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Life

Dealing with Epilepsy

On December 9 2019, I was officially diagnosed with Epilepsy. I suffered my first seizure November 9th, 2019, and had just undergone an EEG test. I was in no way prepared to walk down this road. Things are a little better now than 8 months ago, but it took a while to get to where I am now.

In total, I have experienced 7 seizures:

  • The first one in November
  • 2 in January
  • 1 in February
  • 2 in March
  • 1 in April

I almost don’t want to use the word “experienced”, because for all of these seizures I completely passed out and am only aware of them because I was told that I had a seizure – and then the muscle pain after each of them. It’s probably more accurate to say that my wife experienced them, and they just happened to me.

But I want to talk about my experience with epilepsy – everything that comes with it. I usually find that writing about things is the best way that I deal with them, and in this case I can probably also help someone else who might be new to it as well. Look at me, I say that like I’m “experienced” – I was only officially diagnosed eight months ago. This is new to me too!

Processing the Information

Another thing that helps me process things is to look at statistics. I’m actively trying to lose weight, so having stats at my back are especially great in that regard. So I want to describe my seizures in as much detail as I can, but I think I need to deal with how I have processed the information coming at me since November.

To do that, I’ve used a very helpful Android app called Epilepsy Journal. A short bit of info about it – it’s an app developed by parents who have a daughter, Olivia, who has severe epilepsy. You can read more about it by clicking through the “About Us” section of the app, should you download it. It’s a fantastic app – it lets you record your medications, your seizures, and you can generate reports that give you tons of information about your progress.

Here are my basic stats:

  • Current time seizure-free: 104 days, 11 hours
    • Last seizure: Apr 3 2020
  • Average time seizure-free (before now): 24 days, 10 hours
  • Longest time seizure-free (before now): 62 days, 16 hours
    • Nov 9 2019 to Jan 11 2020
  • Average seizure duration: 1 minute, 34 seconds
    • Max length: 3 minutes
    • Min length: 30 seconds

There is probably more information I could provide, but I feel this is the most relevant. To me it tells a fairly accurate story: I was feeling really great between November and January. Sure, I had just had my driver’s license suspended for medical reasons, but I knew I just needed to go at least 3 months without a seizure and I’d be on the way to starting the process to get it back and get behind the wheel.

But then on January 11th, another seizure. Two, actually, in the same night. My medication was increased by the emergency room doctors, and that’s what started at least one seizure a month. I was feeling my worst after the February seizure. What good was this medication doing, anyway? How come I was able to go two months without a seizure, and all of a sudden now I can barely go 30 days without one?

Not much has changed since February, except that I had an appointment with my neurologist (there’s a phrase I never thought I’d use: “my neurologist”) in March, and talking with her helped calm a lot of my feelings about the whole situation. I had another medication added to my arsenal, and even though I would go on to have another seizure after the appointment, I was expecting 1-2 more before getting to the full dose of the new medication. I can tell you for sure that it feels different to expect a seizure, than to hope you don’t have one.

The First Seizure

My first seizure came out of nowhere – a Saturday morning when I was cooking breakfast. A normal activity, nothing out of the ordinary for me. My wife was still in bed, and if I’m remembering right, so was our dog – just relaxing in bed while I puttered around downstairs.

The last thing I remember about that morning was laying down some bacon on the frying pan. Right now as I write this I don’t think I remember exactly how many slices I put in the pan – maybe it was three? Possibly four. The only thing that comes to mind is that they were wide slices.

But after that? I remember waking up in a stretcher, in the back of an ambulance. I remember being very confused as the paramedics helped me wake up. I vaguely remember the ride to the hospital – I think it was bumpy but it’s a little blurry.

What I remember is the bed in the emergency room and my wife beside me. There were also various needles in my left arm – an IV I suppose and also something to draw some blood for testing. I was taken for a CT scan – another first – and had a lot of information thrown at me. I was told my driver’s license would be suspended automatically because of the seizure. I haven’t driven since November 2019 – about 8 months now.

The pain I experienced after was probably the worst part of it all. I’m told I hit my back on a baseboard heater when I fell, which led to some of the worst back pain I remember feeling. I could barely stand up straight and it hurt to get in and out of the car. Luckily it didn’t last long, but I remember it well.

But that’s the most that I remember of the first seizure. I don’t know if that’s common for people who suffer seizures, but for me this has been the norm. I pass out, have the seizure, and then slowly come out of it, usually confused. The only differences is which part of me hurts (and lately, it’s been my left arm, which has been severely weakened since January) and once when I threw up. Fun times.

The Medication

To put it mildly, medication has been an issue for me. From the start, after the first neurology appointment, I was given the option to start on medication (this was before my EEG). I was told that not everyone decides to take medication for seizures unless directed to, mainly because of various negative side effects.

Given this information I decided not to go with a medication plan; but after my EEG in December, it was determined that I should start medication immediately. So started my first experience with antiepileptic drugs.

I was first introduced to Levetiracetam, which is the generic name for what’s most widely known as Keppra (often, I refer to what I’m taking as Keppra as a short-hand that I can pronounce). It has some seriously scary side effects. Here are some of the most common:

  • Feeling aggressive or angry (colloquially known as “Keppra Rage”)
  • Anxiety
  • Depression
  • Change in personality
  • Drowsiness

There’s actually a much longer list of “most common” side effects over at Drugs.com, but it was a bit disconcerting to hear described to you over the phone shortly after a first-time-ever EEG appointment.

If I’m being honest, I think I did feel the mood changing effects (which I was told only last for “the first few weeks”). I remember lashing out when I normally wouldn’t, or being more short with co-workers. Those feelings wouldn’t last long, and I’d sheepishly apologize after, but I can say for sure it was noticeable.

And that was just on a low dose. I’ve since been bumped up to 2000mg a day, which from what I understand is the max dosage. But it’s not stopping there – the name of the game for treating epilepsy is to find the right combination of drugs and see what works. Considering that a lot of these drugs are also used to treat people who are bi-polar, I can sort of understand why it’s a mix-and-match game.

I’m now on a second medication – Lamotragine – which apparently is meant to target ‘focal’ areas of the brain vs. generalized areas that Levetiracetam targets. The side effects of Lamotragine are a lot less severe, but they’re still present.

Another factor to this is that my neurologist doesn’t know exactly what she’s treating. She is trying to figure out what caused my epilepsy, but it’s still unclear. Perhaps in the future, she can figure it out, and have a better treatment plan for me.

Mental Health

This topic took me a long time to write. The biggest difficulty is because I don’t know how to write about it, exactly. I’ve definitely had some personal experience with different aspects of mental health, but I’m sure nowhere to the degree of people who deal with it every day. That’s the hard part for me. Who am I to talk about my experience with mental health?

Most of it relates to my main medication, Levetiracetam. I don’t have too many bad days anymore compared to the “early days” (which is only 7-8 months ago now). But apart from mood changes, there were times when I was just experiencing “too much”.

To explain it a little better…it could be something like having my fill of people, or maybe even just being in an environment that was too loud or busy. Usually the fix was as simple as moving to a quiet place or going home.

But there’s another side too, that relates to what I already wrote about – the anxiety of not knowing when another seizure will come. There was anxiety whenever I was getting close to the 30-day mark – at one point, that usually meant a seizure was coming, and I wasn’t sure whether I’d have a seizure or keep going without one. I could feel just a little bit of extra stress around the days leading up to that special number.

And then there was also frustration. I remember feeling frustrated that I had to start from zero again. I remember feeling frustrated that I’m already doing everything I can to prevent a seizure, and yet they still happen.

Others may be feeling it worse than I do, or struggle with mental health more than I do, but it’s real enough for me. I am just lucky and thankful that it doesn’t impact my life as badly as it could.

Wrapping Up

As I finish writing about my experience, I am now over 100 days seizure-free. This is a huge accomplishment for me, and I’m looking further ahead to October, when I might be able to drive again.

I’m in a good place right now. I’m sleeping well and getting better every week. I’m hopeful instead of fearful. In short I feel like I have some measure of control. Believe me, it’s taken a long time to get to this point.

I also know that I could have another seizure and just as easily restart my progress. That’s sitting there in the back of my head, and it’s something I have to live with. But I am choosing not to let that dictate how I live and interact with everyone else in my life.

In writing this account of my experience with epilepsy, I’m hopeful of two things. First, that it informs people who know me understand what I’m going through and how it’s affecting me. And second, that maybe it will help someone with similar struggles and know that they’re not the only one going through it.

I for one have got a lot simply from reading other people’s experiences in places like Reddit or other articles. If this doesn’t help, there are many other resources that can. Even recently I learned about a new term (Breakthrough Seizures) that helped me relate to what I’ve already experienced.

I’m still learning as I go.

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Guest Post Life

4 Simple Self-Care Tips to Improve Your Mental Health by Brad Krause

This post was submitted by Brad Krause. Brad is a full-time life coach who writes a lot about self care, which is something I’ve been big into in my own writing (if not in those exact words). You can find more of his writing at https://www.SelfCaring.info.

Image courtesy of Pexels

4 Simple Self-Care Tips to Improve Your Mental Health

With family obligations, deadlines at work, and meals to cook, sometimes we forget how important it is to take time for ourselves. But self-care isn’t selfish. In fact, taking care of yourself both mentally and physically can boost your health, prevent burnout, and make you more alert, focused, and present — all things that will allow you to perform better in every aspect of your life. Here are a few simple things you can do to improve your mental health.

Meditate

If you’re feeling rushed and overwhelmed, you may balk at the idea of meditation, but as Healthline explains, meditating can calm anxiety, increase optimism, and reduce stress. This is vital for your mental well-being, especially if you’re routinely tense. While everyone experiences occasional stress, chronic stress can be detrimental to your health. If you’re constantly stressed, you’re more likely to get sick, have digestion problems, or suffer from insomnia. 

Not sure where to start? Apps like Calm or Headspace offer a great way to dip your toes into meditation and reap the benefits to your mental health.

