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janinestarr

janinestarr

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I am almost relieved to tears that I found this forum. I thought I was losing my mind! For the past six years now, I've had what I've always called "episodes" where I get the weirdest feeling in the entire world. The best I've been able to explain it is I feel like everything around me is moving so fast it's in slow motion, my heart speeds up, and I am fully aware of what is going on around me. For the longest time I used to try and stop the episodes to no avail, but listening to music or jumping in the shower. But it got to the point where when they'd occur, I'd sit on my floor and start crying, and rocking. I remember having these episodes as a child, but they stopped before returning six years ago. Now they'll happen a few times a day, or a handful of times a week, every few weeks. Not stopping for longer than two or three months at a time. Three years ago I started having migraines, in which I'd have auras and pass out-but I never had the physical pain of a migraine. I'd have auras, and then get really tired, and sometimes faint. I get these episodes a lot in the shower, and sometimes I'll smell this horrible burnt egg-like smell, when there's nothing there. Does this sound like simple partial seizures? Or am I really just crazy? Haha.
 
Welcome, I'm new too. My daughter has had two "episodes". Let's find some help together.
 
I am sorry your daughter has had them as well, I hope she figures out what is wrong and how to help her.
 
Hope you can find some help here.

They haven't given her a diagnosis. She is afraid of school, because both "episodes" happened there at 3:00 PM.
 
Thank you, you as well. That's strange, although I read on another forum about a woman who was having seizures at night, always at the same time. It's possible she is being exposed to some stimulus, be it in her surrounding environment, or biologically, such as blood sugar, that is triggering her "episodes" at that time.
 
Thanks

She is a sophomore and has been in the school for quite a while. I asked the custodian if they changed the light bulbs. She said no. She hasn't been in the room where the first seizure occurred since then. She is very afraid of math class, the site of her second seizure.
 
If she needs a friend, I'm here. I can give you my facebook link to give her. It's always nice to know you're not alone in this.
 
Hi Janinestarr & welcome,

No you're not crazy. What you've described does sound like a simple complex seizure.

From www.epilepsy.com:
SIMPLE PARTIAL SEIZURES

Sensory seizures:

These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

Autonomic seizures:

These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; sweating; or goose bumps.
Click to expand...

Have you told a dr. about your passing out episodes? It could be low blood sugar or electrolyte imbalance or hormones. It does sound like you do need some blood work/testing done.
 
Cint, thank you for validating my sanity. Yes, I told him about the passing out, it happens when I have a hypoglycemic episode, and usually need to eat something. I've been afraid to bring up the episodes in any kind of detail, because I'll admit I'm frightened of it being exactly what I think it is. On one hand, I'm really relieved to be able to put a name to it, but it's not a name I like. If that makes sense.
 
"For instance, they may believe that a parked car is moving farther away"

I actually had this is exact thing happen to me last year. I was with a friend and her mom, and we were parked at a gas station, the keys were out of the ignition. And I was in the middle of one of my episodes, my friend told me I kept telling her the car was moving while it was parked.
 
janinestarr said:
Cint, thank you for validating my sanity. Yes, I told him about the passing out, it happens when I have a hypoglycemic episode, and usually need to eat something. I've been afraid to bring up the episodes in any kind of detail, because I'll admit I'm frightened of it being exactly what I think it is. On one hand, I'm really relieved to be able to put a name to it, but it's not a name I like. If that makes sense.
Click to expand...

I also have Type 1 diabetes along with epilepsy and have had hypoglycemia several times, but haven't passed out or had a seizure, although
hypoglycemic episodes can lead one to having seizures, also, or seizure-like events. Please don't be afraid to bring up these episodes to your dr. in detail before things really get out of hand.
Do you check your glucose regularly? Have you had the A1c test done?
 
Yes I have, I do have hypoglycemia and have to watch my blood sugar levels, and moderate the amount of sugar I eat.
 
Hi janinestarr, just wanted to add my welcome.

You're in good company here, plenty of folks who have simple partials. Have you seen a neurologist about your symptoms?

Best,
Nakamova
 
Thank you Nakamova, and no, I have not seen a neurologist. I'll admit I'm afraid to make the appointment.
 
I understand your fear, absolutely! If the simple partials seem tolerable, than that may be preferable to any intervention. One argument for seeing a neurologist is if your symptoms are changing in any way -- happening more frequently, or lasting longer, or taking different forms. Since the brain can potentially get into the habit of seizing, there's the danger that they might escalate.
 
I thought about that. The experience itself hasn't changed per se, only that they've gotten more intense, have started lasting longer, and it used to be weeks or months in between, now sometimes it's days or sometimes hours. I am very frightened of them turning into something more, like I am petrified they'll turn into tonic clonic. I just, although naiive, I have that feeling like if I don't get it checked out, I can pretend it's not happening.
 
Well, following the "better safe than sorry" rule, I hope you do decide to check in with a professional...
 
Knowing that I have support here, makes me feel somewhat better. It's good to know I'm not alone in this.
 
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