The information on this page is compiled from journal entries regarding my seizures and related symptoms. My search for answers has been very long and difficult, and in fact it is still ongoing. I have discovered that my events have several causes, and each is important to address. If you are searching for answers, my best recommendation is to keep a seizure diary. Download my diary template.
I was born three months prematurely and to my and my parents' knowledge had no complications other than damage to the retina resulting in severe visual impairment (ability to detect objects and some variations in color at near distances in the right eye and presumed total blindness in left eye due to extensive corneal damage and unknown condition of the retina). I experienced chronic respiratory illness and allergies beginning at age nine and was often prescribed antihistamines and/or decongestants. I experienced early puberty but did not begin menstruation until age 11.
At age 14, while attending a program at the Texas School for the Blind during the summer of 1986, I began to experience periods of visual loss lasting from a few minutes to two or three hours. These occurred without warning while I was in the midst of normal activity (school, play, etc.) I generally had the desire to carry on with the activity but was frightened by the symptom because my eye condition can lead to complications which threaten vision. Eye exams revealed no such complications, and I was prescribed a beta blocker for ocular migraine. Confusion and fatigue following the period of visual loss were interpreted by staff as attempts to avoid activities or responsibilities.
During the fall of 1986, I entered high school and became more aware of additional symptoms: disorientation (misinterpreting the location of sounds or objects in the environment), feeling that my body parts were displaced (left hand on right arm, arms above head despite knowledge that I was writing on paper on my desk, etc.), feelings of weakness and inability to move my arms and legs despite knowledge that I had the physical ability to do so, occasional short-term memory loss, and occasional vertigo. I experienced drop attacks, which led to several falls on the stairs at school although I was able to maintain my balance while not on stairs and my difficulties were assumed to be due to "not paying attention." I was often somewhat sedated due to taking antihistamines for allergic symptoms, and my clumsiness and poor concentration were often assumed to be side effects of sedation. My speech became slurred during these episodes, but my ongoing complaint of weakness in my facial muscles has not been taken seriously by medical professionals.
The short-term memory loss presented difficulties in school, where I was taking a speech class in which students were required to give oral presentations. I was assured that all students forgot elements of their presentations from time to time; but it wasn't normal for me. For lack of a better word, I have a near photographic memory. When I write my notes out and study them, I remember them because I remember not only the details but the layout of the page and the placement of details on the page relevant to other details.
These episodes tended to occur several times per week regardless whether I was at home or at school or what activity I was doing. At the height of the episode, I hear a sound in my mind that I can't describe. It sort of sounds like whirring and I hear my thoughts as gibberish, and I am filled with fear and feel that I could faint and I often cry. This is very different from my panic attacks, in which I feel my heart racing and want to run or throw something. I may feel weak and cry during a panic attack, but I am very aware that I feel panic about something outside my mind even if I don't know what it is and that my heart is racing. During these episodes when I hear the whirr, my heart is completely at rest and there is no desire to run or act out, only a feeling that it is the height of the episode and the time when I will not remember anything later . I have been able to make decisions at the time to do things so that I am able to verify what has been done, so I know that during these episodes I can perform basic life tasks with at least some accuracy. But I also know that it takes effort and that I may make important mistakes. I do not cook or travel outdoors when I am experiencing these episodes because I do not feel that I can do them safely. I am aware that I react to things too slowly and that I do not recall important details so may not be able to remember which parts of a procedure have already been done. At times I know that I am in the process of doing something or going somewhere, but I don't know what has been done or what is left to do and I am not able to recognize the environment or objects in order to make decisions until the episode passes, about 30 seconds or a minute. At these times I am able to tell someone that I need help and what I am trying to do, but I cannot explain why I can't do it or what needs to be done. Most often when this happens, I stop and wait until I am able to put the pieces together and reorganize what I was doing.
The episodes have increased and decreased without any pattern that I can discern over the years. They were very infrequent during the time when I was between 17 and 21 years old but began increasing after this and have been increasing ever since. I do have migraine headaches which occurred as often as four to five times a week when I lived in Florida during late 2002 to fall 2004. I have been told that these symptoms are associated with my migraine headaches; however, I do not often experience headaches now. Generally my headache is preceeded by a period of intense emotional instability followed by an aura in which I see flashing lights that are very bright and then abate as the headache sets in. During the time when I experienced headaches frequently, I also experienced seizure symptoms frequently. However, as the headaches have decreased, these symptoms have not--until I began taking Topamax.
