Epilepsy

[livingwith]

Hi, my name is Siya, I’m 36 and just recently developped full blown epilepsy some of you know it as the ‘grand mal seizures’. As someone who has never had health issues, this was quite a shock, however no more than for my husband. I don’t see myself having the seizures he does and every time it happens, he deals w/ it. It scares the living daylights out of him, but he stays calm and in control. I had my first seizure before finding out I was pregnant, so my first th...Read the full article

[spazanna]

Hi, My name is spazanna,
I was pregnant when i had my second grandmal. At this time i was not on any meds. But then they told me that if i did not take the meds that when i have a seizure i do not breath and so there for nor does my baby. So i was scared to death for my unborn child. They said there was not enough information out at that time to tell me about pregnant women and the side effects from the drugs for there unborn children. Well thank God my child is going to be 16 years old and healthy. But she was born with two holes in her heart. They healed them selfs. You are making the correct chose not only for you but your husband. It is not an easy one.I was only three mns. pregnant when this happend.

spazanna

[mhazel]

I married Ed in 1977who has had epilespsy since he was 12 or so years old. Our marriage has had its ups and downs, but we had two children and managed to hang together. Since he never remembered having the seizures or knew what it was like, I felt pretty alone during the seizure times. He used to have 8 or more days each month with seizures. And the seizures would add up to 8 or more seizures in that 24 hour cycle. It was rough, my faith in God and family and friends helped carry me through those rough times. Ed's seizures mostly were the temporal lobe variety with the gran malls ocurring if his dilantin level dropped for an unknown reason. He has broken bones many times from the falls (always he did if standing during a seizure). There were many hopsital ER visits and hospital stays and the most difficult times were when the children were small and I couldn't be with him much. My parents didn't live near and his were older and his siblings never really got involved. So I felt very on my own alot. I had good neighbors who helped out some and I doubt they ever knew how much I depended upon them.

Ed got into a drug study for pregabalin (now Lyrica) in the early 2000's and also had a vagus nerve stimulator placed in like 1998 I think. Apparently those two things helped him alot. Because in the 2000's his seizures spread out to a couple of times a month and he would have 2 or so each day he had them. He just went through a 9 month period with NO seizures. Amazing. But this past Friday he had two tonic clonic seizures, not sure why? You know I always wanted to know why and then perhaps I could prevent anymore. But somehow there never was a reason to see. He feels so badly after those, the headaches are so bad. He is so so confused and just calls for him Mother (who died when he was 8) and wants to walk around holding his head. I can tell he feels scared then and just wants me to hold him. He used to have 5 to 8 of those over a 24 hour period in the past and I would end up taking him to the hospital and he would be given valium I think. He would sleep most of the time for several days after that and not be himself for over a week.

Ed has been fortunate to work through all these times. He worked for the city and now for the state. I am grateful for the wonderful coworkers he has now. They look out for him and seem to care so much about the quality of his life.

I know how difficult it can be to be a spouse of someone with epilepsy. If I can help anyone with words of encouragement, I could be happy to do so. Support is so necessary, I know.

M L