Difficulty describing seizures/aroras/smaller feelings to Neurologist

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crainla

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Hello, does anyone else out there have difficulty describing your seizures, aroras or smaller seizure activity that you get? I feel like I do every time I see my Neurologist. I was diagnosed with Epilepsy last year (Feb 2010), complex partial seizures and originally put on Keppra. I later had Carbatrol added and am still on both now. My doctor recently added a anti-depressant from the extreme side-effects that I have. I also continue to have a lot of problems where I may have the Keppra replaced with Vimpat soon. Even though I go for several months at a time seizure free, I still have a lot of aroras happening a lot, where I can feel the seizure starting to happen, then the medication stops it from becoming a full-blown seizure. I have those several times a week and sometimes, every day. Other than those, I also have smaller feeling throughout the day, every day, where it feels like smaller, lesser seizure activity.
The problem that I have is, I'm no expert on epilepsy. I've actually had it for almost 5 years now (4 went undiagnosed, leading to a grand mal seizure and the ER). Either way, my doctor wants me to explain to her and I trying to differentiate between what is seizure activity, what may be drug side-effects, and what is just normal feelings that everyone gets. I'm not the Neurologist, she is. It's hard when I don't know if I'm explaining it correctly or not. My explanations are also what is determining the medication she is putting me. It gets stressful during my visits sometimes. If I was talking to someone else who was experiencing the same things that I am, it would be a lot different and easy, but this is hard. It's easy if you hurt your leg or something and go tell a doctor that this is what hurts and that's it. With epilepsy, a lot of it's gray areas and hard to figure out sometimes.

Does anyone else have these problems? I'm sure I'm not the only ones. What's wierd for me too, is Monday through Friday, I wake for work and go through my day exactly the same, and I'm fine. On the weekends, when I sleep in, and my schedule is different because I'm not working, I spend most of the day Saturday and Sunday with splitting headaches. I have no idea why. I'd figure that I'd feel better because I was getting more sleep. I have no idea.

If anyone has any answers, please help.

Thanks for the support you all give. I read everyone's blogs and they help me a lot.
 
Hi crainla --

It can help to keep a seizure diary. It should be as comprehensive as possible, listing and describing any and all seizure activity -- including auras and unusual feelings. You don't have to know for sure whether or not they are seizures; just make a note of the time of day, how long the event lasts, and happens during it. In addition, keep track of things like meds (when and how you take them and at what dosage) as well as info about general health issues -- sleep, meals, activities, etc. Ideally you might get a sense of potential seizure triggers to avoid, but at the very least you'll have a record that you can show your neurologist to help convey what's going on.

The "weekend headache" may actually be due to too much sleep! That can be a trigger for some. Or it might be an associated cause -- if you're sleeping in you might be getting dehydrated or have low blood sugar from having a late breakfast.
 
^^What Nak said^^

Definitely too much sleep can be a trigger, and is for my partner. He will wake up angry or in more pain or both if he sleeps longer than 8 hours, and it will last most of the day, and those are the days he usually gets bad smells and space-outs as well.

We've had a hard time distinguishing between what's caused by meds and what's "normal seizures" for him as well, since the effects swim together. Last year we weaned him off of Effexor, the anti-depressant he was on, and saw a vast improvement in moods, focus, much less nausea, improved balance and less unexplainable off days.

Has your neuro said he will keep you on the anti-depressant after changing the Keppra to Vimpat, or did the side effects come in when you started Carbatrol?
 
Hi Crainla!

I saw your post and wanted to write to you!

I am on Keppra XR and Carbotrol ER. I take Keppra XR 1500mgs in the morning, 1500mgs at night. Total of 3000mgs a day. With Carbotrol, I take 600mgs in the morning, and 600mgs at night, total of 1200 mgs a day.

When it comes to seizures, I have this odd and weird feeling before they happen. Ive explained it to my neurologist that it feels like Im just not all there. Sometimes I feel like Im being passed down my different people. Like there have been many times where I get this vision in my head of a long line of people and them literally handing me over to the next person, and me being passed down the line of people. Its weird. I get the feeling like I just am out of it, or like Im feeling light headed, confused, etc. Its hard to explain it.

I was on Keppra before November 2010 for years. In September 2010, my dr raised my Keppra level to 4000mgs a day! I went like this til November, and I couldnt take it no more. I had break through seizures, and was having really bad headaches. I went back, and they changed me to the Keppra XR and back to 3000mgs a day. It made a world of difference when it came to my headaches. I was suffering from headaches all the time. I was going through ibuphrophen bottles like you couldnt believe. I even tried the migraine pills. But after switching to Keppra xr, the majority of the bad headaches went away and I hardly get any headaches now.

