Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

Comment from: confused, 45-54 Female (Patient) Published: March 24

I recently have been told by two specialists that I am having epilepsy seizures. I have an undiagnosed clotting disorder that I have been battling for years. During an episode that I thought was a transient ischemic attack (TIA) an EEG was performed and it was abnormal. Two months later I had a follow-up EEG and it was also abnormal. Fortunately I was having symptoms both times. I have since gone for a sleep deprived EEG and am awaiting results. I was not having symptoms at the time. I have had several pulmonary embolisms in the past and had a stroke in 1995 so these episodes I have been having we thought were TIAs until just recently. I do have episodes of staring and blinking. I am aware during this time but unable to respond. I am so confused as I might possibly have two different issues going on or maybe it is an autoimmune disorder that can affect both clotting and seizures. The specialists keep bringing up the word lupus but to date I have not received a diagnosis and with my most recent appointment with my neurologist he said that now he feels that I may not have lupus. I wonder if anyone out there has anything similar or at least some information to help me shed some light on this situation. The TIA symptoms I have been having include dizziness, weakness on my left side and slurred speech. After the episode I get very tired.

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Comment from: darrell, 35-44 Male (Patient) Published: February 14

Since 15 I have had seizures, I am now 35. I nearly died twice and came back. First one at 15, it was 8 hours of shaking and convulsions. I have long ones and short ones about 15 minutes. It feels scary at first and weird, then I am unconsciously shaking. I wake up hurt and feel weird and scared but not as much as before it happens.

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Comment from: 25-34 (Patient) Published: March 21

I am 27 years old and I have grand mal and petit mal seizures. I have been having seizures since I was a month old. I wonder if all of you ever see shadows surrounding you or someone else, and various objects, because this happens to me. I am sorry about all the seizures that we experience. It definitely is terrible!

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Comment from: bobbi, 35-44 Female (Patient) Published: July 21

I have not yet been diagnosed with epilepsy but my neurologist feels it is a seizure disorder, not sure what kind. I am going for an EEG and other testing. But from the symptoms I described, like having blackouts and not remembering them, she is concerned and prescribed me topiramate which I will not take due to many side effects.

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Comment from: mary, 55-64 Female (Patient) Published: June 20

I am soon going to an epilepsy clinic. I am so scared because of the exposure of my seizures to others I do not know. My daughter has recorded my seizures which I do not want to see. I am often woken by these seizures. I have many seizures. The most my daughter has recorded was in hospital, 116 in a 12 hour period. I hate them so much. The results of having so many have slowed my motor skills and thinking, plus speech. Inside of my mind I still think like myself but outwardly I speak like a child learning to put words together. I live moment to moment not knowing when this monster will escape. I understand what seizures are but to me they are a torment.

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Comment from: flipping, 35-44 Female (Patient) Published: June 24

I have had epilepsy for 40 years (since birth). I used to have 100/day. I have many different types, tried every pill in the book and brain surgery and now I have a vagus nerve stimulator and I take Gabitril and I used to have them in my sleep. But now I can't see my 2 children that are still living because a lady said anyone with epilepsy is mentally retarded and she gave full custody of my kids to my ex-husband. One of my babies died at the age of 2 weeks old because I had a grand mal seizure when he was in my stomach. My family threw me in my room when I had a seizure because they were ashamed and embarrassed about it, and that's why my auras are a deja vu of feeling like I am all by myself in a dark room. So anyone who suffers from seizures I wish you the best of luck.

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Seizure (Epilepsy) - Effective Treatments Question: Please describe effective treatments with epilepsy (seizure disorder).
Seizure (Epilepsy) - Lifestyle Question: In what ways has epilepsy affected your lifestyle? Discuss the challenges.

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