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 

slowly learning

I'm 53 and still slowly learning what my body needs. Especially since becoming severely disabled. That was (of course) a game changer. I've always been the person in a group to take care of everyone else. The person who thought of everything and planned it all. The first to arrive and the last to leave. Well no longer. Now you can bring your own Excedrin because I travel light. 

Out with good friends.

I feel very proud of myself. We had company last weekend and I really listened to my body and what I needed. I let my husband plan everything start to finish. Some examples of changes I made are:

• I did Karaoke the first night. It was an energy stretch, but I rested before and ate healthy right before.
• I rested the next day at my usual time. I also had coconut water, a V8 and lots of regular water. Again, I chose healthy whole foods to eat.
• The third day I went to the gym and swam with my mom. Just went about my business while my husband hung out with our friends.

For me the gym has become non-negotiable. Just like a doctor's appointment. I feel so much stronger and healthier in general. My mom does too.

Day two. Out for veggie sushi with friends post-nap.

I'm also learning I have a lot less pain when I avoid sugar. Easier said than done.

If I stick with whole foods I feel my best.

Using my tools and researching new ones has also been vital. For example. I've been having killer heel and achilles pain for a while now. All the exercises to stretch it out were just making it worse. That's because it's not just achilles tendonitis. It's Insertional Achilles Tendinopathy. What a shocker. One of the causes is "muscle weakness" in the foot. Stretching will just make it worse and more irritated. I learned instead what I need is shoes that elevate my heel and point my toes down.

My first time at Karaoke. It was such fun.

I only have one pair of shoes like that. Flip flops that I nicked off my mom. But I ordered some inserts that I can put in any shoe I like. That should be really helpful. I'll also keep off it in the pool. No more stretching that foot or kicking off the side when I swim.

This is all literally the opposite of what my muscular neurologist told me to do. Sometimes the doctor doesn't know best. Right away I was feeling relief when I put on those flip flops. Now I need to break my habit of walking barefoot around the house. Dang.

Point is, I'm learning to trust my intuition. My inner voice. Myself. Learning from my mistakes and caring for me. Putting myself first over the discomfort or inconvenience of others. And that's no minor thing. 

Asked for Help

I've definitely been feeling stronger and having more stamina since returning to the gym. I walked the dogs yesterday. A walk that I could barely do a month ago. One that left me in a lot of pain was suddenly (dare I say) EASY for me. I've also been able to stand still longer. Something that was incredibly difficult for me just a little bit ago.

Back in November I was seriously worried I would need to use my big chair again. Not that that's a bad thing. But it just means my muscles were very weak and I was feeling like I might need the extra help. We started bringing my travel chair with us wherever we went.  

All of this is leading me to weight loss.
I'm not going to the gym for weight loss. But to be stronger, more flexible, keep my muscles from atrophy and for my mental health. It's a special time set aside just for me and my body.

But I'm also not stupid. I know that the less weight I have, the less strain on my already compromised joints and muscles. 

My food craving have been just horrible as well. You would think the more I indulged them the quieter they would get? But I really think the opposite is true. So I asked my doctor for help (now I sound like one of those awful commercials.)

 My beautiful $149 pill bottle 
(with personal information omitted)

But I really did though. I asked if I could try the new Wegovy weight loss pill. All the others until now have been injections. I did try Zepbound injection a while back. The side effects were awful. I just felt like my digestion completely stopped.

I'm hoping that the brand and delivery change will be helpful. So far I have noticed a bit more burping and farting. But then again I am old. Hahahah. My doctor said she only had one other patient on it and that they were doing very well. The pharmacy told me that I'm the first for them and I'm to report back how it goes. So I'm a bit of a pioneer.

 LOTS of warning labels, but this aint my first rodeo.

Last night I had bad dry mouth. But that could have been from my fan blowing right in my face or allergies. I get dry mouth a lot, but it hasn't been that bad since I took Baclofen three times a day for muscle pain.

I hate to say it, but at 3:30 when I couldn't go back to sleep I paid the Devil his due (Amazon) and signed up for a one month prime membership. Just so I could get my dry mouth tablets (Zylomelt) delivered next day. I needed them bad for tonight. I'm not doing that again. Although I HATE giving the big A any money, my health needs come first.

 My nightly ritual

I was a bit stunned to learn you have to take Wegovy in a very specific way. First thing in the morning with 4oz of water exactly. Then you must stay upright for 30min. You can't eat or drink anything while the drug is absorbed in your stomach.

I measure out my water the night before and set the bottle next to it. Right after I take it I set a timer for 30min and keep myself busy. Blog, walk the dogs, write in my journal, tidy up. Man when that alarm goes off I am READY for coffee and water.

