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Looking for some insite new fears

Now that I have finaly found a Dr. who could tell me after 17 years of stearing off into space and a few other symtoms that I am having seizures, I wish I had keept my mouth shut. I have been on the Topamax for almost three months now and feel a little better, but am getting scared. now other things are happening that i cannot explain.Hoping sombody can give me some insite.about two weeks ago I started having these eppisodes where i get this sick feeling then i start to shake and get scared and cry I feel like I can't breathe and I (it's hard to explain) Feel like I don't know where I am or what is going on like I (god I wish I could explain it ). this has been happening 2 to 4 times a day about 3 to 4 times a week for the past two weeks. and then on morning my husband called me from work and asked me what the hell I was doing in bed that night I was like what are you talking about. He said I sat up in bed and staired off for a few seconds with a look on my face like i had just seen a gost then laid back down and my body was shaking and i was clicking my teeth together, he said he tried to wake me up but couldn't and then after about a minute or so i just stopped I do know that that morning my mouth was sore and i had noticed that I bit the inside of my cheeke but untill he had told me what i was doing I thought nothing about it. I am getting very scared, I did tell my family Dr. about the daily episodes and he has put me on Klonipin but i have yet to start taking it i fear that now i will just be put on all these drugs and that bothers me. Do any of these symptoms mean anything to anybody? please help I know I need to talk to my nero. about this but it hekps to talk to others who deal with seizures and understand what I am feeling.


RE: Looking for some insite new fears

I definitely understand what you are going through. I have seizures myself. I took Topamax once myself, and I had to be taken off of it soon after because I had a bad reaction to it. Is your doctor taking you off of Topamax, or are they having you take that along with the Klonipin? The episodes that you mentioned when you would shake and then get scared and cry and you would have a sick feeling before that, it could be caused by the Topamax. I can't say for sure, but it is, you are definitely not the only one that has had a bad reaction. I definitely recommend that you talk to a neurologist if you have one, and have your husband go with you. Another person's account of these episodes that you have been having will make it easier for them to treat you. And also, tell them about any side affects you have been having with the Topamax, no matter how insignificant they seem. By the way, have you been having any problems with short term memory loss. If so, contact your doctor/neurologist immediately. I had that happen to me when I was on Topamax, and it is permanent. I don't want to scare you even more, but I know that it is always best to be straight forward and truthful. I can't stress enough that you find a neurologist that will be able to give you definitive answers and work with you to treat your epilepsy. And as my Grandmother always tells me, always be persistant, and ask any questions you have, even if they sound silly. Also tell them about all of your concerns no matter how small. Another thing is always, always pay attention to how your body is reacting to any medication you are on, seizure medication or otherwise. And if something starts happening that you might even slightly suspect it might be caused by medication, talk to your doctor right away. Never let it go, because you never know what it could be. And like I said, always be persistant. And even if you have to go to different doctors before you find the one that is right for you, then so be it. It will be worth it for you in the long run. And if you ever feel you need a second opinion, go for it, don't hesitate. I wish you the best of luck. Keep me posted as to how you are doing. I am sure that you and I can relate to each other.Renee

RE: Looking for some insite new fears

You're getting good advice about working closely with the neurologist to find the right medication (or other treatment) for you. Between appointments, I hope you'll find helpful information at!

RE: Looking for some insite new fears

It sounds like you're having complex partial seizures in the night. I had nocturnal complex p.s. for years. (We thought that they were panic attacks, because I only knew the pounding fear when I was awake when they happened.) It wasn't until my nocturnal c.p.s. became generalized one night, after 6 years, that we realized that I had epilepsy.Usually only minutes after turning out the light at night, I would abrubtly sit up in bed and say, "Shhhh....shhhh...oh my God....oh my God...". I'd sound panicked, my eyes open and face looking scared. After a minute, I'd fall back into bed and asleep. I'd have no memory of the event in the morning, but I'd always be more tired than usual. After a while, I noticed that I got these "night panics" when I was under a lot of stress or pre-menstrual. Looking back, that makes sense. Because I was really stressed for a couple of years (when this first started happening, at age 20), and I was constantly having seizures. I'd have a seizure, panic...and have a panic attack, and then another seizure. It was a vicious cycle. Of course, I only know this now. At the time, I thought that I was having these panic attacks for no reason all the time. This went on for a couple of years. I saw a psychologist for a few years, and learned to accept my panic attacks, and that's when I got into the pattern of my night panics (nocturnal seizures).I hope this makes some sense to you. I do understand what you're going through. You need to see the neurologist and tell him/her about your episodes. Chances are, you'll have to switch meds. Good luck to you, keep us posted!Heather

RE: Looking for some insite new fears

Thank you all for you input and information in the mater i have brought forth. it has been very helpfull.I am going to see my neurologist tomorrow and hopin he will do something to help me out here., I also have been given the name of anothe neurologist who come highly recomended in my area and have mad an appt. to see him for a second opinion. so maybe I can at least find out if there really is a proble because therer is so much confussion as to what it really happening to me me right now and the Dr. I am seeing now really doesn't seem to want to look more into what is going on. So I will keep you all posted thanks again,Cindy

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