Tag Archives: temporal lobe

Made It Through the Night…PLUS Temporal Lobe Epilepsy versus Schizophrenia

This flower, whose name, Self-Heal or Heal-All, says everything, and it is not insignificant that this was the first wildflower that started me on my Field Botany path, and was also the agent of my natural history conversion experience:

Self-Heal or Heal-all (My first wild flower and the one that changed everything)
Self-Heal or Heal-all (My first wild flower and the one that changed everything)

 

Last night was a very difficult night, as you know.

I did not believe the nurse when she told me this morning that E–, who was an animal lover, would never have killed herself, leaving her beloved parrots to fend for themselves. She said it simply went against the grain of most animal people to kill themselves while their “children” still needed them. It turned out, though it took me a while to “grok” this, that E– apparently died of a combination of diabetes type 1 and asthma. The details are unclear and unnecessary but I was assured by both nurse and the building social worker that it was not suicide. Thank god.

However, early this morning things were not well, and I wonder if what  happened later on was not at work last night as well. Let me explain:

I had an appointment to see my psychiatrist, Dr Angela, at 10 a.m. and as usual I got up to drive myself there, a short distance over the bridge to the next town, maybe 6 miles away tops. It is a trip I have done dozens and dozens of times, perhaps hundreds now.

This time, however, things were different. Halfway there, on a stretch of road — I’m talking back roads not highway — a road that I know like the palm of my  hand, I was suddenly overcome by a feeling, an intense almost nauseating feeling of “jamais vu.” This is the opposite of “deja vu” — that sense that things you have never done have happened before. Jamais vu is the sense that while you are in familiar places or with familiar people, they seem strange or new or utterly unfamiliar. I have had deja vu many times, as have a lot of people, and I think it is a fairly common experience to feel as if something has “happened before” even though it is really a new experience.

 

But never before, at least not since I was ill, severely and neurologically ill, with Lyme disease, have I felt this intense feeling of non-familiarity in a situation that I know I knew very well. I was terrified, if briefly. I was not at all certain where I was. I mean, I kept driving, because my instincts told me to keep going, that my hands would make the proper turns. But my conscious brain had no recognition of where I was and no conscious notion that wherever I was I had ever been before. It was, as I said, terrifying and very, very strange.

Luckily, within minutes things had resolved enough so I knew that I had arrived at the Whole Foods parking lot, which my doctor’s office and the doctors’ complex shares. I still felt very weird. I felt in fact that I was not completely embodied, even though I carried a heavy enough bag to embody or burden down anyone.

When I got to Dr Angela’s office, the first thing i told her was that something was wrong. Yes, I had sent her the email I mentioned here yesterday, but I did not mean that. I meant the foreign feeling, the jamais vu intensity, which though faded still scared me. Thinking back, when i was so ill with Lyme it was actually deja vu, in an incredibly brilliant and vivid form, that afflicted me rather than the alienating jamais vu, but I knew that both deja and jamais vu can be commonly a symptom of either an aura or a seizure itself. Especially the much rarer experience of jamais vu.

I have had several different kinds of seizures in my life, and I have just been taken off Topamax, an anti epilepsy drug I have taken for years. I did this in preparation for a neuro-ophthalmology appointment in October (not sure why I thought it had to be stopped). So i have and had some sense that it was the d/c of this anti-convulsant that was the proximate cause if not the absolute cause for my symptoms.

But I was terrified that this jamais vu would generalize into a full-blown seizure, which I couldn’t bear the thought of. Dr Angela was quite responsive and suggested that I 1) take an immediate Ativan, .5mg as that is reasonably effective as an anticonvulsant, though better IV than oral and 2) when we found that I had stashed 100mg of Topamax in my pill compact, she had me take that as well, figuring I would get back to my usual 200-300mg within a week or two.

The appointment went — well, I don’t remember much about it, frankly. All I recall is leaving, promising to get a cup of coffee before I drove home, then realizing once I got to the parking lot that there was no way I could drive, coffee or not. I felt simply too weird. And weirded out. Too scared of having a full blown seizure, whether temporal lobe or otherwise to get in the car.

To my great luck, when I contacted my case manager, Rebecca, who works in next town over, she was immediately available and came to pick me up. That was a huge relief. I didn’t even have to wait more than 5 minutes. More, the Whole Foods grocery store people didn’t bat an eyelash when I asked if I could leave my car in the lot overnight.

Later on, Tim went and got my car for me, so I didn’t even have to do that. I simply went home and took a  nap. When I got up I felt at least ten times better. Not so weird, not so seizure-y. Less scared, and finally able to be convinced that the huge balloon of misery and terror from last night was just that, a balloon, a mistaken notion…a fiction. I was wrong, that was all. Even though the conviction and certainty felt as real as anything, they were only FEELINGS, and as so many people including my brother assured me, those feelings would change if I hung in there.

Lo and they did change and have changed. Thank heavens.

 

Now it occurs to me that perhaps even that huge balloon of certainty may have been seizure-related. I don’t have any real reason to think otherwise. I know, I know, my shrink brother has his theories. But I felt so UN-conflicted about it, so hugely convinced, that the explanation of seizure activity, comparable to the certainty that I “have never been here before” of jamais vu even though I knew I had, and also knew, as I said, that I had not caused the putative suicide…this explanation simply makes more sense and feels  “more right” to me. After all, why would I suddenly feel like I did anything to E— who was not all that important to me, or no more than anyone else in the building really. It felt morever just so hugely compelling, in precisely the same way that impending doom feeling of a temporal lobe seizure feels — it isn’t real but it is unshakable, utterly unshakable.

I don’t know, of course. The shrinks — and I include Dr Angela and my brother — would like to make it all about me, all about my conflicts and my mental illness however they want to define that. But I wonder now how much my ongoing (but unofficially diagnosed, that is, only by psychiatrists) TLE has affected me all along. I wrote about this conflict, this contamination of any schizophrenia diagnosis with temporal lobe epilepsy, and months ago. It seems strange that so many have “both”…|

Nevertheless, I have never had my seizure feelings checked out, largely because I do not want anyone curtailing my voluntary driving. And I don’t like doctors having that power over me. I also do not trust them to take me seriously, as a NON-psychiatric patient. I do take AEDs to prevent olfactory hallucinations, (NOT as mood stabilizers) and such, but why see a neurologist who might tell me I can’t drive a car for any length of time when I have never even had a fender bender from this? Or who might, and this would feel just as bad, tell me it is “all in my mind” not in my brain…!