More seizure research

December 2nd, 2006 by cathy

I’ve been doing a tiny bit more research about seizures, because:

  1. I want to get pregnant again
  2. Its been really really hard, no matter how much we work at it
  3. My cycles have been really strange and sporadic
  4. I’m worried that the drugs might harm the baby
  5. My mom told me that once my dad was seizure free after a couple years, he was allowed to go off the medicine, but for some reason I thought the doctor said I had to be on it forever

As I was looking it up on the Internet, mostly at the National Institute of Neurological Disorders. I found out that my seizure auras were actually mini seizures. Jeff tells me that the doctor told me about this at her office, but I think the whole thing is still sometimes a shock to me. Knowing that, I’ve actually had AT LEAST eight seizures, which includes all the auras and the grand mal seizure.

An aura seizure:
Some people with focal seizures, especially complex focal seizures, may experience auras — unusual sensations that warn of an impending seizure. These auras are actually simple focal seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tend to be stereotyped, or similar every time.

The symptoms of focal seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex focal seizure may be misdiagnosed as migraine headaches, which also may cause a dreamlike state. The strange behavior and sensations caused by focal seizures also can be is taken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by an experienced physician to tell the difference between epilepsy and other disorders.

Reading this and actually having it are two very different things. The auras made me feeling like I was reliving a dream I had, but I would get really dizzy and have the shivers at the same time. I’d had these at really strange times. I remember one had come while I was serving pizza at the summer reading party in 2005. Poor me, I had no idea what was happening. Luckily, the auras weren’t usually obvious to anyone but me, so I was the only one who was scared.

The thing that kills me is that I had no idea what was happening to me, no one talks to you about seizures. They tell you all about depression, mood disorders, heart attacks, Parkinson’s disease, but not about seizures. According to the site, there are “More than 2 million people in the United States — about 1 in 100 — have experienced an unprovoked seizure or been diagnosed with epilepsy.” Somehow I think that may warrant more information being made available to people about seizures. If I had any idea that the dizzy spells that I was having were actually mini seizures leading up to my grand mal, I may have been much more actively trying to go to the doctor, instead of waiting until my big seizure sent me to the emergency department.

Grand mal seizures (aka, tonic-clonic seizures) are:

seizures that cause a mixture of symptoms, including loss of consciousness, stiffening of the body, and repeated jerks of the arms and legs. In the past these seizures were sometimes referred to as grand mal seizures.
I don’t remember any of that happening, but Jeff said that it scared the shit out of him.
I don’t really know where I was trying to go with this post, but I’ve been trying to get pregnant and I’m slightly afraid that the drugs are preventing me, and may harm the baby, since the drug I’m taking is relatively new, and doctors don’t think there will be any harm to the baby, but even so there’s a registry learn more information about the relative safety of specific antiepileptic drugs (AEDs) during pregnancy.
I’ve sort of lost my train of thought, and now I’m sad thinking about all of this, so I’m going to take my Lamictal and go to sleep… I love that the medicine I’m taking is also for bipolar disorder. Yummy in my tummy.

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