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…!

12 thoughts on “Made It Through the Night…PLUS Temporal Lobe Epilepsy versus Schizophrenia”

  1. Dear Alaina,

    Unless someone is truly abusive to others i make it a practice to allow everyone their say here, whatever their say is. I think all grown-ups know how to stop reading when something is too much for them. And it is not your fault that your life was so full of terrible traumas. So, as far as i am concerned you have every right to write here and are more than welcome to write what you wish here. I think it is all entirely appropriate. If someone finds reading it difficult, they can choose not to continue. I dont think that is so hard to do and it is certainly a fairer thing than to expect your posts to be deleted! No.

    As for what happened to you…words will never suffice for me to express my horror and sympathy but i can certainly say that i can see why Complex PTSD would develop under such circumstance, in anyone prone to PTSD. The wonder is why it doesnt happen to everyone subjected to such treatment. i do think that there must be a certain genetic predisposition to trauma reactivity. And perhaps, since multiple personalities are so rare, when someone is treated as you were it actually would happen to everyone, Complex PTSD, that is. i dunno…

    All i can say is, NOBODY deserves to be treated like that, no child, no adult, and it just horrifies me. I can only imagine what that Juicy Fruit memory is like…but i can imagine it. Not exactly of course, but i know what flashback sort of memories are like and how painful and vivid they can be. A smell, a mere thought, can trigger a whole cascade that feels unshakably like the past.

    I would love to discuss the beta blocker thing sometime. Did they work for you at all? I believe beta blocker drugs might have actually prevented PTSD from developing early on in my hospitalizations. Purely by accident. But once i was off them it came on with a vengeance.

    I cannot say for certain of course, but i took inderal and attenolol for migraine prevention for 20 years or more. I was badly treated for much of that time at least at certain hospitals yet i took it without residual trauma reaction. Then in the 2000s when i was off beta blockers suddenly, maybe, the PTSD started…

    Not sure if this is the reason or the treatment suddenly became more brutal or i suddenly reacted differently. It would be interesting to know. But it is difficult to figure it out and i frankly wonder whether i would have resisted brutality sooner, not accepted it as SOP, if it had been traumatic early on, rather than simply treatment as usual that i thought was acceptable…

    PTSD as something good? No, not really, but maybe i would not have let them continue to brutalize me, and maybe i would have recognized the other traumas in my childhood and adult life had i been made aware of it rather than denying it..

    Does that make sense? Anyhow, i hate the fact that just writing about this makes my heart race and my body break into a sweat, esp as i am 61 and only just now dealing with it. I ought to have started years earlier, not let it go this long…there was no excuse except that i did not understand my history of abuse and trauma as well as the fact that i acceped the hospital abuse as SOP because they told me it was normal treatment and care…What assholes!

  2. Dreaming while awake… that would have to be very disorienting. Years ago I was put on a beta blocker for a heart arrhythmia that gave me such vivid dreams, I thought they were real. Even though I knew they were dreams, I still thought they were real events. I finally got it through my head that they weren’t real, when I put one of my vivid dreams to the test. I dreamed that a house I liked had a For Sale sign in front of it. After I woke up, I drove to this house, which was about 90 miles away, and saw that it was NOT for sale. Then I told my doctor about this weird side effect and he changed my prescription, which made the vivid dreams stop. I wish you could get rid of your waking dreams so easily.

    During the two years when I was hearing voices as a teenager, I noticed that my dreams were like normal, ordinary life — while my actual waking life had become a terrible nightmare. After the voices stopped and my waking life was once again normal and ordinary, my dreams then became surreal and “crazy,” the way they had been before the voices.

    This morning I woke up feeling like nothing is real. I try not to stress about it, but I really hate this feeling. My therapist says it is caused by my Complex PTSD. I suppose he is right.

    The first time I remember ever having this awful unreal feeling was during one of my earliest childhood traumas. My dad who, as I said, had multiple personalities, was ordinarily a caring, protective father. But one of his alternate personalities was evil. Homicidal. One day I was riding in the car with my dad as he was on his way to get my mother at work. We lived in Oakland, California, and my mother worked as a clerk-typist in San Francisco. Dad stopped the car on the big suspension bridge that goes over the bay between Oakland and San Francisco. He told me to look out the window at the water. Then he told me that he was going to throw me off the bridge. He pulled me out of the car and carried me over to the railing, chanting in an eerie sing-song voice about what he was going to do, telling me that I would fall down, down, down into the water and die.

