Full Disclosure Friday

The world is a scary place when you feel like you’re going crazy. Especially for someone like me who spends so much time wading through fictional worlds, getting to know fictional people and altering timelines and events that once held significant meaning… but I’m getting ahead of myself.

The Initial Problem:

On July twentieth, I had a grand mal seizure.

It may have been the first one I’ve had, it might not. That is still unclear. Either way, Earl woke up at 4:40 to a great gasp from me and then witnessed both tonic and clonic phases of my seizure.

I slept through it.

So when I woke up with blood on my face  (from taking a decent sized chunk out of my tongue) and Earl looking like he was ready to have a panic attack, it was strange that my initial thoughts centered around why it felt like I’d been hit by a bus.

I still went to work that day—a testament to my own lack of self-preservation. But I called a doctor’s office and got an appointment the next day because I’m pretty sure Earl would have dragged me to one if I hadn’t done it myself.

My Problem with doctors:

I have a lot of situational anxiety. I don’t like unknown environments and bad experiences tend to taint other experiences that are similar. So I didn’t have a normal GP when I set about finding a doctor to deal with the fact that I’d had a seizure. And unfortunately, the most convenient option I had for the appointment was a male doctor—which I tend to loathe.

My pediatrician was a man and he was great, but since turning eighteen, I’ve had a ridiculous time with doctors. Every male GP I’ve seen has dismissed me out of hand.  One went so far as to tell me I’m a hypochondriac (which couldn’t be further from the truth—I can be the queen of denial if I want to be). So having to go see this guy was less than exciting.

Once in the patient room, it only got worse.

There are people out there who I can only define as smarmy, and this guy was the epitome. He asked why I was there, and I had Earl explain what happened, since I wasn’t conscious, and then he asked again, what had happened, as if what Earl had told him was a cliff notes version that was obviously lacking.

It took the entirety of the appointment to get the guy to even admit that something was wrong with me and then he reluctantly wrote in my chart to refer me to a neurologist. He ordered lab work and sent us on our way. Overall, we left feeling unsatisfied.

That evening we discussed the possibility that he didn’t want to alarm us… or that he thought we were there in an attempt to get a medical marijuana card. We didn’t know either way, and just had to go with the general flow.

Down Hill from there:

I did the lab work and I got a call back the very next day telling me that I was severely anemic, needed to go back in for a second set of blood work (just to be sure), start taking iron, come back for a follow up and also to go immediately to the hospital if I passed out for any reason. Yay anemia!

Fast forward to the follow up appointment: If the initial appointment had been frustrating because the guy wouldn’t acknowledge my seizure, the follow up was even worse. Now he was gas lighting me. One minute, I’d never had a seizure, the next he was asking if symptoms had been present before the seizure (that I didn’t have) or if they had become an issue afterward.  The lab work came back with hemoglobin levels of 8.2 and apparently if you get into the 7s, you’ll need a transfusion.  He was freaked out by it and after I answered a handful of questions about other/related symptoms, he decided that I had colon cancer.

And there went my theory that his earlier denials of my seizures were an attempt to keep me from getting overly worried.

At this point, I was pretty sure the guy was a quack. I declined his insistence that I have a colonoscopy, and in appeasement agreed to up my iron dosage and come back for follow up lab work to see if the iron took care of my low hemoglobin levels. After that, I knew I was done with the quack.

A Neurological Lifeline:

So I went to my neurology appointment and the neurologist listened to what had happened, agreed that I had had a seizure, and informed me of something I hadn’t thought of…

If you recall, for some time I’ve been experiencing what I referred to as my 27s (if you don’t remember that, or weren’t around for it, follow the link and then come back once you’re caught up). It turns out, those things I couldn’t explain were partial seizures.

She didn’t give me any possibilities as to why I’d been having seizures, but it was a relief to have her believe me at all. With the memory issues I’d been having, I was starting to feel a little crazy. She put me on anti-convulsants, scheduled me for an MRI and an EEG and I felt like we were moving toward a solution.

When Life Takes Away Your Lemons:

 

I went through the process of getting the MRI and the EEG. 

I had my head locked in a cage and stuck in an enormous, noisy plastic donut after having the one ear piercing I can’t remove on my own taken out. I had a contrast injection that left me looking like I’d decked someone (he tried putting the IV in my wrist first, so I had some ugly bruises there too).

