I started this blog last spring after experiencing my first ambulatory 72 hour EEG.
Accordingly, this entry provides some updates for the health tests I’ve discussed here in previous posts and also includes my proposed take-it-into-my-own-hands solution.
In addition, it presents a reminder that you never know what you’re going to get when trying new medication or the health test results you’re waiting on.
In any case, last Friday I got the results from my July ambulatory EEG.
As a refresher, this was the second ambulatory EEG I’ve had in 2020 because the first EEG produced results which super freaked out the neurologist who had ordered the test.
In fact, he felt the EEG showed that I was experiencing one to two seizures every hour, and, consequently, asserted that my body couldn’t sustain the amount of excess electricity being produced by my brain and, therefore, I would likely soon die.
Short of surgery and suicide, he then strongly recommended that I switch medication.
You know, if I wanted to live.
This neurologist had an attitude of “I mean, you’re really screwed – it’s hopeless – but, until we schedule the brain surgery, the least you could do is switch medication.”
I had been on a generic form of Keppra which I thought had been doing the job, but I, at the frantic suggestion of the neurologist, then switched to the brand name version of a newer medication, Briviact.
And I also got a new neurologist.
When I first met with my new neurologist I told her what the former neurologist had said, and she apologized for my experience, shook her head and said that some people simply weren’t trained on how to accurately read EEG data.
That’s probably very true. Either way, telling a patient that they’re going to die soon (gut feeling) is more of a personality flaw than a lapse in training.
And then, since my former neurologist wouldn’t share the data from the first ambulatory EEG done back in April with my new neurologist,
I had to do a second ambulatory EEG mere months later.
And now the results for that second EEG are in.
The results are… the title of this blog: “unexpected”.
My current neurologist saw “unexpected activity” when reviewing the data from my 72 hour EEG but she didn’t feel it represented seizures and therefore she didn’t feel it was connected to epilepsy.
And so I could switch back to my old medication if I wanted to.
She also asked how I was feeling.
All of that is sort of neurologist code for: Holy cats you’ve got a crazy brain and we don’t know what it means but as long as you feel okay, everything’s fine.”
Neurologists don’t often elaborate if they don’t feel it’s practical or necessary.
I can appreciate that. In my health records, the neurologist I had in 2015 noted that I had brain lesions after analyzing the data from a MRI, but she didn’t tell me that.
I only found out a couple months ago after my current neurologist told me after she analyzed a more recent MRI and saw the lesions and, since she also had the results from the 2015 MRI where they first appeared, she shared this information with me because she felt it was good the lesions hadn’t changed shape or size.
Positive news.
Because, while they don’t really know what the brain lesions mean, they know they don’t want the lesions to get bigger.
Since the lesions first made an appearance in 2015, I’m pretty sure they documented the trauma and pain I felt at having both of my parents actively dying at the same time.
It left a mark.
So my brain was producing unexpected electrical activity but it wasn’t producing seizures.
That’s super good.
However, at the same time, for the last few months, my physical health has been degenerating.
At first, I started to break out.
Gross.
But I imagined that was due to the stress I was experiencing.
But then my hair started to fall out.
It came out in clumps while in the shower.
And my hair started to cover the couch.
Also very gross and could be attributed to stress.
Neither of these two things helped alleviate stress either.
Yet, more bodily issues started to emerge.
My stomach issues and breathing troubles both intensified in the last few months.
In fact, I was having such a hard time breathing I was diagnosed with asthma back in May. It felt like a balloon was inflated inside my chest.
Yet, after prescribing various treatments, recently my GP told me that she doesn’t feel the treatment is working and maybe I don’t have asthma.
Maybe something else is wrong.
And… that is when she ordered comprephensive bloodwork and a chest x-ray and felt it wise to refer me to a pulmonologist.
I bet pulmonologists aren’t too available right now, what with the COVID pandemic – known for wreaking respiratory havoc – is hitting its stride once again.
Sigh.
In any case, I’ve also been experiencing intense fatigue… not just the “oh wow, I didn’t sleep well last night and am now a zombie give me coffee”.
No, these episodes are way more intense, and, when they hit, it feels like my body is shutting down with or without me.
Finally, I’ve started to experience dramatic and unexplained bruising which take weeks to heal.
