My wife had childhood epilepsy until she was about 13. They had her on depakote I think. She had petit mals. We got married when she was 20 and at that time the Dr said that she wasn’t on a high enough dose to stop anything so he took her off. Fast forward to Christmas Eve this year when she had a tonic clonic. Her ekg and ct were clear. The ER put her on 500mg Keppra twice a day and so far there have been no others. The neurologist scheduled her for an mri and eeg on the 17th. I’m sure you all know it has thrown us for a loop! She has been strong and working through it but I’m a mess. I have sometimes severe anxiety. I try very hard not to let it affect supporting her through this time. I’m a school principal and today was my first day back and leaving her alone with the toddler. I was an absolute wreck. Do any of you have advise for my wife’s new again journey or any encouragement for this hubby’s heart?
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First of all hugs to you, I know this must be hard for both of you.
Here are a few things to consider:
1. It might be helpful for you and your wife to think about any possible triggers and/or warning signs in the months/weeks/days leading up to the t-c. Has she experienced any odd episodes? Migraines? Have there been any recent stressors -- fatigue, changes in metabolism, hormones, etc.? If you can't pinpoint anything that's okay, but if you can it might be useful for the neuro.
2. Information is your friend: Ask the docs a lot of questions, write down the answers, and if there's anything that is unclear, ask some more. It could be that this is a return of her seizures (epilepsy is terribly sneaky that way), and given her history that would be the logical assumption. But the EEG will hopefully point the docs in the right direction.
2. IF she needs to go back on meds for awhile, there are a lot more to choose from these days. Keppra has a fast ramp-up time, which makes it the default first choice, but if for some reason it's not a good fit there are others out there. Since her earlier seizures were medication-responsive and eventually went into remission, that's a good indication that these newer ones will be as well.
4. Make sure you take care of yourself, and that will help you take care of your wife. A little anxiety is a normal response to an unexpected family health event. But since you know you may be at risk for more than a little anxiety, be proactive -- talk to your own docs and shore up your supports, (therapy, meds, help from family and friends, etc).
Finally, please feel free to ask more questions here at CWE, and/or just vent! Folks here get it.
Best,
Nakamova
Here are a few things to consider:
1. It might be helpful for you and your wife to think about any possible triggers and/or warning signs in the months/weeks/days leading up to the t-c. Has she experienced any odd episodes? Migraines? Have there been any recent stressors -- fatigue, changes in metabolism, hormones, etc.? If you can't pinpoint anything that's okay, but if you can it might be useful for the neuro.
2. Information is your friend: Ask the docs a lot of questions, write down the answers, and if there's anything that is unclear, ask some more. It could be that this is a return of her seizures (epilepsy is terribly sneaky that way), and given her history that would be the logical assumption. But the EEG will hopefully point the docs in the right direction.
2. IF she needs to go back on meds for awhile, there are a lot more to choose from these days. Keppra has a fast ramp-up time, which makes it the default first choice, but if for some reason it's not a good fit there are others out there. Since her earlier seizures were medication-responsive and eventually went into remission, that's a good indication that these newer ones will be as well.
4. Make sure you take care of yourself, and that will help you take care of your wife. A little anxiety is a normal response to an unexpected family health event. But since you know you may be at risk for more than a little anxiety, be proactive -- talk to your own docs and shore up your supports, (therapy, meds, help from family and friends, etc).
Finally, please feel free to ask more questions here at CWE, and/or just vent! Folks here get it.
Best,
Nakamova
I hear you and your worry. I'm a stay at home mom with 2 kids and I've had seizures since I was about 9 years old. I, too, am on Keppra twice a day and that's what I've been on for quite a long time. It worked for the longest time, but I've had issues again, more likely from other health issues coming into play.
If your wife knows whether her seizure onset is slow or sudden, you could ask her and if she's ever feeling "off" or "weird" to go ahead and text or call you.
My husband is a teacher and I usually end up messaging him if I'm having an off day or he can call and check in with me on his lunch. I also have family nearby so if I don't answer and he suspects something is wrong, he will try to call them to come by and check on me.
There's great support if you have nearby family or friends that she can also contact or call to check on her or swing by the house to check on her during the day while you're at work here and there. It might be more comforting, or she could send you a text or something multiple times a day to keep you updated while you're at work to let you know she's okay.