    I was a toddler and I did not know what it meant to die. But I knew that I did not want to be thrown off the bridge! I remember how small and helpless I felt. I knew I could not stop him.

    That was when I went completely numb. It was like I was already dead. Nothing was real anymore, the bridge was not real, the ocean was not real, my dad was not real… my dad had already killed me.

    Then my dad seemed to change his mind at the last minute. He pulled me back from the railing and put me back in the car and drove on to my mother’s work place like nothing had happened. I had never been to my mother’s tall office building before. She looked so pretty with her bright red lipstick. She showed me off to her boss and coworkers and then she bought me a pack of Wrigley’s Juicy Fruit gum from a vending machine. I chewed the gum on the way back home, as we went back over the bridge.

    I have never been able to go over a big bridge without remembering. The smell and taste of Wrigley’s Juicy Fruit, or seeing a commercial for that gum, or standing in line at a store and seeing that gum for sale, makes me flash back. And even today, more than 50 years later, I still fight the feeling that I am not-quite-alive.

    Sorry, Pam… if you think this is too much of a downer for people to read, feel free to delete it. The happy ending part of this story is that I did not get thrown off the bridge. And my sister did not get thrown off the top floor of a big parking garage several years later, when my dad held her over the side and chanted in that same eerie sing-song voice that he was going to drop her and she would fall down into the street and die — he did not drop her, he did not drop me, and neither of us have died yet. Our dad with the multiple personalities is long gone and we are still alive, wrestling with our ghosts.

  3. AHA. Thank you for explaining this. I can see why you thought my “jamais vu” experience might have been dissociating, just from the words I used. A

    You know, I literally dream while awake because of my narcolepsy so it is an understandable misunderstanding, so to speak. I often confuse reality with REAL dreams, nighttime and daytime. But you could see if you hooked me up to an EEG that I was in REM sleep and that I was genuinely dreaming. I go into REM sleep immediately upon falling asleep or before then, unlike most people who take 90 minutes on average to start into REM and dreaming. It is weird but I KNOW I start dreaming immediately, and I have had a sleep EEG, though not a polysomnogram due to psych meds, where it showed that I dream immediately upon falling asleep…That time, I dreamed that the EEG people were pulling a paralyzer switch to paralyze me from foot to head in that order, and I started screaming to them to stop or I would cease breathing. They “woke me up” to tell me I was just dreaming. I had difficulty believing this because I thought I was awake all along and that I had had to tell them to stop paralyzing me!

    Many times I have believed things that were “false” because I dreamed them but I had no way of knowing they had never happened because i didn’t understand that they were only products of a realistic dream… when I know enough to ask someone DID i dream this or was it real, it is possible for me to understand that something might have been a dream but only then. In fact, the very fact that I do ask that question is virtual proof that it was a dream.

    You know, just this week it happened again. I was informed that I had NEVER been told to get off the anticonvulsant Topamax because of double vision. But I believed for weeks that the neuro-ophthalmologist’s office had told me to do this, because I dreamed it. I was certain of it, but it was only a dream that I didn’t understand was a dream until the office corroborated that it was not reality. Oy vey! Oy vey! I am sick of these mistakes…And no one understands where I come up with these notions, because they don’t understand how realistic my dreams are and how much I believe what I dream!

    Anyhow this has nothing to do with dissociation. Is a completely different phenomenon. But it is what i go through instead, due to narcolepsy…and I believe in my dream reality just as fervently as you tend to believe in your dissociated reality.

    I won’t even go into the strength of my conviction in *hallucinated* reality but leave that for another discussion. Needless to say it is another problem altogether, but just as critical!

    Love to you,

    Pam

  4. No need to apologize to me, Pam, I understand where you are coming from.

    I have had periodic episodes of dissociation since I was a little girl. When I was a child, my dad was diagnosed with Multiple Personality Disorder. He really did seem to be more than one person . Apparently, MPD is an extreme form of dissociation. His separate personalities were unaware of what the other personalities were doing. As my dad explained to me once, it was like all but the presently dominant personality were asleep. I don’t know how he managed to hold down a job, being so fragmented.

    My dissociating has never been so severe. For me, I just get a very strange, unsettling feeling that nothing is real, that everything is a dream. In my case, it started off as a defense mechanism. Feeling so strange used to frighten me, until I learned what it was.

