I don't know where to put this or, to be honest, what to say, but this is a "witness pls" type thing more than anything else... idk, if there's another board where this would be more appropriate then anyone is welcome to move it. It's weird. I'm not scared, I'm not panicked, I'm not anxious or worried or whatever, but I'm preoccupied with the fact that I had a fucking seizure on Sunday. For the first time in twenty goddamn years. Background: epilepsy runs in the family. A lot of people don't know this, but it is actually possible (though rare, I believe) to stop being epileptic, and this is what happened to both me and my mother. Her seizures started in adulthood, and continued for a few years iirc? (this was before I was born), and then after several years completely seizure-free she was tested again and declared No Longer Epileptic. I personally had a form of epilepsy that is exclusive to childhood, and until this weekend I'd only ever had a grand total of two (2) seizures in my life. (I was never medicated, because my seizures were benign & conveniently only occurred in my sleep, and my mom didn't want to subject me to the massive bummer that is seizure medication for the next fifteen years Just In Case. Turned out she made absolutely the right call.) Last year I requested an unusual prescription antidepressant which is thought to lower the seizure threshold. I had suspected that this specific drug would be uniquely helpful to my depression for a wide variety of reasons, and had been reading about it for years; however, it's not recommended to prescribe it to anyone who has a history of seizures and/or bulimia. (Furthermore, it's only licensed as a smoking cessation aid in the UK, and would have to be prescribed off-label as an antidepressant here.) Nevertheless, having reviewed the research myself, I was comfortable making an informed decision to take on this risk - my bulimia has been solidly in remission for several years now; technically, once I outgrew my benign rolandic epilepsy, I wasn't statistically at any higher risk of seizures than someone who hadn't had BRE as a child; newer research is finding that the drug may not even cause seizures anyway, at least not in lower doses; and even if it did, the word "seizure" to me doesn't automatically evoke a major disaster. Spoiler: analogy It's like being from California and talking about earthquakes - if a travel guide is warning you that the place you want to visit is on a fault line, and you come from, say, England, then "there might be an earthquake" might be much more alarming to hear than it would be if you were from CA. Because to an English person, "earthquake" is associated with catastrophic destruction, whereas to me (having grown up in NorCal) it's just "oh, yeah, that's a thing that could happen". (Until I was 21 I had never actually been consciously aware of an earthquake, even though I was in a bunch of them! I can't count the number of times I came to school and everyone was saying "did you feel the earthquake last night??" and I just went "damn, I missed it again?!") So I knew what I was getting myself into, risk-wise, when I started this med. I really, really don't want to come off of it, either - even if it does mean that my seizure threshold is lower. I had to stop taking it for a while last year because of a record-keeping error (thank you, shitty ex-psychiatrist!), and it really fucking sucked. On the plus side, this whole debacle might give me some leverage for finally getting appropriate meds for my hypersomnia: I can point out that if I come off of this med, I will no longer be fit for work, as it has been controlling my IH. I can also point out that I'm not willing to consent to take any seizure meds that will exacerbate my IH, not unless I'm absolutely guaranteed to receive something else to counteract that. I can stand firm in my assertion that the detriment to my life and well-being that would be caused by "being at risk of maybe having another seizure at some point, possibly" is absolutely not outweighed by "having IH get even worse". And I can let them figure out for themselves that the treatment I've been suggesting all along is, indeed, the most appropriate, safe and effective way of treating my organic brain cooties. Ugh. It's frustrating to sit here repeating what I've said to my friends and family so many times over the last few days. It's not even interesting. It's not changing, there's no news, and there's currently nothing I can do about it. My tongue hurts, my bruises are interesting, and it's too hot here and I wish I could just fast-forward to my various doctor's appointments. This is serious enough that the referrals are all being fast-tracked, but not serious enough to require immediate emergency care. I have an ECG and blood tests tomorrow, and I'm waiting to hear from a neurologist, who will supposedly contact me within two weeks; I have a medication review on Wednesday, where I will have to repeat my whole goddamn story about the meds and my informed decisions and so on, and patiently defend my right to take a calculated risk without giving the impression of being an uppity/hysterical/hypochondriacal little girl, and probably get judged all over again for having Opinions about my medical treatment instead of going along