Earl drove me 18 miles (each way) to get diodes glued to my head and lights flashed in my eyes before I got to hyperventilate on command.

I set my follow up appointment and went to the last blood draw and final appointment with my quack of a GP. (It went as well as you can expect, I had managed to get in a normal hemoglobin range, but as soon as I mentioned that I was still constantly tired—a side effect of the anti-convulsants—he declared that I was obese and needed to see the on-site nutritionist. Anyway, he’s done, I’m never seeing him again.)

A Second Event:

Three days before my follow up with the neurologist, I woke up feeling exactly like I had on the twentieth. Earl was at work at the time, so I didn’t have any witnesses (Lucy wasn’t talking), but based on how I felt and the fact that my brain seemed to be stuck on slow-motion the rest of the day, I was pretty sure I’d had another seizure.

The follow up with the neurologist was… underwhelming.

While she agreed that I had, indeed had a second seizure, she didn’t have any other answers for me. She didn’t show me the results from the MRI or the EEG, She just told me that the EEG was inconclusive and that the MRI showed overall cerebral atrophy.

My brain was shrinking.

Again, I’m not the sort of person who flies at extremes, so the declaration my brain was shrinking was met by my own skepticism. I didn’t quite get how seeing one MRI of my brain could tell her that it had decreased in size.

The only concrete thing I walked away from that day was that she was upping my Anti-convulsant dosage.

I relayed all the information to my family as I had after every appointment and it was clear that the whole “shrinking brain” thing was of utmost concern. Between the strong worry of my family members and the general lack of information I was getting, it was time for a change. I called the Mayo Clinic and scheduled an appointment with their Neurology department… and then it was just a matter of waiting for my appointment to come around.

I’ve got an Insanity Defense:  

There are two weeks between when I start taking my higher dose of this particular anti-convulsant and my appointment at the Mayo Clinic. And after the first day on 2000mg/day I’m pretty sure I’d rather be having seizures.

When I don’t want to collapse into a heap from pure exhaustion, I get these awful waves of crushing sadness and incontrollable paranoia (which is not helped by the fact I’m forgetting things). I honestly felt like I was schizophrenic. The only thing keeping me from locking myself in a closet was the fact that I knew, logically that it was linked to the medication. If I hadn’t had that cemented firmly in my mind, I’m pretty sure I stood a chance of actually going crazy.

If you do a search for “Keppra Side Effects” it becomes pretty clear that this is ridiculously common.

I hate crying, so being on a drug that will cause me to spontaneously burst into tears is super frustrating. Add to that the fact that it messes with my ability to focus and makes me super scatter brained which has been affecting my ability to get things done on schedule…. Well, if I had another seizure while taking this higher dose, I knew there was no way I was going to be okay with going to the next higher dose. If medication works, I can suffer through some weird side effects… the ones that come along with this one, just don’t seem worth it.

It also made me so dizzy I don’t feel safe driving anymore, and drinking is not a possibility. One glass of wine and I lose my ability to stay upright (I’m still here mentally, but motor skills and equilibrium go fast)

Cutting to the Chase:

On Monday, during a 2 hour appointment with a neurologist at the Mayo Clinic, I received a clinical diagnosis of Epilepsy. Finally, someone was willing to put a name on it.

I also learned that my preconceived notion that epilepsy meant you had lesions on your brain was a complete fallacy, so the fact that my MRI had come back generally normal did not rule out the condition as my other neurologist had sort of hinted at.

To date, I know that I have had sixteen partial seizures and two grand mal seizures. It is possible there have been others. That, the general symptoms I’ve had surrounding the events and an in person evaluation, he was ready to diagnose me with Epilepsy.

We spent a lot of time talking through what I’d been going through and then we spent a lot of time talking about treatment options and also the things he wasn’t going to do (like run me through a bunch of tests that would cost me a bunch of money but likely show us nothing new). And then we spent a lot of time talking through a medication change. So I’ve started the long process of switching off the Keppra. And in 7 weeks, I might be off it. It depends on if the new medication produces an allergic reaction or not.

TLDR:

After a seizure in July, I’ve finally been diagnosed with epilepsy and am working toward a medication schedule that doesn’t turn me into a lunatic.