Am I the only one?????

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In March 2012, I had an unusual episode. I was at work sitting in a large overstuffed green chair with my laptop in my lap, and I suddenly woke up. I'm a teacher and had a planning period, so no one saw me or what what happened to me. I was completely disoriented, since I had felt that I would be waking up at home, and I couldn't remember getting ready for work, dropping our foster child off at daycare, or driving to work. My boss drove me home, and we went to the ER because I was having memory loss issues. I had bloodwork, a CT scan, and and an EKG, all of which came back normal. I also noticed I had bitten my tongue and possibly wet myself. (A hot laptop can make you sweat a ton, too.)

The neuro I wound up seeing called it a grand mal seizure (tonic clonic), had me get an EEG, and set me up to get an MRI. The EEG came back as fine except for some unusual blips while hyperventilating. She also put me on 2000 mg Keppra/day. Two nights ago, I forgot my Keppra because I had a sleep study to see if Sleep Apnea was part of my problem. The first neuro didn't think so, but a second opinion said it could be related. At 5:30 yesterday morning, after the tech had awakened me, I collapsed in a true-blue grand mal seizure. They took me via ambulance to the ER again, and they pricked my finger to test my blood sugar. Even though I had calmed down, I shrieked bloody murder and had a second grand mal. I don't remember anything, but my wife was there by that point. About two hours elapsed between the first and second seizure. My bloodwork and an MRI all came back as normal.

Anybody have any thoughts as to what is going on here? I am baffled and freaked out. I'm almost thirty and have never had a seizure in my life until now. Also, no one in my family has had one.
 
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I should also add that I was diagnosed with sleep apnea after my first seizure and was simply getting calibrations so that I could take home a CPAP. Could too *much* air coming in cause this?????
 
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Hi, kreitsauce. Welcome to CWE.
That sounds like a scary thing to go through. If your CT Scan and MRI came back normal, than you don't have to worry about brain tumors or anything like that causing your seizures. A lot of people who develop Epilepsy seem to get it out of the blue and don't know what caused it.
Just because your EEG came back mostly normal, it doesn't mean seizure activity wasn't happening. Sometimes seizures come from too deep within the brain to be detected on an EEG.
You should keep a journal of foods you're eating, time of day you get seizures, stress level, amount of sleep, etc. It can help you and your doctor figure out what your triggers may be. Try to think back if you started doing anything different since March when you had the first seizure. Any extra stress? Change in amount of sleep you're getting? Eating anything different, etc.
Feel free to ask as many questions as you want here!
 
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Nakamova

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Hi kreitsauce, welcome to CWE!

Most likely your second and third seizures are the result of missing the Keppra dose. Anti-seizure medicines are very powerful, and suddenly stopping them can cause a seizure (even if you don't have a pre-existing seizure history). Keppra has a short half-life, which can make you more vulnerable when you miss a dose.

As for what brought on your first seizure, it's hard to say. Unfortunately, the majority of seizure disorders are "idiopathic" -- that is, the seizures come out of the blue with no apparent explanation. It's possible that you may have had a pre-existing susceptibility that it took the right trigger -- or combination of triggers -- to reveal.

Are you aware of any particular stressors that might have played a role in your initial seizure? Fatigue is the #1 trigger, but they can take a wide variety of forms: food sensitivities (MSG, aspartame, gluten, etc.), metabolic irregularities (low blood sugar, dehydration, electrolyte imbalance), hormone fluctuations (estrogen, thyroid), illness or infection, environmental stressors (flashing or fluorescent lights), emotional pressures, etc.

I realize it must feel pretty confusing and scary right now. My first seizures showed up unannounced when I was 35. Like you, no family history, no warning signs. In my case, the EEG indicated "classic" epilepsy. In your case, while the EEG was inconclusive, that doesn't necessarily rule epilepsy in or out. (Many folks with epilepsy can have normal EEGs. The tests are imperfect and can miss abnormal brainwaves that are transient or are generated deep in the brain).

The best course for now is to be proactive about your overall health (see http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/) while discussing diagnostic and treatment scenarios with your neurologist. It's important to prevent any additional seizures -- the more you have, the easier it gets for your brain to seize in the future.

Best,
Nakamova
 

jyearta

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Hi Kreitsause,

I glad you found this forum.

NO you are not alone.

I am 60 years old, was diag. when I was 19 years old.

I have learned so much in this forum, things that Drs. don't tell you. I encourage you and your wife to look into all the diff. forum, you will supprise just how much inform. is here for you.
The people are so kind to share what they have gone through, be it the seizures, medic. side effects are plan old venting.

A trigger for me is caffeine or a of new medic. like an antib. for an infection.

I never knew these things until I joined this forum.

We are all here for you as you adjust.


I hopeing and praying the best for you.
 
