I've been doing a lot of research. From what I'm finding, these inherited nocturnal seizures - if you have them for several years only at night, the odds are minute they will cross over to the daytime. I did make an appt with a woman dr who is an epilepsy specialist as well as specializing in women's health..seems like a good fit for me.
What you all need to understand is that I'm being told either my mother or my father had this and neither of them were ever on anything, and mom lived to 80 and dad to 84. This guy also had me on an MS drug that can cause seizures. I am not opposed to taking a drug..I am opposed to taking anything that has a side effect of depression while I am so newly in the grieving process and already sad, or will affect my memory or thinking..If I have had this my entire life (since it's hereditary), we'll see. Like I said, one little test, no blood work and he's got me branded. NOBODY has ever seen me have a seizure. The most that anyone saw was (I was on that MS drug) when I was laying in bed, drifting off to sleep and my arm raised and dropped..my husband was like, "What the heck was that?" I figured it was an MS spasm. That was back in early 2008. But, I've always jolted, like dreaming I'm falling..not every night, but frequently, as far back as i can remember.View Thread
I have heard of sudep...ya know what? I'd rather live to 70 and be able to function than 80 and be crippled by the drugs.. I've been researching, and what I actually have are myoclonic. I jerk, or my shoulder will shrug and it wakes me up and that's it.The extreme reaction I had to trileptal, I found out, lets me out of a lot of the meds. I'm going to call the epilepsy center tomorrow and make an appt. This guy just did a 20 min. eeg (as I fell asleep), did not do a 24 hour eeg, or sleep eeg..nada..nothing. I'm really not happy with him.View Thread
Thanks all. I think I need to find a new neuro. His response was, Ok let's do dilantin..what about medication sensitivities does he not understand. As far as vitamin D..I run low having MS and the level has not been checked in quite a while, so I'll be doing that in 2 weeks. I do not have depression, other than normal grieving. My husband passed away 2 months ago. Every medication has the side effect of interfering with your thinking..the doc told me there is nothing he can give me that is NOT going to cause problems. That's encouraging. I was told there just may not be anything out there that I can take, or at the most, they will have to try to dose me as if I'm under 12. The whole thing is making me angry. He said if I hadn't have mentioned a strange night time occurrence, he would never have known. According to what he described, just about everyone I know has these night time seizures. I am very angry. I am alone. If I take a med that causes problems, then I'm in deep trouble. My entire family is totally against me taking any drugs, including my chiropractor son-in-law. To try drugs when I am so newly widowed, they all feel, is bound to feel because of being complicated by grieving.View Thread
I am waiting to hear from the dr. The problem is I have extreme medication sensitivities. About 25% of women have it. I may not be able to tolerate any type of seizure drug. He told me the type of epilepsy I have is inherited and I can remember my father yelling in his sleep, etc.Neither of my parents ever took a seizure drug. I feel like I am getting into a quality of life issue, here. I am going to be 57 tomorrow and do not want to take anything that is going to make it so I can not function. What good is it? I have never had a seizure during the day.View Thread
The pharmacy told me to stop immediately. My arms were numb, and so were my thighs and my chest felt strange. I have not heard back from the dr. yet. I did some digging and found out trileptal and tegretol are the worst drugs to give an MS patient because it can cause a pseudo exacerbation. It has been nearly a week since I took that one dose and I still don't feel well.View Thread
I was recently diagnosed with epilepsy at 56 years old. I also have MS and lupus, and diabetes. I was told the form of seizures I have are heridtary..only while I sleep and I don't lose consciousness...frontal lobe nocturnal..I just started trileptal. I took 150 mg last night. I woke up having anxiety attacks - I think - my arms were tingling, I felt weird..I expected the sleepiness, but not the ringing of the ears or the nonstop headache. I asked him why I needed this drug when I've apparently had this my entire life. I am not going to be able to live like this..no quality of life..you aren't supposed to exercise too much. What is the point? It was only discovered quite by accident that I was having these nighttime seizures. I also have extreme medication sensitivities. I am frustrated and angry. I will go ahead and take another pill tonight, but if it's as bad as it was today? He's getting a phone call and I'm not taking it. On top of everything else, my husband passed away 2 months ago. Any suggestions?View Thread