Seizure Disorder – My Rules for Daily Life

First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)

Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.

Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.

To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them?  Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.

Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.

Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…

Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.

A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.

Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.

Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)

Note: if you’ve not yet seen or read The Princess Bride, do so immediately.

Childhood Anxiety

My son’s reading light has developed a ‘twitch’. It behaves like a strobe light when you first turn it on. Eventually, after some effort, it behaves like a reading light should. While in strobe light mode, I cover it up with my hand – sensitivity to the flickering on my part. Last night, he asked me to not cover it up because he liked it when it flickered (this is the kid who wanted to put the Instant Party Machine on his Christmas list when we got yet another catalog in the mail.) I explained that the light hurt my eyes when it flickered and I wouldn’t remove my hand. He asked why so I explained that for some people, that strobe light activity is hard on their brains and can sometimes trigger a seizure and I wasn’t taking any chances. Keep in mind, my kids have seen 2 of my seizures and have to walk home from school because of them. After we finished our book and were snuggling before he fell asleep, he asked if he was going to have a seizure. I explained that he wouldn’t likely have seizures in his lifetime. I went into a little more detail about why I do and what we’re doing to avoid another. He was confused why I had a seizure BEFORE I had brain surgery – but finally understood after I explained a little more detail. He had an ‘OH, now I understand’ moment and went to sleep peacefully.

As an aside – my desire to put the 7 person tricycle from that same catalog on MY Christmas list was nixed. I thought this was unfair and tried to make the argument that surely we could find 7 people to ride it with us. No luck. Clearly it was a matter of where to store it rather than the $20,000 price tag.

Back to the anxiety… This morning, I woke up and had no voice (thank you lingering cold.) I woke my children up with whispers. My daughter was unfazed. My son, remembering the expressive aphasia preceding the grand mal phase of my seizures, was not quite as unfazed.  He asked if I was ok at least 4 times. I explained in a whisper that I was fine and had just lost my voice, but it would likely come back later in the day. Unconvinced, he kept a close eye on me while we went through our morning routine. Once he saw that the routine hadn’t changed and I still had enough awareness of the time – 5 minutes to get glasses and shoes on, so move it! – he finally relaxed.

While most of the time, our kids handle the new me and all that comes with it calmly and bravely, every once in a while the anxiety comes through. It’s a reminder to us that we need to check in from time to time and remind them that all is ok and they can always ask questions if they’re worried about something…anything. I don’t think this is necessarily unique to our family, so remember to tell your children you love them and look for the signs that maybe, just maybe they need to talk about their worries.

Fear and Loathing in My Brain

After my little adventure a week and a half ago, I’m feeling a greater level of fear than I have in a while. I didn’t skip any of my medicine, I was feeling pretty great, celebrating a good MRI and yet I ended up having a ‘life threatening’ seizure episode.

I know the seizure event itself will knock me on my ass for a few days, but I’ve also increased my medication. It takes a while for my body to adjust to that as well. I find that I’m hyperconscious about every feeling, sensation, pain, or even thought I experience. Before my most recent episode, I was focused on speech, memory, mood as indicators that the tumor has returned. Now that I know that my expressive aphasia is a seizure and not an aura AND I’ve been instructed to use emergency meds to ward off a full blown seizure (or more terrifyingly, a series of life-threatening seizures) at the first sign of an aura, I’m ever aware of every sensation. Dizziness, nausea, sudden emotional changes, rising sense of cold… I may have had some of that before, but what got my attention was not being able to speak, and we’re aiming for whatever happens before that.

I know that lack of sleep and anxiety are risk factors for me, based on what we know at this point. But I feel like I’m starting over, trying to figure out my threshold for seizures – do I have other triggers that I’m not aware of? There are so many possibilities. Food additives, food sensitivities, smells, hormonal changes, certain sounds, barometric pressure changes, insulin levels, and so on. Then there are the possible auras: deja vu, numbness, tingling, sudden nausea, anxiety, fear, suddenly getting hot or cold, weakness, lightheadedness, strange smells or tastes, bright lights, blind spots, sensitivity to light or sounds, along with cognitive changes – like aphasia, just to name a few.

As a migraine sufferer – I’m experienced with the concept of triggers or early warning signs – but somehow the urgency to figure this out is greater…something about ‘potentially life-threatening’ I guess. Our trip to the Farmer’s Market was cut short yesterday because I ‘felt weird’ – a sense of cold rising up my body immediately before some panic and shaking set in. We’re a little gun shy, uncertain, and overly cautious, so Ativan was taken and we promptly went home. I’d be more confident about warning signs if I had full energy back and some sinus congestion didn’t make me a little wobbly.  I’m usually pretty in tune with my body, but this is a whole new set of symptoms, meanings, and risks.

We see an epileptologist tomorrow to learn more about what’s happening and what we can do to avoid another seizure. I have a feeling it won’t be a fully satisfying visit – questions unanswerable, mysteries of the brain, etc…  If he tells me I should wear a helmet, I’m going to be very disappointed.

 

In other news: We are already more than half way to our goal of $10k for the National Brain Tumor Society Silicon Valley Walk. I am feeling the love and support of so many friends and family. So, I’ve got that going for me, which is nice. Very, very nice.

Consider joining us or making a donation here:  EveryDayLeft Right Left

 

 

Good News, Bad News

I had my MRI on Wednesday this week – my first in the 12 week interval schedule. Given the hospital construction, things are a little discombobulated. The MRI machine I was taken to was in a trailer in the parking lot. I felt like I was being brought into one of those cheesy traveling carnival rides – like a fun house. Otherwise, it was the essentially the same experience as all of my other MRIs.

There were some changes in my brain since my last MRI, but nothing concerning – they assume it’s still healing and scar tissue and not new tumor growth. So there’s the good news.

I was so excited that I decided to celebrate by having a seizure and spending the night in the hospital.

Apparently my seizure aura (warning that a seizure is coming) really IS expressive aphasia. For those of you who don’t know, that’s when I can’t get the words from my brain to my mouth to speak or hands to write. (I don’t remember any of this, mind you, but it’s what I was told happened.) I went inside, lay down and could speak again. Then I couldn’t. When I got up to go to Stanford (my husband driving), I had a seizure. I go all out with mine – full grand mal. Then I had another…and another. An ambulance was called and I had another in the truck as I was carted off to the closest emergency room. Tests, drugs, and some more drugs later I was determined to be healthy – essentially no strokes or brain bleeds and since I’d just gotten my MRI results, we knew the tumor wasn’t back. My anti-seizure medicine was increased. I was kept for observation overnight and had the joy of being woken up from my drug induced state every couple of hours all night long.

There is some speculation about why I had a seizure since I didn’t miss any doses of my meds and we had proof the tumor wasn’t back. Exhaustion, stress, migraine were all brought up as possible triggers. I refrained from saying, ‘that giant hole in my brain doesn’t have any impact?’ One question I had was why my aphasia would go away when I lay down. I don’t think we got an answer. I don’t remember most of those 24 hours, to be honest.

Eventually, they decided to set me free. I’ve now come home to rest, recover (every muscle in my body is sore) and get my head around losing my freedom of driving again. Anyone want to carpool?

We see my Neuro-oncologist on Wednesday, so we’ll hopefully find out more then about what this exciting event does to our treatment plan.