This has been difficult and sometimes I still cry when I think about this last week.
I have nocturnal epilepsy diagnosed at 18. Full grand-mal seizures. I am 45 and diagnosed with Ostepenia. I have not had a seizure in 10 or 11 years. Haven't seen my neuroligist in 10. My Dr. suggested I go back, possible even go off my meds. This is a new Dr and he switched me from brand name dilantin to generic, then sent me to my neuro.
So off I go. Get the EEG and it shows that I still need meds. I told the neur that it scares me more to change than go off. He lowers my dose of dilantin from 400mg to 300mg. We try Lamactal, (spelling?) gave me hives, achy bones dizziness. Due to the hives I am told to stop immediatly. I figured ok we're done.
Nope, next we try Keppra. Still on 300 mg of Dilantin. Start w/500 mg of Keppra then move to 1000. After the increase I could not form words. My husband was so worried, said I sounded like a stroke victim. I kept my positivness. I did not mention the fog the tiredness the vertigo haze I was in. I did call the Dr. At 9am at 5pm his assistant calls me back, we can cut out some Keppra. I ask to cut out the morning dose. (Keep in mind she hears how I am talking). I am told that she has to check w/ the dr. She calls back 2:30 in the afternoon next day. Ok cut out morning dose. I stutter out too much meds, need to lower dilantin. No not yet, just hang in there and call us in a week.
Each day my speech got better, 5 days later I sound better. But everyday I tell myself if I just keep going I will be ok. I feel like I am letting everyone down. The vertigo haze never lifted. I would cook because I am good at it and if I could put out a meal I would be ok. As long as I didn't stop. I was too tired in the mornings to get lunches and my daughter is late to school everyday.
Monday I decided that I needed to get lunches ready, but I sat down. So dizzy so foggy so hard. Food isn't good. I fail at lunches. Tuesday I am late the kids are late I hit pure panic and it never ended. I called the Dr in the morning. I saw weird things, but this is all in my mind and I just have to keep going. I am yelling and crying and I told my children that I should just put a bullet in my head. I told my husband he is better off w/out me. The dr. calls me around 5pm again, and asks what is going on, I am not even sure what I said. He told me to stop the Keppra. I apologized to him for letting him down.
It was a long night and my husband helped me so much. I have been off the Keppra since Tuesday, I am still tired and dizzy and the memories are so painful. I do not know who that person was and I feel so terrible.
I see the Dr. again on april 5th. This time my husband will go with me. I am going to tell him that I want to go back to my name brand Dilantin again. I can help the osteo. I can take vitamins, lift some weights, but I can never do this to my family again. I tried to fight this, but I just couldn't.
This has been a long week. My children are great my husband is great, my family so supportive. I hid my epilepsy for 27 years, now everyone knows, friends neighbors, I mean I couldn't speak for a week they wanted to know what was going on.
I don't know, maybe I just needed to say something. This journey is not over and I am still healing. I hope putting this out there helps.
Thank you
I have nocturnal epilepsy diagnosed at 18. Full grand-mal seizures. I am 45 and diagnosed with Ostepenia. I have not had a seizure in 10 or 11 years. Haven't seen my neuroligist in 10. My Dr. suggested I go back, possible even go off my meds. This is a new Dr and he switched me from brand name dilantin to generic, then sent me to my neuro.
So off I go. Get the EEG and it shows that I still need meds. I told the neur that it scares me more to change than go off. He lowers my dose of dilantin from 400mg to 300mg. We try Lamactal, (spelling?) gave me hives, achy bones dizziness. Due to the hives I am told to stop immediatly. I figured ok we're done.
Nope, next we try Keppra. Still on 300 mg of Dilantin. Start w/500 mg of Keppra then move to 1000. After the increase I could not form words. My husband was so worried, said I sounded like a stroke victim. I kept my positivness. I did not mention the fog the tiredness the vertigo haze I was in. I did call the Dr. At 9am at 5pm his assistant calls me back, we can cut out some Keppra. I ask to cut out the morning dose. (Keep in mind she hears how I am talking). I am told that she has to check w/ the dr. She calls back 2:30 in the afternoon next day. Ok cut out morning dose. I stutter out too much meds, need to lower dilantin. No not yet, just hang in there and call us in a week.
Each day my speech got better, 5 days later I sound better. But everyday I tell myself if I just keep going I will be ok. I feel like I am letting everyone down. The vertigo haze never lifted. I would cook because I am good at it and if I could put out a meal I would be ok. As long as I didn't stop. I was too tired in the mornings to get lunches and my daughter is late to school everyday.
Monday I decided that I needed to get lunches ready, but I sat down. So dizzy so foggy so hard. Food isn't good. I fail at lunches. Tuesday I am late the kids are late I hit pure panic and it never ended. I called the Dr in the morning. I saw weird things, but this is all in my mind and I just have to keep going. I am yelling and crying and I told my children that I should just put a bullet in my head. I told my husband he is better off w/out me. The dr. calls me around 5pm again, and asks what is going on, I am not even sure what I said. He told me to stop the Keppra. I apologized to him for letting him down.
It was a long night and my husband helped me so much. I have been off the Keppra since Tuesday, I am still tired and dizzy and the memories are so painful. I do not know who that person was and I feel so terrible.
I see the Dr. again on april 5th. This time my husband will go with me. I am going to tell him that I want to go back to my name brand Dilantin again. I can help the osteo. I can take vitamins, lift some weights, but I can never do this to my family again. I tried to fight this, but I just couldn't.
This has been a long week. My children are great my husband is great, my family so supportive. I hid my epilepsy for 27 years, now everyone knows, friends neighbors, I mean I couldn't speak for a week they wanted to know what was going on.
I don't know, maybe I just needed to say something. This journey is not over and I am still healing. I hope putting this out there helps.
Thank you
Being over-emotional, I think comes with this illness. We have so many different mood swings till it's hard for us to deal with sometimes. I now have gotten to the point where I make a joke out of it with friends and family. when I can't remember something or I feel like I'm not making sense, I just stop and say..Oh, she's (Epilepsy) acting up again and we all laugh. It makes me feel a lot better and makes it easier to deal with sometimes. I know it's not going anywhere, I just have to make it fit into my life somehow. Make it not be a henderience to me, you know, like a headache. I take something for it and keep on truckin'