Newbie

[Knytecraller]

Hello all,

My name is Knyte. My life started off having Febrile seizures, thinking I would grow out of them, and I did until I was 15. I started having seizures at least once a week. Tried tegrital, and topamax, depakote. Nothing worked. Continued to have seizures on a regular basis. I had a baby at 19, and my seizures completely stopped. I was taken off my meds, and I got my life back.

Until 4 days after my 32nd birthday. The nightmare started all over again. I first was put on Dilantin, didn't work. Then I was out on Keppra, which has been a nightmare. Anger, rage, depression, terrible thoughts. Dr is now weening me off keppra to Trileptal. First day of my day with less Keppra I had another seizure. I have also been put on klonopin to help with my anxiety.

I cry everyday knowing for 12 years I had a normal life,many now I'm back where I was again. No driving, trouble thinking, and processing things. Falling down stairs. I'm sure most of that is due to my meds. But I'm lost, it would be nice to have people to talk to that understand me, and an idea of what I'm going through.

Thank you for your time

Knyte:e:

 

[valeriedl]

I don't know how long you've been on Trileptal but give it some time and see what happens. It's not going to start working right away.

I was diagnosed with epilepsy when I was 26. I went through so many meds that I've lost count trying to see which ones worked. Some caused more seizures and some I went off of because of the side effects. I take Keppra right now and I know what it's like. I told my neuro that I'd like to stop taking it and he's looking into something else that he thinks will work.

Since I've been diagnosed with epilepsy there are so many things that I can't do now. I don't like to cook when I'm home alone and really don't like to if there is someone here with me. I almost started a house fire recently because I had a seizure while making dinner. Luckily my husband was home and smelled the food burning.

There are a lot of house hold chores that I don't/can't do now. I don't like getting on ladders or standing on a chair. I'll go up and down the stairs to do the laundry but my husband doesn't like me doing that so I have to wait for him to be home to wash the clothes.

My family didn't like me to take a shower when I was home because for awhile I was having seizures in it. I finally said heck with that, I'm not going to walk around dirty all day till my husband gets home from work.

The worst is not being able to drive. I have to weave my life around everyone else's just to get places. If I need something I can't just run to the store to get it. A lot of times my husband has to take off work to get me to dr appointments.

Everyone here knows what you are going through and understand what it's like. I've gotten a lot of help about things that I deal with because of this web site.

Nice to meet you!

 

[Knytecraller]

I believe the other hardest part, is idk if my family (boyfriend) can deal with my illness. He thinks I lack the fight to get back to myself, or the will to get better. I wish he would read all the info I have given him on these meds I'm on.

Knyte:e:

 

[Nakamova]

Hi Knyte, welcome to CWE!

I hope the Trileptal helps. As Valerie says, give it some time, and keep your fingers crossed that it does the trick. If for some reason the Trileptal isn't a winner, there are other meds out there to try. You're mileage may vary, but I've had decent success with Lamictal, with no cognitive side effects.

Did your anxiety arrive with the Keppra? If so, then it may eventually recede as the Keppra gets out of your system. If that's the case, you may not need the Klonopin.

I hope you start to feel better soon. You've come to the right place -- CWE members know exactly what you're going through, and are great at offering advice and support.

Best,
Nakamova

 

[Knytecraller]

I have only been on the trileptal for 2 days, I'm still on the keppra. The dr have me the klonopin because I was a wreck in the office, because I had just had a seizure after so long being seizure free.

I also had a very stressful job that might have brought this all on. Who knows. I'm not working until I am stable, life is so frustrating at the moment.

 

[valeriedl]

I believe the other hardest part, is idk if my family (boyfriend) can deal with my illness. He thinks I lack the fight to get back to myself, or the will to get better. I wish he would read all the info I have given him on these meds I'm on.

Knyte:e:

Does he go to your neuro visits with you? The neuro might be able to explain the side effects of the meds that you are on so he can understand it's the meds doing this and not you. He can ask questions about things that he wants to know about too.

Stress is a HUGE seizure trigger for me. Any time something happens that is stressful in my life my husband and I just wait because we know that a seizure is probably going to be on it's way.

 

[Knytecraller]

He's very stubborn, I don't know if he will.
I printed out so much for him and he hasn't read a single paper.
My depression is getting worse, I'm just hoping my trileptal takes it away.

 

[Cint]

Since I've been diagnosed with epilepsy there are so many things that I can't do now. I don't like to cook when I'm home alone and really don't like to if there is someone here with me. I almost started a house fire recently because I had a seizure while making dinner. Luckily my husband was home and smelled the food burning.

There are a lot of house hold chores that I don't/can't do now. I don't like getting on ladders or standing on a chair. I'll go up and down the stairs to do the laundry but my husband doesn't like me doing that so I have to wait for him to be home to wash the clothes.

I can understand the ladder thing, but going up and down stairs in your home, I don't understand why your husband has an issue with that. What difference does that make? Before I left my husband (who is a pilot, BTW so he's gone a LOT) our home had stairs and so I had to go up and down stairs numerous times a day while home alone. And I've had a few CP's while cooking. Once I burned myself while at the stove and had to have surgery later. There are ways to deal with E while home alone.

My family didn't like me to take a shower when I was home because for awhile I was having seizures in it. I finally said heck with that, I'm not going to walk around dirty all day till my husband gets home from work.

My very 1st TC seizure happened while I was stepping out of the shower. I suffered 2nd and 3rd degree burns on my back and arm because as I fell, I hit the hot water and was lying there long enough before anyone heard me and knew something was terribly wrong. So regardless, kitchens AND bathrooms can be dangerous for those of us with E. Even a small amount of water in a bathtub can be dangerous if not careful. Don't let E define you or control you!

The worst is not being able to drive. I have to weave my life around everyone else's just to get places. If I need something I can't just run to the store to get it. A lot of times my husband has to take off work to get me to dr appointments.

:agree: The worse part is not being able to drive and having to ask others. Now that I am separated from my husband, it is even harder. But even before we separated, with him being out of town so often and no family around, it is very difficult to deal with. Have to rely on friends for rides to dr. appts and to the store.