If you ever want to talk, feel free to message me. I know its hard trying to explain to your dr what you feel, Ive been there. Ive had epilepsy since I was an infant. hang in there!
 
Hi, Crainla,

Welcome!

Ditto what's already been said about seizure diaries. It helped me figure out what's what.

I struggle with words a lot when trying to describe my seizures to my doctor. And the side effects, too. Once I described the blurriness as looking underwater. He looked at me like I was crazy and gave me that dismissive sound he sometimes makes. I felt half pissed off, have deflated. Then the next time I came in, he seemed to get it. I'm wondering if he went to a pool, dove under, and opened up his eyes, just to check it out. lol....

I still can't get my auras right to describe to him. It's like this really weird electrical feeling in my body. But that's not quite it. Very hard to describe. And a feeling of doom. I can have it off and on all day before a seizure.

My drug side effects are pretty straightforward and don't overlap with my seizures. Hives. Throwing up. Blurry vision, weird taste in my mouth, ANGER or depression, etc.

My seizures are pretty clear cut, and usually couldn't be mistaken for a drug side effect. I have simple partials, like Jaimas Vu (not recognizing a place or person, etc.), Deja Vu (recognizing something you shouldn't), Fear seizures (like a deer in headlights), seeing things (like a spider dangling in front of my face).

I have complex partials where I do and say really nutty stuff that I normally wouldn't do, and don't remember it afterwards. I've suddenly found myself outside in the middle of the night, in the pouring rain, with no shoes or coat. I've been walking my dog and handed it over to a neighbor. I've said a pretty terrible thing to a coworker. Or so I've been told, on all this stuff. I don't remember any of it.

My best suggestion for you is to read through the posts in the forum, as much as you can. You may begin to recognize yourself in them. Both the seizure types, and the drug side effects. And keep that seizure journal - really helps.
 
Complex partial seizures can be very tough to describe. I have to keep a constant diary of all of my seizures, but it is still hard to describe them. A good online diary is on www.epilepsy.com it is very thorough and you are able to list anything odd about each day, how you felt, if you missed meds and such.

Sometimes it seems like the neurologist does not understand that you can't really remember exactly what it was like, but they do need to know in order to properly diagnose it. The hardest part seems to be describing the feeling during a seizure.
 
Difficulty understanding epilepsy

Thank you to you all for your replies. I find that it helps me a lot to get on this website and read some posts and get responses back from other people who have epilepsy too, and who can actually understand what I'm feeling and talking about. I don't know anyone else with epilepsy or even ever met anyone, so it's hard to talk about it or deal with it with anyone else. I try and talk to my neurologist a lot, but even though she knows everything about epilepsy (obviously), she doesn't have it herself and hasn't experienced the things that I have, so it's hard to know if she understands what I'm saying to her sometimes. I do keep a seizure journal, and have since I was diagnosed with epilepsy last year in February. I've actually had it for about 4 1/2 years, but wasn't diagnosed until a year ago as I said. I have complex partial, but because I went for those 3 1/2 years undiagnosed and untreated, I had a grand mal seizure one night in bed out of the blue. I was out of it for a long time and my wife had to call 911 and they took me to the ER to run a bunch of tests on me. The moron ER doctor said I had a night terror and sent me home. I eventually got referred to my neurologist who had to break the news to me very gently. It was shocking at first and it took me a long time to come to terms with it, but I'm fine with it now. I still don't want to tell anyone and I generally keep it a secret from anyone who doesn't already know. My biggest problem right now, is I am in the military and I am waiting for a medical board to eventually convene and decide whether they deem me fit to remain in the military or not. So, that's very stressful. Can I ask anyone, when you apply for a job, do you tell your potential employer that you have epilepsy? Or do you have to? I'm always so scared to, since most people are so ignorant to all of the different types of epilepsy. When you say that word, it paints a picture in their mind of someone on the ground having a grand mal seizure all the time. Just curious. I may have to face that one day soon. I would just be afraid that employers would discriminate against me just for having epilepsy. Any advise in that area would definitely help. Thank you all for your help again.
 
When it comes to jobs for me, Ive never told my employer that I have epilepsy. They find out when I have a seizure at work, and then days later I get pulled into the office and they give me a different reason as to why they are letting me go.

Alot of businesses can get away with so much these days. They can see one of their employees have a seizure, and then give it a few days to think of another reason to let them go. But in all reality, if I hadnt of had the seizure at work, I would still be working there.

It sucks when it comes to epilepsy and people being morones and not wanting you to work there because of it. Ive had 4 jobs in the past that has let me go after Ive experienced a seizure at work. Of course none of them will admit to it being due to the seizure, they cant do that, so they make up another reason to cover their butt.
 
