Seizures! The Latest Trend!

I don’t think I’ve ever written specifically about what its like to have a seizure. I figured I’d satisfy your curiosity, since I had yet another seizure on Monday night.

When I first started getting seizures, I had this long period between my first seizure (conscious, but with expressive aphasia) and the big generalized seizure, another way to say Grand Frickin’ Mal or tonic-clonic seizure.

Expressive aphasia is a very strange thing to experience. The first time, I could say some things, but not others. I knew what I wanted to say, but it wouldn’t come out of my mouth. Eventually, my mind was thinking one thing but my fingers were doing something else entirely. I was filling out paperwork at the ER and I wrote my maiden name twice. I knew it was wrong, but I couldn’t get my fingers to write my married name. I don’t remember anything after that. The doctors were concerned I was having a stroke, so they took me right in (remember that little trick). Apparently they asked me if I knew my husband. I nodded. They asked me to write his name. I wrote gibberish. Then I had a generalized seizure. That whole episode – expressive aphasia to generalized seizure probably took 2 hours or so.

A generalized (or Grand Mal or tonic-clonic) seizure is the kind that knocks you unconscious. You shake around for about a minute, clench your teeth – usually biting your tongue or your cheeks, and wake up slowly – ever so slowly – trying to get your thoughts back in order. For me, I’m thinking clearly again and chatting with the EMT normally about the time we’re 5 minutes or so away from the ER at Stanford.

One of my seizure episodes was a status epilepticus – a fancy way to say I had repeated seizures without regaining consciousness between each one. If these aren’t brought under control, it could lead to brain damage or death. Which is a scary wake up call. ‘The brain tumor may not kill you, but this acquired disorder might!’ After this episode my medicine was changed (adding Lamictal) and I got emergency meds (Ativan) to help stop the seizures from continuing past the first one.

Since that status epilepticus experience, my expressive aphasia period (also a seizure, in case you missed that the first time) has gotten shorter and shorter. I now have a little fuzzy moment where I feel like a conversation is on repeat, my vision goes kind of wonky (the official term) and then I’m out cold. Not enough time for me to get Ativan in my own mouth.

I went for nearly a year and a half without a seizure of any kind. That record was broken in February and once more again on Monday. Ativan (placed in my mouth by my husband) did what it was supposed to do. The ER doctors (consulting with the neurologists) increased my medicine again – taking into account when I’m having my seizures (right around dinner time). They’re calling them break through seizures, not progression, so that’s good…I think. No one wants to leave me alone and frankly I can’t blame them. I’m not sure how that’ll work in the long-term, but we’ll figure it out. Our dog is lovely, but I’m pretty sure he can’t get Ativan in my mouth OR call 911. No service dog skills at all.

My mom is here now helping to drive us about and run much-needed errands (especially needed after our youngest got a nasty stomach bug last night). Her help came at just the right time, but eventually she’ll need to go home.

Seizures come in many sizes, shapes, and colors. Some are minor and some are not so minor. I’ve talked to people who have many a day, but they’re not the kind that knock you unconscious. I know there are many who have generalized seizures on a daily basis, which has got to be a living hell. Some of them are related to tumors or brain damage as a result of tumors/surgery and some aren’t related at all. But I do know that seizures are stupid however they’re delivered to your doorstep.

If anyone is looking for a part-time job babysitting a grown woman , let me know.

ALWAYS Knock on Wood

I mentioned in my last post that my MRI was last Friday. And it was.

The results showed little to no change in the inflammation they believe is there – i.e. its not acting like a tumor, so we assume it’s not a tumor. That makes sense to us, so we’re going with it. I am perfectly healthy otherwise – showing no symptoms outside the ordinary, so there’s no reason to believe it’s anything but inflammation. That would occur because of the vaccine or my body’s natural defenses – having an auto-immune disease may have it’s perks after all.

THEN I went and had a seizure on Tuesday. Out of the blue. I made dinner, sat down to eat with my family, we had a lovely conversation and WHAM! An ambulance was called (2 showed up) and off I went to the hospital. This time though, I was coming around by the time they were moving me to the gurney. By the time we got to the hospital, I was chatting with the EMTs like we were old friends. I donated some blood and pee, had a CAT scan, doctors were consulted, my anti-seizure drugs were increased and was on my way back home.

Two things came out of this experience. 1. Ativan did what it was supposed to do and prevented status epilepticus. 2. I am back to no driving – for an indefinite period of time.

(Let me clarify for my readers – when I previously mentioned that I’d passed the muster for the DMV, it was just an annual check in. I HAD been driving and they touch base each year to make sure I am still capable of driving safely.)

So, just when I think it’s all going so well, my brain reminds me that I’m still on the brain cancer roller coaster. ‘Don’t get too comfortable now, ya hear?’ Stupid cancer. Also, while I was bragging about how awesome I’m doing, I did NOT knock on wood. I’m pretty sure that’s where I got screwed. Remember, always knock on wood when you talk about how awesome your life is going.

Now I’m trying to figure out how to drop off/pick up two kids at two different schools on bikes or feet. The Valley Transit Authority will be getting revenue from me after all. And my friends and family may be called on to bring me on their errands (sorry!)

To quote someone very wise: ‘Crap on a cracker.’

