I'm STUFFED

I've been struggling with constant constipation for a long time now. Many medications I'm on cause constipation. Then I typically take emergency muscle relaxers or over the counter (OTC) pain relievers. That doesn't help the situation.

I believe that the stress I've been under with all the side effects from the Lamotragine I was put on for my seizures backed me up even more. In short, I was at a crisis point with my poor bowels. I had tried everything. I do mean everything to get them going again. Nothing was working.

As a last resort before calling Telehealth (again) I tried this anal suppository. And WOWZA did it work. If this happens again I think I'll use half, or even a quarter of the recommended dose. I am no longer stuffed.

 

 

This is part of the order I placed for Target pickup yesterday. I told my mom that the person making the delivery out to our car must have howled with laughter that I ordered both a frozen pizza and anal laxative. Mom and I cracked up for the rest of the way home. She said I must write a blog about it and take a picture. She made this perfect image for me to use. Thanks mom.

 

What would I do without her?

 

Not have this craving itch scratched for sure...

To be clear. I did not eat the pizza. I made myself lentil pasta instead. It wasn't great. That's the good thing about a frozen pizza though. It will hang out till you're ready.  

 

Now that I have a belly full of doughnuts and an empty butt I'm ready for a restful day. Hopefully this will re-set my system. Gluten can do that for me too. So SEE?! The doughnuts were really medicinal. 

 

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