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So having seen the link in the OSHA thread Ill go back and read this properly (so you may have mentioned this already and I apologise!), but I have a type of epilepsy that gives me seizures but not actually ones that cause me to lose consciousness or photosensitivity and I was misdiagnosed for 3 years. The type I have is called "temporal lobe epilepsy" and the symptoms are loving weird. A stand out feature seems to be that it is hard to describe but the seizures can be best explained as an intense feeling of deja vu but for absolute nonsense. Like an incredibly real feeling memory of some random crap like you'd have in a dream. I also get a feeling in my stomach like I'm on a rollercoaster and some visual disturbance that I described as "like tunnel vision" which is something that turned out to gently caress me over later. If you look temporal lobe epilepsy up you'll find a load of people going "what the gently caress is going on?" Anyway, I also got migraines and went to a neurologist (who specialises in migraines!) in 2019 and was told 'its auras from the migraines, don't worry about it', they did an MRI though and it didn't show I was dying so I was just happy about that. Turns out though the temporal lobe is tied to memory and the seizures were loving with that, to the point where there are numerous things from that 3 year period I just flat out don't remember, though COVID time warp doesn't help there either. Went to another neuro who said "yep, you're right, we need to start you on drugs", but where I got hosed by describing it as tunnel vision is that he put that in my notes and the driver agency picked that up and insta banned me from driving for 12 months from the last seizure, despite me having years of demonstrable pattern/being fine. The meds seem to work though, now they're up to dose anyway. One of the "one in ten" side effects during that was increased anger/irritation so I was basically on an absolute rampage for about 3 months. So there we go. I appreciate I'm quite "lucky" compared to the other types, but the holes in my memory are loving weird and if I'd been diagnosed properly 3 years ago, I'd have avoided a lot of the practical problems I've had. So in the event anyone is reading this and has those symptoms, get at least two opinions!
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Feb 4, 2023 14:06
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| # ¿ May 23, 2024 22:44 |
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SerthVarnee posted:Losing your license for at least 6 months after your last seizure is the standard treatment for anyone with epilepsy in the US and I believe also in the majority of the EU. Yeah sorry, didn't mean to hijack your thread (which has actually highlighted a load of stuff I'd never thought about when it comes to seizure triggers)! The driving rules in the UK are a bit strange, in that they're quite specifically written, but vague on the implementation. For example, if you can demonstrate a pattern of seizures being specifically provoked or that you remain in control, they will actually let you drive, however the definition of "in control" is hard to define because what one person gets with temporal lobe epilepsy can be different to someone else and because there are no obvious physical effects, it's hard to compare. It mostly comes down to what you say when you describe it and whether they believe you. Fortunately for me, the medication seems to work (no seizures for about 3 months). Also it doesn't make me furious anymore. I was definitely guilty of the assumption that "epilepsy is flashing lights and then you fall down", I never considered other visual triggers like the ones you describe (though had as migraine triggers, though this doesn't seem to happen with me) or the variation in effects. It's fascinating to see the examples you've posted and the descriptions.
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Feb 4, 2023 20:54
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I had a sleep deprivation eeg the other day and at the end they said "ok now we're going to show you some flashing lights, this might trigger migraines or seizures" (which doesn't sound like a good idea if you actually had any photosensitivity) and I thought "ok well I don't think they affect me and how bad can it be?" Holy gently caress was that an unpleasant experience, like having your eyes pushed back into your head. Just incredibly bright and ramping up to Christ know what frequency. So anyway I guess that's the "is there a light trigger?" question I always had about my migraines answered!
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Apr 1, 2023 19:11
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SerthVarnee posted:Yeah it feels sort like the blunt end of a pencil being pushed into your eyeball, right? I always thought that there was a light trigger for my migraines but I could never conclusively work it out. Every time I see a bright light and it blows out part of my vision I worry I'm getting one. Possibly the epilepsy meds are preventing those though as a (welcome!)side effect.
