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Psychogenic and Epileptic seizures HELP
Tue, 10/29/2013 - 19:34Ok I am so confused! The doctor told me I look like I have epileptic seizures but he's not sure. The Keppra is working and I don't have anything but auras now for almost two weeks! He told me he has no idea so he's going to call it non-epileptic seizures but still give me keppra and all that. WHAT???? Will someone please explain to me what the heck is going on? Two EEGS are normal so what does this mean? I know that I have PTSD but I really don't think I am having psychogenic seizures. I know that can happen but it doesn't make sense for my situation. I have my PTSD issues well controlled with counseling and therapy. I am in the best part of my healing since I started therapy four years ago! I am happy he is keeping me on the keppra but at the same time I don't understand? I feel like he is giving up on me and basically telling me I have no idea why you are having seizures so I'm going to blame it on something else. If it looks like a duck, quacks like a duck isn't it a duck? I've had a friend who had to have five FIVE EEGS and they still don't know what is wrong with him but they said it was epilepsy finally after five of those tests! I don't want anymore of those tests. I feel fried and upset and jittery and not to mention having a seizure freaking hurts! Someone please tell me what to do? I know a seizure is still a seizure but in a way I feel like the doctor is just saying I don't know so here's some epilepsy medication and continue therapy. I wanted a definite answer because I am not sure... I thought it would help me cope better somehow. Am I just being overly emotional? Can anyone just tell me what to do?! I feel like my whole life is just up in the air because no one can give me a diagnosis. Has anyone ever been where I have been? if you have please tell me what you did and if you think I'm just being overly emotional you can tell me I won't get mad. I feel like my mom who doesn't have seizures is just not understanding me she just tells me why are you letting it bother you. I just wanted it in black and white and no one is giving that to me. I felt like if I had it in black and white then I could somehow cope. Is this normal to be so upset about this kind of diagnosis or rather unsure diagnosis?
Thanks for listening
Comments
Re: Psychogenic and Epileptic seizures HELP
Submitted by mereloaded on Thu, 2013-10-31 - 13:47
Re: Psychogenic and Epileptic seizures HELP
Submitted by Kayne57 on Thu, 2013-10-31 - 18:39
I read your post and I had to respond. You just discribed the last 10 years of my son's life. His seizures are very deep in his brain, under the occipital lobe, along the base of his skull. Can you already see the problem with catching seizures with the normal EEG placement?
Also his seizures are simple partial, 20 seconds on and off, he can have hundreds in a day. To faint to show up on a EEG. With the discharge going towards his face, at check level. The only way his seizures would show up is when they spread to his temporal lobe, these are Complex Parital, with loss of awareness.
I know what you are going through, do you have someone to advocate for you? It might help if you do, or maybe someone at a nearby hospital with social services. The reason I suggest this, because it's a lot of work, but I went from doctor to doctor until I found somebody who was opened minded and cared enough to help. But, I made the doctors care, or I moved on! I kept a lot of records so I didn't have to start from square one each time I switched doctors. Get a binder and put your test results in there take this with you to the doctor's office.
As a family we were really beat up on, as parents we were told we caused my son's seizures, investigated for child abuse, as a mother I was accused of having munchausen syndrome, doctors tried to put my son into a psych lockdown unit, he was told he was lying about his seizures, punished at school, accused of just trying to get out of school work, teachers told him he didn't have seizures, I could go on and on, but you get the picture.
I'm glad to tell you that my son had surgery in April and is now completely seizure free! The electrode implant which is done before you go to surgery to map the seizures, gave the doctors a lot more to go on. Also see if you can get to an neurologist who can set you up with the MEG scan. The MEG scan revealed the activity that the EEG couldn't pick up.
I don't know where you are located, or how difficult it might be for you to find another doctor, but you should try, even if you have to travel out of state, your current doctor is telling you he can go no further with the knowledge he has to offer. We are here in Iowa, not really an epilepsy hub of knowledge, but we did find Dr. Mark Granner at the UIHC, University of Iowa Hospitals and Clinics, he listened, researched, and here we are today seizure free.
