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Understanding (My) Epilepsy
Jan. 5th, 2009 08:54 pmSince the death of John Travolta's son Jett, I've gotten a few emails and messages wondering if I was all right, if the idea of dying from a seizure scares me, if it upsets me. I also just learned that a girl whom many of my friends knew died recently -- she had a seizure in her sleep, fell from her bed, and broke her neck. Friends were apparently hesitant to tell me, since they had thought it would upset me. I do not know the girl, but my heart goes out to her loved ones.
It's a horrible thing, knowing that people with your medical condition die.
I'm not scared. I'm not upset. But I am realistic. Yes, seizures can potentially cause injury leading to death. Yes, I may have a seizure that will cause a fatal injury. I understand. I live with it.
I live with it.
Jett Travolta's death is a horrific and heartbreaking thing. So is the death of this young woman in my friends' circle of friends.
If you've been holding stuff back from me because you think it will upset me... don't. I need to know these things. So I can understand. So I can know.
Epilepsy by itself isn't a fatal condition. Unfortunately, its main symptoms -- seizures -- have led to death. SUDEP. Sudden Unexpected Death in Epilepsy. Unexplained respiratory failure, cardiac arrest, head injuries, neck injuries, spinal injuries; injuries caused by falling, shaking, striking the floor or a hard object.
When I was little, I had a friend named Cory. She developed epilepsy from a brain injury. One night, she had a tonic clonic seizure in her sleep. She fell out of bed and broke her collarbone. Her family heard her screaming and came running. She eventually had surgery to correct her seizures.
Most SUDEP victims have generalized seizures -- tonic clonic (formerly grand mal). It is common for victims to fall out of bed, or from a chair, or while standing. They strike their heads, they break their collarbones, necks, ribs, or limbs. It's very frightening.
I have partial seizures. Occasionally, they will spread across my brain, becoming secondary generalized seizures. My friends need to know this. I rarely develop secondary generalized tonic clonic seizures, and if I do they are triggered by extreme stress, exhaustion, excitement. Any time I've had a tonic clonic seizure, I have been on a bed or couch, and someone was with me to make sure I did not fall off or hurt myself.
However, there is a possibility that I could develop status epilepticus, prolonged seizures. In such a case, I would need to be rushed to a hospital. If the seizure lasts for more than half an hour, or if I suffer from several seizures in a row with no rest period, there is a possibility that I could fall into a coma, or die. Generally, if a seizure lasts for more than ten minutes, there can be damage to neurons. Complex partial seizures -- in which consciousness is impaired -- can become serious if they don't abate on their own. I've had complex partial seizures that have lasted just under ten minutes that have abated on their own, and I've been severely impaired for hours afterward. Usually I went to sleep and slept for hours and hours.
In conclusion: If you are my friend, and someone you know has died or been seriously harmed due to a seizure, please tell me. Tell me what happened, give me some details. Even if I don't know the person, I want to understand.
I may not fear my condition, but I am wary and cautious and very careful. It's sort of like handling a wild, dangerous animal that could escape and attack me on a whim. I need to know everything I can. I need to manage it and do my best to pacify, understand, and perhaps accept its nature.
Speaking of conditions, the migraine has eased considerably. I feel human again. Coffee and green tea and red tea helped.
It's a horrible thing, knowing that people with your medical condition die.
I'm not scared. I'm not upset. But I am realistic. Yes, seizures can potentially cause injury leading to death. Yes, I may have a seizure that will cause a fatal injury. I understand. I live with it.
I live with it.
Jett Travolta's death is a horrific and heartbreaking thing. So is the death of this young woman in my friends' circle of friends.
If you've been holding stuff back from me because you think it will upset me... don't. I need to know these things. So I can understand. So I can know.
Epilepsy by itself isn't a fatal condition. Unfortunately, its main symptoms -- seizures -- have led to death. SUDEP. Sudden Unexpected Death in Epilepsy. Unexplained respiratory failure, cardiac arrest, head injuries, neck injuries, spinal injuries; injuries caused by falling, shaking, striking the floor or a hard object.
When I was little, I had a friend named Cory. She developed epilepsy from a brain injury. One night, she had a tonic clonic seizure in her sleep. She fell out of bed and broke her collarbone. Her family heard her screaming and came running. She eventually had surgery to correct her seizures.
Most SUDEP victims have generalized seizures -- tonic clonic (formerly grand mal). It is common for victims to fall out of bed, or from a chair, or while standing. They strike their heads, they break their collarbones, necks, ribs, or limbs. It's very frightening.
I have partial seizures. Occasionally, they will spread across my brain, becoming secondary generalized seizures. My friends need to know this. I rarely develop secondary generalized tonic clonic seizures, and if I do they are triggered by extreme stress, exhaustion, excitement. Any time I've had a tonic clonic seizure, I have been on a bed or couch, and someone was with me to make sure I did not fall off or hurt myself.
However, there is a possibility that I could develop status epilepticus, prolonged seizures. In such a case, I would need to be rushed to a hospital. If the seizure lasts for more than half an hour, or if I suffer from several seizures in a row with no rest period, there is a possibility that I could fall into a coma, or die. Generally, if a seizure lasts for more than ten minutes, there can be damage to neurons. Complex partial seizures -- in which consciousness is impaired -- can become serious if they don't abate on their own. I've had complex partial seizures that have lasted just under ten minutes that have abated on their own, and I've been severely impaired for hours afterward. Usually I went to sleep and slept for hours and hours.
In conclusion: If you are my friend, and someone you know has died or been seriously harmed due to a seizure, please tell me. Tell me what happened, give me some details. Even if I don't know the person, I want to understand.
I may not fear my condition, but I am wary and cautious and very careful. It's sort of like handling a wild, dangerous animal that could escape and attack me on a whim. I need to know everything I can. I need to manage it and do my best to pacify, understand, and perhaps accept its nature.
Speaking of conditions, the migraine has eased considerably. I feel human again. Coffee and green tea and red tea helped.