This is the most disruptive symptom because my husband used to say my super power was my ability to quickly heal.
Gnarly cuts, sprains, bruising… for me, all injuries have healed very quickly.
This was a great super power to have as an epileptic who preferred bashing her face on sharp edges and power tools when experiencing tonic-clonic seizures.
However, my ability to quickly heal has faded lately. And so the unexplained bruises and cuts are starting to accumulate as they keep happening but don’t… heal.
None of this has been ideal.
Soon I’ll be a bald, bruised, wheezing pile which slowly, wearily, drags itself across the floor if it needs to move.
Well, my GP recently told me that my comprehensive blood work and the chest x-ray she ordered both came back “normal”.
That’s great but it also doesn’t explain all the symptoms I’m experiencing which seem to be getting worse with every month…
So.. if my bloodwork is normal, then what could explain all these weird physical symptoms?
I’ve not changed my diet or everyday routine in the last few months.
The only variable that has changed is when I switched epilepsy medication and…
started Briviact.
So I started to research the Briviact more extensively because, I queried, maybe a possible side effect of Briviact could explain all these new symptoms…?
I found that, largely, its side effects are the normal suspects for brain medication which can largely be classified as psychological:
While super happy to not be experiencing
acute psychosis
or seizures, I’m starting to suspect that my epilepsy medication Briviact is the source of all my physical symptoms.
On WebMD, the source of every possible way you could die, more side effects for Briviact are listed:
I want to find a drug with a side effect of euphoria…
While the side effects weren’t screaming out THIS IS THE SOURCE OF ALL YOUR PHYSICAL PROBLEMS, the possible side effects for Briviact could explain both my trouble breathing and also the fatigue I’ve been experiencing in the past few months.
And then I found the more rare side effects of Briviact:
Aha! Briviact can, in rare cases, suppress the immune system. Therefore… the bruising, my sudden inability to heal, an increased susceptibility to sickness, fatigue, feeling as if I have a dense balloon in my chest and even the dramatic hair loss could be explained by the rare side effects.
It’s a stretch but it’s possible.
I also remember how I felt very indifferent when I first started to take Briviact.
I even wrote a blog about it:
Maybe I’m still feeling so indifferent I don’t even notice my indifference.
Because maybe whatever.
In any case, I stopped taking my Briviact Saturday morning and replaced it with my former anti-seizure medication (generic Keppra or Levetiracetam).
While Briviact and Levetiracetam are in the same drug family
they’re different medications which could have very different effects on each person.
After all, we’re each an individual snowflake.
And I have “unexpected brain activity”.
So I’m a special special snowflake and who the hell knows what is possible.
In any case, it can be assumed that maybe this medication is actively producing some kind of mildly allergic reaction which is intensifying as the medication builds up in my blood stream.
Wild theory?
I don’t care. I’m now back on my generic Keppra and will soon see if it inspires a positive change.
After all, I was placed on Briviact under rather jarring duress.
Maybe my overactive, modernized reptilian mind was all “Well, that was a dick move! I am going to slowly torture the body for a few months until the conscious mind makes the decision to go back to the medication it wants to be on.”
In any case, being epileptic sucks and then you take the medication to address it/prevent it from killing you and the medication then tries to slowly kill you.
Or quickly kill you (for me, that’s Neurontin).
But a slow death by 1000 cuts is still better than experiencing seizures.
So it’s good to know I have two anti-seizure medications that serve their primary purpose.
Bright side!
In the meantime, I’m having trouble finding the will to care.
Brain Wars!!! 
1. I’m glad your new doctor is so amazing.
2. Luca (I know you are *not* a dog, but hear me out) started getting ulcers in his eyes and I said could it be a food allergy? They said NOooooooo! So we Treated the ulcers, had eye surgery done on him and continued to treat his recurring eye ulcers on the reg. After 3 years I said, I don’t give a fuck what they say, I think it’s allergies. Stopped feeing our baby chicken and he never got an eye ulcer again. Soooo, just because it isn’t a documented fact doesn’t mean it’s not anecdotally true.
I HOPE HOPE HOPE with all of my heart that switching back to your normal medicine is the thing that makes you feel well again.