Over the years, my attitude about the symptoms has varied from being very concerned and wanting to know what they were to believing they were stress-related as had been diagnosed in 1986 to believing they were related to food allergies to believing they were migraine-related as they were diagnosed in 2000 to believing that something else was going on and being very angry, finally, when I read the report from the testing that was done in 1986. The journal entries below are a reflection of that process. I share them because I think it is important for people to understand what it is like to live with seizures that are misdiagnosed and why it is important to have an accurate diagnosis. I have inserted discussion between some of the entries because where the entries themselves are unclear my memory is often quite clear. Even when my memory for details during the events is hazy or absent, my memory of the feelings I experienced because of the events is very clear and so is my memory of the things I pieced together afterward. Sometimes those things are more painful because they are memories of the conclusions I drew, things that were never said but which I was left to believe because no one told me differently.
Yesterday I got in one of those weird moods. You know, where I was kind of out of it like when I went in the hospital. I did that last week, too.
So I went to my voice lesson with Miss Eaton. I was telling her something, and I started crying. It had nothing to do withher, and I told her that. I don't know why I did that.
"I think I'm going to schedule you another lesson," Miss Eaton said. "I've never seen you get like this!"
My mom got there right when I was trying to get hold of myself. I was so embarrassed, but Miss Eaton did not sayanything about it. Mom's going to talk to my doctor. She said she might take me to a psychologist.
This is the only journal entry I have where I attempted to describe any of the symptoms--at least, it's the only one still in my possession. I thought it only described one; but I see it mentions two. I recall a lot more than what is described here. I was working at the Texas Commission for the Blind as a secretarial assistant. My job was answering phones and taking messages. I had begun keeping a running tab of how many calls each counselor got because I thought it was amusing that one particular counselor got so many calls. I did not quote this part of the journal entry above; but in the journal there is a notation of how many calls the counselor had received on that day; so I did keep my chart going. What I recall about the day is that I was very slow in answering the calls. I let the phone ring six or seven times on occasion because I did not recognize the sound and only knew that I wanted it to stop and didn't know how to make it stop. I knew that I felt "bad" but not how to make that stop either. I tried eating a candy bar, asked a coworker to pick up a burger for me, drank something... None of it helped. One coworker who was a registered nurse came in and asked if I was all right. I answered that I didn't know. I wanted to lay my head in her lap and cry. Someone understood that I was not ok.
Then I was at the voice lesson. I have no memory of arriving or of doing the initial exercises. I know they were done because that's how we got into a conversation about my prior voice teacher's work with me. What kind of exercises did he do with me? I began to struggle for words ... to feel disconnected from myself ... to hear my own voice from below ... and that whirring sound ... and then the tears were coming and Miss Eaton was urging me into a chair and getting me water... We weren't having a lesson... The next little while is blank. It was only 15 minutes through the lesson at that point, but Mom came at the end and asked what was wrong with me. "I don't know." I was chastising myself for acting up. I know she wouldn't like it if I told her I had had one of those episodes. I was supposed to be ok. The doctor said nothing was wrong. So I don't know. Hopefully Miss Eaton would never tell. To my knowledge, she never did. Maybe she should have. Sixteen-year-olds' minds don't always work with wisdom.
December 5, 1995
Note: This letter was written immediately following two episodes. I wrote part of it after the first and part of it after the second.
7:30 PM
I feel like I am rocking back and forth, like I am on a wiggly bridge. It won't stop. No one is shaking the bed. Why does it feel shaky?
My muscles are weak. It starts in my fingers. My typing isn't too good. I make a lot of mistakes and don't catch them. I can't push the keys very hard. The left side of my head feels jumpy. The right side does too, but not as much as the left.
Maybe it is the chocolate. Chocolate has never done this before. Maybe I shouldn't eat chocolate for a while.
