Ask MetaFilter questions tagged with epilepsy

How/why does my brain not work properly?

Pseudology — Sat, 15 Aug 2009 18:13:22 -0800

I have idiopathic epilepsy and I'm trying to understand it better. I suffer from tonic-clonic siezures and I need some help understanding (I know idiopathic means the docs don't know why) what's happening and why. I have many questions falling into four different topics.

1) Is there any reason why depressants/anti-psychotics control my siezures besides the fact that they just do? Secondly is there any reason why stimulants do the same thing when they seem to do the opposite of most seizure control drugs?

2) Can anyone offer a more accurate description of what happens in a siezure other than "my brain just shorts out"?

3) Is there any clear insight (or even probably hypotheses) as to how an epileptic brain is different from a healthy brain (for example, when they give you an MRI what are they looking for?)?

4) Why do I forget things like who I am, where I am and how I got there for the first 30 minutes after the siezure?

What other substances might show up in a blood test for valproic acid levels?

Anonymous — Sat, 25 Jul 2009 06:17:02 -0800

What other substances might show up in a blood test for valproic acid levels? Asking for a friend:

Twenty-something female has been epileptic since she was a kid, and taking Depakote to control seizures. Her doctor ordered a fairly routine blood test to check for valproic acid levels, but since her last round of blood tests, she's gotten into the habit of smoking marijuana. She probably gets high once a week, on average, but sometimes more often. The lab order is written for a "Valproic Acid Level Test."

So on to the question: Is there any way to know whether her blood test for valproic acid might reflect her marijuana use? And if it does show up in a blood test, are there any legal repercussions? It seems like a valproic acid levels test shouldn't be looking for any other substances, and my instinct is that even if she tested positive for pot somehow, the doctor would just counsel her on the risks of drug use, but she'd like to know for sure.

Just FYI, she hasn't taken the blood test yet, but needs to schedule it in the next week or so.

Throwaway email at epilepsy.and.pot@gmail.com if there are any follow-up questions.

Do I have an inner-ear infection, or something else?

Effigy2000 — Wed, 12 Nov 2008 21:18:20 -0800

Do I have an inner-ear infection, or something else? I'm a 30 year old guy. For a few months now I've had a weird feeling in my head, best described as a momentary feeling of dizziness. When it happens, it only happens for maybe a second or two.

This usually only happens in a small number of circustances, namely;

* When I get up out of bed
* When I turn over in bed
* If I turn my head too quickly
* If I look up for longer than around 5 seconds

This all started about 4 months ago. I googled the symptoms and everything I read seemed to suggest an inner-ear infection. The Wikipedia page on Labyrinthitis seemed to suggest it would go away on its own within 6 weeks. And, for a time, it did seem to be getting better. But in the last week it's come back, almost as bad as it was when I first started feeling it.

This alone is cause for concern. But within the last fortnight or so, something else has happened which has given me cause to wonder if it is an inner-ear infection or possibly something else. It's likely the two things are unreleated, but I need to ask anyway (y'know... just in case they ARE).

There was a movie I watched a couple of weeks ago (can't remember which one for sure but I think it was American Gangster) where there were a lot of flashing lights (flashing on and off very quickly over and over again) for a minute or two. While watching it I started to feel really dizzy, a little sweaty and felt like I was going to pass out. Once the lights stopped I started to feel fine again. Then last weekend I was at a heavy metal concert where there were a lot of flashing lights and I started to feel the same way again. Again, once they stopped I felt fine.

That's never happened to me before. My first thought is epilepsy but this has only started in the last week or two. Hell, I remember playing some Killer Japanese Seizure Robot game (the actual name escapes me at the moment) back on the SNES when I was younger and I felt fine. I'm assuming that this bit of self-diagnosis is way off base, but that's what this question is for, right?

Anyway, yeah, I'm going to go see a doctor soon, but work is really, really busy at the moment and I don't have a lot of spare time so it will have to wait around a week or so (sadly). In the meantime, I thought I'd post this question to see what the hive mind's medicos thought might be going on, to give myself food for thought (and to better inform myself) before I do actually go see a GP sometime in the next week.

