Amnesia Seizures!

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Hi there, so I should preface everything by saying that I have not yet been diagnosed with epilepsy, and quite honestly, hope that I never will. But what's going on is that I'm having these bizarre seizures, or at least the doctors all think that they're seizures, and since no one can think of any cause, epilepsy is on the table. I'm 30 years old, and female. My "seizures" involve an aura that lasts a few minutes and then intensifies right before it happens. I can't explain the aura. It's just a weird, swimming feeling with a pressure in my head, I guess. And then the seizure hits. I don't shake or anything like that. I simply forget EVERYTHING. I don't know where I am, et cetera. It lasts a minute or two. Sometimes my partner is there and she tells me I get very pale and I ask the same questions over and over (e.g. "Where am I? Where am I?") As it's ending, I get a wave of intense nausea and start retching (but rarely throw up). When it's over, I'm in a daze for hours, and I have a forgetful, "brain-fried" feeling. I've had about 20 of these, starting last July. They come in clusters, about 2 or 3 over a 3 day span, with a month or two in between. I've also started having periodic thrashes in bed, where my whole body jerks. So they did a regular EEG, but since I didn't have a seizure during it, they said it showed nothing. CAT scan, MRA and MRI were all normal. Now they want to either do an 8-hour EEG or preferably, admit me to the hospital for 1-3 days and do a video EEG. Epilepsy is definitely on the table, particularly Transient Epileptic Amnesia. (Do any of you have this?) The problem is this: they'd have to get me during one of my seizure clusters, and they can't really schedule me that quickly. I do NOT want to go to the hospital for three days. Hospitals terrify me so badly. I have a phobia, really. I panic. Also, since most of my seizures happen in the shower, I'm not sure how they'd try to trigger it during an EEG. What I really would like is to skip the EEG stuff altogether and try something else. I have an appt with my neurologist in a few weeks to discuss this, and I'd like to come prepared. I'm wondering if there are any other ways of assessing whether they're seizures, what types of seizures, etc. I also wonder what you think of my requesting that they start me on anti-seizure meds and see whether they stop. Wouldn't that be diagnostic? Thanks for reading all of this, and I really appreciate your responses in advance.

Comments

I have idiopathic epilepsy

Submitted by markedw45 on Wed, 2017-03-29 - 18:08

I have idiopathic epilepsy and something close to this happened recently. I went to bed Sunday night and woke up this morning on bedroom floor then I find out I've been missing for 2 days with no memory of where I've been. I don't drive and none of my friends saw me. I live in the country so only thing I can think of is I had to be in the woods behind my house. But my family searched them.

I'm 31 and I was diagnosed

Submitted by Mr2onep on Fri, 2017-12-08 - 00:38

I'm 31 and I was diagnosed with epilepsy last year. I didn't take it serious because I was unaware that this was even going on. I have lost some of my memories. This is one of the hardest things I had to go thru. I would not wish epilepsy on anyone. I had 6 seizures in one day. My life has been altered. I wouldn't say brain damage at all. My balance is not as sharp as it was before. I make music. And I will continue as long as God let me.

Hi I was diagnosed with TEA

Submitted by Anne from Scotland on Tue, 2018-03-13 - 13:11

Hi I was diagnosed with TEA three years ago after seven years of non-diagnosis. I eventually came across the answer myself online ( via WikiPedia!) and directly contacted the Professor in the UK who effectively 'discovered' it. His name is Dr Adam Zeman and the clinical research is carried out by his team at the University of Exeter. What you describe is exactly what I have - in my mind there is no doubt this is what you have. Put it this way - if you don't then neither do I or the 250 or so people in the UK to have been diagnosed with it - as the 'tick list' of symptoms is pretty much identical. Nobody who doesn't have TEA can describe the 'feeling' that comes with the onset of an attack as you have. Check out Zeman - Transient Epileptic Amnesia and you will find all of the links. I am part of a study programme carried out by his team. ( I live in Scotland).Re witnessing an episode: Scans show nothing. But there is a way to show the medics how you present during an attack - have it filmed. I was having 'waking' seizures. Woke up in bed one morning and had no idea where I was - the year - or what had happened recently etc. My husband ( who obviously must have been in a state of shock himself the first time) had to talk me through everything over and over again. This happened about once a month and I said to my husband that, as he knew I would come to no harm and that I would 'come round' in half an hour or so, to just go straight for the camera and film me. We kept the camera in the bedroom and very soon after he was able to do just that. I was able to give that to Prof Zeman and this has now been used to show others what exactly happens. You should try to do this. The good news is that I was started on the common drug for the condition, which is Lamotrigine ( or Lamictal) and since we got the dosage right I have not had one episode and can remember everything post drug regime. By all accounts not all patients have the same degree of success with memory post-drug treatment. I have had no side effects at all from the drugs. if you want to discuss just let me know. I am thinking of putting together a blog as I feel ( correction - I KNOW) that not enough is being done to help people who have these symptoms and are not being correctly diagnosed.

