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.

 

 

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

Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

When Stressed... ORGANIZE!

I have a beautiful coping mechanism when I'm stressed out. I clear through my crap and organize what I keep. My medications have been begging for a spring cleaning since 2018. Hah. And my bedside cabinet has been many things over the years. All of these got a good cleaning inside and out, then a thorough organizing. 

The biggest change however came with my daily medications. I've been bursting out of my pillbox for months and months now and I can never seem to find one big enough for all of my needs. Enter the small glass jar.

I scoured the internet for a gross of glass jars. Spice jars, tiny jam jars, but landed on these little "honey" jars. The shape makes them very easy to hold and the lid is simple for me to screw on and off. Unlike my pill box's which were very difficult for me to open and close. I was constantly popping pills out all over myself and the floor. Not good when you have animals in the house.

This is what I was using. A typical three time a day plastic pill box. I've been using this style for about six years now. I literally wear them out like shoes. Crazy.

Now each time of day and day of the week has it's own jar. I have tons of space in case in the future new meds or supplements are added on. Horary!

I used a white paint pen I had laying around for the top. I hope it stays. Ideally I'll put some kind of a top coat on it. Either using nail polish (expensive) or a Krylon spray. I'm hesitant however since neither are food safe. So for now I'll just be careful and see how they hold up.

I feel a weird sense of relief having all of my needs organized like this now. My fan is in position for summer breezes, I have Gatorade and bottles of water by my bed for bad days, I know where my "Pain" basket is and what's in it. Everything is all put away neat and tidy. This is what my "self care" looked like today.

It All Broke Loose

Uh Oh.

Day 2 went really good, but night the night time. At around 10PM I literally shit the bed. I had horrible diarrhea like I've never had before. Never in my life have I been unable to get to the toilet in time. I'm not sure if that speaks to my mito disease, or how bad it came on.

It lasted about 20hrs. I think it was because I was so scared of getting seriously constipated. I had put Metamucil in my protein drink, drank laxative tea twice a day and even took a stool softener. So now we know what happens when you make foolish choices like that. Nothing good. Nothing good happens my friend.

I was very lucky that my mom e-mailed me and reminded me about the large sanitary pads that she gave me years ago. I knew right where they where. They were a huge life saver! I don't know what I would have done without it. Maybe just camped out on the toilet for hours and hours. Ugh.

I seriously need to be more careful with what I put into my body especially. 

Pun intended. That was shitty.

Zepbound Day 1

As I mentioned in a previous blog I'm trying out the new weight loss injection Zepbound. I did my first dose last night before bed. I had some minor nausea, but then I was quickly asleep. 

I was warned by the doctor to be careful with how much fat and fiber I eat. Lots of fiber, very little fat.

Unfortunately my poor stressed out husband just got his labs back and they showed his blood sugars are back in the "diabetic" zone. So now is a very good time for both of us to change our ways. 

For breakfast I made myself a protein shake. In it was...

1 cup of each:
Orange juice
Oat milk
Frozen mixed berries

1 small banana

2 scoops chocolate protein powder

1 scoop of each:
Metamucil
Raw coco powder
Ground flax

Lastly 1/2 a scoop of Collagen (It makes the shake slimy so I can't use much of it.)

It tastes like a chocolate covered strawberry to me. Not bad at all. Just a bit gritty. 

That made 2 pints. I drank one and put the other in the fridge for tomorrow.

With this I'm having "Smooth Move" organic tea for constipation. Yes, herbal tea instead of coffee. I hope all this doesn't give me the opposite problem. Hahah.

Protein shake, tea and water.

I just got a new tattoo, so a lot of protein is important. Same with reducing my calories.

It's chicken salad for dinner. Wish me luck!

My new shark tattoo

Exciting Few Months

My life has been changing rapidly over the last months. Not leaving me much time for blogging. Fortunately for me all of the change has been good.

I HAVE A NEW FAMILY (more family? My family grew!)
I found out months ago that my birth father passed away in 2021. I learned this on Facebook. I would do occasional Google searches of his name just to see what he and my two half sisters were up to. We had no contact at all for over 24 years now. I Googled him and found a remembrance post by one of my sisters. I was very surprised as he wasn't that old.