Dealing with epilepsy, specifically myoclonus

arnold — Mon, 04 Feb 2008 18:25:26 -0800

What kinds of little things do you do to copy with epilepsy? My wife recently has started to have myoclonus, besides the normal auras and occasional tonic seizures and are looking for ways to alleviate them a bit or at least cope. She's been prescribed Lamictal, and is easing into the dosage to prevent the rashes, before easing off her current medication (Carbatrol). We're supposed to go back to her neurologist in six weeks or so, but in the meantime "the jerks" become really distressing at night, especially when she's trying to fall asleep. When they finally stop her muscles are fairly sore.

Hope Me Pay for My Meds!

grapefruitmoon — Thu, 13 Dec 2007 12:10:08 -0800

Why Don't We Have Socialized Medicine Yet? Filter: Help me deal with privatized health care. I have epilepsy and it takes between $300-$500/mo in medication (depending on the month) to keep me seizure-free. I have gone from having no insurance to full coverage to COBRA, and now I'm back to no insurance. Due to the cost of COBRA, this isn't much of a difference, cost-wise, but once I have to go to the neurologist again... oh boy.

Is it at all possible to buy an individual plan or some such thing, given the dreaded "pre-existing condition"? I live in Rhode Island - does anyone know of any state plans that I could buy into? Can my parents pay to put me on their plan?

My previous insurance was from working for a SoulSuckingMegaCorp. While I have thought of going to Starbucks for the insurance, given my career path (Early Childhood Education), that's not really a smart move. I'm going to be nannying in 2008, so job-based health insurance is out for at least a year. I'm going through a divorce, and don't know anyone with good enough insurance to marry when it's finalized (though the thought has crossed my mind).

Anything, anything at all, even if it's just "Oh hey, if you declare yourself as a monkey, this company will pay for your meds!" would be really, really helpful.

Where'd the London 2012 video go?

migurski — Wed, 31 Oct 2007 11:53:01 -0800

Early in the summer, London 2012 released a hybrid animated / live action brand video showcasing their new Wolf/Ollins logo. It has since been scrubbed from the internet - I linked to a YouTube posting of the video that has been taken down (along with an excellent Save The Rave remix), and they've done a crack job of flushing it from the internet entirely. Apparently, there were health concerns. Help me find a copy of the original I loved so much!

photosensitive epilepsy

allelopath — Fri, 19 Oct 2007 07:19:07 -0800

I do not have "regular" epilepsy, have never had a seizure of any kind but I am now wondering if I may have photosensitive epilepsy. It happens when driving at dawn or dusk with sun flickering through a line of trees. When the sun reappears from behind a tree, it is a jolt like I've been hit in the head with baseball bat, (or cricket bat, if you prefer). Recovery is instant, no after effects.

This has happened all my life (I am 46 now). It is no better or worse than it has ever been. Looking on the web, I see that a P.E. seizure can be generated by various things (lights on a police car, disco lights video games, contrasting light and dark patterns) but these do not bother me. I am sensitive to bright lights (flashing or not), but this probably because I have light blue eyes. I find things like flashes on cameras and flashing text on websites annoying, but that's all, just annoying. I do not like watching the teevee in the dark, it gives me a headache.

Since I experience it only in the one certain circumstance and I don't have a seizure, does it just mean that I have a very mild case of it? or is it something else?

How do we handle our aggressive, epileptic dog?

missuswayne — Tue, 16 Oct 2007 19:13:02 -0800

How do we handle our aggressive, epileptic dog? We have 2 kids (3 yrs and 6 mos) and a dog (5 yrs). Our dog is part border collie and part pointer. We didn't plan on having kids when we adopted the dog, and since the kids came along life with the dog has become stressful. He's actually very affectionate, but he's a troublemaker (major garbage picker), very protective and can be extremely aggressive. Oh, and did I mention his anxiety? Let's just say that if he ever gets loose when the mailman is around, that mailman is toast and then we'll lose our house after his family sues the hell out of us. Not good. Not to mention if he ever hurts one of the kids (although so far he's been ok with them). We keep him in his crate behind a door when our son's little friends are over.