❤️❤️❤️❤️❤️❤️
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My beloved BBF. 😭 Sweet dear Luca. I’m so glad you went with what made logical sense as… oh wow. Animal and human doctors and I hVe some history so… whatever they may say, they need some hard facts to accompany their “declarations”. 😑
Yes! My new neurologist is… great. She asked me if I wanted to switch and I didn’t know on Friday… I was still all “unexpected brain activity!?!?!? Whaaaaaaaaaaa?!?… and then I breathed and was all… yes. I’d like to switch back! MAYBE ITS THE BRIVIACT but by then it was after hours.
I’ll call on Monday. And… ohhhh fingers crossed! Thank you so much my heart. 😘😘😘😘😘😘🖤🖤🖤
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I think you are on the right track–good thinking. The med change, the timing, it just makes all kinds of sense. I’m hoping it won’t be long before Briviact clears your system.
Does that long list of blood work include various thyroid functions and Epstein Barr titers? I only ask because those are my own hair loss and energy culprits. How was your white blood cell count?
So, what’s your neurologist planning next?
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Hello Lisa! So good to hear from you!!
Yes… since the symptoms/side effects increased month by month, I’m hoping the generic Keppra will more quickly replace the Briviact… yeah, I hope this is what’s wrong and that, if so, the blood clears and… 😺!
I didn’t get a copy of my bloodwork. I’m going to ask if I can… my community clinic doesn’t have a website or anything so I just have to trust that “it’s normal” is… in fact, accurate. I do trust them, as far as trust goes, but I have all my other bloodwork… it’s good to compare year to year and… well, maybe that’s neurotic. 😂
In any case, WHATEVER 😺 and I’m hoping that, after I call tomorrow and talk to my neurologist(‘s nurse who is awesome too) about my concerns… maybe she could get a copy of the bloodwork and then I’d have access to it as… all data shared with her health group is accessible to me (and online…).
But yes… I had regular bloodwork until last year. And the bloodwork was “itemized” and good.
It’s just been the last year and this year I don’t get to see the measure of everything.
If the hair loss and weakness don’t improve in a month… well, I still haven’t got the GENETICS RESULTS 😺 (which were ordered by my neurologist) so… I was kind of assuming that I’d meet with her after that test came in because then the 2nd EEG, the MRI and the genetics results would be in so we’d then talk about next steps.
But I’ll see what she says tomorrow!
And ugh I’m so glad you found the source of your own issues!!! Have you been able to address the culprits? And have you experienced an improvement?
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You are anything but neurotic to want a hard copy., and they have to provide one if you ask. It may take me longer to understand what’s there, but I’m a smart cookie, and I learn a great deal from looking them over my own self. You, too, I bet.
Basic thyroid function is sometimes checked. Epstein Barr, only when asked (you ask doc, doc requests test). I think white count is standard. I asked you because of bruising, slow healing. Mmm, you might want to take a look at your hematocrit–anemia causes exhaustion. They always check that. Ask about A1C, too. I do not know if it’s standard. Exhaustion, bruising, slow healing can signal diabetes. I wouldn’t be surprised if all of those were done, with the exception of EB.
I’ve had fibromyalgia for decades (did you know that is also a cause of brain lesions?), and was used to living with it even when it was flaring. Then, suddenly I was just pole axed. I had thought I knew what exhaustion was, but this was exponentially worse. They take three titres (titers?). Mine were through the roof, and have stayed there. There is no treatment. Just supposed to do no more than “daily activities of living,” get enough sleep (ha), and an excellent diet. EB is a retrovirus and lives forever. The same virus that causes mono, when you are stressed–physically or emotionally, can come out to play. Another of its gifts is Guillain Barre (that’s a freaky one).
I recently had what was left of my thyroid removed. Even though I had thought it was totally non-functioning and have taken replacement thyroid hormone for decades, I’m now taking more and more hormone with the numbers continuing to be hypo. Dry skin, no eyebrows, nail ridges, exhaustion (yeah, needed more of that), weight gain, and hair loss. Lots and lots of hair loss. Also, I don’t metabolize alcohol well, but that’s just fun–I am the cheapest of drunks.