Maybe lying down will help. I am falling asleep. No, not asleep. I am in a trance, disoriented. I cannot move. Suddenly I am startled. What happened? What was I thinking about? I don't know. I am not tired. Was I asleep? My mind is still jumpy. My muscles are still weak, but not quite as weak. I am so scared! I have had a panic attack before. It was not like this. My heart raced. I could think straight. I had a cold feeling in my fingers. In this state I cannot think right. Why is the TV on? Why am I in bed? Did I go to class? What time is it? What day is it? The time on my watch does not look right. 3:00 looks like 9:00. 7:00 looks like 11:00. Where is everyone else? Why am I getting up walking around? I don't know what I'm doing. I cannot go back to sleep now.
8:10 PM
I don't feel like typing any more. I wanted to send a letter.
Kyle is making some vegetables. I want vegetables and meat. I hope he can find everything to put in them. I don't have enough energy to get up and cook. I am lying on the bed. I'm getting too weak to type again.
I talked to Flower earlier. Her name isn't Flower, but that is what my mind says. I talked to her, and she was sleepy. I'm not sleepy. She is. Why am I calling her Flower? Her name is something else. Melanie. She's in the hospital.
Now I am fully alert again. This looks so strange to read. Am I going crazy. Am I just falling asleep and having weird dreams? What is wrong with me?
February 24, 1996
I am wondering about the relationship of seizures to allergies. I am allergic to coffee beans, and I have noticed that when I drink too much coffee in one sitting I feel really shaky and lightheaded, and I start spacing out. I've had the spacing out stuff for a while, and Depakote helped it (except when I drink coffee, of course). I've never had a grand mal seizure, but when I talked about this with Melanie she said that is how she feels before them. I know it is not the caffeine because even decaffeinated coffee does this to me. I also become very sleepy. When I have the opportunity to lie down, I usually sleep for a couple of hours. I've done this after some of my blank-outs.
Of course, wouldn't you know, my EEG is normal.
February 27, 1996
I went to eat at the Golden Corral last night, and I had a great time! I ate off the buffet and had chicken-fried steak. I had a couple of little tiny brownies and a chocolate chip cookie. I also ate some frozen yogurt with chocolate on top.
Later on in the night I had a whole bunch of blank-outs all in a row. Terri could tell by the way I was talking. I was really dizzy, and my legs were really stiff. I guess it was a seizure--it felt similar to the one I had after the coffee.
Today I called the two restaurants to find out the ingredients of what I had. Hershey's chocolate syrup was in the coffee mix I had a few weeks ago, and Nestle's was in the yogurt last night. I called the grocery store and had the ingredients read to me. The only thing I found to be suspicious of is something called xantheum gum. I did a little research, and apparently xantheum is a weed similar to soy. The nurse at my allergist's office says it is used in ice cream and coffees that are not all- natural.
I eat chocolate, to which I am also allergic, often enough to know that it wasn't what caused the problem. I also drank some regular coffee this weekend without any problem. Marsha said she didn't know if the allergy clinic tests for xantheum. It doesn't show up on my chart. There were three other gums, though, and I had reactions to all of them.
March 30, 1996
I went to Houston this weekend for a bridal shower. (I got married on March 9.) They had a yellow cake with whipped cream icing, which is my favorite. No chocolate.
After the shower I went back to my parents' house and eventually fell asleep after about 30 minutes of feeling lethargic and disoriented. My mom kept saying that I was asleep, and I had a very difficult time talking. It was not as bad as the other times. But we had cake left, so she read me the ingredients. It had xantheum gum in it.
I never have this problem when I bake for myself using standard ingredients like sugar, salt, cocoa, etc. I am pretty well convinced that the gum is the problem. My dad has a book that tells what diferent things are used for, so he looked it up. It is used as a thickener, so I am sure I can expect to find it in syrups and candies and probably in whipped cream.
I felt too stupid to go to the neurologist on Thursday like I was supposed to do. I have five normal EEG's. My sister works for a neurologist, so I thought that maybe she could ask him about the allergies. Instead, I guess I will get all my EEG's rounded up, if I can even find all of the places that did them, and just feel stupid and go anyway. It seems I am not always going to know when I will encounter this, unless I start reading ingredients constantly. I don't know if something like Depakote would help for all the blank-outs, but it helps with some.
In November, 1995, I was prescribed Depakote for rapid cycling bipolar disorder. This was the first time I had ever been tried on antiepileptic medication. Of course, I could not discuss its effect on the seizures with the doctor because I was believed not to have epilepsy. Unfortunately, my Depakote trial was short-lived because the psychiatrist stopped taking Medicaid and the next one did not believe I had a mood disorder since I did not meet the DSM-IV criteria for a full-blown manic episode. The time without medications would have a very negative effect on my psychiatric condition in the long run. In the meantime, I read an article suggesting a combination of taurine, magnesium, and L-tyrosine for seizures. I tried it, thinking I couldn't have much to lose; but I could not afford it on a regular basis because I was on a fixed income due to my disability.
May 5, 1996
I had a memory this morning of something that happened when I was in high school: someone touching me inappropriately. I wanted to get up and leave the church service so that I could cry. But I didn't. I tried to get my mind off it. All day I felt nauseated and tight in the chest. Sleeping only helped for a few minutes.
Back at church tonight, I thought about it some more. Maybe it really wasn't his fault--I didn't tell him it bothered me. So maybe it was all my fault...
I zoned out in the middle of a song, and when I came out of it everyone was praying. I was in a position I have seen Melanie sitting in before when she is upset about me and Kyle fighting. Usually we think it is a type of seizure, but lately it seems to be more of a dissociation. I don't know how long I was like that. I asked her how much time had passed between the beginning of the song and then, and she didn't know. I had known that things were going on around me, but now I couldn't tell you what they were. I have done this before, but I thought I was always falling asleep. Guess not.
Anyway, when I came out of it, I did not feel anxious, and it felt like the stuff had not happened to me. The only thing I could think was it happened to the me that was the girl in the story, and that was a different situation entirely. Melanie and I left the service and went to the bathroom. I cried a little bit, and I think that helped.
September 2, 1996
When I wrote before I described finding myself sitting in a certain position. Actually, it is kind of like a praying position or like when you fall asleep on accident. The difference is that when I am sleepy my head nods back and forth. During the other blank-outs it feels like something passes over my mind and blocks out everything. These usually last only a few seconds, and I can pick up enough afterwards to put things together. After the other kind, I am usually very sleepy, and I have trouble sometimes with talking and other motor activities. I have found that taking a vitamin combo which is popular for seizures helps a lot--I haven't had any of those in a while.
September 20, 1996
I have to get this out. I don't know if it is legitimate or if I am just being paranoid--you know, they told us in one of my psych classes that a person could look at the DSM and diagnose himself/herself with whatever because he/she is looking for it and sees some of the characteristics in the self.
I've written about my blank-outs, and I try to ignore them. I have a very in-tact memory of my life--only three periods of abuse, all of which are past bothering me. But I do still have the blank-outs in response to certain things--mainly facing fears of being rejected by peers or criticized by people. Sometimes I am afraid that I have parts inside that are just waiting to explode out when I am out of control.
I used to write in a journal every day, and now I don't. I know that I have been repressing a lot of things and now I can't get to my feelings very well. So I am afraid they will find a way to come out and I won't know about it.
I had been seeing a therapist for premarital counseling and continued seeing her after getting married. When she moved away, she gave me the names of several other therapists in the area. I returned to therapy in early 1997 with limited success. My therapist and I disagreed strongly regarding some important issues, and eventually I took a break. I knew that therapy could be helpful--I had sought the help of counselors in the past during my first year of college and the year following my transfer to a new school. I also knew that there were other ways to help myself. I purchased some self-help journal workbooks, joined some self-help groups online, and forged some solid relationships with mentors who had faced similar personal challenges. Over the next few years, I dug deep inside myself; and in 1998 I relocated with my parents to another state, where I hoped to make a new start for myself after the dissolution of my marriage and some other personal difficulties. In early 1999, I located a new therapist to help me with the transition. Later that year, she started a dialectical behavior therapy group, which I participated in with great enthusiasm. My dissociative episodes decreased dramatically, and I found a new confidence and ability to cope with life. while. Unfortunately, my other symptoms did not go away.
