Tag Archives: seizure

Coming in from the Cold

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I have survived a stroke. I have survived a series of grand mal seizures. I have lain inert in a medically-induced coma for 13 days. I have survived three or four or five or six exacerbations of multiple sclerosis, unable to walk or hoist myself out of bed.

But what brought me to my knees, what made me unable to function, what made my world stop spinning….was the common cold.

I don’t know where I got it. I don’t know who gave it to me. I just know that it announced itself one evening as a little tickle at the back of my throat that trumpeted to my entire body, “Uh, oh.”

And my entire body moaned back, “Holy crap.”

I’m a bit superstitious about colds. It’s part of the reason I’m glad I’m not out there in the general workforce, breathing all that germ-laden air all day long.

It’s pretty well established that M.S. is related to an overactive immune system. And what is a cold? Your body’s overactive immune system’s response to a viral invader. Ipso facto I give colds wide berth.

I must admit that I do not know of any research pointing to a relationship between onset of colds and onset of M.S. exacerbations, but I’m not taking any chances. I will continue to wash my hands every chance I get, carry extra tissues with me, and spritz anyone who approaches me with Clorox. Not really. Just a little Lysol. Not really. Baking soda, I swear. Dissolved in club soda, that’s all. Really.

This cold walloped me right in the nose and then stuffed sawdust down my lungs. The combination reduced me to a slack-jawed whimpering tissue addict, knocking back large slugs of cough medicine every four hours. I set my alarm clock so I would wake up for the next dose. I had to reintroduce myself to my son after six days.

When the cold symptoms finally began to fade, I tested myself for the dreaded M.S. symptoms that might indicate an exacerbation. Did my toes tingle more than they usually did? Was I dizzier than I usually was? Could I even walk?

Living with M.S. is lots of fun. I have the kind of M.S. called relapsing/remitting. That means that it comes and goes, but every time it comes, it leaves you a little worse off when it goes. So my toes are always numb, and I am always dizzy, and always tired, and I can never walk in a straight line.

Then, if I get an exacerbation, all of that gets worse for a while. I can’t feel my feet at all, or my legs. I look like I’m drunk when I walk, if I can walk at all, and I’m so exhausted I mostly stay in bed. The cure, if you can call it that, is to stick a needle into my arm and pump me full of steroids. Those of course just plump me up like a Thanksgiving turkey, which, to be frank (and I’m a vegetarian), I’m rather thankful for, because eventually I am able to walk again and feel my feet and carry on a conversation.

And, oh yeah, before the steroids kick in, my eyes might crap out on me, too. That’s one of the signature symptoms of M.S., called optic neuritis, where the nerve that carries images from the eye to the brain swells up and you can’t see anymore.

I am happy to report that so far, so good. Just a cold. Just the normal numbness and dizziness and tiredness and zig-zagginess. Looks like we got through this cold spell unexacerbated.

Except I can’t get rid of this little nagging cough. I stopped taking the cough medicine when the sawdust went away, because there wasn’t enough of a cough left to justify the medicine, as tasty as it was (I could get addicted to Nyquil if I wanted) and as soundly as I slept (ditto).

It took me a few days to realize what the nagging cough was: the stroke-cough. It was the cough left over from the tubes that were jammed down my throat when I was unconscious in the hospital after the seizures and the stroke in August 2011. That little nagging cough was still hanging around.

Recognizing the stroke-cough was my first realization of a post-stroke marker. I had already checked in with my M.S. markers: numb toes, dizziness, fatigue, zig-zagginess, all my usual markers of how my M.S. was doing.

Realizing my relative dullness of mind and witlessness took a bit longer, of course. There are more layers of inert gray matter to pound through before active thought forms. Snap, crackle, fizz. Oh, yeah. A thought. Huh.

Speaking of which, that is another post-stroke marker: pretzel-thoughts. As its name implies, it’s a knotty one, or perhaps I should say naughty, as it tends to get me in trouble, or rather it tends to get my relationship in trouble, nothing that can’t be fixed, I hasten to add, because CF and I have 30 years of experience in getting ourselves out of trouble, dating way back to our favorite escapade when we nearly broke up over a can of black olives (I am not making this up) while sitting in our car at the side of the road.

It was very dramatic. I was wearing a filthy dirty softball uniform and it was a hot summer evening in Massachusetts and we barely made it through that fight but we still love black olives not to mention each other and I think I will wait until next time to talk about pretzel-thoughts because my M.S. markers are calling.

Got A Headache On My Mind

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There was a time a number of years ago when I got a headache once or twice a week. It drove me nuts. The same throbbing headache, pounding away across the front of my head. I couldn’t figure out what was causing them. Then one night it dawned on me: spaghetti sauce. Yup, that was it. It was the spaghetti sauce I was using. I haven’t had one of those headaches since.

Now, whenever my family has pasta for dinner, we each have our own sort of sauce. NF is still partial to my old sauce, CF has her own weird stuff, and I’ve switched over to pesto, eschewing anything tomato-based entirely.

Which means that by and large the only headaches I’ve had ever since have been migraines. They’ve been the classic kind: the spooky aura of rippling lights, as if The Twilight Zone was descending on you, followed all too soon by every hair on one side of my head developing a very sharp barb on its submerged end, trying to rip itself free of my scalp. Not to be outdone, one eye decides it’s time to swap places with its unwilling neighbor, which sets off a rather nasty tug of war. And of course, there are those three little aptly named bones in my ear, the hammer, anvil, and stirrup, one of which is pounding the other while the third goads them on.

