And the world goes sideways….

I was diagnosed with epilepsy at the age of 10, and I’ve been dealing with generalized seizures ever since. For most of my life, I would just have partial complex seizures, with no warning. However, I’ve noticed over the past year or so I experience simple-partial seizures, too. I’ve changed neurologists at various points throughout the years, and one of the most difficult questions to answer is asked in that initial visit: “Can you describe your seizures?”

Yeah….  Well, a full convulsion isn’t that difficult to describe; it’s the simple-partial seizures they’re asking about. That’s what I’m writing about today.

Simple-partial seizures are a type of generalized seizure, but the patient remains conscious and is aware of his or her surroundings. There are no convulsions. Because they are generalized, they can affect different areas of the brain, causing different symptoms. When I’ve had one of these, I have experienced odd tastes, auditory hallucinations, extreme emotional mood swings, but the one common symptom I always feel is that “shift” out of phase from everything else going on around me. I literally feel the world move sideways, and suddenly all my responses are just that much slower. If you ask me a question, I have the answer in my head, but it takes me two-to-three times longer just to get my words (which is damn frustrating).

Then there is the floating feeling. Sometimes I feel like I’m in a vacuum, or floating. You might say it’s like being high – without doing anything illegal. But it’s not a good feeling. It scares the crap out of me. Even if it just lasts a few seconds, I’m not in control of my senses, my body, my responses, or anything. If the simple-partial seizure progresses to a full-blown complex, I won’t be able to stop it.

I think the vacuum feeling and the half-step-out-of-phase feeling may be related. I feel isolated… out of body. And with all of this, it takes longer to describe than to experience. Once it passes, it takes me about 30 minutes to recover. I may not be disoriented, but I am shaken.

Lastly, there’s that feeling of embarrassment when this happens in a social situation. I know there is no need to feel embarrassed, but if I’m with a group of people and we’re doing something, I need to stop for a moment. I feel as though I’m bringing  everyone to a screeching halt and it’s my fault. Oh, I suppose I have some good, old-fashioned, Catholic Guilt in there, too. 😉

So, that’s what it’s like…for me. Your mileage may vary.

3 thoughts on “And the world goes sideways….

  1. I think next time you visit a new neurologist, you should take a copy of this post with you! Great explanation of what you go through. I always old doctors it felt as if I were in a commercial – not able to respond but knowing all the characters and partially understanding the conversations continuing around me without the ability to join in… a sort of de’ja vu experience.

    Thank you for sharing this information to help people better understand what seizures feel like as you experience them. Seizures are hard for most other people without seizure experiences to understand.

    1. Thanks for the comment and the feedback!

      Putting the experience into words was difficult, and it took a while to compose that post. I know there are so many people out there who have to answer that same question, too. I’m glad to be able to help others with this post. 🙂

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