Back in February of 2007, I was diagnosed with epilepsy.
Now, I’ve gotten it under control so that I only have had “auras” every couple months or so. It’s usually because I’m sick, stressed out, or having a bad menstrual period.
However, lately I’ve been having myclonic jerks. It’s not nearly as bad as the auras, but it’s still fucking annoying and uncomfortable. (Thankfully, they’re not major, just a little “twitch” that takes less than a second)
Goddammit to fucking hell! Anyone else have to deal with this shit?
Epilepsy is one of the least understood, and potentially most devastating conditions there is.
I am so glad to hear your own case has been mild, and seems, from your reports to be manageable with appropriate therapy. The amount of medical information available is enormous, and any expectation that it will be uniform in any way are naive. Doctors don’t like patients who don’t get well, and epilepsy is often the absolute epitome of intractable conditions. And you generally don’t see your doctor while you are having a seizure, only afterwards.
There is reason to be confident. A very large majority of people with epileptic symptoms do not have to forever change their lives beyond establishing a few new areas of knowledge,
and exercising a bit more than an average attention to personal health.
I hope this is your situation, and that over time people who find out that you have experienced it will think, “Oh, so you got over it!” The difference is that the getting over doesn’t end.
My boyfriend has epilepsy. I never new about it until one day I heard a loud thudding noise coming from upstairs. Watching him have a seizure was one of the scariest things that I’ve ever experienced. For awhile after that I suspected he was having Absence seizures, but those seem to have disappeared now that he is back on Dilantin again. Fortunately for him, he’s never driven to start with, so that’s not an issue. He definitely does seem to twitch sometimes when he’s trying to get to sleep. I guess I’ve just attributed it to Restless Leg Syndrome or something because I have that too. Maybe I’ll bring that up next time that he has a doctor’s appointment.
Anyway, Guin, I know it’s a frustrating situation. Sometimes for us it’s kind of like the elephant in the room. But life goes on and we just deal with it the best that we can. So, I wish you well and many {{{hugs}}} too.
I hear you – I have temporal lobe epilepsy, which is fairly mild in my case and controlled with medication. I got the definitive diagnosis when I ended up having a tonic-clonic (aka grand mal) at work a few years ago. Reading Wikipedia, it’s practically textbook from what few bits I can remember.
Nothing quite like figuring out after the fact that one managed to massively concuss oneself in the process and earn oneself a visit to the ER thanks to concerned coworkers. :eek: :smack:
As a result I got put on a regular medication regimen (although I’m underdosed for my age probably because I’m so tiny) and still drive once I proved I was stable on that dosage. I do carry several bits of paper in my wallet and wear a medical alert bracelet as a form of paranoia.
If it’s changed like that, have you spoken to your neuro about adjusting your medication?
**Guin, ** I’m glad you’ve got your seizures under control. I can definitely sympathize about how much having a seizure disorder sucks. I used to feel like my body had betrayed me every single time I had a seizure, and I’d panic whenever I’d feel that odd little tingling in my head, even if it didn’t mean anything. Fortunately, they’re controlled now.
Anyway, since it sounds like your condition has changed slightly, I’d second lizardling’s suggestion to talk to your doc. Seizure triggers can change; also, if you’ve only been stabilized for a couple of months, your body may be having some uneasy adjustments to your meds, or maybe you just need the change the dose or the drug or both. Obviously I’m not a doctor (though even if I were I probably wouldn’t be able to give more info - lots of people with epilepsy never find a specific reason for it). Good luck!
My husband is eplieptic & I can totally sympathize with your frustration. Besides having tonic-clonic or “grand mal” siezures (which happen only during sleep) He’s also had three episodes of other siezure-relalted wierdness that has remained undiagnosed. The Lamictal & Dilantin he takes help a lot, but he still has them anywhere from once a week to once a month, roughly.
I also had a friend die from siezures, & if I thought about it too much, I’d drive myself up the wall.
It was pretty scary the first time I saw him having a siezure, but strange as it may sound, it happens enough that I’m used to it. Take care, Guin, & hang in there.
Yep. I’ve got Multiple Sclerosis and get the twitches (never knew the name of them before) all the time. Fortunately, they aren’t too bad for me. Just a single muscle thing, rather than a whole arm or leg. It’s particularly annoying when it happens on my eyelid.
I remember you posting that you’d been diagnosed. Sorry to hear you’ve been having this delightful new symptom I’ve had the occasional hypnic jerk form of myoclonus (the whole-body twitch just as you’re falling asleep) and even that is annoying - it’d be a real pain to have it at other times.
Thanks. I’m actually sorry I bought it up - I agree wholeheartedly with the pitting but it can’t have made you feel any better. Take care of yourself, okay?
Epilepsy does the most harm when it strikes earliest, not so much by what it does, but what the patient cannot do because of it. Infants require continuity of interaction with the world for almost every type of development. Epilepsy can entirely eliminate that continuity. In addition, severe epilepsy (that which requires constant medication) is very complicated to medicate, and the medicines are all subject to interaction with almost every other thing a person eats.
The saddest thing is that the statistical trend over long term treatment is the gradual loss of effectivity for each monotherapy choice, and a gradual increase in the dosages, and need for multiple drugs. In an adult, experiencing the first need for drugs, this is less severe a limit, and their bodies are less involved in critical development. In infants, it is statistically more likely that eventual dose requirements will become less effective, and more toxic each time the adjustment is made. Decades later other health problems can develop. Iatrogenic disease associated with epilepsy are another difficult set of problems, and must be considered in making treatment choices.
A depressing subject. I do wish to say that as I originally mentioned, the etiology, and prognosis of individual cases is highly variable. I did so very deliberately. Not every case is disabling. Many people live long, and relatively unaffected lives with epilepsy. But it is a disease that must never be ignored. In some cases, tragic is a woefully inadequate description.
Fortunately, it didn’t pop up until I was twenty-seven, so I didn’t have to grow up with it. But why would it just come about like that? I found that really strange-I never had a seizure before '05.
My daughter isn’t epileptic, but she does have myoclonic jerks; she’s been having them her whole life. I’m not sure if she’s ever identified stresses that trigger them, or whether they’re just her nervous system misfiring. But she gets them really strongly, the whole-body variety. I only get them occasionally as I’m falling asleep.
Epilepsy is a tough disease. Good luck to everyone dealing with it.
'nother fit pitcher, here. I was diagnosed in '96. After brain surgery, I was on meds for a year, off a year before a grand mal at a coffee house, playing chess. I’m currently controled by Dilantin, and five years siezure free. Just got clearance to drive from CA DMV.
I get some wierd twitches in my thumb, sometimes, not enough to move the thumb, just one single muscle, actually in the pad of palm muscle just below the thumb. You can see it twitching below the skin, with the rest of my hand still.
I had some sort of wierd partial siezure two weeks ago. My jaw was working, like chattering teeth, and I couldn’t move my tongue out of the way. I could barely keep from biting down all the way, and had to move my tongue out of the way with a finger. I was meeting some new people for the first time, and my auras feel like being in a situation I remember dreaming about. That happened, but I usually get those auras without any other symptoms. I was also changing back to lamictal from zonegran, but I’d been back on the lamictal for about a month. God Knows, it’s a Hellerver thing to live with, not knowing when you might just suddenly check out and let your body drop.
