Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
hi
my daughter suddenly started getting grand mal seizures in jan this year. she was hospitalised in february, april, june, beginning of august and has just come out of hosp two days ago.
prior to hospital she was getting anything between 20 and 50 seizures a day. she loses consciousness with every seizure, even the absences and can remember nothing afterwards. if she is not already sitting, she will fall to the floor at each onset of a seizure. some of her seizures are extremely stiff and jerky, with fingers and toes claw like, eyes roll back and she bites her tongue. also, she occasionally urinates during a seizure.
there have been 2 eeg's, one for about 40 mins, which showed no signs of epilepsy, although she had 3 mild fits during the test. the next eeg was on the ward last week and although she was wired up for a total of 6 hours, the docs only looked at the first disc which was only 1.5 hours long and the big seizures were near the end of the second disc. i asked that they check that one out and they denied that there was a second. she has now been dx with non epileptic seizures and sent home. i asked 'at what point do i call an ambulance?" and the neurologist said, "you dont!" i replied, "wow! so she can have 100 seizures a day and we still dont call an ambulance?" "No! she doesnt need one with these type of seizures." she offered her councelling with a neuropsychiatrist!!! i'm raging!
i am totally bewildered.
please someone tell me what to do or where to go next. i believe my daughter's seizures are dangerous, especially as she has arrested once and stopped breathing a few times. someone has to be with her 24/7 in case she hurts herself as she falls and she is exhausted most of the time because of the amount of seizures she has and is physically unable to walk much of the day.
she was on 800mg epilem twice a day and 500mg kepra twice a day. the epilem is being reduced and by 26 october removed. i am happy with that, but the seizures continue.
thank you for listening and look forward to reading your comments. any advice, ideas, suggestions would be much appreciated.
god bless xx
my daughter suddenly started getting grand mal seizures in jan this year. she was hospitalised in february, april, june, beginning of august and has just come out of hosp two days ago.
prior to hospital she was getting anything between 20 and 50 seizures a day. she loses consciousness with every seizure, even the absences and can remember nothing afterwards. if she is not already sitting, she will fall to the floor at each onset of a seizure. some of her seizures are extremely stiff and jerky, with fingers and toes claw like, eyes roll back and she bites her tongue. also, she occasionally urinates during a seizure.
there have been 2 eeg's, one for about 40 mins, which showed no signs of epilepsy, although she had 3 mild fits during the test. the next eeg was on the ward last week and although she was wired up for a total of 6 hours, the docs only looked at the first disc which was only 1.5 hours long and the big seizures were near the end of the second disc. i asked that they check that one out and they denied that there was a second. she has now been dx with non epileptic seizures and sent home. i asked 'at what point do i call an ambulance?" and the neurologist said, "you dont!" i replied, "wow! so she can have 100 seizures a day and we still dont call an ambulance?" "No! she doesnt need one with these type of seizures." she offered her councelling with a neuropsychiatrist!!! i'm raging!
i am totally bewildered.
please someone tell me what to do or where to go next. i believe my daughter's seizures are dangerous, especially as she has arrested once and stopped breathing a few times. someone has to be with her 24/7 in case she hurts herself as she falls and she is exhausted most of the time because of the amount of seizures she has and is physically unable to walk much of the day.
she was on 800mg epilem twice a day and 500mg kepra twice a day. the epilem is being reduced and by 26 october removed. i am happy with that, but the seizures continue.
thank you for listening and look forward to reading your comments. any advice, ideas, suggestions would be much appreciated.
god bless xx
To be honest, I don't fully understand non-epileptic seizures. However, obviously, something is happening and needs to be addressed. What you are describing sounds like a full blown seizure and she needs the right medications to help her. It's often a trial and error thing. It was with me and I had to go to a different doctor which finally helped. Perhaps that will with you too.
I agree be very careful with Essential Oils, if you are not accustomed to using them they can become very toxic. I'm an herbalist and I always stay on the side of caution.
1st, the doc that sadi don't call an ambulance is right, sorry to say. There is nothing that ER docs can do for your daughter medically. I would know, I've been told that at 3 hospitals. They did nothing for me, taking her there with NES is a bad idea. Now if she's physically hurt from the siezure, that's a different story, get her treated for that.
Nothing will show up on any EEGs or tests you do. I had 3 EEGs done, including a a 24 hour EEg done where I had 4 severe (hr long or more) siezures and nothing showed up on the recordings. I've had a Cat scan of my brain, and that came back completely normal. Medically speaking, nothing appears wrong.
Next, my siezures are directly related to stress. Take a look at your daughter's life, see if there are any major stressors that are going on or happened right around when her siezures started. Being 17, almost 18 when mine started, I'll bet she has some of the same stressors as me. That may not be the case, but if it is, I would look into Cognative Behavorial Therapy (CBT), its designed to race our ceiling for handling stress so that seizures are less frequent. It will also help deal with any pent up anxiety, which are also a possible cause/catalyst for these episodes. I have gotten some success out of CBT. My siezures were never more than 1 or (rarely) 2 a day, but they could last hours on end. Luckily, I haven't had any long ones in a couple months. I'm not saying stress is the route cause, but it will make it all that much worse, so keep stress levels to a minimum.
Next, take a look at her sleep habits, sleep lowers the stress ceiling, and is flat out my biggest trigger. When I don't sleep, which is quite common, a siezure is basically inevitable. I'm not guaranteeing anything, but from my experiences when we tackled my stress ceiling w/ CBT, made my life stress-free as possible, and we're working on diagnosing my issues sleeping, siezure activity has gone down.
I hope this helps a little. If you have more questions or want an opinion, you can always ask me.
I hope your daughter recovers like I have begun to,
Nick
Wow, I'm sorry for you and your daughter. My personal feeling about some doctors is that if they are not willing to listen to a parent who is with their child 24/7 then get another doctor! Where do you live? Even though your daughter is on some good meds they aren't doing the job. It's possible to stop breathing, and it's also possible to lose consciousness and come back but generally when someone loses consciousness they need to go to the hospital to find out why. Every seizure can be different and effect a different area of the brain. I asked where you live because I live in NY and NYU has a Comprehensive Epilepsy Center that is supposed to be the best in the country. They have great doctors there, do research and will work until they find out what is wrong. My suggestion to look them up online and give them a call and see what they suggest. I wouldn't be so quick to take my daughter off any meds if she is still having a problem that's for sure especially if I don't feel a doctor is hearing my voice. You know your daughter, be strong and stand up for her...we're here for you! God bless and our prayers are here for you too!
In my past, I had these, but nowhere near in length or severity of your daughters. I was on Dilantin, it did not help. Then switched to Keppra, which did not help. Once they did the video EEG and saw nothing, they took me off of the medications. The seizures continued (I had an underlying condition causing them for me, so you see there very well may be something different going on) until I had my other brain issue taken care of, so the seizures that I have now ARE actually epileptic.
Now, here is my thought...if she is on Keppra and they are saying they are NES, Keppra is specially for seizure disorders. NES are usually treated with more like therapy, and medications that can control convulsions but also depression? That is what I understood? I never went far enough through the process to understand it all...so anyone, please correct me!!
Thought I'd throw my two cents in!
Heather
I don't get to go to hospital when I have a seizure. I think it's because most of the time it can be controlled at home. I have partial seizures where I don't jerk I normally know when it's going to happen and lie down, sleep, wake up and remember nothing. I think they would hospitilize her if she was a danger to herself or others. If you know how to handle them yourself then it's unlikley they'll call the ambulance. It does sound like she has epilepsy but maybe it's a reaction to a new type of drug.