I am a 29 year old Kindergarten teacher who is 7 months pregnant, married to a wonderful man (28), and have a three year old daughter who is equally wonderful.
On December 23, 2005, my husband had his first seizure. It was terrifying, seemed to come from nowhere. It was a grand mal, and I took him to the ER. He was referred to a neurologist who found no cause for the seizure (they did a 24 hr. EEG and CAT scan), and pretty much dismissed it as a one time occurence. He didn't feel medication was warranted, warned us of the 6 months of no driving until seizure free, and sent us on our way.
The six months of being seizure free came and passed. The seizure seemed to be just a fluke, and we began to forget about it. I never thought it would happen again.
This past Friday, October 20, 2006 was an ordinary day. I noticed Matt was a little "off" - not really talkative. He said he was just really tired. We watched some TV, I played on the computer. Around 1 AM, we were still up, Matt watching TV in the recliner, me playing online games (in the same room), when I noticed Matt stretched the recliner way back. I thought he was just stretching his body, but then he began to seize. It was much worse than the first seizure. It lasted longer, much longer. He bit his tongue and began bleeding from his mouth. I moved anything that could harm him, and sat with him until it was over. When it was over, it took a very long time to recover. He couldn't speak, focus his eyes, or move for at least 30 minutes or longer. The first word he finally said was my name. I did not take him to the ER because there seemed to be no reason. They didn't do anything for him the last time. I stayed up all night keeping vigil over him.
The next day he said he knew he was about to seize (Friday night), that his Pepsi tasted funny (too sweet), and he saw two very bright lights in his right eye. All weekend, he has been awake a total of maybe an hour, and he seems to be physically unable to stay awake for long periods. I know he's exhausted. I've looked up grand mal seizure and sleeping, and it says exhaustion is normal, but it just seems to have gone on for a long time now.
He has nerve damage in his leg due to a back surgery for which he takes pain medication, Lyrica, and Cymbalta. He currently sees a pain management doctor. We don't have a general practitioner. We're trying to determine where to go from here as far as seeing doctors. Should we go back to the neurologist or discuss this with the pain doctor? Is this definitely going to happen again? Is he epileptic now? Just so many questions.
I don't have anyone IRL to talk to about this (Neither of our parents are understanding), and being pregnant, taking care of a three year old, and working full-time is so overwhelming. Matt is currently unemployed because of the nerve damage. Now, I don't know if the seizures are a part of our life or not.
I'm sorry to unload, but I needed a place to turn to. I'm not sure what anyone can even write in response to this...lol. I just needed to talk.
TIA.
On December 23, 2005, my husband had his first seizure. It was terrifying, seemed to come from nowhere. It was a grand mal, and I took him to the ER. He was referred to a neurologist who found no cause for the seizure (they did a 24 hr. EEG and CAT scan), and pretty much dismissed it as a one time occurence. He didn't feel medication was warranted, warned us of the 6 months of no driving until seizure free, and sent us on our way.
The six months of being seizure free came and passed. The seizure seemed to be just a fluke, and we began to forget about it. I never thought it would happen again.
This past Friday, October 20, 2006 was an ordinary day. I noticed Matt was a little "off" - not really talkative. He said he was just really tired. We watched some TV, I played on the computer. Around 1 AM, we were still up, Matt watching TV in the recliner, me playing online games (in the same room), when I noticed Matt stretched the recliner way back. I thought he was just stretching his body, but then he began to seize. It was much worse than the first seizure. It lasted longer, much longer. He bit his tongue and began bleeding from his mouth. I moved anything that could harm him, and sat with him until it was over. When it was over, it took a very long time to recover. He couldn't speak, focus his eyes, or move for at least 30 minutes or longer. The first word he finally said was my name. I did not take him to the ER because there seemed to be no reason. They didn't do anything for him the last time. I stayed up all night keeping vigil over him.
The next day he said he knew he was about to seize (Friday night), that his Pepsi tasted funny (too sweet), and he saw two very bright lights in his right eye. All weekend, he has been awake a total of maybe an hour, and he seems to be physically unable to stay awake for long periods. I know he's exhausted. I've looked up grand mal seizure and sleeping, and it says exhaustion is normal, but it just seems to have gone on for a long time now.
He has nerve damage in his leg due to a back surgery for which he takes pain medication, Lyrica, and Cymbalta. He currently sees a pain management doctor. We don't have a general practitioner. We're trying to determine where to go from here as far as seeing doctors. Should we go back to the neurologist or discuss this with the pain doctor? Is this definitely going to happen again? Is he epileptic now? Just so many questions.
