Forums » Smalltalk » anyone with epilepsy?

The first time I experienced something that was labelled as a seizure was in 2013, a few months before I graduated college. It was the type formerly known as "grand mal," so... it kinda stood out. I only have very fragmentary memories of that night, but apparently a second one happened while I was in the hospital and doctors were trying to figure anything out. I was given a standard anti-seizure medication (standard because it's apparently the one with the least risk of problematic side-effects; do be aware that some of them can have some really troublesome side effects). I didn't stay on meds for long (against doctor's advice, because sometimes I'm just dumb like that) since it seemed like such a one-off thing for me that taking brain-affecting meds for the rest of my life seemed a bit extreme to me.

And it seemed like I was right until I think about a year and half ago, when I woke up on the floor and continued to be confused enough that it took me several hours to realize I was bleeding under my lip (even longer to realize I had a hole that went all the way through) and I think almost two days to contact a hospital and find out that my jaw was dislocated (less painful than it might sound; it took so long because I was only experiencing a relatively mild annoyance). Got the injuries taken care of, got in touch with a neurologist, got tests that, again, showed no issue, and was resistant to going back on meds since several years had passed between episodes (and I was a little in denial that it had been another seizure since, this time, there had been no witnesses). It was also at that time that I was told that if a person has just two seizures in their entire life, it gets labelled as epilepsy - but my medical record still only states "history of seizure." (That's not the only point of uncertainty.)

In more recent months, some things in my mental processing that have been annoying me (nothing extreme, just more frequent minor mistakes and such) got me thinking about some other things I'd been told between those two episodes, about other, much more subtle types of seizures. More specifically, at least two separate doctors (one general medicine, one psychology) independently suggested I might have such seizures and asked me about various symptoms associated with them. I basically dismissed it at the time because everything mentioned was something that could be explained by something already in my medical record (most of it by my ADHD) or something that a witness would have needed to inform me of. But yeah, in these more recent months, I finally decided to look up more info about the various other types of seizures, that was actually quite the slap in the face. There wasn't just some of the overlapping symptoms, there was actually more clear descriptions and other symptoms I don't recall being mentioned before, including a description of a sensation that was the closest match I've ever seen to something I've struggled to describe to doctors for years. It also could suddenly re-contextualize the mysterious fainting spells I had a few times after high school that had previously been blamed on dehydration (due to bad memory and having once been hospitalized as a kid over dehydration), occasional moments of serious spacing out since childhood that had previously been blamed on ADHD, and possibly some other oddities.

I got back in touch with my neurologist. We did one more scan just to see, but again, nothing of note. Each time this happened, it was explained to me that the "normal" results were not proof that I didn't have some form of epilepsy, just a lack of conclusive proof that I did. So the only thing left to try was to just... see if anything changes with meds. And although it's hard to be sure, I think it has, but I think I'll need to get back into a job to be more sure (which could simultaneously be proof against, and I'll explain more soon).

We're also pretty sure I sometimes get fairly brief migraine auras (and sometimes feel a little sick, too), but luckily without the pain...? I don't know, I grew up thinking that migraines were just extra-painful headaches, and apparently that is nowhere near correct.

I have had what appears to have been tonic-clonic (aka "grand mal") seizures; I think three, with two having happened the same night the first time, and they were several years apart. Assuming they were what they appeared to be, I at least technically have epilepsy, since apparently that diagnoses just requires two seizures over the course of a person's entire life. I'm implying that they might not have been because every test and scan I've had has come out "normal," and because apparently stress-induced pseudo-seizures exist; they externally look like a seizure, but don't have the unusual electrical activity that defines a true seizure.

There is also evidence that I may experience (or have previously experienced) other, less obvious types of seizure, such as "focal aware" and "focal impaired awareness" seizures (which can be pretty much undetectable from outside at times) and atonic seizures (also called "drop attacks," a seizure that looks like simply fainting). If so, it's been a long time since I may have experience that last one, and it's likely that "focal aware" are the type I have experienced most often. "Absence" seizures are also a possibility, but apparently usually only appear in kids.

There are a number of anti-seizure medications available, but definitely be sure to discuss side-effects if you're going to start one. Most likely, a first suggestion will be levetiracetam/Keppra, since it's apparently the one that's had the fewest and typically mildest adverse side-effects and is pretty well established. Its side-effect list is honestly fairly standard for any non-stimulant medication that's going to affect your brain, but y'know, still good to know. A lot of others can have some pretty bad interactions with other things or potentially very problematic (even if rare) side-effects, so definitely make sure you understand what you're looking at. And remember that you can always ask about changing dose or to a different medication if one isn't working out. Depending on where you live, there may be alternatives to typical medications that you can discuss with your doctor if you feel it'd be worth looking into. When I looked it up to see what TLE is (ah, the "focal" types), I also saw it mention that a keto diet can be helpful, and that surgery is often a productive option if other treatments keep failing.

