Need help very badly, please!

Re: Need help very badly, please!

Submitted by rebmil on Wed, 2013-10-09 - 18:18

I just read your post. I can understand all the questions you have and how you are feeling scared that your husband will have another seizure. But like one poster said, when a person has one seizure that does not mean they have a seizure disorder or epilepsy. It most likely was caused by the medication your husband was taking. There are many medications that cause seizures as a side effect.

I first started to have grand mal seizures only in my sleep starting 5 years ago in 2009. I was sleeping on the couch and woke up around 6am in the morning to feed our dog and cat. My boyfriend wanted me to go back to bed in the bedroom, but something told me to stay sleeping on the couch. I believe that was my first aura. Later my boyfriend was on the computer and apparently our dog was trying to get his attention. He told her to lay down. She witnessed my seizure and cuz I was her mama, she went to her daddy to let him know something was wrong with me. Then a few minutes later he heard a "ghostly" sound. He said, "Babe did you hear that?" and looked over at me on the couch and saw I was having a grand mal seizure. He called his stepmom and told his parents I was having a seizure and his stepmom came right over. They called the ambulance. I was taken to the hospital. I had a CT scan done, it came back normal and nothing was really done. The dr. never told me why I had a seizure and I was sent home. 2 months later I had another grand mal seizure in my sleep. The ambulance was called again, but because of the cost of being taken to the hospital in one ($900 ambulance ride) my boyfriend drove me to the hospital. Again the dr. did not tell me why I had a seizure or what type they were. We went home against the hospital wanting me to stay. It was 2am in the morning and I had to go to work that day. We went back to bed. Two hours later, I had another grand mal seizure in my sleep. We went back to the hospital. I was given a liquid anti seizure med intravenously, and was put on Dilantin 100 mg 3xaday. I was told to follow up with my primary care dr. within a few days. One thing should be known, I have something wrong with my stomach. I have stomach nausea and feel like I have a stomach flu everyday at least 5-20 times a month. When I started taking the Dilantin 3xaday, it was not good. It made my stomach nausea even worse. So I called my dr. and told him and he told me to take it 2xaday. I took the Dilantin for a while then it was changed to Phenytoin 100 mg 2xaday. Then a year later it was changed to Tegretol. I took the seizure med. for a year and a half. The grand mal seizures I had only in my sleep stopped. With in that time my primary care dr. gave me an EEG and MRI. Both tests came back normal showing no seizure activity. I found out that the EEG should have been given when I was sleeping. My seizures only happen while I am asleep, so seizure activity would only show during sleep. Then I started to notice I was losing my memory. I could not remember things like my aunt's last name or my cell phone number. I found out a side effect of seiz. meds is memory loss. Also all seizure meds are not good and some can cause even worse medical problems like bone loss and liver problems. So I decided to wean myself off the seizure med. I slowly decreased my seiz. med and finally in 2011 I did not take anymore seiz. meds to control my seizures.

Right now I have 1 maybe 2 grand mal seizures a month only in my sleep. I have a lot of the side effects of grand mal seizures. My boyfriend sees me having one and says my face and lips are blue and I stop breathing. He says my eyes are open wide and blinking rapidly like I am being electrocuted. My body is stiff as a board he tells me cuz I guess he lifted my leg and it was stiff and did not bend. When I come out of the seizure I am confused. It takes me 30 min. to an hour to fully come out the seizure. I have a terrible headache after one, the right side of my tongue is bitten, I have peed my pants, my legs are sore, and I have bad stomach nausea. For the rest of the day I am tired and rest. My brain does not feel right and sometimes stray thoughts come to me and I wonder who am I or what am I doing? I also have auras and at least 4 or 5 auras I had have led to seizures while I was sleeping.

One thing that is a blesssing for me is that I only have my seizures while I am sleeping. I am thankful for that because if I ever had them while I was awake, I don't think I would have been able to cope with them as well as I have been able to. I have a lot of admiration for the people who have seizures every day all day while they are awake. They are strong.

Having seizures is a scary thing for the people having them and for the people who witness them. 

I still don't know what type of seizures I have or what is causing me to have seizures. My boyfriend and I think I have Nocturnal Seizure Disorder. These are when someone has grand mal seizures only while sleeping and that is exactly what I have and how my seizures are. 

Well that is it. Hope this helped you. Take care.