This entry provides an update of my theory that my epilepsy medication is causing my body to physically fall apart.
As an update, it’s now been a week of me being off Briviact, the epilepsy medication I’m theoretically allergic to, and also a week of being back on the only other medication (Levetiracetam) which prevents seizures.
And I am still alive and also right-handed.
I mention this because one of the crazy symptoms I had been experiencing which I hope was due to this theoretical allergic reaction also involves the folly of hand dominance.
I aim to be ambidextrous. I regularly try to use my left hand often.
Why? You know, just in case I lose my right hand in some medical or freak accident (so many ways to lose a hand, ranging from diabetes to traffic accidents to a ninja fight for which I was ill-prepared).
I had an opportunity to engage in some left-hand-strength-building because last week I dramatically cut my right hand’s pointer finger because that’s the finger that I always cut and also because my skin is like tissue paper lately.
Having tissue-paper-skin thing is one of the weird physical changes I’d been experiencing which I continue to hope was due to the Briviact medication.
I mean, I cut my finger on a dull, plastic, empty peanut butter jar edge while I was cleaning it out to recycle.
That’s so sad. I mean, the finger was CRAZY CUT in three directions.
I just stared at the cut on my finger because I didn’t even know how that had happened and watched my blood peek out and think about exiting the wound but then… it had second thoughts and withdrew to circulate elsewhere.
I have very lazy circulation.
OR maybe I’m running out of blood so I don’t bleed because that would be a waste of my precious supply.
That thought would have been impossible to me a few years ago but my dad walked around without any blood for God knows how long… so when he finally crashed, and, after they finally noticed, he was given two successive blood transfusions because he didn’t have any blood.
The emergency room doctor told us that he had no idea how my dad had been walking around without, for all intents and purposes, any blood in his body.
So perhaps my recent lack of bleeding is a lingering med side effect or a reality of having really shit circulation, but maybe it’s because I’m super low on blood and yet also functional which is a family thing.
We’re essentially reverse-vampires or vampires who really suck at being vampires.
Anyways… I treated and put a band aid on my cut finger and, because I don’t want to get the band aid wet, I have been using my left hand to wash my face.
However, no matter how often I use my left hand, the rest of me just isn’t cool with its use.
As a result, one day I ended up snorting a big glob of Noxzema.
That was terrible.
But also, take that, brain! That’s what you get for being inflexible.
In any case, after a week of being off Briviact, I am feeling better.
Sidebar: I used to be a private person so talking about bodily changes on the internet is a new thing for me.
At the same time, I told all the adults at my high school graduation party that I was going to be a forensic pathologist before CSI became an eternal, everlasting network commodity.
I was ahead of the trend and into blood, guts and dead people before it was cool.
Thus, I shouldn’t mind talking about bodily functions online and I’m also great at detaching my mind from my body so… here are the details of my case study of me.
My body continues to not produce seizures, so both the Briviact and the Levetiracetam technically “work”.
And, one week after the med change, I’m experiencing some positive things.
For example, over the last four months, I have been losing my hair at an exponential rate.
I have to cut out my hair from the vacuum every week because – if I didn’t – the quantity of hair inside the vacuum’s mouth would impede the vacuum’s function.
A BRIGHT SIDE OF NOT HAVING A DOG IS SUPPOSED TO BE THE LACK OF HAIR EVERYWHERE THIS IS BULLSHIT.
Also, taking showers, usually a pleasant activity, had become upsetting.
In fact, I stopped washing my hair and took to putting my hair up and never touching it.
Yet, since the med switch last Saturday, I have washed my hair and… my hands were not holding clumps of hair afterwards.
That bordered on being an emotional thing.
Also, my stomach issues have cleared up.
That has been the most sudden and noticeable change.
For the last year, I’ve been working out like crazy, drinking gallons of water and eating unprocessed food, living the healthiest life style possible and within my budget, and… for the last few month, it didn’t feel like I was.
Because I’ve regularly felt like a bloated whale, washed up ashore somewhere grey.
Yet, I no longer feel like a bloated whale!
Now I feel like a happy, normal whale!
It’s like I suddenly, magically, can see my stomach again!
Also, the skin issues I had been experiencing are sort of fading. I’ve not been blessed with a clear, no-hassle complexion but I also have never had as much trouble as I’ve had in the past four months.
If this is a side effect of Briviact, it’s one that started exactly when I started Briviact. I even asked my new neurologist on the day we met whether she’d ever heard of “skin blemishes” being a side effect of the drug and she had said “no”.
Of course, she’s also never seen what my brain apparently “unexpectedly” does so… no rules apply here.
And, to my great surprise and delight, the most recent, stubborn blemish patch that simply refused to go away, no matter what I did, has finally started to disappear over the course of the last week.
This is awesome. Therefore, it really seems like the Briviact was causing some drastic side effects which are now dissipating.
At the same time, I’m also experiencing familiar negative changes due to the med switch.
Like… oh yeah, I remember this…
Holy cats, I’m sweating through my clothes at a record pace. I first noticed this last Sunday morning when I woke up and realized my shirt was soaked.
I wondered if I was sick and didn’t realize it. This is possible because I generally ignore my body.
But now I realize it has to be a side effect of the Levetiracetam I’m back on.
The only side effect I consciously know it causes is profuse sweating.