We've tried training him (he was the star of his class) and we've had him in for behavioral analysis at the University of Pennsylvania animal behavior clinic. Basically the answer has always been: work with him, exercise him, give him lots of challenges, lots of positive reinforcement, keep trouble away from him. He's been on Prozac for two years (somewhat helpful). Problem is, we don't have the resources to take care of this dog. I take care of the kids full time, and my husband works 12 hour days. Time-wise and energy-wise we are maxed-out, and the dog is consistently an afterthought. We feel very badly about this.

To compound matters, the dog now has epilepsy. It started out with a couple seizures over 10 months, but over time the frequency has increased dramatically - he's had two in the last two weeks. Our vet would prefer not to put him on meds yet due to the side effects. So we've given up on finding another home for him ("Good luck," said our vet).

The question is: Now what? The only solution I see is to euthanize him. I don't want the kids to see him have a seizure - it would be too scary for them. I also don't want him devouring any of our neighbors. DH doesn't want to euthanize until we've exhausted every single option open to us...but I'm not sure what our other options are. Help!

Epileptic and missing meds in Ontario

the dief — Fri, 05 Oct 2007 05:46:56 -0800

So my epileptic wife and I moved from the US to Ontario a couple of months ago, and we just found out that one of her anticonvulsants is not available in Canada. This is potentially Very Bad. My wife has very difficult to treat epilepsy. She's now on three different anticonvulsants -- Lamictal, Zonegran and Trileptal. Even with those three, she still has complex partial seizures around once a month, usually after she's been sleep deprived and usually at night. While we were at a appointment with the family doctor a couple of days ago trying to get refills we found out that Zonegran (aka Zonisamide) is not in the Canadian formulary. We brought over around a three month supply when we moved, which is why we're only finding out about this now. Going cold turkey on a neurological drug can be very bad and we're pretty worried about what could happen.

Unfortunately, this being Ontario, it's very difficult to see doctors. Her first appointment with the neurologist up here isn't until January, well after her supply of Zonegran is due to run out. Calls to the neurologist's office explaining the direness of the situation are useless -- we're on a cancellation list but they're not at all sympathetic to our situation otherwise, which is frustrating. The family doctor is sympathetic, and we can see him reasonably easily, but he has limited powers to diagnose neurological problems. He can, however, prescribe stuff, which is how we're getting refills on the Trileptal and Lamictal.

I realize that YANMN (you are not my neurologist), but if you're of a medical or neurological bent and have any advice for us, I'd really like to hear it. Things like:

1) Is there an analog to Zonegran that would be available in Canada? Something other than Topamax, which she does not tolerate well at all.

2) Or hey, maybe going up on the Trileptal or Lamictal might compensate?

3) Is there some way to see any neurologist sooner? We're in Hamilton, but I would drive all over the GTA (and really, SW Ontario and hell maybe all of Ontario) if it meant we could get some sort of help before the Zonegran runs out in 3-4 weeks.

4) Failing that, how to force the issue with the local neurologist? An ombudsman? Complaint board? MPP? Badgering Stephen Harper or Michaëlle Jean? Epilepsy Ontario?

Thanks a pile for your help.

Canine Epilepsy

I_Love_Bananas — Mon, 20 Aug 2007 07:32:06 -0800

Your experiences with canine epilepsy? So my dog has developed idiopathic canine epilepsy (3 seizures in 3 days). Blood work showed no physiological causes- it "just started", thus the "idiopathic" designation.

Anyone been through this? He’s an adult beagle and my vet recommends starting a dosage of Phenobarbital. It’s been very stressful and difficult to see him go through the seizures. I’d welcome any of your stories/recommendations.

Are generic and brand name drugs exactly the same?

samh23 — Wed, 13 Jun 2007 13:05:17 -0800

Is it possible for me to experience different side effects on a generic drug vs. its brand name equivalent? The drug in question is neurological. I take Tegretol for epilepisy (siezure control), 200mg twice a day. Yesterday my doctor gave me a new writ, and I took it to a new pharmacy. I didn't realize they gave me the genetic Carbamazepine until I got home. Figuring it was exactly the same, I didn't worry about it.