with the often-downright-weird recommendations that have been made to me to make sure I don't get any bright ideas about deserving safe and effective help. I don't want to be reminded of my painful theory about what would have happened to me if the health crisis I'd had in September 2014 had been epileptic rather than psychiatric. (Little memories keep cropping up, though. Innocuous things that stab faintly at my guts, nudging the edges of my consciousness to request entry into the forefront of my mind, while I try to stay in the here and now and not go back into a bereavement spiral. Disenfranchised grief can fuck itself.) Trying to keep my focus forward, I explore those same feelings of bitterness in the context of something upcoming rather than previous: the fact that I might finally get the help I've been asking for, just because my nervous system did a little sneeze. Autism, IH, and mental illness weren't good enough excuses to need so much care, but one little seizure could hypothetically set the wheels in motion. My fucking tongue hurts. I keep forgetting that my legs are sore. My goddamn laptop's broken, and I can't get over the fact that I destroyed a bedside table in my sleep - that mostly makes me laugh, though. I keep forgetting that I won't be allowed to drive for a while now, as well - which is a pain in the ass, even though I didn't have a car in the first place; it was possible that I could be added to my parents' insurance for a while, which would mean that while I was staying out in the middle of nowhere I might have a tiny bit more independence, but noooo, of course not. (Gotta look up the legal situation with that, actually. Obviously I need medical confirmation first of what's going on, but even once a doctor has declared me safe to drive, I'm under the impression that I'm still legally required not to for a while. Bleh.) On the plus side, I'm finally starting to get some cool reference photos of my bruise. (Makeup artist problems: spending several days unsatisfied with the pictures you take of your injury, because on camera it doesn't meet your standards of Convincingly Realistic, even though it's literally real.) It's pretty badass, and the colours are interesting. more post-ictal selfies because this is how millennials cope with stuff Here endeth the rant. More later, probably.
Witnessed. Having things to do that require other people to do things, and having to wait around for the other people, and knowing they're going to be difficult about it, is my least favourite thing ever. I hope you're able to get things sorted without too many shenanigans.
Update: The medication review was a laugh. It was a session with a mental health support worker who openly confessed as soon as I came in that she didn't know what the appointment was supposed to be for. I gave her the nutshell version, and for both of our convenience I just wrote out a chronological bullet point list of dx and rx plus notes. She was quite impressed with how well I remembered everything. She referred me to a psychiatrist for an actual medication review, and I am actually quite optimistic about that; this is mostly because she (the person I saw on Wednesday, I mean) was very open to hearing my own theories and suggestions, and felt that they were legitimate and well-informed, as well as agreeing with my criticisms of some of the rx moves made previously. She joked that I was basically writing my own referral letter with my bullet point guide. All my blood tests came back normal, and my blood pressure is "optimal", so that's nice. Pulse is still a little high, but "good blood pressure, high-ish pulse" has quite often been my status over the years. Interestingly, the doctor who called me with the blood results still referred to what happened as "suspected to be a seizure", which kind of surprised me; I'm quite certain now simply because I have no idea what the fuck else it could possibly have been, but maybe if they can't prove it was a seizure I won't have to worry as much about the legal ramifications with insurance and so on? Hmm.
I'm sure it's gonna be fine. That's the weird thing - I'm not actually worried. I'm just impatient; I hate not knowing, and not having any leads to research. With my mental health, and with most of my physical health for that matter, there are things I can look up; I can formulate theories, check my information, have some idea what the fuck I might be hearing when I next go to the doctor. In this case? Nothing. It isn't scary. It's just annoying. I'm grateful that there is such a long wait; it means that this isn't an emergency, and I'm not seeing doctor after doctor straight away because I don't actually need to, and that's good. I'm glad about it! But it's really frustrating nevertheless, just having to wait, and then in the meantime remembering every so often "oh yeah, now I can't legally drive for a year" and "oh yeah, I broke my fucking laptop with my seizure" and "oh yeah, whenever I go to sleep I should probably check around myself for things that would hurt to writhe into and/or might break if I convulsed against them". I wish I could just skip ahead, do all these doctor things in one fell swoop, the psychiatrist and the neurologist and everybody. It's so boring having it all spread out like this.
