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 

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

Fifth Brain Surgery Anniversary

Five years ago today I had a craniotomy for a benign mengianoma. In English... I had brain surgery for a non-cancerous brain tumor. It was growing in the left side of my brain just above my ear. The surgery was very long, but everything went as good as it could go. I documented it here.

I celebrated by spending the morning at the gym...

I work out for 2 hours almost every day.

Some kind of cardio for an hour, then swim for an hour.

Then I came home and had a delicious veggie burger. The patty was "mushroom risotto." Very unusual but so good. I ate it with the last of my sweet and spicy pickles. Fermented foods are important for me to have.

When I got home Max and I ran some errands. He's my best boy. I carried him in his sling through the grocery store, but he got to walk and explore through the hardware store. What a lucky dog.

"Go faster mom!"

Now I'm finally relaxing with a nice glass of Kombucha. It feels good to be off my feet. 

I like to remember where I was five years ago to make sure I savor each and every day. I'm grateful to be here. Thankful I can walk. Delighting in shaping my body to be strong.

CHEERS!

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

Botox Injections for Migraines - Take 2!

I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.

With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.

No shame in listening to your body!

Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).

How I've Changed

Humans are bags of squishy bacteria and water. We're sensitive and vulnerable. It's amazing we live as long as we do given our ability to succumb to the slightest virus, infection or change to our bodies. And we do change. All the time.

My body has been through a lot in its 47 years. Car accidents, a pregnancy, multiple surgeries, TB, brain surgery and a genetic mutation. Without modern medicine I would have died a hundred times over by now. But not only am I still here, my serious health issues have changed me... for the better.

I believe I am a much better person now than I was before I had Latent Tuberculosis or my brain tumor. I am far more patient. I let little things go very quickly. I have a lot more perspective and love for others. I'm way less shy and more outspoken. I am fast to let people know I love them (animals too). I smile a lot more. 

But why?
How?

Because I know now what's most important. It's not being first in line or looking young and beautiful. What's most important to me now is that the people I love KNOW 100% that I love them. That I leave strangers feeling happier and in a better mood than before they interacted with me. That I make the world a little bit better just by being alive. By being here and a part of it. That's what matters most to me. Not superficial, shallow stuff.

Each day I'm grateful to still be here. I'm appreciative that I have my beautiful wheelchair and medicine to help me feel better. Doctors who try and help me live my best life and a family I'm devoted to.

I hope I'm here for years to come because I love my life.

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

Hair battle

I have always had a battle with my hair. Even before I had any kind of illness. It has been every color of the rainbow (at least once.) Mostly I keep it pretty short or in a bob. It's very fine, straight and thin. I feel this limits me to what kind of style I can have. And don't even get me started on how many curly home perms I've had in my life.

When I turned 40 I was curious what color my hair actually was and I stopped coloring it... for a while that is. Then I would go back to dark brown or black, then grow it out again, then repeat this step over and over.

Then I had the brain tumor and no more color for me. Or so I thought. About a year later I tried organic henna and liked it. I've always been partial to red hair. So that was it! I was going to henna my hair every month or so and grow it out.

Orrrrr am I?

Honestly I kindove miss my natural hair color. And having a short pixie. It's so easy to care for (which is a really big deal to me right now) and I like the look. When I see a mature woman with a short pixie I think it's cute.

Here's what I'm sure of. I will never "box" or salon dye my hair ever again. I won't subject myself to chemicals. I like to play with my hair. It's a fun accessory that makes me happy. But I can't swear off changing it often or going back and forth on the henna or my natural color.

Post hair chop today

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Out and About with Ariel

Ok. THAT was an exhausting weekend, but incredibly fun. Almost enough to distract me from the fact that tomorrow is the roller coaster into my first 4 day, 40 hour work week in over 26 years. I'm a bit terrified. And lest we forget I'm also only 8 weeks out from  major brain surgery for a tumor. 

"Ariel" (my new folding, light weight, electric wheelchair) performed really well. Compared to "Dory"  she has a response delay to her controls and is a lot smaller (but that makes sense to cut the weight.) She has a lot of power and even managed to go over some wet grass today. I'm thrilled to have her and couldn't have done anything I did without her help. She's already becoming an extension of me. 

But isn't a picture worth a thousand words? My smile should tell you how happy I felt with my new independence and "assisted stamina." 

Pictures from a Christmas Light event in our town last night.

I went about 3 miles around town in her today. 

Problem Solving

The left side of my head where I had brain surgery is still puffy, even though this Thursday will mark 1 month since my operation to remove my tumor. I'm not sure why I thought having 3 plates and 10 screws in my head would NOT make it puffy for a very long time, but I did. I blame the whole "impatience" issue I struggle with.

I bought some beautiful new glasses very soon after my surgery, but I haven't been able to wear them because of the swelling on my head. The eye tech loosened the left side as much as she could and I thought that would be good enough, but each time I tried to wear them it was painful and I was left with a large dent right where my plates are. Not good!

Today I swore I'd solve that problem. I love my new glasses, I'm tired of wearing contacts all the time and I want to wear them. I was looking on Amazon for some magical solution when it occurred to me. "All I need is some kind of adhesive soft pad for the inside. FURNITURE PADS! I think that might work." So here's what I did:

1) Get out my furniture pads, tape (in case I need it. I didn't.) and small sharp scissors. Oh! and my glasses of course!

2) Cut a long pad to fit the length of the side just to the part that curves along your ear.

3) Place it on the side of the glasses, then measure and cut a thinner piece to follow the curve of the ear (a thick piece won't curve as well.)

4) Put the new thin piece carefully on the ear curve. Press both pieces down firmly to adhere.

Now I'm ready to see!

You can barely see the pad here. But that's ok!

YAY! Now I just hope they don't leave a dent. I'll try them tomorrow and see how it goes. Hopefully that's another problem solved. 

10/25 UPDATE:

Well, so... that did work and it didn't. Yes it made my glasses not hurt and it did provide padding, but apparently even that is just too much yet. It made my head really swollen the next day where I had surgery. I think the problem is that where the arm of the glasses go is RIGHT where I was cut into and where my plates are. So for now I'm back to contacts. -sigh- 

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.