In the spring of 2000, I had another EEG because I was concerned about an increase in the number of times I was seeing flashing lights. The EEG was normal, and my neurologist diagnosed the symptoms as "classic migraine." I began to read about migraine; and I learned that some types of migraine can cause slurred speech, muscle weakness, disorientation, etc. I stopped charting my symptoms and assumed that I had found the answer. I began to concentrate my energy on finding an effective treatment for migraines. My trials included all types of medications (including Depakote), dietary changes, and nutritional supplements. Most medications were ineffective; those that were effective caused weight gain and other metabolic side effects. Eventually, I had to stop taking Depakote because of this. Dietary changes were quite helpful; and over time I found that a combination of nutritional supplements was useful.
During 2004, when I lived in Florida, the frequency of my migraines increased dramatically; and I could not control them with any of the previously effective methods. The offending trigger was weather. I became concerned about the impact of uncontrolled migraines and was gearing up for another round of medication trials when things took another turn.
During my time in Florida, panic attacks also became a problem. I was experiencing severe stress related to the difficulty of evacuating prior to a hurricane as a person with a disability. I decided that in the interest of my mental health it would be best for me to move back to Indiana.
Moving back to Indiana had positive effects. My migraine frequency decreased. However, the panic attacks continued. In April, 2005, I was prescribed Xanax; and I began to monitor the episodes and search for additional remedies so that I could limit my use of a potentially addictive medication. With the help of cognitive behavior therapy techniques and a cat who was good at detecting anxiety and insistent that I spend time talking softly to her during a panic attack, I was able to decrease my Xanax usage to less than three to four times a week but still was troubled by obsessive thoughts. In June, my doctor decided to prescribe Topamax to see whether controlling my mood instability would result in less anxiety.
Topamax did wonders for my mood. I also noticed that the partial seizure-like episodes, which obviously were not migraines since I had not had a migraine in several months, stopped when I reached the target dose of 100 mg/day. Unfortunately, the target dose caused problems. The pressure in my eyes increased, and my eye movements became so rapid that I could not see at all. After four weeks at this dose, my doctorr and I decided to lower the dosage to 75 mg/day.
August 9, 2005
On 08/07/2005, I experienced five "episodes" with no headache or emotional or aura symptoms. I had been taking Sudafed for three days because I had had a colc. I awoke in good spirits and remember writing in my blog. I am aware that I administered one of my eye drops and took the dog outside. I have no memory of feeding the dog or administering my other drop or taking my morning medications, but there is evidence that I ate breakfast and these are things that I do as part of my breakfast routine. I have a vague memory of talking with a friend on the phone and telling her that I was considering taking a catnap before C arrived--C is the child I babysit for a few hours each week. I remember feeling "fuzzyheaded." I remember deciding not to take the nap, and I know that I was writing when C arrived. I don't know what I was writing. Whatever it was, I finished it later. It doesn't matter, but normally I would remember a detail like this. I am disturbed by my inability to remember details because this is part of how I stay oriented to my own activity and monitor my progress in getting important things done.
About an hour after C's arrival, I was aware that I could not see. I opened the blinds and could feel the sun, and I made up my mind to monitor the situation to determine whether I needed to visit the eye doctor again. I attempted to play air hockey with C. After about 15 to 30 minutes, I began to be able to see again, very hazily at first.
In the afternoon I took her outside to play in the hose, and we both had a good time. We then went to visit an elderly lady's farm where there were kittens. C held one and I could see its color very clearly. When we went into H's house, I noticed that I was feeling "spacy" and again having some difficulty seeing for a few seconds at a time. This continued off and on for a while, even after C's mom had arrived and we had been talking for a few minutes. I experienced moments of "haze" followed by moments of "clarity" in which I could see normally and felt energetic but would then suddenly experience more haze with disorientation and muscle weakness. During the "clarity," I played more air hockey with C and was able to see the puck flying across the table, even when it was still on her side.
