what's the worst self-sustained injury youve suffered from a grandmal seizure?

[motorbill66]

Since 1988 (first seizure) I have burnt my shoulder badly on a hot radiator, Chipped or cracked most of my teeth, bitten my tongue so many times it's permanently distorted, Broken my right leg, Wound up in bed for weeks from a back injury, clonked my fool head too many times to count (That just may explain a lot!) and cracked ribs. I guess I've had around 200 + Gran Mal attacks, so it's hard to remember them all, especially now that I'm using 300 gm of Lamictal. It's fairly effective for me with another 300 gm of Lyrica and a Xanax at bed time so I can get to sleep in spite of all the other crap running around in my head. The price is the short term memory of a goldfish.

Concerning bathing alone and such; I know that caring and concerned folks like you all warn against many solo activities, but I subscribe to a slightly different philosophy.

As long as I endanger no one else I intend to live my life just as normally and enthusiastically as humanly possible. I'm 65 now, and I've had a GREAT life with my wife of forty five years. She understands and is the strongest woman you'd ever have the pleasure of meeting.

Now, I'm not advocating any specific behavior for anyone else, but for me, what happens happens.

 

[motorbill66]

Weird! In my previous post I specifically indicated 300 GRAMS of Lamictal and Lyrica, but when I hit the post button they came out as 'grand mal'. I'm not THAT nuts. I went back and checked. I think maybe the site has some neuro problems of it's own!

 

[kirsten]

I subscribe to your attitude too, motorbill. I will go far enough to get a computer with a good refresh rate and make sure I stay away from blinking lights but I bath alone and cook and swim. I once read that it helps to tie a piece of string to your toe and the bath plug but I couldn't be bothered.

Does anyone habitually stand up before they have tonic clonics? It seems to be a habit of mine. I go unconscious before I stand up and then I fall down and have the seizure. That is one reason why I end up getting injured so much.

 

[Belinda5000]

To many things have happened to me for there to be just one thing.
Broke my nose,my collar bones,fell out the shower head first busted my head open on medal part of the chair and many more.

 

[motorbill66]

Kirsten,My wife reports that I have jumped out of bed, run down the hall, and seemed to be trying to climb the walls a number of times, only to collapse into yet another Grand Mal. When I was in for my four day video EEG I apparently fell out of the bed trying to get up while unconscious and seizing. I've crawled up stairs, yelled out, and tugged mercilessly at my shirt and pants for no reason.

It must be downright frightening for loved ones to see you 'doing' things of which you have no awareness. You are not alone here, and thankfully, neither am I. We all have each other.

 

[qtowngirl]

Concerning bathing alone and such; I know that caring and concerned folks like you all warn against many solo activities, but I subscribe to a slightly different philosophy.
As long as I endanger no one else I intend to live my life just as normally and enthusiastically as humanly possible.

:agree: well put bill, i feel exactly the same. not have a hot bubble bath when i'm home alone, got the chills and don't feel good? uhhh yeah, start the water.

re: your last post, the running around and pulling at your clothes but not remembering is part and parcel of a complex partial, very common before g.m.'s. had a few myself, mostly in the seizure unit. they are hell in a way but also a thumbs up some of us have in that it's a warning. i can't imagine waking up on the floor etc. with no idea why/what/when. HUGS to you all that suffer like that.

 

[motorbill66]

I only wish I was aware of all that crazy stuff going on. It would be a great warning and a Hell of an aura for both me and my wife to recognize, but it seems I must have "Grand Partial Mals" before what I've termed 'Monster Mals'. Ask Linda, the poor lady's had to watch so many of them happen.

People often ask what a seizure feels like. I always tell them I wouldn't know, since "I'm not there". God, I hope nobody ever casually shoots video of me during one. I could stand to watch other folks have them, but my own? NO WAY!

 

[kirsten]

Apparently I do the yelling as well but thankfully nobody's reported any other behaviour. For me, the scary part is waking up somewhere where I wasn't before not knowing what happened. Then I apparently ask what happened over and over and over again, and I know that every time it terrifies me because I always remember the last time I ask. The first tonic clonic I had I woke up outside the hospital emergency room being pulled onto a wheelchair. I was with an Israeli friend who wasn't brilliant with English and when I asked him what happened he told me I fell. When I tried to pull myself up and walk my muscles didn't work and I thought I'd fallen down the stairs and paralysed myself. Scariest few minutes of my life.

 

[motorbill66]

Wow. Ditto almost exactly

 

[qtowngirl]

I only wish I was aware of all that crazy stuff going on. It would be a great warning and a Hell of an aura for both me and my wife to recognize, but it seems I must have "Grand Partial Mals" before what I've termed 'Monster Mals'.

as an aura is a simple partial, which may or may not come before a complex, is there a chance you've maybe experienced them? sometimes, esp. if one doesn't realize/didn't know they've had simples before, it is not recognized as a seizure. it can last only seconds before turning complex, and depending on which type of simples it is depends on if someone else notices. physically kicking your leg, yeah your wife would notice- fear, deja vu, heart racing, seeing distortions, she likely wouldn't unless staring at you that exact second and your face changes. either that or you call her into the room. majority of simples however don't make us real talkative, tho we know it's happening and do remember after. this is mostly a guarantee for those of us that know we suffer from them. they're actually pretty damn sneaky, one of the worst seizures mentally in many of our opinion.

if they progress into a c.p. and/or grand mal one can be so distraught in the hours following that the seconds prior fade away. at the very least if complex is the only type before your g.m.'s, your wife or whoever with you knows what's about to happen, try to protect you in some way (from walking out in traffic, falling down the stairs etc.). in a sense it is a warning, just not for you

HUGS.

 

[nelly]

I end up with a few bruises on my arms and legs sore and weak muscles confused, Blood on my clothes from bitting my tongue. I can sorta talk but, can't understand me. just for fun.... you may have tryed this before, but it always makes me laugh.
(hold your tongue with your thumb and index finger now say a few words)

 

[motorbill66]

qtowngirl. Yes indeed, I would like for Linda to be able to help, but I'm fairly big and strong, and I move quickly (high school track star back in pre history!) She can't even catch me let alone help me out or restrain me. She has learned to just watch and try to keep me from being injured. I hate that for her. This disease is a test for true love... She's been passing with flying colors for many many years. She's at work right now, and I miss her, even after forty five years of marriage. Linda means beautiful in Spanish. She proves it. I'm far more blessed than I deserve.

 

[qtowngirl]

This disease is a test for true love... She's been passing with flying colors for many many years. She's at work right now, and I miss her, even after forty five years of marriage. Linda means beautiful in Spanish. She proves it. I'm far more blessed than I deserve.

*tears* bill that is very moving. i can't imagine. i've had E almost 20 years but only been in current relationship 6.5 years, during which my whole life's path changed. from learning in 2008 i was misdiagnosed at 15 with PTSD, to a lesion being found in 2011 when i was 32, to brain surgery 5 months ago, it's been with him.
unfortunately tho i did not have him through post-op and recovery, mostly did it alone though always 50 feet away from each other.
HUGS to you and way to go, so nice to hear the plusses others have in relationships and dealing with all the shite that comes with E.

 

[PixiDust]

Feel your pain, or whatever. I had a crainotomy and there was a negative reaction, leaving me with the mind of a 2 year old......for only a week obviously. I was trying to find the right word, and 30 minutes later I had it. When they asked me to name a pine tree I said "conifer' which technically was the right answer but that says something about your unconscious memories/thought process! So I understand a little of your frustration,thought this might be a laugh

 

[C0urt]

I end up with a few bruises on my arms and legs sore and weak muscles confused, