Medication Induced Depression

(I'm too tired to come up with a pithy title) 

Uh oh. The Lamotragine that I’ve been taking for seizures has had some MAJOR side effects. This is the first time ever that a “Black Box Warning” has hit me. And it hit me HARD. Hard is actually an understatement. It’s awful. As soon as I hit the maximum dose I became so depressed I was suicidal. It slowly creeped up as my dose increase. But it took me a while to connect the dots. Because at the same time I was also instructed to get off of Amantadine.

Amantadine has been a vital medication. It’s used off label for Parkinsons. But for me it’s very helpful for muscle pain and twitches/spasms. So being told to stop taking it has made me incredibly nervous. And for good reason. Exactly what I was concerned about happened. Though I was told that taking it would increase my risk for seizures. However, I’m at the point now that I really don’t care.

 My side effects from the Lamotragine have been:

• Horrible depression
• Urinary retention
• Headaches
• Insomnia 

After I felt like I should go to the hospital for suicidal thoughts I messaged my epilepsy neurologist. They said if it happens again to go straight to the hospital. They also decreased my dose from 300mg to 250. I’m going to very gradually go off of it. They can just put me on something else. It will take about a month for me to complete the decrease.

I am eager to say the least. I wish I could just stop taking it. But that is dangerous and can bring on seizures.

My depression used to be a zero. I would say that I had no depression at all (despite my challenges.) This week it was a 7-9 out of 10. Incredibly high. And I realized something. When I’m depressed I eat and eat. I give in to my food cravings 100%. And like the depression, at first I wasn’t connecting the two. Only the other day did I think “Maybe this is from depression?” That was after I consumed an entire 10 pack of Ding Dongs. By the way… they no longer wrap them in foil which is BULLSHIT. It also shows how long its been since I had one.

Pizza, ding dongs, crackers and cheese, peanut butter and chocolate ice cream, doughnuts. All have found their way into my house and into my mouth. It feels like one of those old “before the picture starts visit our snack bar” cartoons where all the food is animated and I just sit on the couch as they march right into my mouth. Jesus.

But I told my mom today. “I’m just going through so much right now that I’m giving myself a break.” I’m still weighing myself and logging it. I’m just not being hard on myself about that number. I know it will go up. Even if I’ve been gardening, swimming and working like a fiend on my house. That’s something else I do if I’m feeling emotional or not mentally well. I work on re-arranging my house and trying to “make it better.”

I’m back on a singly dose of my Amantadine. Next week I can increase it to two in the morning which was where I was at. Hopefully that will help my pain and muscle problems. I’m terrified that the depression will linger until I’m fully off the Lamotragine. Or even after. Fuck fuck fuck.

 

 

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 & Botox Update

My new neurologist completely shit the bed on me. I've had to cancel TWO Botox appointments now. Both of them because he didn't get the order in to my insurance. At all. Not even "on time." Nada. To say I'm angry is an understatement. His nurse swore to me that they would get it through now. But I have to wait for a letter of approval before I can get another appointment. And who knows how long that will take. 

If I'm ever seen by the clinic again (now I'm just being dramatic) I would still like a second opinion.  My muscular neurologist said it was "possible, but good to get a second opinion." 

Here's the information I found online: 

Absolutely — yes, it is possible, and in my specific medical context it’s not just “possible,” it’s actually clinically plausible in a way that both of my neurologists are recognizing.

1. Phantom cigarette smoke is a classic temporal‑lobe seizure aura

Smelling smoke, burning, or chemicals when none are present is one of the best‑recognized sensory auras of temporal‑lobe seizures.

It doesn’t diagnose seizures by itself, but in someone with:

• a left temporal‑lobe craniotomy,
• new stereotyped phantom smells,
• episodes clustering at night,

…it becomes a meaningful clinical clue.
My migraine neurologist wasn’t guessing — he was recognizing a known seizure pattern.

2. Nighttime seizures are extremely common

The brain’s electrical stability changes during sleep transitions. Temporal‑lobe seizures often:

• occur during falling asleep or waking up
• cluster in the early morning hours
• appear as “silent” or subtle events

So the fact that mine happen mostly at night actually fits the pattern.

3. A normal EEG does NOT rule out seizures — especially temporal‑lobe ones

This is the part most people are never told.

A standard EEG:

• lasts only 20–30 minutes
• often doesn’t record sleep
• can’t reliably detect deep temporal‑lobe activity

Up to 50–60% of people with temporal‑lobe epilepsy have a normal routine EEG.
My muscular neurologist was correct:
You can absolutely have seizures with a clear EEG.

This is why neurologists rely on:
• symptoms
• history
• MRI findings
• nighttime pattern
• response to medication

…not just the EEG.

4. My history makes seizures more likely

A left temporal‑lobe craniotomy means:

• scar tissue
• altered electrical pathways
• a region that can become irritable years later

Post‑surgical temporal‑lobe epilepsy can appear months or years after surgery.
So again — The neurologists aren’t reaching. They’re following the evidence.

I hit every symptom listed, including improvement with my medication. I haven't "smelled burning" since. Hmmmmm. 

 

Read Seizure Blog Part 1

Read Seizure Blog Part 2 

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. 

What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

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