Crainla,

Literophile is right. There are some employers out there that will find a reason to fire someone with epilepsy. There are an equal number that would find a reason not to hire you, if they knew in advance.

I wouldn't tell them - absolutely not. Unless seizures effect your ability to safely do the job, like a crane operator. If you need accomodations to do your work, then tell HR after you get the job offer. The burden of proof that it is not a reasonable accomodation is on them, at that point. They just can't haul off and deny you the offer in the first place (as they might if you tell them ahead of time), or withdraw the offer without an explanation that conforms to the law (Americans with Disabilities Act)

Here's the ADA website:
http://www.ada.gov/
 
I've been trying to keep a diary for 2 years now but I cant separate seizure issues from all the other weird stuff.When I discover how many pages it is and read back through it I feel like my epi doesnt have time for all this not to mention I sound nutty.Everyone around me seems to think I should know what Im looking for and I havent a clue.Plus I cant get past all the mental symptoms-guess Ive been conditioned that you dont tell people these things because you will be permanently labelled and have to answer and fight for your job,your kids,your rights and everything else.People with mental issues are stigmatized their entire life and I just cant play that game-Im exhausted
 
Have you considered looking at your diary & summarizing it for the neurologist, like just saying how many times each week or month something happens, what time if day & how intense etc.?

That would probably not only make it easier for him/her but make it easier for you to see patterns & maybe discover things that you didn't realize before.
 
Untreated partial complex seizures can lead to a grand mal? What exactly happens during a grand mal?

I'm especially concerned because during my last seizure I zoned much longer, had several in a row, and was told I put both arms out in front of me and clenched both fists as if I was grabbing onto two ropes.
 
I grew up with a dog who suffered seizures her entire life, and I'll never forget her first. Out of nowhere she began running like a nut around the room, crashing into furniture, knocking over a stool, and then she settled down, became very quiet and weak, and began to drool. I think she may have even had a bowel movement on occasion during one?

I guess what I'm asking is - is this (above) going to happen to me?

And even though she was a toy breed, she was also a very 'snappy' dog. She would growl, show her teeth, and bite us daily.

I guess I'm just scared of a grand mal because of my dog!
 
Elizza,

If you have a tc, you won't run around the room crashing into things. If you had a complex partial you might. I've walked around and broken things during one of those.

And yes, we get grumpy. But unlike your dog, we understand what has happened to us and hopefully don't generalize the feelings into every day life. But then again, the meds can play havoc with our emotions. Depression is more common in people with seizures than in those without.

I guess the message is, don't worry. A TC isn't like your dog. If seizures or meds affect your emotions then be sure to tell your neurologist. He/she can help by either changing your seizure meds or by adding an anti-depressant, etc.
 
Hi Mom of 3 boys,

I guess I've been blessed because my employer knows and I'm still here, but you better believe my office is located where no one can see me (on the 3rd floor). What a joke, right?
 
Thanks for explaining that, Endless...I was worrying. And I can see how I might hurt myself having a partial seizure. I burned holes in my fingers on a cigarette last one, and I actually considered getting in my car the morning of my last one, not remembering that I wasn't supposed to be driving.
 
Every 4 months,seems like my meds where off and they creep back.Last years seem like all complex-no memory-last autumn, there was memory but couldnt react,that was scary as heck-like in that stephen king story 'the autopsy' where the guy cant respond before they cut him open and hes really alive-love that story before,not so much now that it happened twice in a 10 minute period-now this time LOTS of auras-or maybe I just know what Im looking for-but they last less than 3 seconds so alot quicker than ever.Has anybody elses"symptoms or seizures" changed or developed over time? I certainly feel like they are diminishing-like they dont have such a hold on my brain anymore because its so quick and I dont lose my memory even if they are more frequent and weirder.
 
Hi Mel239
I would certainly agree with you about seizure change,i feel in my case it would be the severity.When i was younger in my 20s,i would be in bed asleep for the best part of a day,then in agony withe sore muscles after a TC but now seem to be able to shrug them of quite rapidly.I still need to me reminded that i have had one though,i hate hearing those words "you,ve had a fit,you,ve had a fit",Oh if i had a pound for every time i,ve heard that!!!!!
In terms of explaining to the nueruologist i can relate to that,i share a house with my brother which is handy cos he looks after me,i took him to my last Epilepsy Nurse appointment and she gleaned much more information from him than me,so maybe its a thought to bring someone along that stays with you,it certainly worked for me,bye
 
Hi Neil 129, I take my boyfriend-he has lived here for 10 years.He usually sits there stunned because I dont share my visions and weird stuff with him.besides,he is almost 60 and retired military as is most of my family and we have been conditioned that if it cant be solved by surgery or meds,then its mental and thats a sign of weakness as is depression,etc...
 
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