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Thanks for the reply, all!

The only stressors any of the seizures have in common (unless it be an electrolyte imbalance) are that I'd had run-ins with flashing lights in my work environment, my sleep the previous night was disturbed (most recently by the tech for my sleep study), and my air flow changed significantly around the time of the seizure. I was told that changes in oxygen and carbon dioxide levels was a trigger on my EEG, so I am wondering if that isn't the big one.

This has all happened since I switched to an 1800 calorie diet from the embarrassing amount that I ate before, however, I haven't been on that restrictive of a diet since out of sheer terror of having another seizure.

So you can't just quit Keppra, huh?
 
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((((Hugs))))) I had mentioned in one thread, my first KNOWN seizure was 1991, however, *I* believe I had some sort of episode in 1989. During English class. I totally heard what the teacher was saying, but he accused me of falling asleep (and falling out of my chair).
I also had an incident where I was walking to the water cooler (in high school) and have no memory of landing on the floor or how long I was down. :/

I hope they get it straightened out and life can go on as normal as possible!! ((((hugs again))))
 

Nakamova

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So you can't just quit Keppra, huh?
Not cold turkey. With all the anti-epileptic meds, it's much safer to taper off slowly.
 
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Hey.
I'm new here and I guess a beginner when it comes to epilepsy.

I didn't think I had epilepsy when I first showed symptoms, even through my first clonic tonic I figured it was due to the fibromyalgia I had which causes my muscles to be very sore and tired. So I figured I was 'shaking' because my muscles had had enough.. I know it's a weird conclusion but I didn't know a lot about fibromyalgia at the time.
I guess my point is just because you haven't had tonic clonic before doesn't mean you haven't had epilepsy. It can be pretty discreet and some of the seizures are mistaken as other issues and therefore ignored.
My testing showed pretty much nothing too, but I was still diagnosed with epilepsy. No one else in my family have it either, though my younger sister has a rare illness called CIDP, which I think is un-related to epilepsy.
 

LW6279

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Hey,

What did you eat before that happened? Do eat stuff with MSG or Aspertame? Certin foods with bring Fibromyalgia symptoms and Seizures. There are foods you can eat to help with Fibromyalgia flare ups and are not good for Seizures.
 
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Welcome K,

I am the newbie parent of a 16 year old that has had 3 T/C seizures since May 1. I have found this site to be warm and informative. I hope you do too.

Tom
 

Starfish

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Sounds like you had an absence seizure (you probably already know that though).

Memory loss can be one of the symptoms of seizures/post-ictals (fancy name for after seizure effects). Most people don't remember things that happen during seizures that cause them to loose consciousness. From personal experience remembering the time around having a seizure is blurry, what little i do recall that is. Many people with epilepsy report having memory difficulties. Most of the people I talk to on this site do.
 

JillT

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you are not alone!

Welcome!!:e:
I was diagnosed in 1985, age 13. Memory loss is typical, especially with head injuries. It can also lead to memory problems (Swiss cheese brain or brain farts) for a while afterwards.

Learn to laugh about what is happening and contact your local Epilepsy Foundation. Depression and anxiety can be a problem to those who have seizure disorders. This is a great forum. Try seizure tracker.com and see if that can help you put things in order.

Keep us updated.
 

jgeekie

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You're not alone here Kreitsauce. I hope you realize that there are a number of people here with similar experiences to your own.

All of my seizures involve memory loss. I actually track how bad things are by the amount of missing time.

I am only going to speak for myself here, but there are similarities I see between you situation and mine. Once I have a Tonic-clonic, the likelihood of recurrance goes up substantially in the short term. It seems that the longer I can go seizure free, the less likely they are to manifest, even when my triggers happen.

I started keeping a food diary years ago, and found that there was a certain minimum of fat and protein that kept things stable for me. Attempting to "cut out the fat" in my diet simply means I fall apart and have seizures. I'm assuming that's what you were trying with the 1800 calorie diet. There are also a couple of nutrients I found that specifically help me. Magnesium, vitamin D and Taurine are a big help. Be careful and slowly introduce any supplements into your diet to make sure you don't have an adverse reaction. Specifically, I found most of the calcium forms you find in supplements (calcium citrate, etc) are triggers for me and I could have avoided a lot of pain and heartache if I had introduced the supplement into my diet slowly and monitored the effect better and more carefully. I also found Gluten sensitivity was a huge trigger for me. I only found these things after cross-checking a journal against my seizure activity.

Listen to your body about this stuff. My doctors tried to tell me the gluten problem and the taurine, and magnesium supplements were all in my head and had no clinical benefit. Without them, I'd say my seizure threshold would be 35-40% lower than it already is. Respect what the doctors say, but listen to your body as well.

Hope that helps

Jay
 
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