What is having a seizure / fit like?

Factual Questions
21

My nephew got his license finally, a few months after his 18th birthday.

He had a wreck where he hit a parked car. Oopsie. A few weeks later, he did the same thing - several cars in fact. The policeman who took that report said to my brother that my nephew seemed like he was recovering from a seizure.

My brother pooh-poohed that - nephew had no history of seizures. Then a few days later, he had one at the dinner table - of the grand mal sort. Oooookay - guess he does have a seizure disorder.

So, they were lucky that all he did was damage some parked cars (they don’t think the first accident was a seizure).

Interestingly, they had a lot of trouble getting him removed from the insurance policy - apparently simply surrendering his license to the state wasn’t enough for the insurer. My brother had to write a letter saying “if he drives, you aren’t responsible, I’m on the hook for everything”.

As an aside, my nephew’s seizures appear to have been brought on, or perhaps more accurately “allowed to happen” as a result of some antidepressants, which lowered his seizure threshold.

Re “progressing”: yep. My other nephew (his brother) has severe autism and was diagnosed with absence seizures when he was 3 or so. Reasonably well controlled for many years, with Depakote or something. About 2 years ago, he had several grand-mal type (tonic/clonic?), out of the blue. Surprise!! :frowning:

22

I haven’t had a seizure in almost three years (YAY!), but I made a pact with myself to use public transportation. My grandfather got into too many accidents, and because epilepsy is so unpredictable (I didn’t even start having seizures until I was in my late 20s), there’s no guarantee that I won’t have one in the future. Just because I have them under control now doesn’t mean anything.

And if I were to cause an accident and hurt someone, I’d never be able to forgive myself. So I just take the bus. It’s cheaper (hello, the price of gas!), and the bus system here is pretty damn good. Plus, I still have myoclonus as a result of my epilepsy, and I think that would affect my driving as well.

23

I usually get a ride to work, but I have a pass that lets me ride the bus for half price. I meet their definition of disabled, be that for better or for worse.

24

Yeah, that’s happened to me. At one of the hospitals I was at for a week, my mother and sister frequently visited me and tried to keep me “grounded” so to speak by playing Uno with me.

One day, though (which I don’t remember), it was really bad. I couldn’t play Uno, so Mom simply pulled out cards, one at a time, and asked me, “What’s the color?” or “What’s the number?”

…I thought 8 was a color. When she got out to the car, she started crying absolutely uncontrollably, convinced that she’d lost me.

Another time in the same hospital, my pastor visited me, and I apparently asked for communion. He gave me communion with a saltine cracker and one of those little plastic containers of grape juice.

The staff noticed a dramatic improvement in my mental state very soon afterward.

25

Once I had one right before I got up in the morning (a small one), and for the rest of the day, I couldn’t talk. All I could do was stutter for the rest of the day.

Some advice. If you ever see someone seizing, do not ever put your hand in their mouth. You will get bitten – badly. Nor should you try sticking something in their mouth, because that could injure them as well. The old “swallow your tongue” is largely a myth. Roll said person on their side. More info on this.

(I once bit my own wrist during a seizure – I guess I was sleeping with my arm across my face or something. I still have the scar.)

Epilepsy is a very weird disease. I have a family history of it, but like I said, I didn’t start having seizures until I was an adult. My grandfather had seizures as a child, then they stopped when he hit puberty. But he started having them again when he was in his forties.

I do a lot of research on it, as much as I can.

26

Have you heard of the Epilepsy Phenome/Genome Project? They are looking for people with a family history of epilepsy they can research so they can (hopefully) figure out the genetics behind it.

27

My neurologist didn’t have my license pulled. He said it was too much of a pain to get it back. He just told me that you never want to hear these words: “So, you’re telling me that just before you killed my client you were diagnosed with a seizure disorder?”. Point taken. After I started meds the doc said I would need 6 months seizure free to be OK to drive. I had a breakthrough seizure 3 months in and ended up bumming rides for about 10 months. Not fun. I too have a medical form that I am required to have in every vehicle I drive. It states that I damn well better be medicated.

