I will not be using accurate names or initials for any neurologist I worked with.
I remember my initial meeting with Dr. A, my first of four neurologists. First impressions really are everything and I was left with a bad one right off the bat. Honestly, I didn’t feel like she really took me seriously.
When I explained my symptoms, Dr. A looked at me and thought it was “so very interesting” and “definitely not a typical case of Epilepsy.” She “thought” from my description that I might have Simple Partial Seizures, but I wasn’t a “textbook case” so she sent me for an MRI.
Guess what? My MRI came back completely normal. No signs of damage or epilepsy anywhere. Great.
My follow-up appointment was about as useful as tits on a mule, but I still remained hopeful as she explained that “maybe” it was epilepsy. She prescribed Topamax and sent me on my way.
Oh the joys of Topamax. Aside from turning into a bumbling idiot, I also experienced random bouts of my hands and feet falling asleep. If I became hot, a ton of tiny water blisters would appear on my arms and stomach. Summer was intolerable. Working out was intolerable (at one point I tried Crossfit and the heat really made it unbearable). Apparently Topamax causes weight loss. Not for me. What’s worse was that it didn’t slow down my seizures at all.
The next appointment, I explained all my NEW symptoms and she decided to up the dose of the Topamax, despite my complaints about the side effects. She treated me as if I was a guinea pig and that was the last thing I needed. I contacted my family doctor and asked for another referral.
A few months later I was sitting in Dr. B’s office. She came highly recommended and apparently was an epilepsy specialist. I had renewed hope.
And then the hope went right out the window.
I won’t deny it. I weighed between 220 and 230 lbs. But I don’t think the first words out of a Neurologist’s mouth should be “Hmm…you need to lose weight.” Especially if the Dr. is a portly woman, not too far off from my (then) current weight.
I was too stunned to question her.
Speaking of, I need to back track for a minute. The time period between seeing Dr. A and Dr. B was difficult. I wasn’t convinced I had simple partial seizures. I did a lot of research. Was it the pre-eclampsia? When they performed the nerve block before my c-section, did that do something funky that affected my brain in some way? Hundreds more questions filled my head over that time period. Could my obesity have caused seizures? Maybe. But it’s not like I suddenly got fat when I was pregnant. I was overweight long before that and never had a seizure. So what exactly changed to make the seizures happen?
My husband and I kept a seizure diary. We recorded the days I had the seizures and how often during each day. We showed this to Dr. B and pointed out that my seizures increased significantly the week before my period.
“I don’t think that has anything to do with it. Are you sure you aren’t having panic attacks?”
Lord, if I could have reached across her desk and smacked her upside the head, I would have. I explained to her that I lived with anxiety for a very long time and that panic attacks were familiar to me. This was not a panic attack.
“I guess they could be non-epileptic seizures. Or complex partial seizures.”
So now “Simple Partial Seizures” was crossed off the list, and two different types of seizures were added. Dr. B also upped my dose of Topamax again, completely ignoring the fact that I was experiencing well-known side effects. Was this the ONLY drug on the market for seizures?
I also had developed a tremor in my left hand. I showed it to Dr. B and her response was: “That’s not related to your issue. It’s a red herring.” That was it. No attempt to investigate further or help resolve the issue.
There were a couple more visits with Dr. B that were fruitless. Another MRI. Lots of EEGs. Bloodwork and so on.
Dr. B referred me to the Epilepsy Monitoring Unit (EMU). I had no idea what that entailed, except that I would be monitored in the hospital for an extended period of time. Dr. B said the EMU would contact me the moment a bed opened up and they would give me 1-3 days notice. Lemme tell you how much my job liked that…
“Oh, by the way, I’m going to be needing some time off in the near future for an unspecified amount of days.”
They didn’t say much, but they certainly weren’t happy that I didn’t have any further information than that. Trust me – this particular situation gets way worse as the story goes on.
Somewhere around this time, Dr. B finally relented and agreed that the Topamax wasn’t working. She put me on Tegretol. Holy crap – if I thought Topamax was bad, Tegretol was 10x worse. It spiked my anxiety to such a degree that I couldn’t get out of bed without being terrified of everything and nothing at the same time. My husband called Dr. B and advocated for me since she certainly didn’t take my word for anything. You know what she put me on next? Topamax. Seriously. I guess someone with seizures only has access to 2 types of drugs…but I am digressing.
To give you an idea of where we are in the timeline, it had been about 3-4 years at this point that I had been suffering from seizures. I was frustrated and tired. I had already lost one job due to my illness, and while I should have sued the shit out of them, my boss had wads of cash and could hold up the legal process indefinitely. (Also, I did call quite a few lawyers from here to Toronto…none of them would even talk to me because of “conflict of interest” – seriously…leave some lawyers for the rest of us, you selfish, narcissistic piece of shit. But really, I’m not bitter.)
The EMU call finally came. I was settled into my “new” job for a year at that point. They were aware of my seizures (and were witness to at least half) and I had provided lots of information from my doctor to protect myself. I gave them 1 day’s notice. The EMU called on a Friday and I had to be there on Monday. There was no real scheduling for the EMU. A bed would open when the team felt like they had enough data and would send a patient home.
Unfortunately, month end was coming up and anyone who has worked closely with a finance department knows that month end is when all hell breaks loose. So they were one down and others would have to cover my work. Not a single fuck was given by my employer or coworkers about my health. They were too angry with *me* personally and not the situation. I mean, it’s not as if I was doing this just to ruin their monotonous, petty lives.
Do you know what it’s like to work in a place where your health issues are treated as an inconvenience? Where you can just see your employer chomping at the bit to find a legit way to fire you? Where you actually round the corner and hear your ENTIRE department talking about you under semi- hushed tones? Most of you probably do – the workplace sucks more often than not.
I try my best to maintain a solid work ethic. I felt as if I wasn’t being fair to my employer and coworkers by being sick. So, I’d work late hours and on the weekend to keep up with my work load and be less of a burden on my peers. Didn’t matter.
Anyhow, I carried my anxiety and guilt with me as I packed my bags and checked myself into the hospital.
The following 8 days would provide me with a glimmer of hope. Some justification. And, because you can’t have the good without the bad, confusion and division among the EMU’s team of neurologists.
-To Be Continued