I went to the neurologist yesterday about the episodes I talked about on August 9. It was very scary--I was afraid he would be upset about the Topamax because he refused to put me on it in December even with my eye doctor's blessing.
The appointment was a more positive experience than I thought it would be. He asked what type of glaucoma I have and was very receptive about the Topamax. We talked about my migraines, and he was still more fixated on them than I felt comfortable with. I finally managed to explain, though, that pain generally is not my problem and that Imitrex is not always helpful for me. I also explained that the migraines haven't been a problem for quite some time and that the main problem seems to be the "other" symptoms, which Dr. U. suspects may be seizures. He asked if anyone had ever witnessed one. That's a very hard thing to answer--people witness them all the time and don't know it. Mom and I discussed this later, and I think we've finally gotten to a point where I can communicate to her when I'm having symptoms and she may be able to observe and note possible differences between "episodes" and general tiredness/inattentiveness/medication effects.
He agreed to put me into the epilepsy unit for a week of EEG monitoring in September. That should be very interesting, especially in light of what I'll write on down in this entry. He talked about EEG monitoring being a good way to confirm epilepsy but not a good way to disprove it. I appreciated that, but at the same time life would be easier with that confirmation.
When we came home, Mom dug around in her files and located the records from the testing that was done when I was 14. It was interesting to read but has really stirred up a lot of thoughts.
Patient is a 14-year-old, right-handed, white female legally blind since childhood who presents with five episodes of falling down stairs at her new school. The patient's neurologic examination was normal except for mild ataxia on tandem gait. Her routine laboratory data was all normal. Her brain MRI was normal. Neuropsychological testing showed no cognitive deficits. Routine EEG was interpreted as being normal for somebody who has been visually deprived since childhood, and her sleep electroencephalogram showed occasional bursts of frontal dominant generalized abortive spike and wave and polyspike and wave activity. Her electroencephalogram was not interpreted as being consistent with either absence seizures or complex partial seizures, which she clinically may have had. The abnormality on EEG can be seen in patients with grand mal epilepsy, although there was nothing in her history to suggest that this was a grand mal seizure disorder. Because no definite seizure diagnosis could be made, the patient in consultation with her family and Dr. Appel agreed to follow-up in Dr. Appel's clinic in four weeks
It seems that my parents and I remember things very differently from the way this report seems to communicate them. I, at least, remember very distinctly that we were told that the EEG was normal and the abnormality was dismissed because of blindness. This summary presents a very different story, and it should have been explained much more clearly to us that I may have had seizures and that the abnormality was consistent with a different type of seizure than what I appeared to have had. The problem with what is now called generalized epilepsy is that a lot of times partial seizures may generalize at some point but may not always. Reading this report, the question I want to ask is whether I've just been very lucky that my brain hasn't blown its cover yet. Were we playing with fire by leaving it alone and assuming I'll be fine? If so, I'm glad I've been so fortunate but also very sad in a way. I fell through the cracks, and I've spent all these years believing that if I admitted to having symptoms I was just being a hypochondriac and I needed to suck it up and be ok because the doctor said I was ok.
A large part of the problem is that we did not develop a trusting relationship with the doctor. If we had, he would have been the first person I went to when I had the same symptoms months or years later--since I had no symptoms during that four-week time, the episodes were probably assumed to be stress-related. But as revealed in my recent discussions with my mom, I didn't know how to discuss all the things that might have led to an accurate diagnosis. There are things that I have experienced for most of my life that I now understand are characteristics of partial seizures but which I would not have thought to report because Mom's response would have been, "That's weird," if I had said that I felt that part of my body was upside down and another part was floating. I knew it was weird, so I didn't say it. It couldn't be seen, so no one knew it existed. I just learned to cope with it. But coping with it doesn't mean that I was ok, and it's not an appropriate way to function in daily life. My alertness could have been dramatically improved, as is demonstrated now that I'm on appropriate medication. All the years of unreported symptoms doesn't show that I had no symptoms. It only makes the doctors think that I had no symptoms. When I reported, I reported to doctors who didn't know me and didn't have my records, so they had no idea what to look for. For all I know, I went through the same dilemma all those times, except I was never sleep deprived again. But if I had returned to the same doctor with repeated symptoms, a more definitive diagnosis might have been made based on an antiepileptic trial because he would have seen that the symptoms persisted. Is it my fault? His? Who really knows? A better rapport certainly would have improved the likelihood of reporting and finding the truth sooner.
