The Epilepsy Files

 

 

So...

This happened last week.

It is a thing.
A new diagnoses to add to the delicious layered hamburger that has become my life. 

Kidding. 

It's more like a tiramisu. 

I hate tiramisu. 

 

I went to a new neurologist to get a second opinion. My new migraine neurologist (when he daned to meet me back in December) told me that he thought I was having seizures. He started me on Lamotragine right away.  

I thought he was wrong and totally nuts. But I took the Lamotragine anyway. I talked to my muscular neurologist who has been seeing me for years now for my mitochondrial dysfunction. I asked her what she thought and if I should get a second opinion. She said that she felt seizures were possible, but supported my getting a second opinion. She made the referral for me to see a specialist neurologist. 

Humor helps me get through hard news. 
I did get the Chinese food I wanted. 

Fast forward many many months and I finally got in to see her. She asked me a slew of questions. Taking her time and being very thoughtful. They conducted a neurological exam on me. And wanted to know more about my memory problems, "blanking out, zoning out" and me smelling things that aren't there. 

 

This resonated with me in a MAJOR way.

At the end of her check up she declared "You have epilepsy." That's a big, scary word for seizures. In fact the first, migraine neurologist had said "silent seizures" which makes it sound even better. Like comparing a tiny sweet dog to a slathering doberman. Silent seizures vs Epilepsy...

She then rattled off a very long list of things I need to do and can no longer do. No driving for a minimum of four months. Until I'm stable on medication and seizure free. Completely seizure free. No baths. Showers only with the bathroom door open and someone home. (Good thing I don't live alone!) Cooking on the back burner of the gas stove only. No going on ladders or high places with no railings. No swimming alone. It just kept on going. I felt like I was trying to get a sip of water from a fire hose. 

She said I need an ID bracelet saying I have seizures. So I treated myself to a new pretty one. You have to treat yourself, right?

I've given you the facts, but I didn't say much about how I feel. I guess I'm still processing it? I know I'm far from the only one in the world blessed with stupid health. But it can also feel lonely. Almost like one more thing to put a wedge between me and my husband (who is relatively healthy and very able bodied.)

I also feel like now all the symptoms overlap so much that I can't tell what caused what. What's the biggest problem? The one screaming the loudest? If they're all screaming in one body, how can I tell.

She said that the types of seizures I'm having directly correlate to where my brain tumor and surgery were. She said that it's likely scar tissue that set it off. 

 

The left temporal lobe. These are post-surgery MRI scans. The new seizure neurologist wants me to do a new brain MRI since I haven't had one in three years now.

2018 to 2026. So even though my surgery was eight years ago, it is still hugely impacting my life. My migraines, pressure sensitivity and now seizures. Oh yeah! And I can't scuba dive either. Well, I couldn't do that anyway because of the plates in my head.

This is getting hard for a mermaid who wants nothing more than to go back to the sea. Luckily she said nothing about snorkeling.  

 

 

Seizure EEG

So I had my EEG this week. I don't recommend them. The flashing light and hyperventilation were a lot more taxing than I had anticipated. It left me exhausted for about 24hrs. But when you stop and think about how much energy goes into forcing yourself to hyperventilate for three minutes... Well... I shouldn't have been surprised. 

Collage and pictures courtesy of my mom/driver/personal assistant/fairy Godmother

I'm constantly shocked by my lack of stamina. Even this many long years after my diagnosis. I think that could be some kind of body dysmorphia. I see myself as far far far more capable than I am. Always. In any situation. "Sure I can lift that couch by myself. Absolutely I can walk a mile over rough terrain. You bet I can swim across that canal. I'm invincible!" Or maybe I'm just hugely optimistic? We'll call it that and not pathologize.  

However, I digress.

I did the EEG and the report came back normal. My husband joked that "Nothing about you is normal." But I have paperwork saying that my little brain is. YAY!

A normal EEG doesn't rule out Silent Seizures. Bummer.

Now I'm going to just hold off on taking anything for seizures until I talk to Dr. Williams, my muscular neurologist at the end of this month.

One invasive medical appointment done. Nothing else till Botox for migraines hopefully resumes next month. IF my insurance approved it. 

New Diagnosis

I saw my new migraine neurologist yesterday. He's changing one of my migraine medications. He's also hopeful that I can keep on my current medication and just add Botox back into the mix. He's trying to get it approved with my insurance right now.

He also said that he thinks I'm having "silent seizures." That was big news. This past year I'd been having a problem where I smell cigarette smoke and I'm not around any. It lasts days, one time it lasted about a whole month. I haven't had it happen since September, but I still brought it up.

He said given the location of my craniotomy and my symptoms he thinks it's seizures. He said it's quite common due to the scar tissue and brain injury. No one told me about that. I looked it up when I got home and he's right. It is fairly common, even 10+ years after your craniotomy. 

He ordered an EEG and wants to start me on Keppra to keep the seizures from growing. He said it's like a little forest fire that we want to contain before it gets out of control. 

I had no idea that's what was happening. My husband was skeptical and thought he might be seeing something that wasn't there. But he was positive enough to get me started on Keppra right away. 

This weekend is my mom's big 70th birthday. We're going away to the city for the weekend with her girlfriends. I'm very excited about it. So I haven't really processed this news.

Looking back on my blog I've had many diagnosis through the years. A few of them even stuck! Mitochondrial Dysfunction, Brain Meningioma and now this. Thank the Goddess I didn't really have Rheumatoid Arthritis. I think there's plenty going on.

I don't think it will feel real until my medical chart is updated with the records and a new diagnosis. Meanwhile, I started the Keppra. Don't want that fire to spread