I am not doing well this afternoon. I went to the neurologist this morning and got the results of my EEG. They were very upsetting for a number of reasons which I'd like to sort out. I'm trying to get past my fear of writing anything here. With these results in my hands, everything in me is just screaming, "Fake!" Part of me wants to just bury it all and pretend I'm fine because that's what Dr. R. said I am: fine. But I'm not fine and I haven't been fine for the past 20 years. All I know to do now is be so vigilant with the chart that no doctor will want to see it because it's too detailed.
Dr. R. began by asking the question I've come to hate: "Do you have enough Imitrex?" Yes, I'm fine on the Imitrex. I have had three migraines since April. For someone who had four to five migraines a week last year, this is a remarkable improvement. Since I know exactly what triggered all of these three migraines, I am fairly certain that at least two of them were avoidable--one was brought on by eating cheese and one came when I was off Topamax. 'Nuff said about the migraines. So
I asked for the video EEG monitoring because I realized that Topamax had an impact on some particular symptoms that I had previously assumed were related to migraine: slurred speech, disorientation, periodic "spacing out," balance difficulty, and occasional loss of vision. The episodes last one to 20 minutes. In July, my Topamax dosage was 100 mg/day, taken in two 50 mg doses. I remained at this dosage for four weeks and had no episodes. However, I experienced ocular side effects so dropped to 75 mg/day in three divided doses. On August 8, I had taken the wrong nutritional supplement which interacted poorly with Topamax and ended up lowering the amount in my system so much that I experienced no side effects for two to three days. I experienced significantly stronger symptoms followed by a whirring sound and a crying spell and amnesia for some events during the day despite evidence of having performed routine tasks. These symptoms are consistent with episodes I documented in 1986 and 1988, 1995, 1996, and since 2000. I did not document episodes at other times.
In 1996 and 1997, I sought therapy for dissociation and memories of mild sexual abuse which occurred during my teens and young adulthood. The abuse memories were eventually worked through to my satisfaction, and I do not experience sexual difficulties now. I continued to seek help for dissociative episodes for several years; but I feel that this problem has decreased significantly since 2001.
I have been treated for panic attacks since April and have tapered off my use of Xanax to less than once every two to three weeks. The above symptoms did not occur in conjunction with panic attacks. I have also been in psychotherapy for various issues related to coping with various sources of stress, including relationship difficulties, chronic unemployment, feelings of isolation, the impact of disability (including chronic medical problems), and adjustment following relocation due to the hurricanes in 2004. Dialectical behavior therapy has been particularly helpful for me; and I have moved from being unable to tolerate much distress to being able to tolerate what I consider a greater than normal amount of distress. It is not normal to be unemployed for the greater part of seven years, to live daily with the need to insist on appropriate boundaries with strangers who want to ask personal questions about disability, and to have unexplained medical problems. This is the life I live, and I proceed to search for ways to lead an active lifestyle and bring in small amounts of income where possible. I work part-time as a child care provider, am active in my church and other Bible study groups where I am slowly forming satisfying local friendships, am active on the Internet where I use my writing and research skills in areas of personal and professional interest which are satisfying, and maintain a clean and safe home and eat a relatively healthy diet of foods which I prepare for myself due to my intolerance of preservatives. I would assume that the fact that I am more tolerant of general levels of distress should indicate that if these episodes were stress-related they would be decreasing in frequency as the panic attacks have done.
All of these things are very important notes which can complicate my case, and I'm very aware of this. What I'm upset about is the lack of attention that has been paid in general to taking my history throughout the ordeal. When I went into the hospital last week, migraines were brought up immediately. "You're here for migraine prevention?" NO! No already! I felt like nobody really cared about finding the answers, and I wish someone would!!
Now on to the real problem... The goal of the testing is to catch the episode and see if it's a seizure. But for a person like me, the goal is to catch the right one. And I have to wonder if we even came close for a number of reasons. For starters, most of my seizures occur when I am in a state of activity, not when I am relatively quiet. This doesn't necessarily mean the answer is "stress"--some people's brains misfire in the excited state and others misfire in the relaxed state. So if I misfire when I am up and around and I am spending the week essentially not up and around, how do we propose to catch a seizure?
Second, the general atmosphere placed me in a state of anxiety: the yelling patients, the constant vigilance over whether I should report this or that funnyfeeling, the nurses coming in almost every time I got up and worrying about whether I was going to trip over my dog's leash, the shouting out of calls over the intercom, my brain's general response to unfamiliar tactile stimuli... I didn't note that I was having panic attacks, meaning my heart was not racing. But on the other hand, the episodes I had were not characteristic of the ones I chart at home with the exception of slurred speech. However, slurred speech is common in panic attacks.
Finally, I reported some things that I simply had never experienced before because I was afraid not to report them. I shouldn't have done this. I should have reported only typical things. Reporting the new things likely yielded a very skewed negative result.
So what is the result? I am fine. My EEG is normal. I think I'm supposed to be happy about that. I'm not. It means I'm back to the drawing board in terms of figuring out what's going on. If it wasn't for the results on Topamax, I would just stop trying. Dr. R. suggested going back to 100 mg and taking it in four 25 mg doses instead of two 50 mg ones. I'll try it and pray there are no eye problems this time. It's all I know to do. If I can't tolerate it, I'll have to drop back down and ask for another med.
I mentioned the problem with the history for a reason. The report states that the episodes continue despite the Topamax usage. This makes it sound like they are unresponsive to Topamax. This is something the tech asked me about, and I corrected him and said that the Topamax had been controlling them better but not completely at the current dosage. But the report was not corrected. So it communicates that the antiepileptic trial was ineffective, which is a cue for nonepileptic seizures. If this was true, I would have no problem admitting it. But it is not the complete truth. A vital piece of information is missing: that the episodes were controlled at a dosage that I did not tolerate well due to ocular side effects.
The report also says that no slurred speech was observed. Well, I don't know what they call slurred speech then. When people don't understand me, I call that slurred speech. When I talk like I'm overmedicated for a few minutes and then revert to normal speech that is animated and clear, I call that episode slurred speech. So do most people I know.
The end of the report does suggest "clinical correlation," or looking at my history in addition to this test because one test cannot be used as the sole diagnostic tool. Perhaps that's just safeguard wording; but in any case it isn't being done. I once again feel that I am being shrugged off, and I am very tempted to simply change doctors again and scrap this report.
Dr. R. did mention that the tech thought he saw spikes. I was not given the piece of paper that showed that information. Funny how that works... I'm looking into a second opinion; but if I can't get any definitive answers, I don't really know what to do. I can keep getting my meds as long as I stay with the doctors here; but if I ever move, I will have to go through all kinds of hard times with this if the symptoms ever change. I thought about just saying I had epilepsy... When I came here, I said I had asthma and I got inhalers. But if I had ever been asked for records of diagnosis, I knew where to get them; and asthma is a fairly provable thing when I have a peak flow meter showing 275 instead of 400.