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Apr 1, 2023 19:23
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SerthVarnee posted:It would be wonderful if the epilepsy meds starting having positive side effects as well. The list of negative side effects is big enough as it is thanks. We could do with a couple of good ones to balance things out. (note, I am not on epilepsy meds and with the amount of horror stories out there concerning the side effects, I'm pretty okay with that for now). I'm lucky that I got one of the ones that isn't too bad at all (lamotrigine), I think it messes up my sleep a bit but not always and that seems to be about it....I think. Also when you titrate up the dose it makes me intermittently incredibly angry which is a bit unfortunate. Oh and possibly bone loss I think.
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Apr 1, 2023 19:49
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Fortunately the irrational rage goes away once you're up to dose, I think! Definitely got the hosed up sleep as well, which has also faded. I think the bone loss might be one of those general ones as well but hey who knows, ask me in 30 years I guess. The one thing they kept stressing was "if you get a rash when starting this, go straight to hospital!" Because you can get an absolutely horrific reaction that fucks your skin up and can cause necrosis. But I didn't get that, fortunately!
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Apr 8, 2023 21:20
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Lazyhound posted:I’ve tried a couple of anticonvulsants (albeit as mood stabilizers rather than for epilepsy). I quit valproic acid after two doses because it made me too short-tempered, lamotrigine was tolerable but impaired my memory pretty badly. Oh really? I don't think the lamotrigine is making my memory *worse*, or I hope not anyway seeing as the seizures were wrecking it. I basically don't remember 2021.
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Apr 9, 2023 07:38
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I don't think lamotrigine has much of an antidepressant/mood effect by itself, but it is definitely used as an "activator" for valporate/in combination with other stuff.
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Apr 10, 2023 11:55
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Oh yeah it absolutely works for me, definitely a positive being on meds vs not because I am hopefully not getting as many holes in my memory as I was before thanks to the seizures. And yeah the "uh oh skin falls off" is really not very likely and is actually a possible effect of all sorts of things, one thing with listed side effects is that you can get some stuff that was like 1 in 10,000 and even then "maybe it was a coincidence", this is why it's really good to report them if you think you're experiencing an unlisted side effect! Anyway I expect the neurologist is gonna up my meds next week because I *think* I'm having seizures while asleep/half asleep, but I'm still at the lower end of the dosage so thats not really a problem. I honestly do feel lucky that they have worked for me.
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Apr 15, 2023 00:01
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SerthVarnee posted:Starting up on my epilepsy medication today. Wish me luck everyone! I hope it works! Which one have they put you on? I'm currently upping my lamotrigine dose so am intermittently loving furious which is much fun for all involved. Previous dose took me down to one seizure (I think?) in the last ~6 months except I might have had some at night but it's extremely difficult to distinguish between a weird dream and a temporal lobe "nonsense deja vu" when you're half asleep.
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Jun 1, 2023 09:47
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Oof I guess I'm lucky as I don't get that. Just the increased irritability and rage. And maybe a headache. Also it might be loving up my sleep but I'm not sure if that's temporary or not seeing as I've gone from 75 twice a day to 150 (though not there yet) over the last 5 months or so. What I hate about this is that I thought it had fully stopped them but then I'd get one out of the blue and we'll, back we go. I think the max is 200mg twice a day so if 150 doesn't work they might switch me and I have to titrate up and down which would be a pain.
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Jun 1, 2023 17:02
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The side effects taper down over time yeah, though you might find they come back when you up each part of the dose (the rage does with me lol). Super good that it's having a positive effect for you. I've found (so far) that the first amount they put me on (100mg a day) reduced them a lot, though I still had a cluster of them. Same pattern repeated with 200mg so now I'm working up to 300mg. I'm my case they're going up in 50mg jumps because if they can squash the seizures then I can get my driving license back after 12 months.... except that if I ever have another it's right back to square one. This is less of a thing now that my wife nearly has her license. Anyway instead of just an e/n I was gonna say that sleep weirdness is a side effect....for me it's kind of hard to tell between "crazy dream" and "temporal seizure" but I *think* it is loving my sleep up at the higher dose. I have no way of knowing for sure except waiting though, much like whether it's fully worked. Having that hanging over you isn't.... great.