Make Time to Exercise

If meditation isn’t quite your speed, exercise is a great way to reduce stress. Regular exercise can give you an endorphin rush, boosting your sense of accomplishment and well-being. To really get motivated, fitness trackers can be just the ticket. 

As an example, the now-available Apple Watch Series 5 is a prime candidate. It monitors not only your workout progress, but also your heart function. There are integrated safety features as well, such as fall detection and the ability to summon help if you get into trouble. Or consider the Fitbit Versa Lite, which monitors not only your workout, but also your sleep patterns, and will provide you with information to help you make adjustments. 

Prioritize Sleep

When you’re rushing to get things done, sleep is often the first thing to get ignored. If you often find yourself saying that you can get by with just a few hours a night, reconsider — some studies show that sleep deficiency causes a whole host of problems. In fact, if you miss out on a good night’s sleep for just a few days, your brain begins to function as though you’ve been fully awake for 24 to 48 hours. 

Taking the time to sleep for seven or eight hours a night rapidly improves your brain health. It helps you learn faster, focus better, and make decisions more easily. Getting enough sleep also improves your immune system and allows your body to heal during the night, meaning you’re less likely to need sick days. So next time you start to prioritize work over sleep, take a step back — and if you can’t relax enough to fall asleep, try incorporating some soothing music or ambient noise into your evening.

Self-Soothe With Aromatherapy

While research into aromatherapy is still ongoing, Verywell Mind points out that using soothing scents can reduce the stress hormone cortisol and help people sleep. Lavender essential oil is a great way to calm your mind after a stressful day, but you can experiment to find the scents that work best for you — maybe you’d prefer a pop of citrus to energize you and clear your mind, or a more earthy smell like rosemary. Try using an essential oil diffuser or putting a few drops of oil on your pillowcase. 

If you choose to use pure essential oils in a household with pets, be sure to do your research first; certain essential oils can be toxic to cats and dogs. Scented candles are a great alternative if you’re concerned about the use of essential oils around your pets.

No matter how you choose to take care of yourself, it’s vital for you to continually prioritize self-care in your everyday life. Even if you’re busy, simply meditating for 10 minutes before bed can make a world of difference over time. Get sufficient sleep, add some exercise as well, and indulge in scents that revitalize you. Taking care of yourself means you’ll be happy, healthy, and better able to help the people you care about.

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Food Goals

Health Notes + Quick Dailyio Review

I’ve not seen very much progress in the weight loss department over the last 90 days.  My numbers have pretty much fluctuated up and down, meaning I’m more or less maintaining my weight rather than losing.  That’s fine, it’s definitely better than gaining.  

I know the reason for this too – I’ve not been properly tracking my calorie intake via MyFitnessPal.  It’s been a combination of a number of things – either I skip days entirely, or I only enter a portion of my diary, or I don’t record “treats” – the bottom line is that I’m not keeping track of what I’m eating, so I’m not holding myself accountable to the weight loss.  

In looking at my numbers, I think part of the reason for this is because I set my daily food goal too low.  It looks like I based it on losing 2 pounds a week – which is pretty aggressive, but it meant that daily I was only allowed 1690 calories.  That’s really low.  I asked some questions yesterday about what I was doing, and the person responding felt my calorie deficit was really high.  That’s when I looked at my numbers and agreed with them.  Helps to get outside perspective every now and then.  So I’ve done a reset, based my numbers on my TDEE – 500 per day (so the goal is: 1 lb per week).  

We’ll see how this goes.  I’ve also decided not to focus too much on the exercise front; I will be going to the gym, going for walks, playing some sports, etc.  But I feel that I’m putting too much emphasis on getting my daily steps in and I’m not getting as much reading done as I’d like to.  

Edit: My overall goal too is to help me feel more comfortable with the clothes I’ve bought.  I liked them in the store, but when I go to put them on at home for work, I don’t like the way they look.  So there’s a confidence thing going on too.

Daylio

I’ve recently started using the Daylio app.  I’m…not at all sure how they came up with that name, but it serves a specific purpose that I was looking for.  Namely, to track how I’m feeling.  Mostly I wanted to do this for days when I feel “down”, to try and figure out the reason behind feeling that way.  

I wanted something simple, quick, and give me the option to look back on it later to track trends.  I stumbled upon Daylio quite by accident, because I was originally thinking of tracking this kind of thing in my bullet journal.  I saw someone recommend Daylio and it turned out to be exactly what I needed.  

I stuck with the free version for a while, but they ended up having a 50% off sale – so I jumped on it and bought the paid version of the app.  To be honest, I think most people will be fine with the free version – I probably would still be using it for free had there not been a flash sale.  

But the app is pretty basic.  You open it up, add an entry (which is done by clicking on an overall mood and associating with an activity), and that’s it.  You can type notes if you want to, but it’s completely optional.  The simplicity of the app is what makes it great.  I believe the paid version opens it up to add more “moods”.

Overall it’s only something I recommend if you need a quick tracking app.  It’s not an in-depth thing that has a lot of utility.  I would say that if you need help with mental health in a serious capacity, this is not a solution.