Undiagnosed and searching

[sojourner]

I was searching the Internet for “amnesia” and found a reference on this forum to Transient Epileptic Amnesia (TEA). That led me to search for articles on TEA, and I discovered a lot of similarities to what I have experienced over the past 7 years. I would love to talk to anyone who knows anything about this type of epilepsy, or anyone who can relate to what I experience.

I have recorded nine episodes when my mind did funny things. A very brief episode happened a couple of days ago when I was doing my exercises. I looked at the instructions and could remember doing exercise 3, but not 4 or 5, which I was pretty sure I had just done (I had, the memory came back in a couple of minutes). A much longer episode happened in 2005, when for about an hour I forgot how to read, forgot my age and address, and felt like my memories were blocked off behind a brick wall. The other episodes varied in length and in what they were like. The weird thing is that when I have these episodes I “remember not remembering” which is characteristic of TEA. Other characteristics of TEA are that it happens to people in their 60s, which I am, and that people who have it forget autobiographical memories. I frequently find that when my husband mentions some event in our shared past I say “I don’t remember that”.

In 2005 I had an EEG that showed some abnormality that didn’t look like epilepsy. A CT Scan ruled out brain tumor and lesions. The neurologist I consulted had not heard of amnesia like mine and thought it might be related to mini-strokes, but he didn’t really know. So here I am, undiagnosed, but hoping that some of you on the forum might have similar experiences or know more about TEA.

 

[Rae1889]

Welcome.
If it helps a bit too, search jamais vu.

Have you been tested for early onset Alzheimer's or dementia? I know that might be a tough thing to swallow, but its more common given your age and the onset of the symptoms.

 

[Endless]

Hello, Sojourner,

Welcome to CWE!

I understand how frustrating and scary it can be while trying to find a correct diagnosis. I went through 4 doctors before I found out what was going on with me (temporal lobe epilepsy). Not knowing was incredibly hard.

I don't have TEA and am not familiar with it. But I may have some general thoughts. If you suspect epilepsy, please take a read through the forum. You may have other symptoms, as well as the amnesia, and are not aware of it.

There are lots of things that happen to people and they don't know they are seizures. Especially with Temporal Lobe Epilepsy. You may have several types of seizures going on. What you are experiencing may be Jaimas Vu, which is much more common than TEA. It's a type of temporal lobe seizure. Jamais Vu is not recognizing something that should be familiar to you. When this happens to me I always remember not remembering. You could also be having complex partial seizures, where you lose awareness and memory for what you are doing for a few minutes. Seizures can, over time, affect your long term memory. I guess the point is that there are lots of things that fit your symptoms and an epi needs to take a look at you to really figure out what is going on.

Your native EEG doesn't mean much. Both frontal and temporal lobe seizures can be happening too deep in the brain to be picked up. How often do your episodes happen? Your doc may want to wire you up to do a week-long ambulatory eeg to see if they can catch a seizure in progress.

See if your neurologist can refer you to an epi (seizure specialist). The epi can evaluate you fully.

Please hang in there.

 

[epileric]

Welcome sojourner

I really know nothing of TEA but what you described sounds like how my memory acts sometimes, especially when you mentioned that you "remember not remembering". I do that either hours to days after a larger one of my seizures.

 

[sojourner]

Thanks for the welcome! Rae, my doctors have suggested Alzheimers, but each time they give me the mini-mental status exam I do fine, so that diagnosis doesn't seem likely. It scares me to think it might be Alzheimers, but then I'm scared to think it might be epilepsy too!

Endless, I think you're right that if I do have epilepsy there are several types of seizures going on. I've been reading around the forum and one of my episodes does sound like jamais vu, and another like Alice in Wonderland. I also see from the forum that migraines can be linked to epilepsy. For many years I used to have migraines frequently, and had another one a few weeks ago for the first time in years. My episodes are infrequent - like months apart, so I don't know if an EEG would catch one.

Epileric, it's good to know that someone understands when I say I "remember not remembering". People I have mentioned it to (very few) just look at me kind of weird. It's good to find people who don't look at me that way!

 

[RobinN]

Welcome sojourner -
My daughter had an experience with amnesia. Hers was a different type than what you have experience. Now I think it was in connection with the hypoglycemia that she has been diagnosed with. There appears to be a connection between low blood sugar and the portion of the brain that controls memory. I am sure there are other reasons too, butfor us this has resolved itself and my daughter is also seizure free for 6 months now... and med free.

Just something to consider.

 

[Endless]

Sojourner,

One way to identify what exactly is going on is a PET scan. It measures glucose uptake in the brain. There is a certain pattern to the uptake for Alzheimers. It would also show if there are seizures coming from any particular place. (Even if a seizure isn't happening at the time) It may be hard to get the scan pre-approved by your insurance, but it may answer a lot of questions.

 

[sojourner]

Thanks, Endless. That is the kind of practical suggestion I was hoping for from you knowledgeable people. I'm in Canada, so getting a PET scan isn't so much a question of insurance as of availability. I'll be sure to discuss it with my doctor.

 

[sojourner]

Hi Robin, I think in my reading on the forum that your daughter had amnesia for a long time - months? That's great to hear that she is seizure-free and med-free.

 

[Frink]

Hi Sojourner,
What you describe sounds a lot like my Temporal Lobe Seizures and the side effects of the seizures.

 

[gr630_1969]

I am a 65-year-old man who has had Transient Epileptic Amnesia (TEA) since June 2009. Since then, I have suffered 29 documented seizures. Seizure symptoms are loss of short term memory upon awakening in the morning. With the help of calendars, daily do-to lists and conversation with my wife, the memories gradually return over 1-3 hours. However, I have suffered biographical memory losses, meaning I do not remember random places and events from my life.

My neurologist has had only one other Transient Epileptic Amnesia patient in 18 years of practice.

I am currently treated with gabapentine and oxcarbazepine, by that may change in the near future, because my seizures are coming more often.

Do not confuse Transient Epileptic Amnesia with Transient Global Amnesia. They are entirely different.

- GR630-1969

 

[sojourner]

Thanks to gr630_1969

Hi gr630_1969,
I haven't been on this forum for a long time and was surprised when I was notified there was a reply to my post. I'm pleased to meet someone who has TEA - though I'm sorry you have it. How did you come to be diagnosed? It sounds like it is much more frequent with you than with me.

I only had one episode in 2011/12. Does this sound anything like what you experience: I was pruning branches and continued doing the practical things, but my mind was trying to remember some group of people - never did figure out who. I forgot the date, thought it was 2010 when it was 2012. When I asked my husband to quiz me, I was also missing dates, times, and ages for our children & grands. When I was putting out lunch I couldn't remember if my husband needed pills with that meal, and couldn't figure out a strategy to help me make the decision. The episode lasted 2 hours and afterwards my memories came back. I retained the memory of what happened during the episode, and wrote it down afterwards.

From what I have read this is more like TEA than TGA, though I haven't pursued getting a diagnosis. I'd be interested to hear what you think, as the doctors I consulted in the past were baffled.