I don't have anyone IRL to talk to about this (Neither of our parents are understanding), and being pregnant, taking care of a three year old, and working full-time is so overwhelming. Matt is currently unemployed because of the nerve damage. Now, I don't know if the seizures are a part of our life or not.
I'm sorry to unload, but I needed a place to turn to. I'm not sure what anyone can even write in response to this...lol. I just needed to talk.
TIA.
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Re: Overwhelmed
Mon, October 23, 2006 - 3:20 PMReally sorry to hear about your husband's problems and how it affects you. I think you guys handled the seizures pretty well. I think seeing a neurologist is (of course) important. But I was just wondering why he's seeing a pain management specialist. you described a very typical seizure; the auras, change in taste of pepsi, and the gm. I hope this isn't cutting short, but everyone has a threshold, or breaking point, having seizures. It can be organic or you can, in a way, trip the wire by what you are doing. I'm not an MD (just a psychotherapist with seizures). Most people with a seizure disorder know more about them than doctors. And sometimes the best treatment is talking with others alike. Hope he will be well. (check out temperal lobe seizures). If the MD prescribes medication, consider it since this is the second time. Most people with seizure disorders resent MD's because most of what they do is see you for 15 minutes and prescribe you something. If it isn't working, either raise the level, or change meds. This is can be so fcuking frustrating. -
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Re: Overwhelmed
Wed, October 25, 2006 - 8:06 AMHe is seeing a pain management doctor because he has chronic nerve damage to his left leg. Actually, the first seizure was a blessing in disguise because it was the neurologist that found the nerve damage in his leg. It's pretty severe, and he has had a hard time getting dr.s to do anything because he is so young. He finally had back surgery (it was a disc compressing a nerve bundle) in May, but, unfortunately, the surgery itself led to scar tissue which is now compressing the nerve even more than before. He is seeing the pain management/rehabilitation doctor for one year to manage this, at which time they may do another surgery to try to make the opening bigger to allow for the scar tissue and not compress the nerve?). He does not do any illicit drugs, but he does take the four prescribed drugs from the pain management doc. He hasn't been on those for quite a month, so even though Lyrica is supposed to help with seizures, maybe he just hasn't been on it long enough?
We actually are going to see his neurologist today. Something is not right. He has no memory starting with Friday - no short term or long term. He can't even remember what we ate last night for dinner. Then this morning, he started throwing up for no reason. I guess in my heart I feel like there's something more to all of this than just a "fluke". He also had viral meningitis back in July. Seems like a lot of nerve, spinal cord, and brain problems for one person who is so young and two years ago was the picture of health to be going through all at once, you know?
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Re: Overwhelmed
Wed, October 25, 2006 - 6:26 PMI'm sorry to hear about your husband's sudden and unexpected seizures. My boyfriend had his first seizure at 19. It is terrifying isn't it? I was in hysterics when my boyfriend had his first grand mal. The 911 lady couldn't even understand me I was crying so hard. The neurologist we were referred to avoided giving him medication at first in case it was just a "fluke seizure." Unfortunatley, he had another grand mal no more than a week later, and then had all the tests, was diagnosed with epilepsy, and put on medication and all that jazz.
From my experiences, I would say if your husband has now had two grand mals, they are probably going to continue if medication isn't in the equation, but I wouldn't necessarily say he has epilepsy. There are so many different kinds of seizures out there it's amazing. Check out www.epilepsy.com and, more specifically, www.epilepsy.com/epilepsy/glossary.html. That glossary helped me out immensely in understanding the disease.
But be sure to find a good neurologist that will listen to all your questions and concerns. Some doctors seem to think they are God and will dismiss some things you say if it doesn't "match the data" (something my boyfriend's neuro actually said to him when we told him he was still having seizures with a certain medication).
I'm feeling overwhelmed too, so trust me, I understand. If you need to talk, feel free to drop me a message :) I hope things get worked out with your husband, and take care.
Stefanie -
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Re: Overwhelmed
Wed, November 22, 2006 - 4:39 PMSeizures are like headaches - anyone can have them. We all have a seizure threshold. Factors combine and sometimes we go over threshold and have a seizure.
What's different about people with epilepsy is that our threshold is always low and we go over easily. The drugs and other management techniques help put it back up.
It took a couple years of seizures to notice a pattern and diagnose my epilepsy.
So what I'm saying here is it will take a while before you will know if your husband has a seizure disorder.
The other thing to know about this business is that there's not much to know, that is we don't know very much about it. It's a big mystery. Most of my learning has been experiential and experimental.
Good luck in getting through this and I hope it passes for him!
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