I don’t care, I can see my stomach and my acne is gone. I’ll get prescription deodorant if I have to. I’ll add that to the list which includes prescription shoes.
I never really thought of the sweating as being a side effect of the Levetiracetam but that’s silly because Zonisamide, a former anti-seizure medication I was on for a few years, was great because it stopped me from sweating.
Completely. I never sweated.
Thus, I appeared to be in amazing shape all the time.
If I was to run a marathon? There wouldn’t have been a single bead of sweat.
We sweat to keep our bodies cool or something whatever but since I don’t run marathons and only run when chased I really enjoyed never sweating.
It was nice to always appear calm, cool and collected.
However, as soon as Zonisamide stopped being as effective, years later, and I started to spend a lot more time on the couch due to breakthrough seizures, my then-neurologist switched me to Levetiracetam and… it managed my epilepsy like a pro and also brought me to the glamorous scene of sweat city.
At first I felt I was catching up on all the sweat I had missed while taking Zonisamide, like there was a quota of sweat we each have to sweat per year and I was super behind.
But now I’m realizing that perhaps a side effect of Levetiracetam for me is… the sweating.
But I’ll take it.
Besides, the increase in sweat production shows that the Levetiracetam is working. It’s back in my bloodstream and getting things back to as sweaty as what had been normal.
However, the peanut butter jar incident shows that my skin still hasn’t quite “solidified” back to its normal physical state.
At the same time, I don’t have any new bruising which is huge and the old bruises may now be healing.
For example, here was the blood draw site last Saturday:
And then, last Sunday, it maybe looked a little lighter and aw it kind of turned into a heart overnight:
Do you see the heart? 😺
In any case, a week after stopping the Briviact, the bruise is mostly gone.
Finally, the breathing issues… despite working outside in the rain and cold over the course of last week, I didn’t have any breathing issues. No longer do I feel a balloon in my chest.
Earlier last week, I even stopped taking the Advair prescribed for my recently-diagnosed asthma, after speaking with my GP… just to see.
And I’m feeling better.
Therefore, my allergy theory is producing some pretty quality data so far…
However, my sleep has been especially terrible since I switched medication.
I already had an issue with my dreams trying to offer up a nightly screenplay for a American Horror Story, season 15.
I’d also feel like I was living ten separate lives each night and then I’d wake up and be all “Oh. This life. Okay.”
But, since Saturday, while none of that has changed, I wake up and feel as if I haven’t slept at all.
My eyes feel so buried in my skull in the morning it feels like I need to pull them out a bit just so they’re out where they need to be.
But maybe that’s the price I pay for switching brain meds, and who even knows what’s a side effect of medication and, rather, what is simply the “way I am”.
Apologies if that gif caused any seizures.
What’s weird about my epilepsy is how I not only can tolerate flashing lights but how I feel high when experiencing flashing lights.
Dave and Busters is like heaven on earth for me.
Of course, I’m not your average epileptic.
At the same time, there’s no such thing as an average epileptic.
Epileptics may all have epilepsy in common, but it affects each of us differently and, beyond the abnormal, excessive brain electricity we all may experience, we are so much more than our diagnosis.
In summary, I am feeling good about switching back to Levetiracetam.
I’m sweatier and my eyes are sinking into my skull, but I can breathe, I can see my stomach, I have clear skin and I’m no longer covered with bruises.
And, beyond the side effect, it’s great to know I have two medications which control my seizures because that is huge.
I’ll be out of medicinal options if these two medications become ineffective so for now I’m going to enjoy my potentially temporary reprieve from seizures, breathing issues, blemishes, bloating, bruising and hair loss.
Life is short, no matter what. Enjoy what you love in the time you have.
Like… coffee and Halloween. 🖤
3 thoughts on “To Be (Allergic) or Not To Be: The Small Saga Continues”
One of the antidepressants I briefly tried (possibly Effexor) caused massive sweatiness. Acutely aware that I personified “The Sweaty Fat Lady” trope (and hoping to not call attention to myself) I actively resisted the constant temptation to apologize to strangers.
I know–pick your battles. I’m VERY relieved to hear of your continuing improvement. Isn’t it fun, messing around with brain chemistry?
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Ugh. I’m so sorry, Lisa. 💔 And… oh honey, I know that compulsion “IM SO SORRY EVEN THOUGH YOU HAVE NO IDEA WHY”… I’m so glad you actively resisted apologizing and am just so… sorry. ☹️
Yes. SIDE EFFECTS! Woohoo!! One epilepsy med caused me to physically, literally, shake as if some invisible force was violently shaking me (Neurontin).
Zonegran made me feel like my blood was itching… but, for the time it prevented seizures, it was awesome and didn’t mind.
A bunch of meds didn’t stop the seizures so they didn’t have time to expose me to their side effects.
When my parents were dying, my GP prescribed Buspirone as a PRN for anxiety and… found a med I’m really allergic to! I took it and 5 minutes later was having a tonic clonic seizure.
And… Lexapro? Damn. I remember when that first came out. All the anorexics were on it. But it causes my heart to try to pound so hard it feels like it’s trying to get out of my chest.
It probably is. And that hurts on more than one level.
I… despise meds. What’s funny is how Briviact was created to address all the side effects of the generic Keppra I’m back on. 😂
Itchy blood–that sounds fun. Ugh.
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