Migraine medication is great, but you can’t take it until you know you’re about to get a headache, so there’s always that breathless period between the aura and the medication kick-in when you tip-toe around terrified you’re about to get very snarly.

If you haven’t had a migraine, you might find it hard to imagine what this is like. Well, imagine a nail gun positioned next to your head, ready to bang away at your brain five times a second unless you stop breathing. Yeah, that’s about it.

Since I had the seizures last August, I have not been able to take migraine medication because of drug interactions. I’ve had to rely on Vicodin instead. With Vicodin, the idea is to swallow it quickly, run to a dark bedroom, shut your eyes and try to fall asleep right away. Oh, wait, that’s what you’re supposed to do with any migraine medication. What’s the difference?

Oh, yeah, Vicodin makes you sleepy. Cool. I’m ahead of the game! But does it cure migraines? Nope. Not for me.

At least it didn’t cure these headaches. That’s because they weren’t migraines.

I’d managed to convince myself they were migraines, even though I hadn’t seen the aura or gotten nauseated, because they were classically one-sided and my eye throbbed, and anyway they were the only kind of headache I’d gotten for years. I’d managed to just disregard the whole seizure thing entirely.

Fortunately my neurologist is smarter than I am. And wonderful. She recognized that the solution to the headaches was to ante up the anti-seizure medication.

So far, so good. I really do not like taking all this medication, believe me. But if you ask me to choose between taking anti-seizure headache-curing Topimax and sleep-inducing yummy-making Vicodin, I will gamely choose Topimax.

But if you ask me to choose between no medication and chancing more seizures and/or stroke, I will swallow as many pills as you want. No way, no how, no never am I going back there.

 

The theory of devolution

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Huh. I got so busy blubbering away in my last blog post that I forgot to mention whether or not the M.R.I. results showed any more damage from the stroke or M.S.

Yup. More crap on the M.R.I. Pardon my medical jargon.

See, evidently, strokes “evolve.” This I did not know. I thought they stroked and that was it, but no, they evolve. They keep on munching out bits o’ brain at their will. Nasty little things. Mine “evolved” from 2 cm to 6 cm. And just to keep up with the Joneses, my old pal, M.S. decided to throw in a new plaque also.

This is where Darwin and I part company. I no longer believe in the theory of evolution, because I do not want this blot on my brain to get any bigger. It already feels dangerously close to the place where I keep information about old episodes of Cagney and Lacey.

It’s bad enough to know that everyone’s brain shrinks as they get older—it’s just part of aging. A normal brain kind of tucks in its edges as it gets older, so it rattles around in the skull a bit more.

But my brain goes at it with more than usual gusto. First, we have the stroke. The Blitz. The grand mal seizures (at least three) followed by the stroke that threw my entire brain into topsy-turvy land. That wrecked who knows how many millions of cells. If only my third grade teacher, Mrs. Clawson, was still alive! I sure could use a refresher in multiplication tables. Do you hear me, Mrs. Emily Clawson?

And then we have M.S., which gnaws away at the sheath that covers the nerve fibers in my brain, exposing them like bare wires to short circuit. Zap! You’re fried! The fun part is that it’s anybody’s guess where the gnawing will occur in the brain or on the spinal column, so what damage will happen is always a surprise.

Speaking of damages, Mrs. Clawson had a way with them. The first marking period of third grade, I got a C in science. I had never gotten a C in anything. My mother was perplexed, her faith in me shaken. During the parent-teacher conference, my mother demanded an explanation. Mrs. Clawson delivered.

“Well,” said Mrs. Clawson, in that chalk-coated, properly-punctuated way, “we did not cover any science this term; therefore every student received a grade of C.”

Surprise! You are a C student! Next, please.

Speaking of surprises, Mrs. Clawson always delivered one every summer. She always showed up one day in her bathing suit with her synchronized swim team, “The Ripples,” at our neighborhood pool to entertain us with their semi-coordinated dipping and dabbling. Believe me, seeing your 43-year-old teacher in her bathing suit and flowered cap is a sight you do not forget, especially if until this very week you were convinced she was nearing retirement when you saw her. All I can think of when I see synchronized swimming is my third-grade teacher being ridiculous on a hot summer day in New Jersey while I wait impatiently to swim. You can imagine the clever names we called the group.

Speaking of ripples, that brings us back to the stroke, which rippled from 2 cm to 6 cm, remember? And the rippling infections that came with it did even more damage. They impacted my pancreas. Ergo diabetes. Ergo danke shoen. Last night I dared to eat a mini doughnut that my son had left around. Ergo blood sugar chaos this morning.

Is there no end to the fun?

Speaking of fun, Mrs. Clawson evolved to become my sixth grade teacher, so she was my teacher for two of the 38 years she taught in my hometown. She lived to be 94, probably dipping and dabbling all the way.

Speaking of dipping, I’m trying to decide if I’m going to dip into another M.S. “disease modifying treatment” again, since the latest M.R.I. (see above) showed a new lesion, about which yippee. I’ve tried Avonex but gave up because it felt like I had the flu all the time (its best-known and worst side-effect), and of course I had to give up on BrainScar (if you’re not sure what that did to me, check the archives of this blog).

I’m considering Copaxone, which has been around a long time, and whose worst side effect is lipoatrophy. That means you might get dimples in your skin where you give yourself the little shot because the layer of fat under the skin gets flattened out.

Speaking of dimples, if I decide to start taking this drug, I will be sure to keep them out of sight. I get teased about dimples enough already.