Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
I'm so tired of this
Wed, 07/05/2006 - 13:08Greetings!
This is my first post on this site. There is a ton of good information out there and many people who relate to about every feeling that I have.
However I still thought it good that I vent my situation and see if anyone could offer insight or advice that might help me at the moment.
April 9th 2006 I feel out in the floor in front of my wife with a grand mal seizure. I had never had a seizure before and neither of us knew what was happening. My right arm started jerking and then it felt as thought I had been put in a vice. For a few seconds I could still hear my wife. She paniced and I could hear her screaming and begging me not to die. It may sounds silly to people who have had many seizures but we nad no idea what was happening. I came to with paramedics in my house telling me I had just suffered a seizure.
I spent the next 2 weeks in and out of the hospital. Every time they would release me I had another seizure. My lovely wife was very supportive and kept me calm for the 2nd and 3rd seizures. They finally decided on 350 mg dose of dilantin taken once daily. I haven't had another seizure since.
This morning the doctor called to inform that an enzyme in my liver is still elevated and slightly more so than the test they did last month. Also my dilantin level is low. I have a doctors appointment for July 17th.
I'm scared about what is happening with my liver. I am also worried about my med levels. For the two weeks that I spent in the hospital there was never a dianosis made. When I see my family doctor he only talks about what my meds are doing to me. I would like to know what is going on with me.
I don't know how much fear is normal for an adult who recently started having seizures but I live each day terrified of my next seizure. Any slight muscle spasm or knee twitch cause panic that I feel thru my whole body. It takes me a while to get my heatrate back down.
The worst part is I cannot get the sound of my wife's voice being scared to death out of my head. I keep hearing her begging me to wake up and not to leave her. I think about it all day long and feel so guilty for scaring her. It really really depresses me.
On an up note though....
Thru a blessing from God (more powerful than contraceptives) my wife and I conceived our first child in between my first two visits to the hospital. She said as she stood by me in the ER she asked God why she didn't have a baby yet...fearing that the worst might happen. Now I am expecting a son or daughter Jan 4th. I would like to know some closure to all this before I start my second life as a parent.
If ya read all this thanks for listening.
Heath
Comments
Re: I'm so tired of this
Submitted by mommy2kyra on Wed, 2006-07-05 - 22:49
Hi Heath,
First of all, CONGRATULATIONS on becoming a parent!! I hope that everything goes well for you and your family...best wishes :)
Your feelings are perfectly understandable. This whole situation can be overwhelming at times. My question would be what type of doctor are you seeing? Have you asked the doctor exactly what type of seizures you are having? If you haven't asked your doctor that question, please do. Different meds are more effective on different types of seizures. In my case, I was started on dilantin. I continued to have my partial seizures so they added depakote. The depakote worked great on my seizures (as the depakote is used primarily for partials). My neuro (at the time) finally took me off dilantin once I firmly told him to take me off. There was no change in seizure support when I stopped that med.
Another big tip would be to learn as much as you can about different seizures. It's quite possible that you've been having partial seizures for a long time, and no one ever noticed. I began having seizures as a young child, but didn't have a grand mal (secondarily generalized seizure) until almost age 26. I had frequent simple partials as a teenager and beyond, but no one noticed. When they did notice, I was mis-diagnosed with panic disorder. Unfortunately, this experience is not totally unusual. Many of us have seizures for years without others recognizing them.
I hope that you gain control of your seizures very soon. I do remember the dilantin having possible effects on the liver (several meds do), so I'd be wary of raising your level further. Dilantin is an old drug, and that tends to have more side effects than the newer. My best advice would be to educate yourself as much as possible before you see your doc. Then, go in with a written list of questions/concerns.
Best of luck, take care!
Heather :)
Re: Re: I'm so tired of this
Submitted by Heathallen on Thu, 2006-07-06 - 11:19
Thanks for all the replies and great information.
I don't know what type of seizures that I have. While I was in the hospital all my MRI's came back normal. They hooked me up to a EEG (not sure if that is the correct name or not but they glued a bunch of electods to my head). They kept me awake for 48 hours to see if that would cause a seizure. However they kept me on dilantin during the test and of course I didn't have a seizure. I believe they said that they would need to see me have a seizure while hooked up to tell what was wrong. My memories are sketchy at best...that month seems like a blur.
So they released me and told me to see my family doctor. All he does is manage my med levels and my body's reaction to them. I'm really in the dark about what is wrong with me. I guess I could request to see a neuologist and start the process all over again??
I kinda feel like the doctors didn't have a quick answer and would rather just keep me medicated and not try to address the issue. I don't know what steps I could take to find out more about my condition.
I am working on a list of questions to take to my next doctor appointment. This time I'm also bringing my wife with me so that I won't forget anything important.
Does anyone know,...with my dilantin level being low..am I at risk of a grand mal seizure or maybe just a partial seizure?
The third seizure that I had never turned into a grand mal. My right leg kept going numb and any time I set up it would get numb and then start to tremble. When I laid back down it would stop. This went on for about an hour before I decided to go back to the hospital. The neurologist said that there is no way to prevent a seizure so that wasn't what I was experiencing. However she offered no information to explain what was occuring.
Re: I'm so tired of this
Submitted by fzMousie on Wed, 2006-07-05 - 13:14
Welcome to the site. I wish I had something useful to say, but all I can offer is a hug and reassurance that you are totally not alone. Have you tried writing down the things you want answers on? I find that unless I go into my appointments armed with a list of things I need to find out, I walk out just as frustrated and confused as I went in. Good luck. There are a lot of people here in your shoes. One of the best things is just the support of knowing you aren't alone.