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.  

 

 

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

Five Years Later...

Sometimes I like to go back in my blog and see what was happening five years ago that month. In November 2018 I purchased my first wheelchair and received my first accurate diagnosis of Metabolic Myopathy. It feels more like ten or 20 years ago. 

The world was without Covid. I was still working full time. My mother was still living in England (not right around the corner.) Life was incredibly different.

Right now I have the luxury of time. I'm able to spend the bulk of my time rebuilding my body. I often feel like the bionic woman. Remember her?

I'm being re-built one trip to the gym at a time.

Five years ago my body was changing in ways that terrified me. Now I'm changing in ways that are thrilling. I see my muscles getting stronger. Change I can actually see! Daily! Change that I'm causing by my actions, not that I'm a victim of. It feels amazing.

Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

I'm the zebra

I remember early on at a medical appointment, the forgettable doctor told me the following. "We have a saying in the medical industry that if you hear the sound of hoofs look for horses, not zebras". She explained that what I was experiencing was common and not likely to be something rare. She was dead wrong.

I later looked up her strange "zebra" analogy to find it is taught in medical school in regards to "a very unlikely diagnostic possibility". I'm not a doctor, but do have a masters degree in my field of practice, mental health. What I was trained was to "consider all possibilities, listen to your client and rule nothing out". So why do we treat the mind any different than the body? Shouldn't doctors be looking for horses AND zebras? And are zebras really so rare after all? I mean... if you're on an African plain wouldn't you be shocked to see a horse instead of a zebra? 

To put that in medical terms. Maybe doctors aren't finding zebras because they're too busy looking for horses. Seriously. The example of the "unlikely diagnosis" is "When someone develops a cough, a virus or infection is a logical cause and tuberculosis is the zebra". As someone who has been treated for TB I find that to be a bad example. How about testing for all of it?

I mean how can a middle class Caucasian person living in a "safe" small city with good food and clean air not only contract tuberculosis, but also have Rheumatoid Arthritis, survive a brain tumor AND have a very rare muscle disease? (Yes, I'm talking about myself here.) I don't think I'm the only zebra at this watering hole. 

Doctors would be wise to rule nothing out and look for horses AND zebras. To take their patients concerns (and not "complaints" as another doctor of mine called them) seriously. And to admit when a horse really is a zebra. Come to think of it... I'm not a zebra after all. I'm a freaking zebra, unicorn, pegasus that poops rainbows! 

Living in fear

Wasn't there once a high school class called "Health and Safety?" I seem to recall making kissing jokes while people tried to perform CPR on a dummy. But that was a very long time ago.

Today with the Coronavirus all over the news health and safety are at the forefront of my mind. Not "stockpiling toilet paper" on my mind, but enough on my mind that I'm taking extra precautions. Given my heath issues I don't think it would surprise anyone if I just self quarantined till this was all over. But I'm not. Here's why.

Shopping at Costco with my cotton gloves on yesterday.

Five years ago I contracted TB. It's also an airborn virus that frequently kills people. Fortunately for me there was treatment for it, although nine months long and damaging. After I recovered and was about to return to work I developed a serious phobia. My phobia was about people coughing and being in close contact with others. Strangers were the worst. If I had to shake someone's hand I was left almost in a panic. I had developed a real germ phobia that was interfering with my life. 

What got me out of it was this. I realized that the fear of getting sick again was ruining my everyday life. My quality of life was going down because of fear. So I rationalized with myself. Told myself I can take reasonable precautions (not hug someone whose sick, buy an air purifier for my office), but that anything outside of hand washing and common sense was just me letting the fear into my life. I refused to do that so I decided not to. And that was it. Literally from that day on the panic stopped. 

Fear was telling me that I was going to get sick again. Something in reality I have very little control over. Zoom ahead five years and I still refuse to let fear dictate my life to me. No one knows how long they have. I could be in a car accident, get run over in my wheelchair, get food poisoning, have a stroke. I have no idea how or when, but I do know that I'm going to make the most of it and not live in fear.

I will wash my hands for 20 seconds, I will brush my teeth twice a day, go to my doctors appointments, use hand sanitizer and not be stupid. But I will not stock pile toilet paper, buy every Clorox wipe there is, or cancel plans I've looked forward to because of fear. Fear will not dictate my life or how I live it. That's a choice that I made years ago and I never looked back.

Rheumatoid Cachexia

I think I might have found what's going on with my muscle weakness. Last night I stumbled across something I've never heard of before called "Rheumatoid Cachexia."

The Cliff's Notes version of Rheumatoid Cachexia is that it is muscle wasting in people with RA. Sadly it's most common in people newly diagnosed with RA who are also overweight (ding ding ding!)

I found this blog on RA where the author says this about her experience:

"Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water." 