Someone brought up numbers… during my 72 hour EEG (part of the diagnosis process) I racked up 18 seizures. I only flagged 3. The brain is a funny, funny thing.

28

Were you able, after the fact, to sort out when the other 15 occurred, and how you were feeling at the time?

Did they comment on the difference in the EEG patterns between the 15 and the 3, e.g the 15 were smaller magnitude, different types, etc.?

29

My BF didn’t have his license yanked but almost lost it. His seizures are due to a brain surgery, so with sufficient healing, should taper off and stop so he can be weaned off the meds. Anyway, he had breakthrough seizures every 3-4 months – or just as he was about to hit the 6-month mark, which was really frustrating. He ended up not driving for about a year and a half and had to resort to hiring a driver to get around. His meds were adjusted and he switched docs somewhere in there, so one day he got a love note from the DMV saying that one of his docs had reported a seizure (or maybe it was an ER doc at some point), so his license would not be renewed unless he got a doc to sign off. His neurologist wouldn’t, so I think he got his GP to sign off, with his assurances that he wouldn’t try to wean himself off the meds. He was still “feeling dizzy and weird” for a while and ended up getting neurofeedback treatments, which appear to have been very helpful. He’s been feeling great and is close to one year seizure free. And he got his license renewed and is starting to think about talking to his doc about tapering down the meds.

30

Mon Dieu! I’ve only ever had the one, and that was bad enough. How did it feel having three that you knew of, in (relatively) rapid succession? (To say nothing of the 15 you didn’t know about).

31

What does this mean?

32

Sounds like he had 18 seizures but only noticed it 3 times.

33

Well yeah, but I was thinking that he might have looked back and realized “hey, that was when I felt kinda drowsy” or “that was when I was really PISSED at the cat” or “that was when I thought the afternoon sped by and I was glad class seemed to end so fast” or something like that.

34

In my experience when I’ve had multiple seizures I feel a mixture of frustration, annoyance, exhaustion and anger with a dash of fear and a pinch of depression.

I’ve been on four different medications for over a decade and a half and at the best point went a year and a half without a seizure. When I was first diagnosed they said “You will grow out of it.” I’ve been told by one of the top 5 neurology centers in the US that I’m not a candidate for surgery, and the standard answer I get when I tell my (now third) neurologist I’ve had more siezures is “let’s increase your dosage.”

:mad: GAHHHHH!!! :mad:

OK, I got that out of my system. I feel better now.

35

I’m not allowed to drive a LGV for a further 3 years (it was 10 at the time of my last seizure.)

During the time when I couldn’t drive because of a seizure I was given discount on public transport, and could not drive for a year. The DVLA in the UK has quite a lot of varied rules and regulations for taxi drivers etc. It’s also different if it was your first seizure, or just a one off.

If you don’t 'fess up, the DVLA can take away your licence, so it’s in your best interest to let your doctor know.

I haven’t had a seizure in 7 years, and I no longer take medication, so I believe I’ve grown out of it (a prediction my doctor made when I was a child), but I still remember quite vividly how it all happened. I believe I’ve had 4 or 5 in total, but I’ve made many more ‘near’ seizures.

I have tonic-clonic (grand mal) seizures, and they always begin with an aura. I see rainbow coloured lights in the upper right hand corner of my vision. They move in on themselves like a kaleidoscope, eventually growing brighter and bigger. Where the flashing lights were, my vision goes completely black, and this blackness too begins to encompass my entire vision. It’s really quite strange, seeing everything slowly disappear around you. During this time I’m completely conscious and aware. I can move around and converse normally, and to anybody around me it doesn’t look like anything is wrong. After a while of seeing just pure blackness I go unconscious. I generally woke up in an ambulance, or in hospital.
As a child, who didn’t really know this wasn’t normal, I used to run to my bedroom, hide my head under the pillow and concentrate really hard, and these flashing lights would go away. I’d feel dizzy and lightheaded afterwards, but otherwise I’d be fine. I remember not really being able to communicate this properly to my parents at the time, but of course one day they didn’t go away and I had a full on seizure, which was when I was diagnosed.

