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B208

Am i having seizures? If so, what kind?

Hi! :)
I have been having what I call "episodes" since I was little. I never told anybody about them until I got in high school, and then finally went to the doctor later on when I was almost in college. I am 21. First I am going to give you background info about me- I am a super creative person, I love music (but not loud noise). I have had an eeg, but I have did not have an episode during the testing. I feel like no one gets me when I describe what goes on during my episodes. They are so hard to explain, and they range in how bad they are. My neurologist thought that they were due to my menstrual cycle.. I keep insisting they aren't because I had them before even puberty thought about starting.

On to these episodes: I have found many triggers for them, I have them while in the shower, while picking up my cat, while looking up at a ceiling fan, and one time while I was turning on a light (that flickers). Each episode is different, and not necessarily triggered by what's listed. It starts out with a weird feeling inside, a rush of deja vu that's intense (its like controlled thoughts I can't control- even if I put my hands over my eyes). the deja vu sometimes can be about dreams I've had, old memories, and just regular deja vu. I compare it to putting a bunch of random( but somehow connected) pictures in a book, and flipping the pages fast. Also, if people are talking it's like I can almost know what they are going to say. I am not quite sure how long they last but afterwards, sometimes (I have been told) that I twitch softly.

I normally will go to sleep after with a headache, and very seldom I have to either vomit or... well you know use the restroom. Last year I was sitting in class (I'm in college) and I had one. I went back later that day to review over what we did in class and my handwriting was unreadable where I had my episode. I can't remember things from it, the reason I know exactly what happens is because I've had so many I tell myself to remember, or I will write it down when I wake up (if I go to sleep). My doctor insisted that it was just migraines, but I have a hard time believing that a person can have 4-6 migraines in one day. I have been episode free for a good bit because I am keeping regular on my meds. I am taking Keppra XR 1000 mg/day. few months ago, I had an episode while driving late afternoon. I don't remember a lot about it, but I know I called my boyfriend, and he called my parents. He has told me I couldn't tell him my name where I was, or anything. I had just left my house and that's how I was found. My dad was asking me questions and I couldn't answer them or talk. I was talking jibberish. The rest of the night I do remember feeling ditsy and exhausted. I was perfectly fine the next morning.

I think that's all the details, I hope so I have written like a novel. - I don't think any doctors I have talked to this about get what I am trying to say. My mom has a hard time understanding it. I still can have regular deja vu, what I call the" omg i've been here before" type. The deja vu I have with these episodes are intense. So if anyone could give feedback, advice, recommendations that would be appreciated:) Thanks and God Bless.

Comments

Re: Am i having seizures? If so, what kind?

Have you asked for an inpatient EMU? It is an EEG with a video. Typically 3 days so they can try to 'catch' an episode. What was the keppra given for if not seizures? I am new to epilepsy diagnosis so not familiaar with all the meds

Re: Am i having seizures? If so, what kind?

I was on topiramate because my neuro thought it might be migraines, but since it didn't work she put me on Keppra XR, and I'm assuming it is strictly for seizures- it's working well (after I got used to it of course)

Re: Am i having seizures? If so, what kind?

I agree that a video EEG can be useful especially if the episode occurs during the test. I have times where I have had a weird feeling in my stomach with a converation in my head that does not make any sense which lasts for a couple of minutes. These events have happened at different times without going any further. However, one time it led to a tonic-clonic seizure where I lost consciousness fell down and hurt my head. My neurologist believes that these events are in themselves seizures- whether or not they progress any further. I also suffer from migraines where my head hurts on one side with occasional blurred vision that lasts for one to three days. I think it is very important to see a neurologist who specializes in epilepsy.  

Re: Am i having seizures? If so, what kind?

B208,
I'm only another patient, not a medical professional.  The only way to distinguish between an epileptic and a nonepileptic seizure is the Video EEG.  However, there are a couple of signs that are different for nonepileptic seizures. 

1.  Extremely long seizures with no status epilepticus
2.  A seizure which can be remembered
3.  Immediately after the seizure:  Ready to get up and go with no postictal headache or confusion. 

Your deja vu seem like auras.  It sounds like you need an epileptologist, a neurologist who specializes in epilepsy.  This website can help you locate some in your area.  They can also be found at Comprehensive Epilepsy Centers, often in major university hospitals.  

Re: Am i having seizures? If so, what kind?

Hi, B208 -

I've had ep for over 30 years and have had many kinds of sz. I had brain surgery in 2003 which helped, but didn't completely stop them. So I got a VNS 2 years ago. It does help.

The last several years I had simple-partial and complex-partial szs. I got a fuzzy feeling in my stomach and learned to sit down as soon as it's felt. Then my right arm and leg flopped and I'd sway back and forth. I was aware of what was happening, then it'd finish in a few minutes and I'd be back on my feet, back to normal. Maybe it was longer than I thought, I always forgot to look at the clock.

My current partial sz are only when I sleep. I used to wake up when they started but no longer do.

Everyone has different kinds of sz, even if the problem is in the same location of the brains.