Later, I experienced more "haze" while talking with a friend on the phone. I was looking up something on the Web, and I realized that I had been pressing the down arrow repeatedly and that the computer voice was speaking, but I had no idea what I was reading and my friend was calling my name. I had apparently been unresponsive. Still later, on the phone with another friend, I took my evening meds and fed the dog but within five minutes had no memory of doing any of it and was experiencing the whirr. I wrote down what I had done and went to bed. I am aware that I had two conversations after this time, but I don't know what they were about.
These "hazy" episodes are sometimes provoked by repetitive auditory patterns. I do not know that my vision is sufficient to allow for provocation by visual patterns--I cannot see anything reliably but do notice that certain things (flashing lights and animated objects) do seem to provoke episodes at times when I do see them, especially if I see them when I am tired or in combination with other triggering factors.
I mentioned panic attacks above, and they are very different. I am also aware that I dissociate, and this is different. It is something that I am aware of in the back of my mind--I know that I don't like a situation or that something is unpleasant or that a feeling I have is leading me to behave in a way that isn't appropriate for a situation, so I "turn it off." This doesn't make me feel shocked or out of sorts or disoriented physically. I might feel like I'm in the wrong situation, like I'm a peasant in a palace, but I don't feel like left is right and back is front, etc. I can identify dissociation and panic attacks very well, and usually I can either find a way to deal with them or understand why nothing is working (e.g. too much stress).
Very occasionally, I experience symptoms similar to a panic attack following one of these episodes. In July, 2004, I awakened early one morning and was conversing with a roommate while lying on a bed when I heard the whirr suddenly. I stopped trying to converse because it was too difficult and I knew that I would not remember the conversation later. After the whirr stopped, I was aware that I did not know the date or day of the week. I asked for the information and thought that I should go to the emergency room since I was very dizzy and was concerned that I could have had a stroke. The EMTs were very nonchalant and unconcerned about my symptoms because in their opinion my speech was clear and I could respond to a simple request (raise my right hand). (I've had a lot of practice learning to operate the right hand that feels like it's on the left side of my body.) My blood pressure was normal and heart rate was 105 at rest and 130 while standing. My normal heart rate is 75 at rest, especially in the morning! I did not feel any panic at this time but was disturbed by one EMT who kept telling me that she could do her job with a headache when I mentioned the word migraine. I did not have a headache at the time. I was prescribed Antivert and sent home. The Antivert was only mildly helpful, and another episode was precipitated when I saw children running in circles that afternoon.
It is difficult for me to assess the scope of vision loss during the white-out episodes. My left eye has never been treated and the vision in this eye is very unreliable. At times it seems to function better than the right eye, but the right eye is in better condition physically and provides visual input on a more consistent basis. I have experienced changes in the way that I see things that alarm me: colors appear different, not as "rich." I am disturbed by these changes because the richness of color was part of my visual cuing system in the same way that the layout of a page was part of my memory strategy for notes and I now have to develop a new cuing system.
I have a mild hearing loss primarily in low frequencies ranging from 20 to 35 DB. This loss is not considered significant, and I receive appropriate amplification from digital hearing aids. However, I ffrequently misunderstand language and experience delay in interpreting sounds which seems unusual for me. I am finding it extremely difficult to interpret the words in most musical or oral presentations, even when instrumentation is not overpowering, whether or not I am wearing my aids. More and more, speech sounds are beginning to sound like they are coming from the kind of PA system found in a grocery store--and grocery store PA systems are impossible for me to understand to the point that I would not be able to hold a job in that environment because I would not hear my own name being paged. Volume is not the problem. Clarity is--the auditory equivalent of richness. By the time I interpret a word, the speaker or singer is on to the next three or four words. As a listener, it is difficult to keep up. As a musician, it is extremely difficult to learn a piece. I find it very tiring and impossible to learn "on the fly" as I once could.
Depakote was a very helpful medication for me, but I experienced significant weight gain with seriously elevated cholesterol and an increase in asthma and migraines. After stopping Depakote and supplementing with a number of things for about 18 months, I have been able to return to a normal lifestyle and maintain my weight at 160 to 170 and a aura plus headache migraine frequency of less than three times a month with no special dietary restrictions or supplements. I have not used an inhaler in almost three years and have had only three minor respiratory infections. I do, however, still experience the symptoms described in detail here.