You're also supposed to have tiny meals, the first one being bland. Like a dry piece of toast or crackers or something. I'm already finding myself eating very small meals through the day. I think that could have been one of my mistakes on Zepbound. I didn't change my eating at all, then all that food just clogged up my gut.

Like the pharmacy, I'll report how it goes. 
Today is day 3. 

 

What I need right now

I adore being back at the gym. I feel myself getting stronger every day. I also feel I have more stamina. Something I was seriously lacking before. 

We go to the gym three days a week. I'm slowly increasing the difficulty and pace of what I do. Today was the first day I did a few minutes of stretching and water yoga before I got out. I forgot how good that feels. My back especially needed a good stretch.

 WOMAN POWER!

I'm feeling like a happy, beautiful princess. I love moving my body again. Feeding myself healthy, wholesome foods and of course, my red hair. I have such a "redhead" personality that I feel it really suits me. 

 I love being a redhead

I've been trying to pay close attention to what I need right now. And in the near future.

1) Move as much as I can every day. That's not to say push myself every day. A gentle dog walk or swim is perfect.

2) Avoid sugar and processed foods. They both make me just feel ick.

3) Gently push myself. Like slowly increasing my weights at the pool or staying in the garden a little bit longer. But don't over do it.

4) Eat a high protein, mito friendly short chain fatty acid diet. This is where I feel my best. Fresh foods, no preservative, berries all day every day. I'm like a bear when it comes to fresh berries.

5) Avoid gluten when I can. I feel really bloated and get acid reflux when I eat most gluten foods. I can even get eczema if I have too much of it.

6) Take care of my body. Lotion myself, eye drops three times a day, color or no color on my hair, gentle washing of my beautiful body...

7) Not eating an extreme diet. Like Vegan. That doesn't work for me. Also having a normal size dinner and eating at the table on weekdays. We can eat like slobs on the couch during the weekend. 

8) Eating almost no dairy. Goat and sheep cheese and rarely even that. I've cut wayyyyy back on cheese and I feel better for it.

9) Not obsessively weighing myself. Once a week is more than enough. It's about health and strength. Not numbers.

10) Having my partner and family also doing this with me. Swimming with my mom is so fun. We chat a lot while we work out. My husband is also eating exactly what I'm eating. That's so helpful. I like seeing him get more healthy too.

11) Writing in my journal, blogging, talking about my health, my body, my needs is very therapeutic for me.

12) Replacing ART with mindless eating. Making time during my busy week for art.  

 

Some of my delicious meals lately 

 

menopause

I never noticed before that menopause is such an accurate name. Because you really do feel like you are on a MEN - O - PAUSE. It could be the political climate or just hormones but in general I feel that all men suck. There are of course exceptions. Almost all of the men in my life I do adore. But I feel most interactions with men (especially older white men) just suck and end in me wanting to kick them in the nuts.

 Girrrrrrl Power! Me and Margo.

But I digress...
I just had a lot of lab work done and amongst other things (that I'll write about when I know more) I discovered that I am post-menopausal. At the very very tail end of menopause. Meaning my ovaries still sometimes kick some estrogen my way (lucky me) but in general I'm an official crone.

Welcome to the crone club Antoinette.
I told my son that I guess it means I can hex people now?

It's interesting because since my birthday almost three months ago now, I've been very much feeling myself transitioning into another space. Going through a liminal phase if you will. These labs confirm what I was feeling. Myself permanently saying goodbye to the motherhood phase of life and hello to being a crone.

 Back in the pool and loving it.

I find it so interesting and powerful that my sisters and I are very much the archetype for the Goddess in her triple form. The maiden, mother and crone. Look out when we get together.

I strongly feel my crone-ness is something to celebrate. Back when I first started menstruating a million years ago my mother took me and a friend out to dinner. Now I think we need to repeat the festivities.

Many women feel the sting of lost youth profoundly. I will never miss it. Being older and wiser comes with many gifts. I've had an eventful life and I don't mind if my face and body show it. Yes, I'll still color my hair from time to time. But that's more for art than it is chasing youth. I don't care how old I look in any way. It saddens me that so many women do.

I feel my new phase of life opening up to me and I welcome it gladly, thrilled that I've lived this long to reach such a milestone. 

Living my best life after a much needed trip to the bookstore.

I intuitively started buying myself flowers every Tuesday when I take my son to Trader Joe's. I think in a way I knew that I was worth celebrating. And why wait for a man to do something for you when you can do it yourself? MEN-O-PAUSE.

We've Got This

"In sickness and in health..."
My husband and I didn't include any traditional wedding vows in our ceremony 31 years ago. Luckily we both love each other enough to stick it out no matter what comes our way. Myopathy, brain tumor, TB, Diabetes, Liver Disease, Diverticulitis, COVID, a Regime in the US. I could keep going but you get the picture. 