Routine Disruption

Everyone gets into routines – processes that you do often enough that you don’t think about it when you’re going through the motions. Imagine your morning routine – shower (shampoo, soap, rinse, dry), deodorant, brush hair, etc…  You probably go through that routine without much thought. Occasionally, you forget to check if your shoes match or to pack your underwear to wear after a morning post-work out shower.

If you have children, getting ready for school is probably another routine. Such a routine is only modified by a sleepy, grumpy child who is unsatisfied with their clothing or breakfast options.

One of my routines involves taking medication twice a day to ensure I don’t have seizures. My alarms – mine, my husband’s, and my daughter’s verbal reminders – go off at regular times in the morning and night so that I don’t forget to take these essential medicines. If I have a seizure, I can’t drive for at least 3 months, I end up in the hospital, and if my seizure is not brought under control I could get (further) brain injury or worst case, die.

99% of the time, this routine goes off as planned. IF there’s a lot going on at the designated times (usually non-routine activities), even with all of the alarms, I can forget. My alarm goes off and I get up to take my meds and I get distracted between the family room and the kitchen (where my drugs are stored). I’ll stop to do any variety of things on that short journey from one room to the next and then carry on with another variety of things – sometimes ironically trying to remember . Forgetting the one critical thing I got up to do. My short-term memory issues create some risk with my high level of distractibility. 99% of the time, there’s someone around to remind me. Every once in a while that’s not the case, and I have to ask someone with a better short-term memory to recall whether they saw me swallow my pills.

Occasionally I have to leave the house before the morning drug ingesting hour and alarms. This is where the routine of the drugs takes over. I carefully dispense my handful of drugs to take with me. Then I grab my bottle of water and swallow them…early. The downside of a regular routine. While I still manage to get my drugs morning and night, they’re sometimes a little off in timing. The important thing is that they’re working and I feel pretty great.

But it continues to be a learning process. While the alarm system works very well, sometimes a fail safe is a good idea. This is where pill containers come in handy. I never thought that at 45 years old I’d be looking for the perfect pill container to organize my daily drug regiment. I’m looking for a pill container with a full week of am and pm compartments. There are so many choices, I’ll probably get distracted and walk to another aisle to find some shampoo.

And so the battle to live life with brain cancer continues.

Auras and the Dreaded Threshold

When I had my first seizure, I just had it – no warning, no aura, no nothing. Just BAM!

The second one had the mother of all warnings – we just didn’t know it.

One day, I forgot to take my morning dose of anti-seizure medicine. Around 1:00, I was trying to talk to someone and couldn’t get the words out of my mouth. They were very clear in my head, but I could not get them spoken. I could say some things, but not others. It was a very strange and scary situation.

I managed to get my neighbor (my hero and friend) to go pick up my kids from school and my husband raced home to take me to the ER. They were concerned that I might have been having a stroke or a brain bleed. At the hospital I was filling out paperwork…or starting to…and I kept trying to write my maiden name. I knew it was wrong, but couldn’t get the right name from my brain to the paper. It got worse from there and my memory got pulled into the fun. Since they thought I was having a stroke, they brought me in to see the doctor immediately. I don’t remember much more than glimpses after that. My husband tells me that at some point, after I couldn’t speak at all, the doctor was asking me if I could write down answers to the questions he was asking. I nodded, but wrote down nonsense. I eventually had a seizure.

Tests showed no brain bleed, no stroke, no new tumor activity – which meant that it was likely a seizure aura.  Some people have illusions, smell strange things, have deja vu. I had expressive aphasia.  It is not a typical aura, but is more often associated with brain trauma, tumors, stroke. My aphasia was gone after I recovered from the seizure, though I can’t say my memory became immediately crystal clear. I can only imagine how frustrating it would be to have expressive aphasia that didn’t go away when your brain came back on-line, so to speak. There are many people recovering from strokes or brain trauma who have to work long and hard with speech therapists to be able to say the simplest of things to their families.

It was scary for me, my husband, and my neighbor. They had thoughts that the tumor was back, that ‘this was it,’ that the other shoe was finally dropping. We knew why I had the first seizure and it (the tumor) was removed. I was on anti-seizure medicine merely as a precautionary measure. I only missed what was later referred to as a ‘baby dose’ – one ‘baby dose.’ All of this brought us into new territory. Because of the tumor and surgery, I now have a seizure disorder. A seizure disorder that’s now being controlled with more than a ‘baby dose’ of medicine.

I now wear a medical bracelet. We already had reminders set up on 2 phones, but my husband now sends me a text when HIS alarm goes off to make sure I didn’t turn MINE off, walk away and forget to take my meds. My kids and friends will ask ‘did you take your medicine’ any time I say I feel a little strange – usually I need to eat or have a teeny headache. We’ve learned a lot about seizure thresholds. Depending on the individual, that reduced threshold could be triggered by too much sugar, having a glass of wine, not getting enough sleep, taking allergy medicine, or any number of other things. For each person, it may be different.

We are trying not to be too insane about what mine might be – this isn’t something I’d like  to ‘experiment’ with to figure out. I may be erring on the side of caution, but I’d rather live without constant fear of compromising the threshold than risk it for the joy of having a cocktail. I eat well and stay hydrated, I don’t drink alcohol (except for the occasional sip of wine – I AM married to Wilder on Wine after all), I avoid sugar, I try to get enough sleep – naps are sometimes needed to make that happen, but they happen. We may continue to be a little over-cautious, but I think everyone feels a little better that way.