Hi  I was diagnosed with TEA three years ago after seven years of non-diagnosis. I eventually came across the answer myself online ( via WikiPedia!) and directly contacted the Professor in the UK who effectively 'discovered' it.  His name is Dr Adam Zeman and the clinical research is carried out by his team at the University of Exeter.  What you describe is exactly what I have - in my mind there is no doubt this is what you have.  Put it this way - if you don't then neither do I or the 250 or so people in the UK to have been diagnosed with it - as the 'tick list' of symptoms is pretty much identical.  Nobody who doesn't have TEA can describe the 'feeling' that comes with the onset of an attack as you have.  Check out Zeman - Transient Epileptic Amnesia and you will find all of the links. I am part of a study programme carried out by his team. ( I live in Scotland).Re witnessing an episode:  Scans show nothing. But there is a way to show the medics how you present during an attack - have it filmed.  I was having 'waking' seizures. Woke up in bed one morning and had no idea where I was - the year - or what had happened recently etc.  My husband ( who obviously must have been in a state of shock himself the first time) had to talk me through everything over and over again.  This happened about once a month and I said to my husband that, as he knew I would come to no harm and that I would 'come round' in half an hour or so, to just go straight for the camera and film me.  We kept the camera in the bedroom and very soon after he was able to do just that.  I was able to give that to Prof Zeman and this has now been used to show others what exactly happens.   You should try to do this.  The good news is that I was started on the common drug for the condition, which is Lamotrigine ( or Lamictal) and since we got the dosage right I have not had one episode and can remember everything post drug regime.  By all accounts not all patients have the same degree of success with memory post-drug treatment.  I have had no side effects at all from the drugs.  if you want to discuss just let me know.  I am thinking of putting together a blog as I feel ( correction - I KNOW) that not enough is being done to help people who have these symptoms and are not being correctly diagnosed.

Hi I was diagnosed with TEA three years ago after seven years of non-diagnosis. I eventually came across the answer myself online ( via WikiPedia!) and directly contacted the Professor in the UK who effectively 'discovered' it. His name is Dr Adam Zeman and the clinical research is carried out by his team at the University of Exeter. What you describe is exactly what I have - in my mind there is no doubt this is what you have. Put it this way - if you don't then neither do I or the 250 or so people in the UK to have been diagnosed with it - as the 'tick list' of symptoms is pretty much identical. Nobody who doesn't have TEA can describe the 'feeling' that comes with the onset of an attack as you have. Check out Zeman - Transient Epileptic Amnesia and you will find all of the links. I am part of a study programme carried out by his team. ( I live in Scotland).Re witnessing an episode: Scans show nothing. But there is a way to show the medics how you present during an attack - have it filmed. I was having 'waking' seizures. Woke up in bed one morning and had no idea where I was - the year - or what had happened recently etc. My husband ( who obviously must have been in a state of shock himself the first time) had to talk me through everything over and over again. This happened about once a month and I said to my husband that, as he knew I would come to no harm and that I would 'come round' in half an hour or so, to just go straight for the camera and film me. We kept the camera in the bedroom and very soon after he was able to do just that. I was able to give that to Prof Zeman and this has now been used to show others what exactly happens. You should try to do this. The good news is that I was started on the common drug for the condition, which is Lamotrigine ( or Lamictal) and since we got the dosage right I have not had one episode and can remember everything post drug regime. By all accounts not all patients have the same degree of success with memory post-drug treatment. I have had no side effects at all from the drugs. if you want to discuss just let me know. I am thinking of putting together a blog as I feel ( correction - I KNOW) that not enough is being done to help people who have these symptoms and are not being correctly diagnosed.