewhere.

What's the worst seizure-related injury you've sustained? I bit my tongue really badly once and that had me on fluids only for a month. It was horrible. The worst epilepsy related problem was with tegretol, which gave me encephalopathy.

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

None. I hadn't gotten my driver's by the time I was diagnosed, and well...I have always wanted to scuba dive and I know I can't do that, so I haven't. Other than that, nothing.

Has it changed your activities?


It takes me longer to do things these days than it used to. I can still do them but I have to put a lot of effort into it. Also, being on an effective medication seems to take away my creativity, so I write less when I'm controlled.

Do you drink? Do any drugs?
Never. I also avoid certain herbs like guarana and ma huang because those have given me seizures in the past. Same with energy drinks--Red Bull and such. Sports drinks, on the other hand, are my saviours when I'm feeling under the weather,.

Would you say your epilepsy is "controlled"? Not at the moment.

Do you tell many people? No. Only people who know are four of my friends and my family.

Do you worry about how people view you when they find out? Hmmm...not sure. I certainly didn't in the past. I think that might be changing, though. I'm slowly becoming aware that there is a stigma.

Would you say you have a particularly manic mind/ADD-ish attributes?
I have temporal lobe epilepsy, so mood swings are par for the course. Not ADD symptoms, just mild mania and depression, for which I'm treated.

Have you noticed how little neurologists generally know about epilepsy? No. In SA, where I live, some neurologists seem to take on the role of epileptologists, so the three neuros I've had through my moves across country have all seemed really clued up.

What meds do you take? How do they affect your behavior (if at all)?
Currently, soon to change, I take epilim (valproate) and phenytoin (similar to dilantin.) They are making me ill and my epilepsy has gotten out of control with them. Behaviorally, not too much influence, though.

Have you incorporated "epileptic" into your self-image Of course, I try not to allow it but these days it has taken over my entire life, so I do find I think of myself as nothing more than my epilepsy.
 

urza3277

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what are your auras like (if you have any that you recall)?
My auras are usually kicked off by a bad feeling in my gut, a familiar yet foreign smell, or sometimes a distant memory that doesn’t really belong yet still seems familiar. Sometimes are three in combo. Then I feel like my temperature either spikes or drops and then My heart starts racing and then I get a tingling sensation usually on my left side that starts at the top and goes all the way down to my solar plexus.
Have you ever been able to "stop" a seizure, and how does that work for you?
I typically know when Im having an aura or not so I usally try to “stop” it at that stage by remaining calm and focusing on something else. Iv’e also tried closing my eyes and turning off music if I was listening to it. But in my opinion if your going to have a seizure it’s going to happen. Best you can do is get to a safe place and try to mitigate consequences.
What's the worst seizure-related injury you've sustained?
I had a tonic clonic in my Showever one morning before work and I think I faceplanted into the shower knobs cause when I wokeup on the floor my entire face was black and blue. I am just speculating though since no one else was around but apparently my neighbors reported to me later that they heard it through the walls. I have also had really bad bit up cheeks and tongue as well.
What activities have you stopped doing since you've been diagnosed?
Driving is the big one. Really had to readjust my life cause I live in the middle of Mennonite Land in PA. I don’t work out as much anymore since every time I do I get lightheaded and nauseated. I also stopped dancing.
Has it changed your activities?
Yes but I also started doing new things. Like I am teaching and taking lessons to learn to play the violin and Irish Fiddle.
Do you drink? Do any drugs
I do drink alcohol in moderation. I don’t get “Drunk” anymore. But I have found personally that a glass of wine or a beer with dinner doesn’t really do anything to me. Infact, it’s a natural downer so it can actually calm the brain. There is a lot of controversy with regards to alcohol and epilepsy. It does however make the side effects of medication worse so be prepared for that if you choose too. I can’t drink caffeine anymore like I used to. When I was in monitoring I had my partner bring me an iced turbo from DD with double espresso to see if I could induce a seizure. I went into status. So yeah, I drink decaf tea and coffee now. Also , I do not smoke weed as I don’t feel the need to huff laced Mexican brick weed imported from some crime lord. However there are being studies done on THC and the benefits it can have on intractable epilepsy. I would smoke if I could buy regulated weed that I knew wasn’t laced. Since personally I would rather take a hit of something organic and natural than pop a synthetic Ativan which are highly addictive.
Would you say your epilepsy is "controlled
No, I still have plenty of auras and partial seizures.
Do you tell many people? No.

