BEHIND the Smiles

Coming off Lamotragine has been a nightmare. I still haven't heard from any of my doctors. I first reached out to my migraine neurologist on June 8th. Eight days ago. It feels like months.

You know the popular sign "Keep Calm and Carry On." Well my motto is "Keep Busy and Ignore it All." I smile and keep as busy as I can, ignoring my side effects. 

I'm still swimming with my mom. Walking the dogs. Cleaning my house. Shopping for groceries. Doing laundry. 

Lamotragine withdrawals can feel worse in people with mitochondrial vulnerability because the nervous system has less metabolic “buffer” during medication transitions.

I need sleep, electrolytes, pacing, gentle foods.

What often helps during lamotrigine withdrawal:

• Slow nervous‑system pacing — gentle, predictable routines reduce the “electrical storm” feeling. Short, repeated cycles of rest → light activity → rest help stabilize symptoms.

• Hydration + electrolytes — withdrawal can worsen dizziness, tremors, and headaches. Many people find that steady hydration with balanced electrolytes (not high‑sugar drinks) reduces the intensity.

• Sleep protection — even small improvements in sleep architecture can dramatically reduce withdrawal symptoms.Think: consistent bedtime, low light, warm bath, magnesium glycinate (if your doctor approves).

• Gentle sensory regulation — lamotrigine withdrawal often heightens sensory sensitivity. Noise‑canceling headphones, dimmer lighting, weighted blankets, and predictable sensory input can help.

• Blood sugar stability — dips can worsen tremors, irritability, and mood swings. Small, frequent meals with protein + complex carbs are often easier during withdrawal.

• Very light movement — walking, stretching, or pool therapy can reduce the “wired but tired” feeling without overloading your mitochondrial system.

I feel like this is going to be a very slow process. I don't do well with being patient. But I'm going to do my very best. 

 

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.

 

 

Way back when there were dinosaurs

About 20 years ago I decided to take up running. I was a healthy 35 year old. All of my in-laws ran at the time. And somehow I got sucked into the magazine Runners World. They had really excellent articles. So I thought to myself if all these people can run there's no reason I can't too.

I went to our local running store (yes, we have one of those) and was "fitted" for personal running shoes. They were so comfy. I wore them for years. Once properly outfitted I gave it a try.

At first I fast walked not very far. Then I did a little jog. Then came my Fitbit and headphones. Because I was getting serious. I was a successful jogger! Next I worked on my form and finally became a runner. I had other women friends who ran too. We decided to sign up for a 5K.

Here comes the interesting part.
The whole time I was running, even before the 5K, I noticed that my right hip would hurt for no reason. I tried everything to get it not to hurt. Stretching, slowing down, favoring my left side... but nothing helped. I even stopped running and just burst into tears one day. What was I doing wrong?

The day of the 5K came. I even made us all matching hats. You can guess what happened. My friends (at my urging) left me in the dust. My hip started to feel like it was on fire. Every second of that run was torture. And I had no idea why.

I had practiced. I had stretched before the race. I wore my "special shoes." I read the magazine. I did everything right. 

One of my friends who had finished the race actually circled back around to encourage me to finish. I did, but I walked across that finish line. I got passed up by a heavily pregnant woman and a person dressed in an inflatable pickle costume. I got passed by a pickle.

I was humiliated that my friend (wearing jeans and converse shoes) came back to get me. I hated my body that I felt had completely betrayed me. Looking back I wonder...

Could it have been my earliest sign of mitochondrial disease? Does it go back that far? Even further? My mom says I was a very sleepy child. I remember falling asleep in class all of the time. In high school I would go to the nurses office during PE just to get a nap. Eventually she said I couldn't do it anymore.

Maybe I had mitochondrial disease my whole life and it just super worsened with TB and my brain tumor? Who knows.

I do know that when I walked the dogs today I had that exact pain. Now I recognize it as a feeling like my hip muscle just can't hold my hip bones into place. It feels very weak and painful. That exact same pain as 20 years ago when I tried to be a runner.

After that 5K I stopped. Something I don't regret. My body obviously isn't made for running. It's made for eating peanut butter and chocolate ice cream

 

Finally Some Good News

 My coffee the other morning. I treat myself.