 

My guy eats peanut butter as much as these squirrels love peanuts.

My man has been having some health scares lately. He's been pretty borderline diabetic for the last eight years. But this past year it was severe enough that he had to start medication for it and seriously avoid alcohol and carbs. He wasn't a big drinker before anyway, so we thought it wasn't too serious.

Then recently his liver enzyme blood work came back very high. He had an ultrasound that led to a diagnosis of fatty liver. We were both confused. He hadn't been drinking, he cut out almost all carbs and only ate white meat. What's going on? His doctor then ordered a different kind of scan and lab repeat. The scan showed that he has "severe fibrosis" in his liver. Which is one step down from cirrhosis.  

Everyone's body is different. He's also under a lot of stress and pressure with his work. And who isn't stressed out right now in America? I'm thinking that like me, he just had a strong reaction to something. Likely a combination of diet and environment. Fortunately also like me he is a "take action" kind of person, not a "wallower."  

Everything we are planning on doing to help his liver and diabetes is also good for me and my body. So it's really a win-win as long as we're serious and stick to the eating plan.

We both found this list helpful. 

He's now cut out all dairy and sugar. Going easy on fruits and heavy on veg. 

To help us out I subscribed us to a new meal delivery system. It delivers fresh made, organic, Vegan meals to our house weekly. Since I have a problem with portion control and getting enough protein in my diet I'm hoping this will be helpful.

So far I've tried out:

• Hungry Root- It had too much prep required and too much packaging.
• Misfit Market- Expensive, but I liked it. Especially their jalapeno hummus. 
• Thistle- My first delivery is Wednesday. It's also expensive, but all the shopping, meal planning and assembly is done for me. That will be helpful as my energy levels aren't great at night.

I'm also re-joining the gym this week so my energy at night will likely be even worse for a little bit. Having ready made healthy meals that fit both our needs will be a real luxury.  

Me living my best life in 2024

My mom and I are committed to going to the gym three days a week together. I'll start in the pool and slowly (hopefully) work my way up to Yoga class again. I got a lot out of both when we were regularly going.

Meanwhile my husband has been walking a lot more. He loves this mid 70's spring weather ((gag)) and the sunshine is good for his mental health. I'm less of a sunshine warm weather lover, so the indoor pool will be perfect for me.

My weight is currently at a good place and even though I'm just recovering from bronchitis and pink eye, I'm feeling pretty good. I'm hoping we can reverse my husband's liver condition. No way can he go before me!
 

(NOTE: I got nothing for linking to those food delivery companies. All my own opinion. No kickbacks.) 

Why Should I Care?

 

My necklace is a heart with "myself" in it.
A birthday gift from my man.

I love it. 

 

My mitochondrial disease affects me in many ways. The biggest is muscle pain, fatigue and lung issues. My neurologist seems to think that my immune problems and neuropathy are un-related to my mito. Go figure. The neuropathy could be from the TB treatment. Isoniazid for 9 months. Or it could just be from some kind of bonus auto-immune chaos. 

 

My point is when my mito disease hits other areas that are less important, like my skin. Why should I care?

 

I thought my "vagina neck" as I fondly call it, was just from aging. My husband would tease me that it bothered me. My mom didn't think it was from aging at all. When she saw this picture of me she expressed some concern and challenged my saying it was just from age...

 

 

Do you see it?
Total vag neck.

 

I'm also getting a little jowlie. So I did some investigating. It turns out she was right. Mitochondrial disease affects the collagen and elasticity of the neck, so sagging like that is part of the package. 

Muscle Weakness & Anatomy: The neck muscles, specifically the platysma muscles, can weaken and separate, causing prominent vertical bands. The position of the hyoid bone can also determine how much skin sags.

Muscle Weakness (Myopathy): Many mitochondrial diseases cause mitochondrial myopathy, leading to muscle weakness and atrophy (shrinking) in the neck and throat area. As the platysma muscle weakens, it loses its ability to hold neck skin taut, contributing to a sagging appearance.

Decreased Collagen & Elastin: Mitochondria provide the energy (ATP) needed for fibroblasts to produce collagen and elastin. Mitochondrial dysfunction leads to a "biological energy crisis," resulting in slower collagen synthesis and thinner, less elastic skin that sags more easily.

Mitochondrial Disease can contribute to the appearance of a saggy "turkey neck" by accelerating skin aging and weakening the underlying muscles. While mitochondrial disorders primarily affect high-energy organs like the heart and brain, they also impact the skin's ability to maintain its structure and the neck muscles' ability to provide support.

Apparently there are some exercises you can do that could help. Or I could just wear scarves. Or I just could not care. I remember last summer it getting better with swimming. Considering we're talking about re-joining our gym in a few weeks maybe that will help? Or should I even really care that much.