Endocrinologists are thick on the ground, and each of them claim to treat thyroid disease, but in fact, most of them are diabetes docs that studied thyroids in med school a long time ago. Finding a thyroid endo is on my list. There are not many of them. Travel will likely be required…
And, “Other than that, Mrs. Lincoln, how did you enjoy the play?” 😀
I am so glad you have a good neurologist, whom you have deserved to have all along. She’s got your back, what a relief. Even still, you are the boss of your body. You hired her and you are in charge. Please, just, keep that always tucked in the back of your mind.
xo L
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I’m so sorry to hear of all you’ve been going through, Lisa! How absolutely frustrating.😞
And the shortage of specialists combined with the apparent NEED for specialists because general practitioners largely just refer patients now.
Fibromyalgia is no joke. I’m so sorry you have to deal with that daily. 😞 THAT is the exhaustion I’m talking about. Just… dead tired.
Yes, I have copies of my comprehensive blood panels for the last few years and educated myself on what it covers. I’ll see if I can get a copy.
Tonight is the start of this giant mural and I’m my husband’s helper and it looks like it’s going to rain and so… slow panic is how it is in the house today. I’m about to call my neurologist and see how she responds to my concerns. 🖤
Hugs hugs hugs.
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(If I end up with two of these…my first attempt to “post comment” seems to have disappeared.)
ACK!!! I _KNOW_ he doesn’t want to, but it’s better to bail and miss a deadline than to get it done on time, only to have it compromised. I mean, he’ll likely be driving past it for years–that would be crazy making.
Annnd, I just realized that whatever you were gonna do, it’s done (2:30 AM here).
I’m really pretty lucky. I was able to make the changes to my life that allowed me to do well, even thrive, with Fibromyalgia. I know people who spend half their lives in bed and the other half in a wheelchair. And I was diagnosed almost as soon as my symptoms began, while so many others see their lives crumbling around their feet, not knowing why, and being told they are malingerers.
Also, Phil Burton, my GP, is a freaking miraculous force of nature. Before Ariel was a pharmacist, she was a pharm tech and worked in the only properly trained and equipped compounding pharmacy in the Triangle (that’s RTP, Research Triangle Park, Raleigh/Durham/Chapel Hill). She saw a LOT. In her opinion, Phil is the finest diagnostician in the Triangle, and she personally knows of three people who are alive today only because of his superpower. No one else would have ever caught their illness in time. HE doesn’t even know what engaged his spidey sense, but something made him uneasy enough to get the right testing in time. He says he just listens. Phil Burton is a goofball, and a sweetheart, and a marvel. We’ve been friends for over 30 years, before he was even my physician.
He is ALSO one of the 3 doctors who first identified that SOMETHING was going on, when that something turned out to be fibromyalgia. There were 3 clusters, one of them in Raleigh (the others, I think, in a couple California cities, if I’m remembering correctly).
BIG BREATH–LONG SENTENCE AHEAD: Also, I’m sort of an energizer bunny–I just keep going and going and going…one foot in front of the other until I can’t–strong will combined with an overactive guilt thing (whatever around me that’s wrong, it’s my job to fix it, it’s my job to make sure everybody is content, and even though I’m really damn good in that capacity, I’m always uneasily aware of where I could have done better). Anyway. I take naps, and I get shit done.
I’m good. Unfortunately, you asked at just the right moment to trigger regurgitation. Instead of a polite, “Fine, and you?” I went BLAH all over you.
I know it’s too late to urge you to be mindful of your energy and not overdo tonight.
I HOPE you were mindful of your energy and didn’t overdo tonight.
(This would be a case of, “Do as I say, not as I do.” I am aware of the irony.)
No worries. Hugs back atcha,
L
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Hello dear Lisa.
Fibromyalgia is such a serious reality. I’m so glad you have a fantastic GP (and friend) who helped first diagnose it and who has continued to support you.
Sounds like you have a great team and that’s so important. 💙
I’m a bit of an Energizer Bunny too. I can’t remember what you’re telling me to take it easy with but… I will.
I kind of need to physically destroy myself occasionally… it’s like wiping the slate. Ideally, this was to be today… the priming… but it looks like an alien planet outside so I don’t know if we’re going to be able to stay on schedule.
Keep taking care of yourself. Sending hugs!
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“I’m a bit of an Energizer Bunny too. I can’t remember what you’re telling me to take it easy with but… I will.”
I thought I recognized The Bunny in you.
(Take it easy with the mural.)
: D
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