I sent her a message even though we weren't "friends." I knew it was a big shot in the dark, but I was curious how he died and if it was something I should know about (like cancer or heart disease.) I said I was sorry to read that he passed. I knew they were close (by his pictures.) I asked how he passed. I said that even though I only met her and her sister once when they were very little, I always thought about them. I gave her my contact information and said it was ok if she wanted to reach out. More than ok really.

Then shock of all shocks. About two months later I get a message back from her. She apologized for it taking so long and said I ended up in some strange folder (just like I thought I might.) She said she and her sister have been looking for me and missing me their whole lives. She said our father would talk about me and had some pictures around of me, so they always knew I was their sister. They just didn't know why I wasn't in their lives. She said no one would talk about it. I'm hopeful he was ashamed of rejecting me. She said they would love to meet me if I was ok with that.

I was so excited and hopeful. But trying not to get my hopes up too much. I wanted to be a part of their lives and learn everything about them. I hungrily sought out pictures of them. Much to my surprise I look like a perfect mix between them. We met a few weeks after that. Just the three of us. John dropped me off so I wouldn't have to worry about driving. What a guy. The three of us bonded quickly. I had John take some pictures of us together. 

They are both partnered up. My youngest sister has a 10 month old baby boy. My middle sister has four children. Three boys and one girl ages 3-8yrs. I instantly became an aunt to five more kids. WOW! I can't wait to meet them all. That was delayed a bit because...

We went to Hawaii for our 30th wedding anniversary.

We just returned a few days ago. We had a magical time. We both agreed it was our best vacation ever. The ocean is just amazing there. There's nothing like it in California. The waters are tropical blue and so clear. You just stick your face in the water and there are mobs of colorful fish.

My fantastic mother watched the puppies for us and did an amazing job. They were so happy and well cared for. I couldn't have done better myself. I was able to completely relax and have full peace of mind while away knowing she was there for them. They were her full time job.

(We don't want you home Mom! We're being spoiled.)

I was able to enjoy vacation even more because...

I found a new supplement that is actually helping with my energy levels. Finally. Someone in my Adults With Mito online support group recommended it to me. I decided to give it a try and it works amazingly well.

It's called NR Nicotinamide Riboside. It's an "NAD+ Precursor." It's a member of the Vitamin B3 family. I take 300mg (1 pill) first thing in the morning. I was taking more but it was working too well and giving me insomnia. I get it through a company called Genex Formulas. At $38.14 a bottle of 60 pills it is well worth it. 

New family, new energy, new memories and 30 years of marriage. I could not be happier.

ADHD Follow Up

I had my long awaited psychiatrist appointment yesterday for my ADD. I didn't care for her very much, but I'd still say it went well. 

It ended up being a tele-visit which wouldn't be my first choice for a full assessment. Whatever platform she was on kept having buffering issues and I lost visual on her frequently. Not super professional. She was very serious and didn't seem to care much about building rapport with me. 

At first she also took issue with me having my husband in the room. She said "I need to ask you some very sensitive questions." Well, we're married, so there's nothing he doesn't know about me? It was very strange. I would openly talk about anything in front of my husband. 

This kind of attitude just perpetuates stigma around mental health struggles and I hate it. We all need to be comfortable talking about our mental and physical health with people we love and care about. Especially those closest to us. Not just closet ourselves off. 

So, you can tell I felt strongly about that.

What I did like about her is she was very thorough in her questions and she wants to be cautious with medication. I appreciate that. She's consulting with the head of her department because she doesn't know much about mitochondrial disease and I'm on some medications that can make dosage challenging if I'm going to try some ADD medication.

The medications we're considering are Guanfacine, Strattera and Ritalin. She's not sure about putting me on a stimulant because of my heart. Another could lower my already low blood pressure and the last could cause my vertigo and migraines to be worse. Greeeeeaaaaat. She tried to reassure me that heart attacks from Ritalin are very very rare. I told her I don't like to play the "rare" game.

So I'm not sure I'm going to end up taking anything for my ADD. We'll see. I'm in no hurry. I have a follow up with her on Tuesday.