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TheJasonPar

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Hello everyone,

My name is Jason. I was diagnosed with epilepsy in August of 2009, two weeks later I had another seizure, then a month later I had another. All me seizures have had the same pattern. They have all happened when I was sleeping and around 5 o'clock in the morning. It has been two and a half years roughly since I had a seizure until I awoke to my girlfriend leaning over me telling me I had a seizure. I didn't believe her at first, but then I noticed that I was very confused and my head was killing me. We went to the neurologist and he had upped my medication hoping that it was a one time thing because I had been very stressed out the last couple of days. Everything was going good until 5/17 when I awoke again to my girlfriend telling me I had another seizure. This time the seizure occurred at 1 o'clock instead of the normal 5 o'clock. We again went to the neurologist were they started me on a new medication and wanted me to have an EEG done. The day before I had gotten pretty stressed out at work. The neurologists had told me that my seizures were caused from stress and that all my test came back normal from when I was initially diagnosed. I guess I am pretty much sharing my story and looking for some insight. A little about me I am 22 and live in Buffalo, NY.
 
Hi Jason, welcome to CWE!

Were the docs saying that your recent seizures aren't caused by epilepsy, because you had a negative EEG? If so then, then they aren't entirely correct -- a negative EEG doesn't necessarily rule out an epilepsy diagnosis, since some seizures are too transient or originate too deep in the brain to be picked up on the test. In addition, if you were on anti-seizure meds at the time the EEG test was administered, they could be suppressing the abnormal epileptic brainwaves that would ordinarily show up.

Are they keeping you on anti-seizure meds? If so, then that's an indication that the docs think your seizures ARE epileptic in origin -- or are at least hedging their bets. If the meds help with seizure control, then that would tend to confirm an epilepsy diagnosis.

Regardless of cause, the main thing is to get your seizures under control, right? Have you identified any other triggers besides stress? Are there factors related to the stress that may be playing a role? In other words, when you are stressed, is it affecting your sleep, or how you eat and drink, or how you breathe? Have you ever had a sleep study done? It's possible that if you could be having sleep issues (like apnea for instance) that trigger your seizures, especially given that the majority of them happen in the early a.m. (The borderland phases when the brain is beginning to fall asleep or wake up are very common times to have seizures, because of the kinds of brainwaves produced at this time.)

Which medication have they started you on?

Best,
Nakamova
 
Yes they were saying that the recent ones were caused by the epilepsy. I went for a sleep test in 2009 when I was first diagnosed. I also recently had a sleep deprived EEG. I was on medication when all the tests were administered. I am currently on medication and have been since 2009. I do not have any known triggers that I know of. I don't even know if stress is one of them, I have been stressed out before and nothing has happened. I think it is a combination of stress and something else. When I am stressed it does in fact affect my sleep. I usually wake up much more tired than normal. Eating and drinking have been the same as the always are. I take 300mg or Zonegram at night and 300mg of Trileptal twice a day.

Thanks,
Jason
 
Any side effects from either of the meds, or are they basically okay for you?
 
They seem to be fine. The only thing I have noticed is that when my phone rings text/call i usually get mildly annoyed. Putting my phone on silent has fixed this. And sometimes feel very nervous or worried about little things. I have talked to the doctor about switching me off the Zonegram because I don't like it. He kinda just shrugged it off, so I am seeking a second opinion.
 
My experience with Zonegran wasn't great. It affected my stomach and my appetite, and I had a hard time eating. I was more or less starving all the time, which affected my thinking (foggy) and mood (cranky). I ended up switching to Lamictal.

Good for you for getting a second opinion -- if your doc isn't paying attention to you and any issues you may be having with your meds, it's time to find a new one.
 
I had started on Lamictal and was allergic to it and then switched to Keppra which made me very moody and I wouldn't eat like I normally did. Zonegram was better when I was on the lower dose, but when I increased it the problems started getting worse. I have an appointment in a week I will see what he says.
 
Welcome Jason!

Nakamova is one of the wonderful knowledgeable people you will find on CWE. I hope you can find the information and assistance that you are looking for.

Tom
 
Is there a specific Type of epilepsy you were diagnosed with? Sometimes the type can help determine why you're having seizures again because some types of epilepsy do go away, and some are sneaky little SOBs that get you when you least expect it -.-
 
I am going on June 5th I will ask. Ialways assumed Nocturnal Epilepsy since it always happened when I was sleeping but the doctors just told me epilepsy.
 
Hi Jason and welcome!!

I too have nocturnal seizures. I just finished a week long stay at the University of Chicago hospital for 24hr monitoring. I had a stress seizure during that time, as well as an epileptic one. The stress seizure was more involved, with a lot of movement of my right arm and face and eyes. I was not able to be awakened. These are what my husband mostly witnesses. They are still a type of seizure, except there is no change in your brain waves during it. My test showed that following that, when my thresholds are down to their lowest, I had an epileptic seizure. I am also on Keppra and Carbatrol. Last week I spent walking around in a fog while getting used to the new dosage changes.

Let us know how your appointment goes!
 
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