Do you worry about how people view you when they find out? Yes. There is a huge stigma in society and in the professional work environment against epileptics. I also am scared of dating since epilepsy has been the cause of many a failed relationships in my life.
Would you say you have a particularly manic mind/ADD-ish attributes?
No iv’e never had ADD. My mood swings though if I become idle or bored.
Have you noticed how little neurologists generally know about epilepsy? That may have been the case with my first neuro when I was small. However. The past neuro’s ive been too the past 18 years have all specialized in epilepsy.
What meds do you take? How do they affect your behavior (if at all)?
Iv’e taken them all at least once. Topamax was the worst. It turned me into a zombie and I lost a ton of weight. Keppra has made me cold emotionally and easily agitated. Potiga gave me anxiety attacks and solemenence.
Have you incorporated "epileptic" into your self-image Yes.
I am 27 now and I have accepted that this is something that is not going to go away ever. Before my first surgery I was still hopeful that I would have a normal seizure free life post op. But that only last for 3 years. So now I just accept it. I think that it is a very hard journey to do but that why we are here to support each other. And realize you are not alone.
 

N Sperlo

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THANKS, CQ FOR THE TEMPLATE! :D

Hi, and welcome. I'll use this template to help me. I have trouble remembering what I've read.

Have you ever been able to "stop" a seizure, and how does that work for you? I don't know. They seam to "run their course" and my doctor says the brain may fight it or stop it at some point.

What's the worst seizure-related injury you've sustained?
Almost broke my leg during a simple partial. I kicked a bowl on the table. It was soar for a few months. I'm lucky it didn't cut into my heel. It would have gone deep and it would have been bloody.

What activities have you stopped doing since you've been diagnosed?
None


Do you drink?
Yes. I have to keep in mind that effects of my medicine will be increased so I have to be careful. I have found that with a "buzz" comes a heavy dizziness that I wouldn't get when I was off the medicine.

Do any drugs?
I smoke cigars every once in a while. I consider them a drug just like anything else.

Would you say your epilepsy is "controlled"?
Yes

Do you tell many people?
Not many.

Like, how long after you meet someone/make a friend do you wait to tell them?
Depends how close they become.

Do you worry about how people view you when they find out?
Not really. I'm still 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 have ADHD and some other "learning disabilities" if that answers your question. (Try not to call people "epileptics". Not to rag on you, but it sounds insulting.)

Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood?
It is still an anomaly. Mine is one that is just not understood. I have been used in some case studies, but mine is no where near as bad as many here.

What meds do you take?
2000 mg Keppra 2x/day, 150 mg Vimpat 2x/day.

How do they affect your behavior (if at all)?
I'm sleepy and have a "snapping point", but vitamins have tremendously improved things when it comes to mood.

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)?
Nope. Like I said before. ;)

what are your auras like (if you have any that you recall)?
I may feel "dizzy", "funny", have a problem speaking (even though I think I can, just ask my wife), think funny thoughts, can't think clearly. If I'm asleep, I would kick, punch, throw things, and contort into strange positions.

