“Are you telling me I was having 60, 70, 80 seizures a day?”
I’d been told my entire life that I was riddled with anxiety and panic attacks. They tried me on different anti-anxiety and even anti-depressant medications, to no avail. They were sporadic at first but seemed to increase in frequency and intensity over the years. By the time I entered perimenopause at age 40 they were out of control. I frequented even more hospitals, specialty doctor and psychologist trying to get them under control, but nothing helped. I had a hard time believing it was “just anxiety and panic attacks.” I was told hormones were playing a part so I studied perimenopause, hormone changes and how normal it is to experience these symptoms while going through the change. So, I came to terms with this is what was going on and just dealt with it the best I could. Fast forward to August 2013 and their “official diagnosis” was yet again be proven wrong.
Ben and I sat down with my epileptologist for a follow-up visit a week or so after being discharged from the hospital. I don’t think I will ever forget that visit. The doctor was looking down at his clipboard and writing. In the course of discussing what was going on prior to the tonic-clonic, I mentioned the adrenaline rushes. He said, “tell me about these adrenaline rushes.” I said, “I’m at the top of a roller coaster, the bottom gives out, I feel like I’m falling, I full body shake for 30-45 seconds and then it’s like it never happened until the next one hits.” The doctor then asked how many of these I had a day and Ben said, “I don’t know for sure but I’d say 60, 70, 80 or more.” Finally he asked, “how many of these have you had since I gave you that first shot of Keppra in the hospital.” I said, “I haven’t ha…..” My heart immediately sank, all the color drained from my face and shock set in. I asked him, “are you telling me I was having 60, 70, 80 seizures a day?” For the first time, he looked up from his clipboard as he responded with, “no, you were having hundreds.”
The doctor went on to tell us that during the 72 hour EEG, prior to the injection, I had roughly 10 minutes of normal brain activity in my right temporal lobe and he had to add it up to get there. These “adrenaline rushes” as I called them or anxiety and panic attacks as other doctors had diagnosed them were, in fact, simple partial seizures. My husband saw the initial EEG while it was being done when I first arrived and he described it as what you might see on a seismograph when there is a 9.5 earthquake. He knew it was bad didn’t really understand what it meant. I was in status epilepticus with simple partial seizures. I was almost in disbelief. Surely this one doctor and his test was wrong. After all, at least 20 other doctors agreed it was “just anxiety.”
I was going about my life like it was anxiety. They said if I ignored them they would go away. I tried, but they didn’t. One of the scariest things is I was driving during this time. Yes, driving while having hundreds of seizures a day. At one point Ben said I called him while driving (I use a Bluetooth) and said, “I think I’m getting Parkinson’s because my head is bobbing back and forth and I can’t stop it.” I am extremely grateful I didn’t wreck and kill someone or myself. But, I didn’t know it was epilepsy. Remember, the doctors assured me it was “just anxiety.” I went for at least 3 years having that many seizures a day. I should have died, but I didn’t.
Over two years after that first shot of Keppra intravenously and taking 750 mg of it twice a day I have not had one adrenaline rush. Even when I have issues with PNES or something scares me, it still does not involve this type of adrenaline rush. I see my epileptologist every 6 months and I make sure I tell him I’ve not had any adrenaline rushes. This is very important because these weren’t panic attacks. They were partial seizures and a warning that a tonic-clonic was coming. I asked my doctor if I would have another tonic-clonic and he said if I watch my partials then we should be able to catch it before it gets that far. So now, I pay close attention and watch for them. While it is still unpredictable I try to keep them at bay. I do my best to avoid my triggers, eat right, exercise and get enough sleep. I am certain if I get to the point of having these again that a tonic-clonic will be immanent and I know for sure I don’t want to have one of those again.
Am I angry at all the doctors for the misdiagnosis? I was very angry at first. How could they so negligent. Years and years of symptoms and just about every diagnostic test, except for an EEG. I even expressed this anger to my epileptologist. He said that most doctors won’t do an EEG unless a patient has a tonic-clonic and he told me to let it go.
I have let it go to some degree. I’d be lying if I said all the anger was gone, but I choose not to dwell on it. Instead I choose to use the energy to press forward, living life to the fullest, advocating and educating.