Hi all,
I am here on behalf of my mother who has had seizures for 4 years now. It all started on March 1st, 2009 at about 2 in the morning. I was 14 at the time, in my room on the computer when I heard an awful shout. I thought it was my brother perhaps having a nightmare and went out to investigate. My mother was sleeping on the couch at this time, as my father's sleep apnea machine kept her awake and they could not sleep in the same room together. Anyway, I found my mother having a tonic-clonic and I was deeply disturbed.
We did not call an ambulance this first time, but the second time a few days later we did. All tests came back normal. They started her on some meds- I don't recall which- but they deeply affected her cognitive abilities and she stopped taking them. She was a professor at a college at this time so she needed to be able to think and reason. (She has since left that position and switched to teaching full-time online.) Because she did not have seizures during the daytime and only in her sleep, we felt that medicating would be unnecessary and were unhappy and uneasy about taking a cocktail of chemicals.
Shortly thereafter she began experiencing what we started to call "blips." I suppose they are a type of complex partial seizure. This would affect her in the middle of the day and less often during sleep. They would usually involve her rocking back and forth, clearing her throat, laughing, repeating a word or phrase over and over, or even singing. Sometimes she could carry on conservations. She would return to a state of normalcy within a few minutes with, of course, no memory of the event. (Strangely, I have noticed that they would be triggered by intense emotion, especially sadness, although anger and joy could set them off as well. I don't know if that means anything.) At this point she gave up driving. However, she still did not go back to meds as the tonic-clonics would only happen perhaps once or twice a month and the "blips" would happen 2-3 times a week.
I consider myself a health conscious person and started having her take some vitamins: a multi, B-complex, niacin, taurine. It's hard to say whether these conclusively helped or not as the frequency of the seizures are hard to map. She is also currently on a modified Atkin's diet, though if I am being honest we have not really stuck to it as far as limiting carbs and testing ketones. We could be doing a much better job but she tells me that some days she doesn't even want to eat. Sigh.
However, the sh*t has really fit the fan this weekend. On Friday afternoon my mother was working on the computer when she had a "blip" event. This is certainly a common occurrence and we (myself and my two brothers, who are home schooled and home during the day) were not too worried. However, the "blip" escalated into a tonic-clonic seizure and she fell over onto the hardwood and began to seize. Thankfully she did not hurt herself. She recovered and went about her day, with no sign of being altered by this unprecedented event of a tonic-clonic during waking hours. However, I was deeply alarmed and disturbed by this occurrence and began to feel the panic welling up inside me. I knew that these seizures during the day greatly elevate the seriousness of the situation.
Today was even worse. She had two seizures today, both preceded by the "blips." The first she was sitting for and fell over again. The second she was standing, but we recognized that she was having a blip and were on standby to catch her if she started having a tonic-clonic, which she did. That was about an hour ago. When she came out of it, she sobbed, perhaps realizing that things are serious, and then went to bed.
I am scared for what lies ahead. I pray to God that this is not the new normal- I have recognized that, even though the seizures and blips are a terrible thing, she was lucky enough not to worry about injuring herself during the day through a fall or somesuch thing. No more. I hope this is just a fluke. I realize this may be controversial, but none of us what her to take medication because we are unhappy with the side effects. Now what?
Needless to say, as I am sure everyone here can testify to, it has shaken our family life to the core in a dramatic way. My mother feels at fault and constantly apologizes to us for the situation. I recognize that she is the one having the worst time of all, but I would be lying if I said it does not take a toll on me and others. I can't imagine what my father is going through.
So I guess I am just asking for some words of encouragement to not make this situation seem so hopeless and horrible, and perhaps some advice to if there are other supplements we could try. We just don't feel that medications are the way to go for us, though I recognize the new found danger in this situation. I just don't know what to do.
Thanks for listening.
I am here on behalf of my mother who has had seizures for 4 years now. It all started on March 1st, 2009 at about 2 in the morning. I was 14 at the time, in my room on the computer when I heard an awful shout. I thought it was my brother perhaps having a nightmare and went out to investigate. My mother was sleeping on the couch at this time, as my father's sleep apnea machine kept her awake and they could not sleep in the same room together. Anyway, I found my mother having a tonic-clonic and I was deeply disturbed.
We did not call an ambulance this first time, but the second time a few days later we did. All tests came back normal. They started her on some meds- I don't recall which- but they deeply affected her cognitive abilities and she stopped taking them. She was a professor at a college at this time so she needed to be able to think and reason. (She has since left that position and switched to teaching full-time online.) Because she did not have seizures during the daytime and only in her sleep, we felt that medicating would be unnecessary and were unhappy and uneasy about taking a cocktail of chemicals.
Shortly thereafter she began experiencing what we started to call "blips." I suppose they are a type of complex partial seizure. This would affect her in the middle of the day and less often during sleep. They would usually involve her rocking back and forth, clearing her throat, laughing, repeating a word or phrase over and over, or even singing. Sometimes she could carry on conservations. She would return to a state of normalcy within a few minutes with, of course, no memory of the event. (Strangely, I have noticed that they would be triggered by intense emotion, especially sadness, although anger and joy could set them off as well. I don't know if that means anything.) At this point she gave up driving. However, she still did not go back to meds as the tonic-clonics would only happen perhaps once or twice a month and the "blips" would happen 2-3 times a week.
I consider myself a health conscious person and started having her take some vitamins: a multi, B-complex, niacin, taurine. It's hard to say whether these conclusively helped or not as the frequency of the seizures are hard to map. She is also currently on a modified Atkin's diet, though if I am being honest we have not really stuck to it as far as limiting carbs and testing ketones. We could be doing a much better job but she tells me that some days she doesn't even want to eat. Sigh.
However, the sh*t has really fit the fan this weekend. On Friday afternoon my mother was working on the computer when she had a "blip" event. This is certainly a common occurrence and we (myself and my two brothers, who are home schooled and home during the day) were not too worried. However, the "blip" escalated into a tonic-clonic seizure and she fell over onto the hardwood and began to seize. Thankfully she did not hurt herself. She recovered and went about her day, with no sign of being altered by this unprecedented event of a tonic-clonic during waking hours. However, I was deeply alarmed and disturbed by this occurrence and began to feel the panic welling up inside me. I knew that these seizures during the day greatly elevate the seriousness of the situation.
Today was even worse. She had two seizures today, both preceded by the "blips." The first she was sitting for and fell over again. The second she was standing, but we recognized that she was having a blip and were on standby to catch her if she started having a tonic-clonic, which she did. That was about an hour ago. When she came out of it, she sobbed, perhaps realizing that things are serious, and then went to bed.
I am scared for what lies ahead. I pray to God that this is not the new normal- I have recognized that, even though the seizures and blips are a terrible thing, she was lucky enough not to worry about injuring herself during the day through a fall or somesuch thing. No more. I hope this is just a fluke. I realize this may be controversial, but none of us what her to take medication because we are unhappy with the side effects. Now what?
Needless to say, as I am sure everyone here can testify to, it has shaken our family life to the core in a dramatic way. My mother feels at fault and constantly apologizes to us for the situation. I recognize that she is the one having the worst time of all, but I would be lying if I said it does not take a toll on me and others. I can't imagine what my father is going through.
So I guess I am just asking for some words of encouragement to not make this situation seem so hopeless and horrible, and perhaps some advice to if there are other supplements we could try. We just don't feel that medications are the way to go for us, though I recognize the new found danger in this situation. I just don't know what to do.
Thanks for listening.