Her story completely mirrors what I've been going through. One day I can work in my garden and the next I can barely shampoo my hair. Funny thing is my rheumatologist told me that muscle weakness doesn't go with RA. Did I mention how much I'm looking forward to getting a new rheumatologist? I have a message in to her about all of this but my expectations are very low. About as low as my current physical stamina.

(Me being a mermaid a few years back.
Testing out my underwater camera before we went to Iceland.)

I read that the best way to fight the cachexia is through "resistance exercise" and eating a lot of fish. Checkmark on the fish increase. We've been doing that for a few weeks eating it about every other day.

(Our delicious cod fish tacos that we had for dinner last night.
I like to steam my cod in my rice cooker. It's super easy and doesn't make the house hot.)

As for the "resistance workout" part, I have my first physical therapy session tomorrow. I also still belong to a gym that has a heated pool. I need to get back in it. Swimming and aqua aerobics is fantastic for health and mobility challenges because it's easy on the joints. I can get resistance and still keep it low impact. 

I also asked my PCP if we should re-do my back images since the last ones were done 17 months ago. He agreed and that's on order. More time in the "fun tube!" (My pet name for the MRI machine.) My husband and I joke that we need to make t-shirts for the medical center that we have to go to for all our scans and testing because we're there so often. I think that would be hilarious. He said we could have the name on the front and "Let's hope it's negative!" On the back.

Humor is so important.

To Share or Not To Share... That is the question

I've had an RA diagnosis (Dx) for about a month now. I just started sharing the news with family. It took me a long while to think about how I wanted to share it, with who and what to say. And I wanted some time to pass for me to process it before taking on the reaction of others.

To share something like a medical diagnosis with others feels vulnerable to me. It means I may have to hear their thoughts, reactions and suggestions about what I'm personally going through. It also feels like I'm vulnerable to judgement.

Like a lot of people with chronic illness I feel like other people, even people who love me, might think I'm making it up, or it's all in my head, or I'm just looking for something to be wrong with me or that I'm a medical attention seeking hypochondriac. I don't know where I get those messages from, because no one has ever accused me of any of that before. But there you go... the fear of that message is there and I'm sure I'm not alone in feeling that way.

Here's the ideal way I'd love someone to react when I tell them about the RA Dx:

• What did your doctor (or rheumatologist) say about it?
• Are you taking any medication?
• Are you going through side effects? 
• WOW! How can I help you?
• That must be so hard for you, I'm really sorry to hear that.
• I'm here for you if you just need to talk about it and want support.

That said, my husband is amazing and did all this and more.
But what tends to happen (again, I'm sure I'm not alone in this experience) is the following:

• That sucks! Have you tried (weight loss, exercise, herbal supplement, fad diet, acupuncture, weed, etc...)
• My aunt has that too, do you want her phone number so she can tell you all about it?
• I have "arthritis" too.
• "You sure have a lot of health problems" (real talk: what my Aunt said to me when I told her.)
• Will it go away or will you have to be on drugs for forever?
• You're lucky, I'm sure it was caught early
• AND THE EVER FAMOUS RESPONSE: "YOU'RE TOO YOUNG TO HAVE THAT!?"

That last one will make me madder faster than any of the others. And it's also one of the reasons I hate seeing pictures of very advanced seniors for anything having to do with RA (which is everywhere all the time.) It just feeds into this myth that it's an "old people disease" or the same thing as OA. ARGH!!!!

Disclosure of something that affects my life in every way is not easy to do. I need to remember that what people do and how they react is out of my control. Providing them with information gives them the opportunity to be supportive and helpful. I know I get a lot of pleasure out of helping other people. So it's useful to look at it as giving people an opportunity to respond in a helpful way back to me.

When I do share with others I like to provide them with this link from the Mayo Clinic. It's a reliable information source that's an easy to understand overview. Then I tell them that they can ask me questions anytime.

A lot of my limitations come from the medication and less from the RA. So I share some of those side effects too (like having to keep out of the sun, being tired easy, etc...) I also make sure they know how easily I can get sick, that way they know to keep away from me if they have something (or at least to let me know so I can cancel plans if I need to.)

Having a brand new job I haven't told my employer yet. But my job isn't physically demanding at all (thank God!) If something comes up that's a limitation for me I don't mind advocating for myself. It's in a personal, intimate relationship that I find it more challenging to discuss.

Settling In

I'm a very organized person. It has served me well in the past. I'm also a big "list maker." I never go to a doctors appointment without my list of symptoms and a basic timeline. When you have a complex medical history (and occasional brain fog) I find it very helpful to do these things.

At home I also have a "master health binder." It has printouts of referrals, important labs, evaluations and even a back section for relevant scientific studies and suggestions. It has been incredibly helpful on my journey down the rabbit hole these last few years. It's also bright pink, which makes me happy.