I wish you the best of luck, if there is anything I can help you with I will.
Take care, Kathy
I read your post and I had to respond. You just discribed the last 10 years of my son's life. His seizures are very deep in his brain, under the occipital lobe, along the base of his skull. Can you already see the problem with catching seizures with the normal EEG placement?
Also his seizures are simple partial, 20 seconds on and off, he can have hundreds in a day. To faint to show up on a EEG. With the discharge going towards his face, at check level. The only way his seizures would show up is when they spread to his temporal lobe, these are Complex Parital, with loss of awareness.
I know what you are going through, do you have someone to advocate for you? It might help if you do, or maybe someone at a nearby hospital with social services. The reason I suggest this, because it's a lot of work, but I went from doctor to doctor until I found somebody who was opened minded and cared enough to help. But, I made the doctors care, or I moved on! I kept a lot of records so I didn't have to start from square one each time I switched doctors. Get a binder and put your test results in there take this with you to the doctor's office.
As a family we were really beat up on, as parents we were told we caused my son's seizures, investigated for child abuse, as a mother I was accused of having munchausen syndrome, doctors tried to put my son into a psych lockdown unit, he was told he was lying about his seizures, punished at school, accused of just trying to get out of school work, teachers told him he didn't have seizures, I could go on and on, but you get the picture.
I'm glad to tell you that my son had surgery in April and is now completely seizure free! The electrode implant which is done before you go to surgery to map the seizures, gave the doctors a lot more to go on. Also see if you can get to an neurologist who can set you up with the MEG scan. The MEG scan revealed the activity that the EEG couldn't pick up.
I don't know where you are located, or how difficult it might be for you to find another doctor, but you should try, even if you have to travel out of state, your current doctor is telling you he can go no further with the knowledge he has to offer. We are here in Iowa, not really an epilepsy hub of knowledge, but we did find Dr. Mark Granner at the UIHC, University of Iowa Hospitals and Clinics, he listened, researched, and here we are today seizure free.
I wish you the best of luck, if there is anything I can help you with I will.
Take care, Kathy
Re: Psychogenic and Epileptic seizures HELP
Submitted by tcameron on Wed, 2013-10-30 - 19:33
Some patients have both conditions. Some seizures are caused by epileptic activity, others aren't. Unfortunately, its extremely complex, since most people with epilepsy have no known cause. They can have normal EEGs, and other tests.
I'm not a medical professional, but have had seizures for over 40 years and am the co-facilitator to my local epilepsy support group. PTSD can cause non-epileptic or psychogenic seizures. They're still seizures, but different. You're fortunate your doctor is watching over you and keeping you on AEDs, at least for a while. If your diagnosis is only psychogenic seizures, you might get weaned off the AEDs, and get your driver's license back sooner. No matter what your diagnosis: DON'T STOP YOUR AEDs cold-turkey. It could cause your body to go into Status Epilepticus; a continuous non-stop seizure which can be fatal.
Take care of yourself,
T
Some patients have both conditions. Some seizures are caused by epileptic activity, others aren't. Unfortunately, its extremely complex, since most people with epilepsy have no known cause. They can have normal EEGs, and other tests.
I'm not a medical professional, but have had seizures for over 40 years and am the co-facilitator to my local epilepsy support group. PTSD can cause non-epileptic or psychogenic seizures. They're still seizures, but different. You're fortunate your doctor is watching over you and keeping you on AEDs, at least for a while. If your diagnosis is only psychogenic seizures, you might get weaned off the AEDs, and get your driver's license back sooner. No matter what your diagnosis: DON'T STOP YOUR AEDs cold-turkey. It could cause your body to go into Status Epilepticus; a continuous non-stop seizure which can be fatal.
Take care of yourself,
T