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Jun 7, 2023 22:21
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SerthVarnee posted:When they up the dosage on you from 100mg to 200mg is that because the positive effects are wearing off or because they think you can handle the extra side effects in exchange for even more protection from seizure time? It's to try and eliminate the last of the seizures. I've gone down from several times a month (sometimes a week) to one cluster in 3 months, then one or two in 6 (discounting possible sleep ones), so the dose gets upped to stop those. That's assuming that the side effects don't persist and the sleep disruption wears off or is just "life stuff". It felt like I was about to have one the other day and it sort of didn't so that's good I think. If not then I'll have to tediously titrate a different one up and the lamotrigine back down which will take like 6 months. It does seem to have stopped my intermittent migraines though so there's that bonus!
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Jun 8, 2023 08:37
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Excellent! I think my sleep at 300mg a day is super hosed unfortunately so when I next go for an appointment in August I might get switched and have to taper down and up again.....if it doesn't fade away again so I guess there are two months to find out! Had a seizure about two weeks ago though so that sucks. But at least my wife can drive now so we're not range limited on where we can take our daughter which is a big relief!
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Jul 1, 2023 14:28
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Woah boy am I having some crazy dreams at the moment after coming up to 150mg twice a day. Like properly nuts ones. I hope this side effect fades away like the others because it's exhausting. And that this dose works because I don't really want to go higher if it's going to do this again.
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Jul 6, 2023 14:10
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SerthVarnee posted:It is super weird how they also become extremely detailed as well. I know right??? They're very specific things, it's extremely weird. At least I haven't had nightmares from them.....yet. Anyway I think that is listed as a side effect but my wife keeps telling me that "they list every single thing in there it doesn't mean it's going to happen", even my neurologist was surprised I got the "extreme rage" one.
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Jul 7, 2023 17:05
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SerthVarnee posted:Okay then. I've now tried that irrational rage thing you talked about. Hey at least you knew it was a possible side effect, until I realised that I (and my wife) just thought I'd become a [more] massive rear end in a top hat! I'm still getting insomnia/night waking and had a couple more seizures when half awake. Or I think I did anyway, one definitely, the others....not sure. So now I guess it's going to be "do they up the does and hope the epilepsy wears off" or "let's try something else and learn about a whole new set of side effects!".
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Jul 11, 2023 11:36
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Jfc. I just get insanely specific but generic weird dreams, but I am pretty certain now that they're going to switch me from lamotrigine to something else in a couple of weeks because the insomnia/too much REM is really not helping things. Up to 200mg a day I was fine but beyond that seems the side effects are balancing out the benefit (particularly as poor sleep is a seizure trigger for my type). Whether they switch me entirely or mix in another I guess we'll see.
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Jul 23, 2023 10:26
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Do not look at any videos of that idiot musk's crappy X logo on the twitter building because it's an incredibly bright white cross and itflashes intermittently at night . I'm not photosensitive but I know you are so avoid that one I already called him a gently caress on twitter for posting some other flashing version. Mainly because I like to call him a gently caress on twitter more than out of any expectations of it being seen. SerthVarnee posted:So the good news is that my pills are awesome and work great. Of lamotrigine? That's bad for something that has to be tapered down over time......I think I have about a month's worth atm.
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Jul 29, 2023 11:17
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SerthVarnee posted:Yup just ran across that X logo video in the OSHA thread. Not particularly happy about that thing existing. Yeah doesn't seem to be global from what I can find, but still, not ideal. Might be dependent on the manufacturer though.
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Jul 29, 2023 19:22
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SerthVarnee posted:My roommate and I just tested out the playability of Baldur's Gate 3. Never play the game Control if this has that effect on you, some weapons do that shockwave effect. I only know this because I just replayed it so have it in my mind! I'm at the annoying "wait and see" phase where maybe 150mg lamotrigine twice a day is the magic number and the last seizure I had was from the dose being upped which is a known trigger, or maybe it's not quite there and I'll get another in three months and then get put on an adjunct drug as well. The insomnia seems to have stopped though so that's good. Maybe they'll just go to 400mg a day, only one way to find out!
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Aug 9, 2023 22:56
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SerthVarnee posted:I'll keep both of these suggestions in mind, thank you. It's a shame because it is really good, but it also has a lot of dark areas with flashes and yeah that warping effect. You could maybe just avoid using the Charge weapon though!
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Aug 10, 2023 08:37
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You've got a borderline TV episode plot there at least though! If I'm getting the more intense dreams I think that *sometimes* it's a seizure but it's extremely hard to tell. I think I had one yesterday but that's based on getting the weird feeling of motion, but that could also be my imagination. If it was then I probably get put on an adjunct medication I've forgotten the name of already, but that needs a baseline ECG which I did and came back from the neurologist saying "btw you have signs of a left side thickened heart muscle you might want to get that looked at" so I guess that's actually been useful even if they don't bother with the meds!
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Aug 17, 2023 08:43
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Idk that's got a pretty good prog rocker vibe or something. If you find that offensive I apologise. Also that jacket's cool. I was talking to a relative that I haven't seen in ages this weekend and discovered that they didn't know I actually had epilepsy and all they knew was that I'd been banned from driving so I guess they thought I'd been drunk driving, glad I cleared that one up!
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Sep 3, 2023 00:37
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I think I'm probably going to get put on Lacosamide as an addition to lamotrigine as the lamotrigine hasn't quite 100% stopped the seizures (I had one about a month ago in an early morning) and the neurologist doesn't want to increase the lamotrigine further because of the side effects. I think the lamotrigine is still disrupting my sleep a bit even after a couple of months at 150mgx2 but that could just be getting old. God the potential side effects sound weird though. "Rare cases of mania or unsubstantiated sense of wellbeing" what. Also unsteadiness, double vision, confusion or aggression. Cool, look forward to seeing which of those I get.
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Sep 24, 2023 11:25
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SerthVarnee posted:Going through the epilepsy meds has got me looking at "regular" meds and their side effects and just bursting out "Is that all you got?!" That's a great way of describing that feeling and I think I've been having the same thing. Should probably tell the neurologist that! B33rChiller posted:Weird. Dr: have you considered we're all going to die? Patient: wow that's a downer i don't feel great any more. Dr: I pronounce you cured.
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Sep 24, 2023 20:40
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Oof that sucks, and it's something you can't do anything about. Do sunglasses help at all by damping down the flashes of light? When I was a kid my mother thought that maybe the same thing was causing the migraines I used to get but that wasn't the case. I stopped having them for years until pretty much when I started having the seizures, but fortunately the lamotrigine seems to have stopped them again and I haven't had one for a year. I should probably look up if there's a link where seizures cause migraines or migraines can cause seizures. I had some more a few days ago so will probably be adding Lacosamide into the mix, I hope I can bring the lamotrigine back to 200mg a day though because above that it has been loving with my sleep.
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Oct 17, 2023 09:32
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The Spidey Sense comment definitely tracks. I get that when I'm awake in that "feel like I'm about to but don't" sense, the only ones I've had recently have been when I've been in light/disturbed sleep and I think that's just straight into the seizure. I never had a defined trigger for migraines apart from possibly stress, but even that was inconsistent.
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Oct 17, 2023 10:06
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The guy sitting next to me on this train just opened his laptop and started playing vampire survivors which has a very large and obvious epilepsy warning when you start it and I've just missed a golden opportunity to say "excuse me!" and then start playing it myself 5 minutes later. e: this is much less funny when I sober up slightly and think about of it in context of someone who is photosensitive being next to someone doing this. Powerful Two-Hander fucked around with this message at 00:01 on Oct 25, 2023 |
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Oct 24, 2023 22:07
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That doesn't surprise me at all tbh. Is there an option anywhere to disable autoplay of store adverts? I've been more aware of things like this despite not being photosensitive, for instance there are two buildings I walk past fairly regularly where the external lights have been broken and flickering for a ridiculous amount of time. One thing I also noticed (because it happened in my house) is that incorrectly selected dimmers can create huge flickering in LED bulbs if types are mixed on a circuit, though that's less likely if your switches weren't wired by clowns. I get to go on Lacosamide to see if that gets the last of the infrequent seizures to stop seeing as upping lamotrigine hasn't and has messed my sleep up. Don't know if I'll be on both or bring the lamotrigine down to zero, that'll take ages as it's 25mg in two week reductions so every 50mg takes two months. That means 6 months of going down while waiting to see if the seizures come back with only Lacosamide.