I experienced decreased neurological symptoms as well as significant improvement in mood instability and obsessive thought patterns on Topamax, and I felt that my symptoms were completely controlled at 100 mg/day. The dosage was lowered to 75 mg/day due to increased nystagmus and elevated intraocular pressure, both of which interfered with my visual functioning. I am uncertain how much control I will have with 75 mg/day. I was doing well early last week but obviously had a very bad day yesterday. [08/09/2005 update: I discovered that I had been taking the wrong vitamin, one that eliminates Topamax from the body. My suspicion that my Topamax level was too low was confirmed by a decrease in side effects during the time while I had been taking this vitamin. I stopped taking it on 08/06 and began to notice an increase in Topamax side effects and decrease in neurological symptoms on 08/08.]
I feel that something is happening here that has led to a deterioration in my abilities and if untreated will continue to do so. I want to pursue whatever testing will lead to an accurate diagnosis so that I can discuss the most appropriate treatment options. In the past I have had no success with antidepressants, beta blockers, calcium channel blockers, and tricyclics. This leads me to believe that while I do have migraines, they are not my primary problem. I realize that migraines are responsive to antiepileptic medications; but I also am aware that my headache frequency has decreased while the frequency of these other symptoms has increased over the last few years.
August 18, 2005
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.
The following entry was written on the day I returned home from my video EEG monitoring. I share it here because it provides a glimpse into the human experience of waiting for answers. This is the most difficult part of my journey. It is a part that must remain visible, even and especially when the answers are found.
September 16, 2005
I spent the past week in the hospital getting videotaped and monitored on EEG to see if one of my "episodes" could be caught and defined as a seizure or not. I have a lot of things to talk about from the week, and I'll start with what I wrote at 4:30 in the morning yesterday morning.
The time on EEG has been a very thought-provoking time for me. I'm supposed to be staying awake for 24 hours, and this is hour 20. So I'm just going to ramble and see what comes out.
Both my parents came in with me. My arrival was much too reminiscent of the 1986 hospital stay for my liking. As soon as we got off the elevator on this floor, we passed a room where a lady was on oxygen and calling in a very agitated voice, "MOM!" At first, I thought that perhaps she was a middle-aged adult whose mom was staying with her and perhaps was asleep, that maybe she was trying to wake her. But the calling continued as we went down the hall; and I realized that the lady's mom probably was not there. She was probably alone and dying. I was already having one of my seizures--Dad kept telling me to walk faster, and no matter what I did I couldn't move any faster--and I was afraid I might scream. I thought I was going to an epilepsy unit! But here I was on the general neurology floor--again, just like I was back then.
Mom must have been remembering the same things I remembered. "Welcome to your new home," she said. I wanted to tell her to turn around and take me home--after I had screamed.
I have had very few visitors. I suppose my family thinks this is no big deal since it's not invasive and I'm just sitting up in bed getting waited on. I'm alone at home anyway.
But this is very different from being at home. At home, I do get up and move around a substantial space, even if most of the time I'm writing or doing something in one spot. I get up, pet the cats, romp with Meghan, fix food, go to the bathroom, let Meg out, go to the basement to do laundry... Here, I'm literally wired to the wall. I can move as far as the bathroom, but that's it. I'm going stir crazy! I can sit in the chairs or on the bed, but there really is little difference for me. Either place is a good place to sit.
I don't want to ever need a hospital for long-term care, especially if I am incapacitated. I've had to speak up about my meds a few times. There was a mistake on my chart allowing a medication I am allergic to! If I couldn't speak, who would take care of these things? It scares me to think about.
Then there is the issue of visitors... I am afraid that if I was here for something long-term or serious, again I would be alone... I've been alone during the days following most of my eye surgeries, and I'm alone here. It's very lonely. At least I can call people on the phone. But I never want to be left alone with no means of communication!
These are the things that being in the hospital brings up for me so far. It's hard to control the panic attacks, and I see why some people have panic attacks that resemble seizures in this setting. I have a lot of time to focus on the hospital and my body's condition. I can do distracting things, but I don't have the luxury of ignoring the symptoms or fighting them off like I do panic attacks because I'm supposed to alert the nurses to any seizures. I try not to alert them to panic attacks, but when I'm constantly on the alert it's not always easy to tell the difference.
Mom did come and stay for a while last night, and we talked about my upcoming neurologist visit next week. She asked what I wanted him to say. That was really hard to discuss because it brought back memories of being accused of wanting to be sick so that I could have an identity or be like someone else I knew. But I managed to tell her (without having a panic attack) that I want to know what to call these things so that I can continue to get the medicine that is helpful for them, that I think he is too focused on my migraines which I feel are under control, and that I feel the EEG in 1986 was grossly misinterpreted. It showed an abnormality common in people with epilepsy; but the only thing that seems to have been worth explaining to my parents was the part that was interpreted as normal for a blind person. Those two things were unrelated, at least as I read the summary. I am desperately hoping that the same abnormality--or at least something--shows up this time, especially since there were three significant episodes and severel smaller ones as well. I don't want to hear that I just need more counseling because counseling has had no effect and antiepileptic meds have. If he doesn't know, I want him to say the words, "I don't know." She asked if I felt that I had epilepsy, and I said yes and explained about reading the old records. She doesn't understand how a person can have a seizure and not lose consciousness and be able to tell when it begins and ends. Part of me wanted to say that this is what happens when you have to live your life pretending to be ok and when your therapy teaches you how to be aware of your body's reactions so that you can attempt to manage emotions and panic attacks.
I won't know anything until next Thursday--I see the doctor at 11:00. So until then I just wait.
Getting the glue out of my hair is an interesting project. The problem is only slightly about my hair being long. The real trouble is the glue sticking to my scalp. I had to scrub it with sotton balls with fingernail polish remover, which stinks like nothing in my cabinets and burns very badly. (They make that stuff for nails, not skin!) I washed my hair twice and conditioned it three times, and it took about an hour to brush out the loose glue. (If that was really loose, I live in the desert!) My scalp is very tender now. Several electrodes were also stuck on my face, which is now very raw--Mom said I look like a leper. I don't want to put makeup on it--that will just irritate it more. But tomorrow my sister is having her baby shower, and I don't suppose it will do to attend with my face looking so raw.
I was reading Duane Miller's book, Out of the Silence, which tells the story of his healing from the loss of his voice after three years. He talks about being monitored on EEG for three months! I cannot imagine it! But if I had read the book before having experienced the monitoring myself--even though I have stayed at the hospital with someone else while she had hers done--I would not understand why the experience is so exasperating. At first, I was just bored because I couldn't move around and I was alone so much. But by the third night, I was beginning to experience a lot of other frustrations. Getting up to go to the bathroom was a major ordeal: climb out around the rails, pick up the EEG box that the wires were plugged into, walk around to the left side of the bed, roll the IV poll to the end of the bed, take down the cord going to the EEG box, go to the bathroom, make sure the door closed over the cord, go to the bathroom, wash up without getting the IV wet, roll up the big EEG box cord and tack it up on the IV poll, roll the poll back to its place, climb into bed... On top of this, my head had started to itch--and by Thursday I was so uncomfortable that I had difficulty sleeping once I was allowed to sleep. I felt a constant tingling sensation which was probably just my brain's way of telling me it had had enough foreign sensations a very long time ago. I understand a bit better why Duane spoke of his ordeal as part of a descent into what he calls a "pit experience"--he could not speak audibly at the time so did not have the luxury of talking with friends on the phone or (if he was ever sleep-deprived) keeping himself awake by singing all the verses to "There's a Whole in the Bottom of the Sea" and "The Green Grass Grew All Around."
I think I have had only a handful of seizures since last April. Considering the fact that I once had eight in one day, this is a significant improvement. I am still on 100 mg Topamax. I also had polyps removed from all of my sinuses, including the ethnoids, in April. I have had marked improvement in migraine and seizure control since that time. I would not be surprised to find that there was a connection.
I have gone back to school to work on my M.Div. I could not have done it without the seizure control.
Sarah J. Blake is a freelance writer who has published many articles online and in print about disabilities and related issues. She also writes about other health topics, disability issues, and inspirational and devotional topics. To see more of her work, visit her writing portfolio.
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