    Yesterday my husband and I bought a very heavy roll top desk and brought it home. We are both in our 60s and… did I mention the desk is very heavy? In hindsight, we both must have dissociated from our senses to think that it was a good idea for us to lift and move that desk ourselves. Ouch… 😉

  5. Please don’t worry, Alaina or J about wrongly “diagnosing” here. I would rather have comments that err than none at all, and I enjoy the back and forth. You could not know my medical history in any event, so I apologize if I seemed to be “snappy” re dissociation. I do not really understand the term but also do not think I suffer from it. I generally speaking feel pretty much in myself, not unreal or as if the world is unreal. Which is my understanding of dissociation, no? When I have felt unreal it has usually been the result of medication reactions, in my experience. Yes, I have experienced trauma, but — aw, I dunno, I do not understand all the ramifications of PTSD I only know what I feel and do not feel and so far as I am aware, I do not experience much dissociation…But what do I know? I do not even know what dissociation is and I would be the first to admit that I am not the most knowledgeable about PTSD except insofar as my own trauma history is concerned. I can’t even read a book about it, because 1) I can’t read books visually, too hard to see and comprehend and 2) I find trauma books particularly too difficult to read, too traumatic!

    8)

    Pam

  6. Dear Pan, although you have been nothing but gracious in your response to me, in hindsight, I believe I was wrong to try to diagnose you. I was trying to help by sharing the info I recently found that has so helped me. But you are not me. Which is wonderful. We are each a one-of-a-kind original. Even an “identical” twin. 🙂

  7. OH how I HATE “never being taken seriously, just because I am a mental patient.” Just seeing that LOOK on a doctor’s face, when I describe a physical symptom that they can not easily and quickly identify… I HATE that LOOK!

    I, too, would far rather have a physical seizure than “psychological dissociation” ~ for the sake of my dignity. What I have come to believe, thanks to recently discovering Dr. Claire Weekes wonderful books on the subject of “nervous illness,” is that my occasional dissociative feelings are actually physical in origin. This is why I love her books so much! Her well-informed medical explanations let me off that horrible hook of thinking that I am “crazy” because my terrible sensations are “all in my head.” Dr. Weekes NORMALIZES the “crazy” feelings, by explaining how they are caused and/or exacerbated by the PHYSICAL: adrenalin, sympathetic nervous system, parasympathetic nervous system, physical exhaustion, etc.

    Your “cavernous malformation with associated venous anomaly” sounds scary, though. I have never heard of that, I will do a search on it.

  8. Thank you for your suggestions. The thing is, I have a cavernous malformation with associated venous anomaly, which if you google Cavernoma of the brain you will learn that it is 1) associated with headache and vomiting, which occurred to me last weekend, and 2) associated with seizures. I have already had one small episode of brain bleeding from this, so there is reason to suspect that it is a CM that may be causing jamais vu, and real seizures NOT psychogenic or psychological factors (i am never taken seriously, just because I am a mental patient, thank you kindly…)

  9. Again, J, I think you’ve nailed it. Dissociation — feeling as though nothing is real, and especially feeling like the familiar is suddenly alien — happens to me when I am super stressed. I have read that this is a normal reaction to trauma and extreme exhaustion. I also read that the “unreal” sensation will easily pass with time and rest, if we don’t “retraumatize” ourselves by WORRYING about the strange way we are feeling.

    The books and audiotapes by Dr. Claire Weekes do a beautiful job of explaining this normal human phenomena. Her book HOPE AND HEALING FOR YOUR NERVES was published in 1969. I just recently read it. Brilliant and lifesaving. I wish I had read it 45 years ago, what a lot of grief it would have saved me! I am going to order her audio DVD soon. Highly recommended.

  10. Your post is such a relief. What an ordeal you have been through! And yet, here you are, kindly and considerately assuring us that you are… maybe not entirely ”OK,” but much better. YAY!!!

    Our minds are so mysterious. Like the mystery of where our cell phones go… it was in my hand, I used my phone to send a text to my daughter. And then — who knows what happened?

    I’m glad you got a good laugh out of my lost phone. These things seem to happen a lot more since I hit 60. If I can’t find my flip phone tomorrow, I will have to break my new smart phone out of the box and learn how to use it. Eeek…. technology is scary. 🙂

  11. Dear Alaina,

    Thank you for your email, NONE of mine is going out at the moment, I have no idea why. So I cannot respond except here. But I will get it working eventually, just not tonight. Too tired to call the Effing cable company and deal with those c– s–kers! So for now, I had a good laugh about your losing your cell phone…And i sent you all those numbers as I i ever can find either of mine!!!! lol

    Night night,

    pam

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