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Nov 23, 2023 11:16
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Yeah well that probably puts my reading of the side effects of Lacosamide including "caution while drinking alcohol" and going "oh what this sucks" in perspective, because I probably enjoy drinking too much, if I'm honest. I think though this is because of the potential dizziness side effect as there's no "do not do this!" Listed anywhere Anyway, that's terrifying and I cannot imagine living with it. What is also kind of funny is that in looking at people's experience on Reddit (lol), there are people going "I fall over/get worse hangovers/get dehydrated and have seizures" and then others going "I get absolutely smashed twice a week and it's fine", I guess it's a land of contrasts! e: I hate the fact that the only way to know if any of this works is to just wait and see, possibly for months.
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Nov 25, 2023 15:45
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I am of course going to trip report this in true goon style. Probably just as well I'm no longer in basically any point in my life from 18 until my mid 30s where I was getting hammered a minimum of two times a week.
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Nov 25, 2023 16:17
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Societal conditioning I think. For millennials in the UK, drinking was basically what you did as soon as you could, then university was almost advertised as an excuse to drink heavily and frequently. Then it was probably 50/50 if you carried on doing that (to some extent) and I went to work in an area that had a big drinking culture as well. This is changing though apparently, and young people drink less on average. That's probably because it's so expensive though and they all take nitrous instead. Anyway I don't do all of that anymore, these days I'm more of a middle aged habitual drinker. Just like the other millennials! e: I do not necessarily endorse this behaviour! It'll probably do me some good to cut down a bit. Powerful Two-Hander fucked around with this message at 18:57 on Nov 25, 2023 |
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Nov 25, 2023 18:27
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Lacosamide week one (well, 6 days I guess)trip report: some nausea (I think), irritability which is a rare one but I got it with lamotrigine (well, that was more like rage) so kind of makes sense, and dry mouth which I absolutely hate and sucks. At least it's not falling over or double visions and I had two beers without falling over  I had a half asleep seizure as well, but medication adjustment can do that, particularly if it fucks with your sleep, and I'm only up to half dose. e: also tiredness which makes the irritability worse, cool. I hope this wears off in the next couple of weeks like it did with lamotrigine Powerful Two-Hander fucked around with this message at 15:50 on Dec 2, 2023 |
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Dec 2, 2023 14:16
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Alright the dry mouth and tiredness wore off, I had like three more seizures at the weekend though, but none the last couple of days so fingers crossed that was just a new medication blip. I go up to 100mg X2 next Monday, hopefully that doesn't cause the same stuff.
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Dec 6, 2023 00:44
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Powerful Two-Hander posted:Alright the dry mouth and tiredness wore off, I had like three more seizures at the weekend though, but none the last couple of days so fingers crossed that was just a new medication blip. I go up to 100mg X2 next Monday, hopefully that doesn't cause the same stuff. Switch up to 100mg twice a day was nowhere near as bad, just the tiredness I think. Now I get to titrate down lamotrigine to 100mg twice a day and see what that does, hopefully stop me sleeping badly and having wild dreams! Not gonna start that until January though, new year, new you etc.
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Dec 20, 2023 11:20
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I was mildly panicking that the Lacosamide wasn't working as I got another blast of extreme tiredness (like, absolutely wide awake to exhausted to asleep in the space of a couple of minutes at Ike 6pm) and a mini seizure, but then I remembered I have only been on the increased dose for 10 days and it just feels longer because of the time of year so fingers crossed that's just a side effect of increasing the dose. Anyway, turns out my mother has been telling people I have epilepsy, which I don't mind at all except that she's been saying more or less "something wrong with his brain" so I had various relatives asking "so what's going on with this.....thing".
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Dec 28, 2023 10:59
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SerthVarnee posted:I mean...it's not wrong...but it might have been smarter to have phrased it differently. Quite. Same thing happened with my dad telling me stepsister, she was like "so what is going on because I was told you can't drive anymore because of something but I don't know what". She probably thought I was drink driving and got banned or something.
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Dec 28, 2023 14:17
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SerthVarnee posted:Does your family only communicate in vague, unfinished Pretty much ye
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Dec 29, 2023 12:31
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I saw a still of that and I still don't believe it's real.
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Jan 13, 2024 14:32
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