Good Goddess...

I've been battling with my neurologist and health insurance for almost seven months now trying to get back on Botox. You have no idea how much work it's been. Phone call after phone call. Disconnections. Wrong people. I finally got some headway about two weeks ago when an agent from my health insurance was committed to helping me. She told me what had gone wrong. The neurology department kept filling out the request form wrong. And how to fix it. So then I finally found the billing person for neurology (after asking for them a million times.) WE GOT TO TALK. That was key. I told her what insurance told me to tell her and gave her my amazing customer care agent's direct phone number.

And guess what came today? Take a wild stab at it.

MY BOTOX GOT APPROVED!

I never had this issue with my old neurologist. I will give Mr. Screwup kudos for discovering my seizures. But man. What an endeavor that was. AND I got a notification two weeks ago that he's leaving. He was hardly there. I was really shocked. It made me wonder if he was causing all kinds of billing problems? Because at my one and only appointment with him he said that he could get me Botox and keep my pill treatment. I was specifically told in the past that it's one or the other and insurance won't cover both. He bragged that he absolutely could get it through.

Hah. He couldn't even get my Botox through. Loser. Bragger. Useless.

Some doctors are like that I've found. Just in it for the ego boost. I knew some therapists like that too. I think in "powerful" jobs where people depend on you, you can find that type of person. Of course along with others who just genuinely want to help people (like me.) 

Lesson learned. 

That's a lot of shots to look forward to. 
But it helps.

#1 Run from a bragger. The next time I get a doctor like that, I will ask to see someone else as I leave.

#2 I can literally do anything. I am a strong ass, persistent woman who can make anything happen. Just like my mom. She taught me well.

Now to get my son on disability. 
Cross your fingers (and toes) for us.

 

 

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.  

 

 

Happy Mother's Day

One thing about parenting an Autistic person that no one tells you about is all the holidays you will miss. I never had my son wake up at the crack of dawn thrilled to open his Christmas gifts. Or hear the crinkle of cellophane as the Easter Bunny creeps into his room with a massive basket. It's not that we didn't do lavish gifts that an only child experiences. It's that he didn't notice and didn't care that much about it.

My sweet boy. 
I knew something was "different" about him even at this age. 

When he was little, Daddy took over the job of making him do my card and a gift for Mother's Day. But now that he's 32 that's gone with the wind. Don't get me wrong. My husband still treats me like a QUEEN every day and especially on Mother's Day. Because he knows that's something I'll never get from our son. Not for a single day. Not my birthday, not Mother's Day. My mother also always gets me a Mother's Day gift because she knows I'm a good mom and that my son won't do anything to mark the day.

 

 He still is this brave. 
I am proud of him every day. 
Well... almost every day.
 

There will be no "taken out to lunch" by my son. No flowers. No card. Maybe he'll remember and I'll get a text saying "Happy Mother's Day." But that's if I'm lucky. 

My sweet mom and amazing husband do their best to fill in the gap, but it's still a loss that I feel every year. It's one of the glaring moments that shine a light on the challenges of being Autistic. I honestly feel worse for him than I do myself. He's missing out. Missing out on the closeness that other's take for granted. It's just him. Alone. In his own world.

When he was little I once told him that I constantly feel like I'm holding onto a rope that's tied around his waist and I'm pulling him back to the "real world" for fear that if I let go he will completely slip into his own dimension in his head. He agreed that that's exactly what it felt like for him too.

 

Monterey is still his favorite place. 
We need to plan a trip and go soon.

His novels actually explore that theme very well.

But again, it's all about him. 

You share a life when you have a child. Not to share that life, but to still have them physically there is both odd and upsetting. I do a good job of trying to always see things through his eyes. But once in a while that is hard to do. Like on special holidays.

Now that he's an adult I never expect him to participate in family events. I let him know what we're doing and make the offer. But usually it's too crowded, loud and busy for him. Even with headphones and his laptop with him. I get it. Again, from his point of view. But as a mother, of course I would love to have my son there. I'm proud of him. He's an amazing person. I wish more people knew just how amazing he is.

But I'm the one holding the rope. In reality it's always been just him and me. And I'm sure it will be that way until the day I'm no longer here. 

No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.