In my further reading on TLE I have learned that while “TLE hallucinations” can be ecstatic visions or the sight of threatening people or actually hearing voices, usually they are of brightly colored lights or visual distortions, like objects appearing larger or smaller than usual, hearing music, feeling insects running under one’s skin etc. In addition, there is the awareness that these are hallucinations, though not always. A personality seems to be associated with TLE, some people think, though it is not clear to me how established this is as fact. And some with TLE and without it claim that creativity is directly related to it. Hypergraphia, the compulsion to write, write, write is definitely associated with TLE, along with a compulsion to draw or do art or think/talk about religious subjects. Heightened emotional state but reduced sex drive. Something called “stickiness” is described, which I construe as a kind of tendency to glom onto a person or to exhibit an extreme loyalty. Also, there is seen irritability and gross personality change, rages, a tendency to fly off the handle or perform outrageous acts like stripping in public etc.
In TLE you can have feelings of euphoria and floating as much as feelings of impending doom. A feeling of “rising into something” or of something rising through one’s body is a common concomitant of a TLE seizure or aura. An indescribable feeling according to many. And you can have psychosis, chronic or acute.
interestingly, while EEG is notoriously poor at picking up TLE, there are often punctate signal hyperintensities (precisely the abnormalities I have had at least since Y2K) seen on MRI in those with TLE in the book I am reading — SEIZED, by Eva LaPlante.
Now I do not want to jump the gun, because too many of my symptoms have been chronic and disparate, not following a single pattern of seizure, whereas at least one authority claims that once you have one seizure, all others look similar. Indeed, while you might say that Grey Crinkled Paper arose from a seizure, and the jacksonian seizure with Novocaine were definite, and too the feelings of impending doom were also seizure activity while I was taking Clozaril and other antipsychotic medications, the others, with different patterns yet, could not have been,since they were more varied even than those. The olfactory hallucinations had to have been seizure associated too, but then where does it all stop, and where does the notion that one seizure sets the pattern for all others go?
And yet even conservatively I myself would count all those instances as seizures even if I were not going to count anything else as seizure-related right now…So what to make of them, and the fact that ALL were so distinct and different from one another:?
Does it make the whole thing, the whole illness over all TLE or schizophrenia? Can you in fact have both, or does having TLE suggest that the schizophrenia was a misdiagnosis all along? And how does one know? Certainly, I have one trait that points towards the TLE diagnosis: I do well inbetween “attacks” of either illness, and seem to have not suffered any deterioration in brain function cognitively. Not massively. Though my memory and such is faulty, that is often the case in TLE itself!
I don’t have the slightest idea, but I suppose I will find out as the weeks go on and I continue to discuss it with Dr C, as I anticipate I will. I do plan to see him once Dr O leaves… I liked him enough to do so at any rate, and I liked this idea enough too, to want to pursue it too. I t will be very interesting to find out what happens, where it leads…If it redefines me entirely, I wonder how I will feel or deal with it?
One thought on “Schizophrenia and Temporal Lobe Epilepsy (cont.)”
I stumbled upon your blog while searching for information about hallucinations and TLE. I was diagnosed at age 18 with bipolar II and subsequently with schizoaffective disorder after I told doctors of my hallucinations and 2 EEGs turned up negative. I was put on multiple antipsychotics over the following 7 years, none of which ever touched the hallucinations. Recently, a new psychiatrist asked me a whole series of questions relating to TLE, to which 90% of my answers were affirmative, but when I said that my EEGs had been normal, he dropped the issue completely. Now, having researched TLE a good deal, I believe it’s possible that everything I’ve been experiencing (the hallucinations since age 5 or so, and the mood symptoms since about age 14) could be a result of TLE.
Like you, I wonder what this means for my identity. For 10 years, I have–somewhat reluctantly–identified as someone with a mental illness. Many of the articles I’ve read about TLE stress the importance of patients being reassured that what they’re experiencing is not a “psychological problem,” but has a true medical basis. Part of me wants that “reassurance.” But a big part of me is loathe to give up the identity of a person with a mental illness. That is, I don’t want to reject that diagnosis as if I think it’s such a horrible thing to have a mental illness. I don’t understand how the researchers and clinicians who write these articles about TLE cannot realize that so-called “psychological problems” have a medical basis too. I’m so tired of the stigma that gets hurled at people with mental illness at every turn. Part of me wants to remain a staunchly sane member of the category of people labeled “insane.” I almost feel, if I pursued an investigation into my TLE symptoms, that I would be abandoning my brethren. And at the same time, I’m afraid of going to yet another doctor who will invalidate my experiences and tell me, again, “No, it’s all in your head.”
I am very torn. I would love to read more about your journey as you explore these issues with your doctor(s). You obviously have a brilliant mind. Thank you for sharing your thoughts.