Share your experiences with epilepsy.

[Speaker_for_the_Dead]

So. I was recently diagnosed with temporal lobe epilepsy. I’m a 23-year-old guy who’s looking at a future of medication and potential disease progression. While I can already hear the world’s tiniest violins playing for me, I do recognise that I’m still a really lucky guy: my medication is mostly covered, I’m still basically healthy, and I live in relative prosperity.

That said, I’m bummed out. This is scary!

I know what the disease is, which is why this isn’t in General Questions. I’m just wondering if anyone can share their experiences, good or bad.

[Hari_Seldon]

My niece has/had epilepsy. It apparently started after she was hit on the head with a tennis racket, but that could have been a coincidence. She took medicine (does dilantin sound right) for many years but it seemed to interfere with studying in college. She dropped out and continued on the drug. She had been going on with a few actual seizures and frequent episodes of visual patterns (auras, I think she called them). Then the visual patterns became more and more frequent and so, I think, did the actual seizures. Finally, she had surgery. Although she continued on medication for a few years, she has not had the slightest symptom since, maybe about 15 years. She now regrets only not having had it sooner. But YMMV. I gather this surgery is not trivial and can go wrong.

[Speaker_for_the_Dead]

It sounds exactly like what I have. Dilantin and auras both make sense. It appears that she had temporal lobe epilepsy, which is what I have. I’m probably looking at a future surgery myself. If I’m lucky, there won’t be any cognitive effects. The surgery’s pretty drastic: a temporal lobectomy.

[BaneSidhe]

I was diagnosed with childhood epilepsy when I was about 7-ish. I had several petit mal seizures, and one grand mal that put me in the hospital, which is where I was diagnosed. I was on Dialantin for quite a long time, but finally was taken off of it when I hit 14. I’ve had a couple of MRI’s in the past several years that show a tiny blip here and there, but nothing to be worried about.

I hope you don’t have to have surgery and that your epilepsy can be controlled with medications.

[gives you squishy hugs]

[overlyverbose]

I’m sorry to hear about your diagnosis. I have a form of epilepsy - the seizure type I have is partial complex. I get auras, then the shakes, then I have temporary memory loss for about 5 minutes (can’t remember the alphabet, names of those around me, etc.), then occasional long-term memory loss, but fortunately that loss only pertains to movies and less important events. For example, every movie I saw between the time I was about 15-16 through the time I developed my seizures is forgotten until I actually watch the movie. When the movie starts, I’ll say, “Oh, wow! I’ve never seen this!” Then as the movie progresses, my memory gets jarred and I remember what happens. I always joke that I was probably a really cheap date when I first started having seizures.

Anyway, once I’ve had a seizure, sometimes I’ll get a 3-day-long migraine, sometimes I won’t, but everything always hurts for days afterward and my emotions and sense of taste are completely wiped clean for about three days. But they come back, luckily, and I’m old enough I know how I’m supposed to react to things emotionally, so I just fake it 'til I get the feelings back.

I developed my seizures when I was living in South America in my early 20s. Unfortunately, I was climbing Macchu Picchu at the time. We had hoped that it was just an altitude thing or that I had a parasite in my brain because both would’ve had a more likely finite end. But my doctor has never been able to figure out the cause, so unless I’m on medication (I take Lamictal), I have them. If I take my meds like a good girl and keep an eye on my birth control (full-dose birth control pills cause women to metabolize Lamictal up to 50% faster than they would if they weren’t on them), I don’t.

Lamictal has worked really well for me. I used to be on Depakote (valproic acid) and I would vomit for about three hours a day two to three days a week every week. Which probably explains why I was so much thinner then. I’ve had two children on Lamictal and have breastfed them both, so far with no apparent lasting results.

I hope everything works out for you. I know there are several people on the board who have experience with seizures, so you’ll definitely get some good info here. But feel free to PM me or let me know if you have any specific questions. When I first started having seizures, it felt like my body had betrayed me. It was terrible, and no one I knew had any experience with it.

[AboutAsWeirdAsYouCanGet]

I had seizures when I was fourteen.I don’t remember too much about them. They affected my short term memory and happened in my sleep.
I was on Dilantin for years and years. Haven’t been on it since I was twenty.

[GESancMan]

I had a cousin who was diagnosed with epilepsy early in life. He was always good about taking his meds, AFAIK, but six years ago he had a bad seizure and didn’t come out of it. His father was present when it happened, and did what he could to save his son, but medical help arrived too late. Cousin was only 27.

Since yesterday I’ve been debating whether or not I should post this. Part of me feels like a dickhead for potentially escalating an already scary situation, but OTOH, if you’re aware this kind of threat is real, you’ll be able to educate yourself and take whatever steps are necessary to prevent it from happening to you.

[Green_Rosetta]

A guy I’ve dated on and off for years has it- it developed much later in life, in his 30s. His seizures are generally a kind of ‘zoning out’ with some stuttering that only last a few seconds, but sometimes he’ll have a bunch of them in the space of a few minutes and its really jarring. Every few months he will have a few really bad days where he gets a lot of them and can’t eat, etc. Last week he was hospitalized after having a grand mal and was in ICU for a few days, and it was revealed that the big dummy hadn’t been taking his medicine! So please, take yours, and it will probably be manageable. I think epilepsy is more common than you realize, so there is probably a lot of support out there for you too! Good luck.

[Speaker_for_the_Dead]

@GESancMan

Since yesterday I’ve been debating whether or not I should post this. Part of me feels like a dickhead for potentially escalating an already scary situation, but OTOH, if you’re aware this kind of threat is real, you’ll be able to educate yourself and take whatever steps are necessary to prevent it from happening to you.