One strange thing is that I only ever had seizures whilst playing video games, specifically older games on a CRT TV. However, I was constantly told by my epilepsy specialist that I didn’t have photosensitive epilepsy. I had various scans and tests for this, and they all came back negative. I never really found out why video games (and never TV, nor strobe lights etc) did this to me. I was never on them for long either when it happened.

The worst part of seizures for me wasn’t before or during, it was after. I’d always have the most mind-splitting headaches you can imagine. I remember one time at the hospital it was so bad I couldn’t keep my head still for long, and kept flinging it from side to side because it dulled the pain somewhat. I imagine that was quite distressing to watch. It was like someone was driving a chisel wrapped in barbed wire through my skull.

My ‘ability’ to stop the aura from expanding was never believed or taken seriously by doctors, which frustrated me endlessly, and still frustrates me. Although I’ve been seizure free for 7 years, the aura did happen every now and again. I think I stopped seeing it about 3 or 4 years ago. Whenever it happened I could control it by putting myself in complete darkness, closing my eyes as hard as possible and massaging my temples. I guess that’s only interesting to me, not to doctors.

36

To respond to several posts…

Wind; the electrodes on my head were wired to a box (in a fanny pack), which in turn was connected, via network cable to a PC. The PC recorded audio and video (including night vision). I was to sit in front of the camera as much as possible…I could disconnect for potty breaks.
The fanny pack box had a button on it that I was supposed to press when I felt a seizure. This would flag the recording and the doc could check the waves, the audio and video to see what I did…or didn’t do.
The full review of 72 hours of brainwaves showed 18 seizures. I only pushed the button on three of them. Apparently a number of them happened in my sleep. I did wake up once and press the button.
I never got a full story on each one, strength or duration or whatever. The doc said, if we see one, we treat. It doesn’t matter if you have one or a hundred.

I believe I mentioned earlier in the thread that the symptoms that I noticed most were the inability to speak and hearing people (or televisions) say things they weren’t saying. So, if no one was talking…or I wasn’t..I may not have noticed. The ones I did notice had symptoms of vertigo and fuzziness.

On a side note…looking back, I had an instance of being unable to talk way back in 2007. I was at lunch with a vendor…talk about awkward. So I was, apparently, seizing back then. The doc did say that , once they start, they tend to accelerate.

Anyone want to compare med $$?

37

Free on the NHS? :smiley: Or is that cheating…

38

No, I hadn’t heard of it – thanks for the info!

39

Sorry for the double post – editing time limit!

Fake Tales of San Francisco, I get the after headaches too. Sometimes they’ve been so bad I can’t even move my head an inch – I’m not even exaggerating. I could just lie there and stare at the ceiling.

Also, contrary to popular belief, most people don’t have seizures caused by flashing lights – “photosensitive epilepsy” isn’t all that common". I personally don’t have it. My main triggers are caffeine, really strong scents*, and I’d always end up getting them more often around my period. (Sorry for the TMI!) I also have them when I get sick, like if I have a fever. THOSE are the worst ones.

*At least before I was medicated. I once had one triggered by the smell of a dusty old book.

40

Cool! I’ve never known someone who had them triggered by smell before.

The closest thing I have to triggers are stress and not getting enough sleep. Great combo. I’ve had lots of fun with those through college, marriage, two kinds, etc.

I’ve been trying to pay attention to other times I have seizures; I think I might be photosensative, but not to flashing light. I think if my visual field is filled to much by a ligh color or a big bright spot it might trigger them. I had them several times while on the couch in our condo, the wall to the right had nothing on it and was painted light blue. I’ve also had them in two different doctor offices; both time while in an examination room facing the wall behind the open doors, which were both blank.

I could be wrong; there have been stranger things that triggered seizures, see Guinastasia’s post.