Now I feel tired, somewhat out of it, and most humorously, I am slightly slurring my words. It's like I'm on a bit of cold medication. None of these side effects are uncommon for the drug. But I've been taking Tegretol for 20 years -- I'm very familiar with it. I didn't experience these effects (or experience them to this degree) on the brand name. That said, I could just be tired, sick, stressed, etc.

Is it possible that Carbamazepine is the culprit? Shouldn't the two drugs be exactly the same? I mean, a chemical is a chemical...right?

Help me leave my past in the past

mitzyjalapeno — Wed, 06 Jun 2007 08:56:43 -0800

StressFilter: I am an epileptic who experiences grand mal seizures. Ten days ago, I had 3 seizures within one day, and it seems like the cause was emotional stress.
I'm trying to work through something emotionally painful in my past, but when I start to move forward, I have a seizure. My question is this: how can I address something so painful without stressing myself out to the point of a seizure? Here's my story: fifteen years ago, my step-father died. He had been molesting me for about two and a half years. My siblings were very young; neither remember him that well. I was around 11 when everything came to a point. I went to therapy for a while, and I thought I was over it.

I recently started having nightmares of him again. I've been calling my husband by my step-father's name and even hitting my husband, in my sleep. I made an appointment with a therapist and spoke with someone at their office explaining my history on a Friday. The next day is the day I had three seizures.

I've just recovered enough to start talking clearly again, and I was discussing the possible causes with my husband last night. After about ten minutes of talking about my deceased step-father, I started to feel like I was going to have a seizure, almost like I was losing control.

My doctor thinks that I should just deal with this current bout of seizures and then I can move on to deal with other issues in my life. But if it's the hurt feelings bringing the seizures on, then it seems like I'm stuck in a loop. I'm asking for your experiences (without details, if you like) in dealing with any of these situations: seizures, sexual abuse, and stress in general, because this is just one of many stressful factors in my life.

Here are some other notes: I've had epilepsy for eight years, my medicine (Dilantin & phenobarbital) is controlled, but the neuro wants to switch me anyway (probably to Depakote), and I have two children: one five-year-old autistic son and one nineteen-month-old daughter. I'd like to be there for them as long as I can, and I don't want them to ever see me like this again.

Epilepsy, health insurance, employment, and a stupid little town

Anonymous — Mon, 23 Oct 2006 18:17:05 -0800

This question is for people with epilepsy or other lifelong conditions or spouses/boy/girlfriends of them, and is related to medical insurance and employment. My girlfriend has a degree in Journalism, and has experience in a few other fields (graphic design, photography, video), all of which are relatively useless where we live right now. We live in a smallish (30k) town with no real proper avenues of employment for her. We have a year lease that's up in about 10 months after which we're pretty sure we'll move to a metropolitan area for a couple reasons, not just the issue of her employment.

In the meantime, she has a crappy job that she hates working with people that suck. She'd just take a couple part time jobs and quit the damn thing, but she needs medical insurance because of her epilepsy. She said she tried for insurance that wasn't through employment before and they wouldn't accept her because of her preexisting condition. Admittedly, we're both a bit uneducated about this since during college she was covered by her parents' insurance.

We're looking for people who've been through similar situations (stuck in a situation with low prospects for gainful employment, but requiring health insurance) or at least know what _not_ to do. At the very least, some sort of words of experience in general would ease her mind a bit, since she feels pretty shitty about the whole ordeal.

asmallautomobile@gmail.com

How can I properly time my boyfriend's epileptic seizures?

Anonymous — Mon, 22 May 2006 17:48:12 -0800

My boyfriend has epilepsy. So far I've only witnessed two seizures (tonic-clonic, or what they used to call grand mal). While I felt mostly prepared for them (I'd done a lot of internet research) I found timing them quite difficult because while the beginning was distinct, the end wasn't. His seizures seem to start with rigidity and convulsing, which lasts a minute or so, but then he falls into loud, gutteral, heavy breathing. The 'in' breath sounds a bit like a loud, ragged, snore, and the 'out' breath is a loud raspberry. In all my reading online, I found only one reference to this breathing, on an epilepsy forum: "The loud snoring is called stenorous breathing and it's when the trachea is collapsing or obstructed, and that's dangerous. Turning blue or purpole means a serious lack of oxygen content in your blood stream, which can result in brain damage and even death". This breathing goes on for a while and then tapers off.