No, thank you for sharing. The prognosis for my epilepsy (considering it has an organic cause) is both good and bad: it will almost certainly progress, but at the same time surgery is almost certainly curative. But… do I really want to give up a hunk of my brain? If that’s not giving up part of myself, I don’t know what is.

If I’m really lucky, they’ll never progess. I’ve never had a grand mal, and hopefully the lamotrigine will keep it that way.

Thanks everyone for sharing. Community feels really important to me right now, as hokey as that sounds.

[rhubarbarin]

My dad has a seizure disorder. He began having seizures for the first time about 1 year into the his recovery from a cerebral hemorrhage that killed almost half his brain tissue. That was a decade ago and you can’t tell from meeting him that he has half a brain (heh) although he’s forever changed.

Anyway, it’s fine. He does not have seizures any more, unless he goes off his medication (which his doctors like to try every year or so, even though he lives alone!!!) and the medication does not give him many side-effects. It’s not cheap, though.

Good luck and I am glad you are in good health and able to get treatment. It sucks to be sick, and brain stuff is especially scary (to me anyway). Don’t feel like you’re not allowed to feel sorry for yourself.

[Try2B_Comprehensive]

Muhammad is said to have had seizures. Dostoevsky wrote about it at some point if I am not mistaken…

Dostoyevsky had epilepsy and his first seizure occurred when he was nine years old.[11] Epileptic seizures recurred sporadically throughout his life, and Dostoyevsky’s experiences are thought[who?] to have formed the basis for his description of Prince Myshkin’s epilepsy in his novel The Idiot and that of Smerdyakov in The Brothers Karamazov, among others.

The best I can do is a quote from this link:

The most famous epileptic of the 19th century, Fyodor Dostoevsky (d.1881) wrote that epileptic attacks have an inspirational quality; he said they are “a supreme exaltation of emotional subjectivity” in which time stands still. Dostoevski claimed that his own attacks were similar to those of Muhammad: “Probably it was of such an instant, that the epileptic Mahomet was speaking when he said that he had visited all the dwelling places of Allah within a shorter time than it took for his pitcher full of water to empty itself.”

[overlyverbose]

@Speaker_for_the_Dead

If I’m really lucky, they’ll never progess. I’ve never had a grand mal, and hopefully the lamotrigine will keep it that way.

Thanks everyone for sharing. Community feels really important to me right now, as hokey as that sounds.

Ah, you and I are on the same meds. Not that that means anything, but still…

Any side effects? For what it’s worth, the lamotrigine (generic lamictal) has worked really well for me, and I’ve been on it for about 8 years.

[Speaker_for_the_Dead]

@overlyverbose

Ah, you and I are on the same meds. Not that that means anything, but still…

Any side effects? For what it’s worth, the lamotrigine (generic lamictal) has worked really well for me, and I’ve been on it for about 8 years.

I slowly upped the dose (once/week for 3 weeks) to drop the chance of my skin falling off (Stevens-Johnson), and each time I’ve felt like crap (flu-like, really) for about 3 days. But this was the last increase, so I hope after those 3 days I won’t see much in the way of side effects!

As for control… I don’t know. My seizures were rare enough (clusters every few months) that I won’t be able to tell if they’re doing anything till about the end of August!

[sjc]

I was epileptic as a child, from about 6 (?) to about 14 if you count from the first seizure I had to the last. I’m told I had partial-complex. No clear cause was ever determined as far as I know. I had a CAT scan which apparently didn’t turn up anything.

My seizures happened pretty much only when I was asleep or in bed going to sleep. Ther few exceptions happened when I was really stressed out and were quite scary (I mean scarier than my normal ones, which were scary too).

I never had absences as far as I can tell. Normally I’d be falling asleep and then I’d feel it coming on. My whole body would tense up and there’d be this sort of shuddering. Depending on the seizure I might not be able to see or talk at all or my hearing might be impaired.

They put me on Dilantin eventually and that stopped my seizures (unless I missed a dose, then I might have one). They weaned me off it about a year before I entered high school and I have not had a single seizure since (that was more than 15 years ago).

Definitely a different experience.

[Mean_Mr.Mustard]

Not trying to be a know-it-all, but the terms ‘grand mal’ and ‘petit mal’ are outdated and no longer used by the medical community. Instead, seizures are described according to their classification (absence, tonic-clonic, complex-partial, etc.)

From what you’ve described, and if your only seizure med is Lamictal, it sounds like you have partial seizures. When someone dies from a seizure, it is almost always from a generalized seizure, and even that is relatively rare.

Lobectomies aren’t quite as horrific as they sound (easy for me to say, I know), and they typically have very positive outcomes. I’ve worked with plenty of kids and young adults who have had literally half their brains removed and it is astounding how well they recover.

Best of luck to you.

[Speaker_for_the_Dead]

@Mean_Mr.Mustard

From what you’ve described, and if your only seizure med is Lamictal, it sounds like you have partial seizures. When someone dies from a seizure, it is almost always from a generalized seizure, and even that is relatively rare.

Yeah, I understand the distinction and know that I’m having partial seizures. But most people get “grand mal” way more than “generalised secondary with an temporal lobe eliptogenic focus.”

I appreciate your support regarding the lobectomy. Here’s to hoping I never need one!

[janis_and_c0]

Speaker, a good friend of mine has the same type of epilepsy you have, and had a lobectomy this summer, if you wanna know any details, feel free to PM me