My first breakthrough seizure...

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Natalie67

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...happened on a really crowded Long Island Railroad train in route to NY Penn Station. On Thanksgiving night. When I was traveling alone. Because why do anything by half?

My typical Thanksgiving comes with it's own family generated stress levels, which were increased this year by work, money, and other family drama. During the course of the meal I felt my eye twitching, but shrugged it off as an annoyance, and went on jockeying for a share of pumpkin pie. Didn't drink alcohol. Took my meds the night before.

At 7:30pm I got on the train for the first leg of a 2.5 hour trip back to NJ. I've made this trip literally hundreds of times over the years, and can do it in my sleep. I got on a car with a bathroom, but no empty seats, so walked forward to one with seats. Maybe 10 minutes into the ride I start to feel like my blood pressure is dropping. Faint, cold sweat, nauseous. After another minute I decide to get to the bathroom in case I'm sick. I stand up and realize that 1. the bathroom is not in this car, and 2. I can't stand up that long. So I get to the train doors and sit on the floor. My thinking, as far as I remember, was really simplistic. There's a PSA in NYC that if you're sick, don't get on the train. So all I could think of was that I was sick, so I had to get off the train. Because that was the rule.

At one point things got a bit fuzzy, and I thought that PSA or no, I needed some help. Across the door area was another rider. Typical NYer, head down, headphones on, eyes on his screen. I tried to call to him, but I'm not sure if any words came out. In any case, if a person is uncoordinated and sick on the floor of a train on Thanksgiving night in NY, unfortunately no one is going to think 'seizure'.

The next station I was aware of was Jamaica, which is a big, well lit station. Lots of trains, lots of people. People started gathering in the doorway, and I realized that I had to get up to get out onto the platform. There was a railing on the wall above my head, and my mind was clearing a bit, so I was able to stumble out and sit back down on the ground. And there I sat until I was clear enough to figure out what to do next.

After about 10 minutes more I was able to walk over to the waiting area and call my boyfriend, who was in NJ. I was incredibly tired, and still felt confused, but it was a level of confusion I could deal with, if that makes sense. Almost like being drunk, in a way. I knew where I was, and I knew how to get to Penn Station, which was my next stop on the trip. We decided that I'd go to his house instead of my own because it was easier and I shouldn't be alone. Getting back on the train was fastest, and I would call him as soon as I got to Penn. I drank some water, took some Pepto Bismol (the newsstands here are always open), and made my way to Penn. With him directing me on the phone I got on the right train to his house (also leaving from Penn) and he picked me right up. And then I slept for two days.

The aftermath is this: My neurologist did a bunch of bloodwork, and the amount of Trokendi (Topomax) I'm retaining/absorbing isn't as much as he would like. I'm on 100mg, and a baseline after 12 hours is minimum 4.4. I'm at 3.6. He's going to up it (not sure how much yet), and hopefully that will help. I'm also going to get a medical alert necklace to use specifically for travel like this. I love where I live, but the truth is, I travel alone around the NYC metro area almost every day. I'm also a little nervous, as I have to make the same trip out to Long Island for Christmas. Fun times. :)
 
Hi Natalie,

I'm sorry you had such a hard trip, I've been to NYC 5 times taking the train and subway and I do agree with you it could be stressful at times.

I know when I was on the Topamax it increased my seizures like crazy I had 23 in one month so I went off of that and started vimpat and that has done wonders for me.

If I may ask have you ever noticed if you have more seizures at certain times of the yr.? I always have more in the fall and winter do to the lack of serotonin this time of yr. You may want to try taking vitamin B12 1000 mcg.
once a day I found it was great reducing my seizures because it calms the nervous system down.

Here's wishing you only the best and May God Bless You,

Sue
 
Hi Natalie,
Sorry to hear you had a break through seizure on the train, I hope the med increase takes care of it.
 
Hi Natalie,

If I may ask have you ever noticed if you have more seizures at certain times of the yr.? I always have more in the fall and winter do to the lack of serotonin this time of yr. You may want to try taking vitamin B12 1000 mcg.
once a day I found it was great reducing my seizures because it calms the nervous system down.

I was diagnosed with temporal lobe epilepsy over the summer, so I'm still trying to get a handle on what a "normal" year is. Many of my seizures are super mild: weird smells or that roller-coaster feeling, maybe an eye-twitch. I didn't recognize them as seizures for a long time. I'm keeping a diary to try to figure out the patterns, but it's a new thing. I suspect that stress might be a thing for me, as it tends to mess with other areas of my body.

And yes, I'm on B complex supplements. When I had my initial workup with my neurologist, he found that my B's and D were really low, so now I take a multivitamin + a B complex + 5000mg Vitamin D.
 
Hi Natalie,
I also have temporal lobe epilepsy. The weird smells you notice are all part of a simple partial seizure also called an aura seizure. Stress and lack of sleep are the 2 big things that can trigger seizures for many people. I think it's great you are keeping a diary of your seizures this will help your Dr. out especially if the Dr. sees you are having seizures at certain times of the day/night and days of the month. What really bothered me a lot
is when I was younger and the hormones changing each month that's when the seizures would trigger up like crazy, but now I don't have to worry about that anymore. Also you may want to keep track if there's a low pressure in the weather or if you are sick this can sometimes trigger seizures for some people. Wishing you only the best and May God Bless You!

Sue
 
I hope the your holidays are as stress-free as possible and that the increase in Topamax keeps you seizure-free. Remember to take time-outs for yourself to meditate or lie down or listen to music -- whatever helps keep the stress at bay. Extra stars for your bf for being a good egg and helping to keep you safe. :)
 
I agree--a train/train station is a terrible place to have a seizure. When I began having Complex Partials, that was one of the first places I had a CP.
To make matters worse, it was less than a year after I had finished college, & I had just started a new job. I was standing at the local station, waiting for the train, then the next thing I knew, i was "coming to" at the hospital. If another commuter hadn't been there, I'd have fallen onto the tracks.
 
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