Things get rough, but with the medicine we have today, there's hope for things getting better and more under control as tests are done and treatment decisions are made.
If your wife knows whether her seizure onset is slow or sudden, you could ask her and if she's ever feeling "off" or "weird" to go ahead and text or call you.
My husband is a teacher and I usually end up messaging him if I'm having an off day or he can call and check in with me on his lunch. I also have family nearby so if I don't answer and he suspects something is wrong, he will try to call them to come by and check on me.
There's great support if you have nearby family or friends that she can also contact or call to check on her or swing by the house to check on her during the day while you're at work here and there. It might be more comforting, or she could send you a text or something multiple times a day to keep you updated while you're at work to let you know she's okay.
Things get rough, but with the medicine we have today, there's hope for things getting better and more under control as tests are done and treatment decisions are made.
Hi KSbandy,
Just like your wife I have had petit mal seizures for 50 yrs. and later on I got complex partial seizures also. The Dr. found out
that hormones changing every month is what was triggering my seizures. I retired last yr. from working as a Teacher Aide in
public school for 35 yrs. Just like your wife I was on Depakene but then my body got used to the drug so I had a DNA test done
to find the best seizure med to use with the least side effects only to find I was drug resistant so my Dr. told me to start using
the medical marijuana (CBD oil) and take my word that decreased my seizures to the lowest in my life.
Tell your wife to get a calendar and write down what time the seizure happened by doing this the Dr. may see a pattern in her
seizures. My Dr. saw I was having "seasonal seizures" which are when a person has more seizures at a certain time of the yr. I have
more in the fall and winter do to the lack of serotonin so I sit near a bright light and that helps a lot.
Make sure your wife isn't eating to many carbs and starch foods because that turns into sugar and in turn can trigger seizures
for many people. Also stay away from nutra sweet (aspartame) that is what really triggers seizures for many people because
it causes to much electrical activity in the brain.
Take note also is she is using a cell phone or around others that are using their cell phone because sometimes that can trigger seizures
do to the frequency of the phone and sometimes the person is sensitive to that frequency. I found that out when I was still working and
saw I was having more seizures before school and during lunch breaks it was then my Dr. did an e.e.g. on me and I didn't realize it but
they were firing up the cell phones and each time they did the brain wave would spike up very high.
I wish you and your wife only the best and May God Bless the Both of You,
Sue
Just like your wife I have had petit mal seizures for 50 yrs. and later on I got complex partial seizures also. The Dr. found out
that hormones changing every month is what was triggering my seizures. I retired last yr. from working as a Teacher Aide in
public school for 35 yrs. Just like your wife I was on Depakene but then my body got used to the drug so I had a DNA test done
to find the best seizure med to use with the least side effects only to find I was drug resistant so my Dr. told me to start using
the medical marijuana (CBD oil) and take my word that decreased my seizures to the lowest in my life.
Tell your wife to get a calendar and write down what time the seizure happened by doing this the Dr. may see a pattern in her
seizures. My Dr. saw I was having "seasonal seizures" which are when a person has more seizures at a certain time of the yr. I have
more in the fall and winter do to the lack of serotonin so I sit near a bright light and that helps a lot.
Make sure your wife isn't eating to many carbs and starch foods because that turns into sugar and in turn can trigger seizures
for many people. Also stay away from nutra sweet (aspartame) that is what really triggers seizures for many people because
it causes to much electrical activity in the brain.
Take note also is she is using a cell phone or around others that are using their cell phone because sometimes that can trigger seizures
do to the frequency of the phone and sometimes the person is sensitive to that frequency. I found that out when I was still working and
saw I was having more seizures before school and during lunch breaks it was then my Dr. did an e.e.g. on me and I didn't realize it but
they were firing up the cell phones and each time they did the brain wave would spike up very high.
I wish you and your wife only the best and May God Bless the Both of You,
Sue
Heavy Kevy
Stalwart
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Don’t feel selfish. At the time of my first seizure we had two Young children and moved into a new house. We luckily had a lot of support.
I can see the toll it’s taken on her. The more anxiety and stress I cause her the more she causes me. Take care of yourself. Sometimes I want to tell her.
secure your oxygen mask before assisting others 
Best of luck to you.
I can see the toll it’s taken on her. The more anxiety and stress I cause her the more she causes me. Take care of yourself. Sometimes I want to tell her.
secure your oxygen mask before assisting others Best of luck to you.