I've spent the weekend resting, enjoying my little family and settling into the RA diagnosis that I received on Friday. I also researched Plaqunil (DMARD I'm now taking) and learning what I need to do and watch for now that I'm taking an immunosupressant drug. 

What I've read is that I have to super watch out for germs and I'm at high risk for developing pneumonia if I get sick. I bought some things to help me stay healthy at work and am changing some habits at home. I'll share those changes in another post when I have more to report on.

GOD of all GF crackers!

I have to take the pills with food and have found that these crackers are a life saver. Before going gluten free I was a big fan of Saltines. Like the Dad in "My Big Fat Greek Wedding" (his obsession for Windex) I was convinced that any tummy remedy could be cured with ginger ale and Saltines. Well, these are my new Saltines. 

I've also been getting pampered by my honey.

I'm not a big alcohol imbiber... Actually that's not true. I very rarely drink, but when I do, I tend to "indulge" a lot. No more of that on this medication. My rheumatologist told me 1 drink a week or so is fine, but no more than that. Since I don't really enjoy "1 drink" I'd rather skip it completely. Enter the "mocktail." 

This was as good as it looks

I couldn't drink when I was on the medication for Latent TB too, so I'm no stranger to the mocktail. I learned that when socializing without booze it's nice to have something that looks like what everyone else is drinking. It's also what I blame my rootbeer addiction on. For the record, Henry Weinhards is the best (even if they use high fructose corn syrup.) 

Yesterday was a bit of a weepy day, but I can say in all honesty that I feel worlds better today. It's amazing what a lot of love and a good night's sleep can do for your spirit. I've also been slowly sharing the news with some people close to me. So far they've been very supportive and understanding. 

I'll happily report back on the Plaqunil when I've been on it longer. I tend to be very sensitive to medications (and chemicals) and drugs tend to work very fast for me. Now if anyone has any tips for the fatigue, I'm all ears!

Feelings About New RA Diagnosis

Today my rheumatologist called me at work to let me know that with the combination of my recent MRI on my right hand the bloodwork she’s confident in saying that I have rheumatoid arthritis and she wants me to start taking medication for it right away.

I’m going to be starting down the path of DMARDS (anti-rheumatic drugs) that “suppress the immune system.” If that sounds serious, it’s because it is. But from what I’ve read it’s much more serious to not take medical action. I’m picking up my prescription for Plaquenil (Hydroxychloroquine) tonight on my way home from work.

She also said she doesn’t think the RA is what’s causing the neuropathy and that’s likely something else entirely. She feels we caught the RA early. That’s hopeful.

After the call I stepped outside to visit some dandelions.

So now the plan is to keep the appointment with the neurologist then go back to the rheumatologist after seeing that person to check in on how the drugs are going and if the neurologist added anything or found anything new.

I’m feeling many many things.
A sense of irony that I got the call on Friday the 13^th. Relieved to finally have a diagnosis and some sense of hope with treatment. Feeling this is unfair that I have to go through something else after having Latent TB just a few short years ago. Happy to have someone trying to alleviate the pain of what I’m going through. Lucky that she got back to me and that I even have access to medical care in the first place. Angry that it feels like this trip isn’t over yet and there’s still more to find out. Grateful to have such a supportive partner who “gets me” and is there for me. Scared about the side effects with my new job. I’m feeling all of these things all at the same time.

Overall I just feel like FINALLY one piece of the puzzle plunked into place. I was hoping that would be the whole puzzle, but at least I have that one f*@&ing piece to cling to. Some of what’s going on is RA and it can be treated. Not cured, but treated. But I am scared that the treatment will be worse than the condition. Everything I’ve read tells me “no.” That “treatment isn’t optional.” But I’m not a trusting person by nature.

I still have so many questions. Will I get any side effects? How will this medication change me? Will my RA get worse even with the medication? (many people are on more than just 1 thing.) How many drugs will I end up needing to take? What if the rheumatologist is right and there’s something else going on along with the RA? What if that’s worse?

I "needed" a treat after all the stress of the day.
Yes, that is a sport sock on my cup.

Don't judge me. It works.

Want to know what my biggest fear is? My #1 biggest fear is that I've spent the last 10 years learning, working and training for a career that I won't be able to do. What if "brain fog" takes over and I can't work? What if I'm too exhausted to be able to work very much? So yes, I have fears about those things. But I also remind myself that I live in a time with wonderful assistive technology. I also have a very non-physical job. It doesn't require me to be physical at all actually. So as long as I can talk and think, I'm pretty golden. You can't say that about many careers. 

I'm also fiercely independent, tenacious, persistent and resilient. All the things you need to be to do battle with any form of chronic illness. What chance do fears have against Ninja skills like that?