well, there are actually episodes called "non-epileptic events" (or attacks, sometimes) which look similar to epileptic seizures but actually aren't. narcoleptic episodes result in sudden losses of consciousness like those of epilepsy, but as far as I know there's no involuntary movement involved, which wouldn't account for your bruises. that's the only thing I know of that isn't a seizure, but I guess your doctor could have been using "suspected of being a seizure" as shorthand for "expected to be epilepsy"? in which case there are a number of causes of seizures that aren't epilepsy. your blood testing and ECG might've ruled these out, but blood sugar crashes and arrhymia (and other heart conditions, I believe) can lead to physiological seizures, and apparently sometimes people have what are called "first seizures" and just... never have a seizure again, ever. in your case you have had seizures before, but it still might be a one-time thing. and psychogenic seizures are also a thing (i.e., seizures caused by psychological problems) which, given your mental health, you're probably unusually at risk for. those are usually treated via therapy, not seizure meds. so maybe you'll turn out to have one of those, which will hopefully be easier to treat than epilepsy. also, I'm glad that the lady you saw at your medication review was reasonably competent and pleasant, even if she didn't know what was going on! it sounds like she treated you like a thinking human being instead of a medical specimen who couldn't possibly know what was going on with their health, which is unfortunately rare in the medical field (and extra rare in the NHS, from what I've heard). witnessed, and good luck getting treatment and/or improving your quality of life in spite of this.
With narcolepsy, the loss of consciousness is only sudden if you have cataplexy, which I don't. (Sleep attacks without cataplexy can appear very sudden to other people, but in general, you feel them coming.) Cataplexy involves a loss of muscle tone, not convulsions. And anyway, I've had narcolepsy ruled out by an MSLT and a differential diagnosis of idiopathic hypersomnia; the IH is why I was asleep in the first place - this happened in my sleep, did I mention? I lay down for a nap, woke up with a headache, tried to go back to sleep but couldn't because my head hurt too badly, and then woke up properly and discovered all the bumps on my head and bruises and bitten tongue and all. I don't think psychogenic seizures can happen while you're asleep, can they?
I have no idea when psychogenic seizures can or cannot occur, sorry! you'll have to ask your doctor about that. I don't necessarily see why they couldn't if you were stressed when you fell asleep, but yeah, I don't actually know.
Okay, this is just me being kinda perseverative now. Spoiler: wangsting This isn't an emotion, it's just a thought that won't go away. I broke a table. I broke a table. I broke a fucking table. I broke a table and I broke my laptop. I broke a laptop and a table. I broke my laptop and my table and I bit my tongue and I gave myself a bruise worse than what I usually come home toting after play parties. I broke my skin and I broke a table and I broke a computer and I'm safe and okay now but I broke stuff while unconscious and that's just really fucking weird. It's not weird in theory. In theory, it's something I've always known to be possible, to in fact be more likely to happen to me than to happen to other people. I always knew this might happen. I just didn't imagine, if it did, what - out of all the infinite possibilities - would happen. It's one thing to think "okay, theoretically I could cause damage to myself and my surroundings, and there are a lot of ways that could happen"; it's another to think "hey, hypothetical situation here, imagine what you would break and how you'd feel afterwards?" I broke a table and a laptop. I wasn't even drunk or having an acute dysphoric episode. I was literally unconscious. I have no idea what actually happened or why. (Well, I have some idea why in that I have some ideas why not and that points me in the general direction of some alternate explanations... but for the most part, I do not know why.) I'm sick of having physical health problems and thinking "well fucking finally, I can just go to a doctor and have this objectively tested, instead of yet another wishy-washy thing they can just brush off as being unreliable due to self-report bias!" and then going and getting those objective physical issues checked out and having all the tests come back clear. I know that it's not just that nothing is wrong and I'm psyching myself into thinking something is; there are demonstrable physical effects that can be documented by other human beings, things that I couldn't fake unless I was specially trained for years with the aid of performance-enhancing drugs, you know? Things whose effects are objectively measurable... and yet all the tests that would identify their cause, all of those? They keep coming back negative. It's like breaking your arm and it's very visibly in a shape arms are not supposed to be and there's bone sticking out and the X-ray technician comes back and says "congratulations, you'll be happy to hear that nothing is wrong with your arm in the slightest!"