Depending on things like how your possible seizures express, if you're reasonably able to detect one coming enough in advance to ensure you're in a safe situation, how effective medication is, etc, there may be limitations on you for things like driving and and working certain jobs where you could be a serious and "unreasonable" safety hazard. From what I've been told, if you've got a good handle on managing it, shouldn't be any issue outside of certain careers that have particularly extreme demands, like working for the FBI or something. If you can't get a good enough handle on it, should probably avoid jobs that revolve around working heavy machinery or in risky spaces, etc. I'm not sure if it varies, but there's also a period of months following a seizure (involving loss of control or consciousness) when it's basically illegal to drive. (I don't drive anyway, so I never looked super deep into that.)

Overall... you may end up being surprised by how little it ends up affecting your life beyond what you already deal with. With a diagnosis, being able to get the correct treatment should actually make your life a little easier.

First thing I want to say is that if the medication you're being proscribed concerns you, you absolutely can ask to adjust dose or try a different medication, even if you haven't tried the one initially suggested yet at all. (I don't know if you already did; I'm speaking from knowing that I have often been one of many to think I need to simply accept the first thing a doctor says, even if I have concerns about it.) You can ask about something lighter on side effects, or if there's something to avoid some particular side effect, and you could also ask about working up to a lower dose and deciding if more is needed later on.

I think Lamictal is the one I was briefly on after expressing some concern about the possibility of Keppra agitating my mood issues. That's the one with the risk of an incredibly rare but potentially fatal rash, right? (If it wasn't already explained, apparently once a person's established on it without any sign of that issue, that already extremely slight risk is supposed to be gone, but it's still pretty freaky to know is a risk at all. And the risk really does have to be super low or it would get removed from the market. That actually happened to a medication I took for awhile as a kid.) If you also have mood issues like anxiety or something, that might be why they went with Lamictal first, since apparently it's actually sometimes used for just those issues when no seizures are present.

Yeah, definitely seems like it's a much more frequent issue for you. And while that might make it seem weird that I appear to have gotten considered for epilepsy sooner... it was never considered until the first tonic-clonic incident, which again, was shortly before graduating college and is an exceptionally obvious symptom to anyone, especially when at least one also happened while I was in the hospital. That's despite the (admittedly infrequent) appearance of syncope not all that long after graduating high school and many more years of sometimes spacing out to the point that I'd suddenly realize someone was pretty much yelling at me to get my attention, and had apparently been trying to get my attention for some time. It was easy to sweep those and various other things over to other explanations, and by now I have even more possible alternative explanations for various pieces. But, as you already noted on a smaller scale... having one thing doesn't exclude another from playing a part.

A relevant thing I'll note, though this may be just a regional thing and I don't even know if you have a location near you: in my personal experience, those who work for Kaiser Permanente seem to be pretty noticeably better at even listening in the first place than most. That also seems to often be the case with younger medical professionals, though that can come with a trade-off of the lesser experience meaning they can miss and misjudge things maybe more often. As a recent example, though, some things had led me to wondering if I might have very early-stage rheumatoid arthritis, and my doctor ended up agreeing that it was worth checking out even if just for peace of mind. (No sign of it, so the most significant things I've actually experienced so far is probably just plain ol' Raynaud's making some of my joints get a bit extra weird and achy.) Contrast that one of my housemates' medical experiences in particular, especially around her recent Celiac diagnoses... she's actually afraid to even be in a medical setting anymore due to the treatment she got, including mistakes that should have been incredibly obvious, and I've been gently trying to encourage her to at least leave the system she's currently in (gently in large part because I know the prospect of getting established with a whole new system and all new doctors and stuff is also stressful).

And settling on a more personal, not-so-relevant note on medical testing... my family and I has a weird history of of testing seeming to be useless. There will be a clear problem, sometimes even outwardly visible, but so many tests will keep insisting we're totally fine. Obviously that's to be expected if the wrong thing is being tested for, but aside from this often leading to what seems to be no possible explanation for something besides "it's in your head" basically, we know that there have been cases of things just plain being wrong. For example, it took multiple attempts to identify an odd heart abnormality my grandma had (it's since been corrected), and according to an allergy test, my mom isn't allergic to any of the things that we know for a fact that she's allergic to can can easily prove it.

Figuring out medical stuff is hard...

Out of curiosity, do you know if you've ever had your thyroid tested? Or your iron levels? Well, actually I'd be pretty surprised if no one ever thought to check your iron with some of the stuff you've mentioned. But I guess if you're not sure, it's worth asking about.

In case either haven't ever been discussed with you: both are things that can affect your energy levels, cognition (especially the thyroid), and some other body regulatory stuff. Both are also more commonly outside the "healthy" range in women than in men.

If you ever do blood donations or anything, one of the key things they check is your iron, because those with low iron levels are more likely to pass out in the process. (I can note that it's also important to be very well hydrated when giving blood or plasma. Makes things a LOT easier. And from what I understand, a lot of people are pretty much perpetually at least mildly dehydrated, and that will absolutely mess with your blood flow & pressure, too.)

As for the thyroid, it can have a big enough impact that when it was discovered I have hypothyroidism, I was almost required to wait and see how the meds for that would affect me before doctor would even consider prescribing meds for my ADHD. Not just to properly track which medication is having what affect, but because some symptoms of hypothyroidism can mimic some symptoms of ADHD.