The report does mention two things and then neglect to address their significance or lack thereof, and these two things concern me now. The neurological report mentions mild ataxia and the psychoeducational assessment mentions weakness in both hands. Both appear to be just side notes but not causes for concern. Even if they were not things that warranted therapy, I would have appreciated knowing about them instead of going along all this time thinking that I was "normal" and wondering why my strength was not equal to that of my peers. There are some job functions that require physical strength that I simply don't have, even typing and playing piano. I have always wondered why keyboarding and piano exercises did not seem to improve my speed. If I have fine motor weakness, then perhaps there is a natural explanation and I have simply reached my body's natural limit. Instead of spending hours on end trying to push myself beyond that limit, I need to accept my limitations--or else I need to find therapies or exercises that will help me more than the standard practice exercises will. About the ataxia... Gait is something that I experience difficulty with as a symptom at times. So is ataxia normal for me, or was this notation on a symptomatic morning? It would have been useful to observe my gait changes over time, but because of my visual impairment it can be difficult to observe a normal gait for me in an unfamiliar environment. In order to observe a true gait, I need to be able to walk confidently without concern for obstacles.
The report appears to contradict itself in other places as well, as later it states that it is unclear what role stress may play and then still later the psychoeducational tester states an expectation that I will have difficulty with school. A notation is made that I had had previous difficulties with peer relationships but that the situation is improving. This is consistent with my memories and with the evidence in my journal entries. I was always disturbed about the low quality of my social life, but it was less of a concern in high school than in junior high--I did have a small core group of friends, mostly other people with disabilities, and I was also bolstered a bit by my faith.
It is clear that the assessment was negatively affected by lack of appropriate modifications: on the oral reading section, the passage was read aloud to me instead of provided in braille. Since I had been provided the vast majority of educational materials in braille, I was very unaccustomed to learning via auditory information even though I could memorize rote facts and spit them out (e.g. phone numbers and other auditory activities very common to most childhood activities). So my performance on this portion of the test was poor. It was noted that I was tired at this point, and a recommendation was made that further assessment be conducted with more appropriate modifications. This was certainly an appropriate recommendation, although plenty of psychological testing had already been done on me by the school system's personnel and no more was necessary.
For some reason, the evaluator felt that I may be experiencing stress related to competing with nondisabled age mates in a fast-paced social and academic environment. There is nothing in the report that seems to substantiate this, and I cannot fathom why she would think this. Is it a bias based on the fact that I was a disabled child in a public school and the onset of symptoms happened to coincide with the transition to high school? I suppose this should seem reasonable, but is seems like grasping at straws to brand a bright, high-achieving (straight As), ambitious, active child with stress when there is no evidence and there is evidence of a possible neurological disorder, even if the doctor doesn't understand why the disorder is presenting differently from what the evidence suggests. That suggestion that I was "stressed" communicated to me that nothing was wrong and caused me to underreport continuing symptoms despite a continued active lifestyle with high achievement and relatively satisfying friendships. I always felt that something must be "wrong" with me if I needed so much counseling, but the counselors always told me that I was bright and "well-adjusted" and they didn't understand why I experienced the social problems that were the only source of significant distress other than my mysterious medical issues. I think that at least some of my "psychiatric disorder" was created because of this assumption that I was stressed out--I did not have the freedom to live as a person with disabilities, to accept the person that I am and to seek accommodations and treatments that I needed; and I still feel guilty and ashamed for saying that I need them, as if I am really refusing to accept my mental illness. I felt that I was expected to live as a mentally ill person. I do think that I had some legitimate psychiatric disorder and still do; but I think that it differs from these symptoms and in some instances is impacted by these things. If mental illness was the cause of these episodes, then why has all this counseling not resulted in an improvement in symptoms and why do they respond to antiepileptics? I want to put the last 20 years to rest--in my heart and mind as well as in my actions. I want to move on. I want to be able to say that I am closing therapy because I've learned the stress management techniques I need--and I have. But if I'm still having these symptoms... You see, if I'm still having these, then either I need my meds or I haven't done enough in therapy.