Welcome Madisyn. I am always open to more questions. :)
 
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kirsten

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THANKS, CQ FOR THE TEMPLATE! :D

I'll use this template to help me. I have trouble remembering what I've read.
I'm such an idiot. First I read the OP. Then I read CQ's post with template, then, to respond, I read through the OP yet again to make my own template. Duh.
 

radisyn

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what are your auras like (if you have any that you recall)?
My auras are usually kicked off by a bad feeling in my gut, a familiar yet foreign smell, or sometimes a distant memory that doesn’t really belong yet still seems familiar. Sometimes are three in combo. Then I feel like my temperature either spikes or drops and then My heart starts racing and then I get a tingling sensation usually on my left side that starts at the top and goes all the way down to my solar plexus.
Have you ever been able to "stop" a seizure, and how does that work for you?
I typically know when Im having an aura or not so I usally try to “stop” it at that stage by remaining calm and focusing on something else. Iv’e also tried closing my eyes and turning off music if I was listening to it. But in my opinion if your going to have a seizure it’s going to happen. Best you can do is get to a safe place and try to mitigate consequences.
What's the worst seizure-related injury you've sustained?
I had a tonic clonic in my Showever one morning before work and I think I faceplanted into the shower knobs cause when I wokeup on the floor my entire face was black and blue. I am just speculating though since no one else was around but apparently my neighbors reported to me later that they heard it through the walls. I have also had really bad bit up cheeks and tongue as well.
What activities have you stopped doing since you've been diagnosed?
Driving is the big one. Really had to readjust my life cause I live in the middle of Mennonite Land in PA. I don’t work out as much anymore since every time I do I get lightheaded and nauseated. I also stopped dancing.
Has it changed your activities?
Yes but I also started doing new things. Like I am teaching and taking lessons to learn to play the violin and Irish Fiddle.
Do you drink? Do any drugs
I do drink alcohol in moderation. I don’t get “Drunk” anymore. But I have found personally that a glass of wine or a beer with dinner doesn’t really do anything to me. Infact, it’s a natural downer so it can actually calm the brain. There is a lot of controversy with regards to alcohol and epilepsy. It does however make the side effects of medication worse so be prepared for that if you choose too. I can’t drink caffeine anymore like I used to. When I was in monitoring I had my partner bring me an iced turbo from DD with double espresso to see if I could induce a seizure. I went into status. So yeah, I drink decaf tea and coffee now. Also , I do not smoke weed as I don’t feel the need to huff laced Mexican brick weed imported from some crime lord. However there are being studies done on THC and the benefits it can have on intractable epilepsy. I would smoke if I could buy regulated weed that I knew wasn’t laced. Since personally I would rather take a hit of something organic and natural than pop a synthetic Ativan which are highly addictive.
Would you say your epilepsy is "controlled
No, I still have plenty of auras and partial seizures.
Do you tell many people? No.

Do you worry about how people view you when they find out? Yes. There is a huge stigma in society and in the professional work environment against epileptics. I also am scared of dating since epilepsy has been the cause of many a failed relationships in my life.
Would you say you have a particularly manic mind/ADD-ish attributes?
No iv’e never had ADD. My mood swings though if I become idle or bored.
Have you noticed how little neurologists generally know about epilepsy? That may have been the case with my first neuro when I was small. However. The past neuro’s ive been too the past 18 years have all specialized in epilepsy.
What meds do you take? How do they affect your behavior (if at all)?
Iv’e taken them all at least once. Topamax was the worst. It turned me into a zombie and I lost a ton of weight. Keppra has made me cold emotionally and easily agitated. Potiga gave me anxiety attacks and solemenence.
Have you incorporated "epileptic" into your self-image Yes.
I am 27 now and I have accepted that this is something that is not going to go away ever. Before my first surgery I was still hopeful that I would have a normal seizure free life post op. But that only last for 3 years. So now I just accept it. I think that it is a very hard journey to do but that why we are here to support each other. And realize you are not alone.
Wow, thanks for the info, this is super educational for me. A quick aside: I personally have not smoked much weed since I've been diagnosed, though I'm not too worried about it being laced - living in the Pacific Northwest, I often get my weed straight from a trusted grower. Though I'm still not super into it, and it's kind of a good excuse to NOT smoke.

Thanks for your input, and for being so candid. It is much more difficult for most people than it has been for me (thus far, hopefully it stays that way), and I really appreciate all of your honesty and openness. Sincerely.

Mad
 

radisyn

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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?

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.
 
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