So I guess I have two questions:

1. Is this breathing normal when someone's having a seizure? Is it dangerous? Do we need to do something about it?
2. When is the seizure actually finished? The 'heavy breathing' phase seems to last a long time - five or six minutes - but it gets softer towards the end and then he just rolls over and falls asleep. I'm worried that I'll miss my cue to call an ambulance if he's in status epileptus (he's never gone into status epileptus, I don't think, though his seizures seem to be quite long).

Anyone here got any experience in this sort of thing? I will definitely be asking to go with him on his next appointment with the neurologist so I can ask questions, but that won't be for a few months.

Snoring and epilepsy

Anonymous — Sun, 05 Mar 2006 12:50:54 -0800

Snoring treatments for people with epilepsy. I love my partner to bits, but his snoring is driving me crazy, and seriously impacting my ability to get a good night's sleep. (He has the wonderful ability to fall asleep at a moment's notice, in almost any situation - while I'm a spoiled sleeper who needs absolute silence and everything just right.) The trouble is, he has MS and a form of epilepsy that prevents him from taking over-the-counter snoring treatments - they all contain a chemical that, he knows from past experience, interacts with his epilepsy in bad ways.

So what to do? Earplugs don't offer too much help (my hearing is far more sensitive than I'd like, and the slightest noise - even heard through earplugs - can keep me from falling asleep), and I can't think of any alternative but sleeping in a separate room, which would be unpleasant and heartbreaking for both of us... but I'm tired of being so tired, having to stay awake until I'm about to pass out before I can fall asleep, then waking up several hours too soon, all because of his snoring. Thanks for any help...

Flashing dreams and epilepsy = bad combination?

Orange Goblin — Fri, 07 Oct 2005 09:00:08 -0800

If you have epilepsy, do you have an attack if you dream about flashing lights? If not, why not?

How can epilepsy affect sexual desire?

Anonymous — Wed, 08 Jun 2005 10:56:19 -0800

I've just started seeing a really wonderful guy, and so far, I'm, finding two things unusual about him. Firstly, he has epilepsy. Secondly, he won't go down on me. This may sound lame-brained, but I'm wondering if there's a connection between the two. He acquired the epilepsy about five years ago as a result of a head injury a few years previous. I am totally cool with this, and have done some research into what to do if he has a seizure when I'm around. He's taking some anti-seizure medication which he says can affect his sex drive (though that hasn't been an issue for us thus far). If anything, I find the fact that he has epilepsy a bit sexy, just because vulnerability is sexy. Yes, I'm smitten.

Here's the other thing, though: we've been seeing each other for about six weeks, and so far he hasn't gone down on me. I asked him about it, and he says that he just doesn't do it any more - that he used to really, really enjoy cunnilingus, but that about five years ago he just stopped. He, himself, seems a little confused about why he went off it, and has been unable (or unwilling) to fully explain it to me. He says he just stopped and can't seem to start again. He's tried, with former girlfriends (who were less than happy about his aversion) with no success.

I'm not really too worried about the 'no cunnilingus' thing. I was surprised by the news, and a little disappointed... but the last thing I'm interested in doing is trying to make someone do something, sexually, that they don't enjoy. But I'm curious about whether these two things - the onset of epilepsy, and his distaste for a sexual practice he'd previously enjoyed - may be linked. Has anyone heard of epilepsy (or its associated medications) affecting not just general sex drive, but preferences for particular acts?

witnessing epilepsy

mdn — Fri, 27 May 2005 01:30:59 -0800

this comment made me wonder: what is it like to witness an epileptic seizure? I am interested in hearing about your experiences, the specific feelings and thoughts that are brought out by, watching someone have a seizure. Possibly useful for something I am writing, but mostly I am just curious because of that comment. (I have never seen one.)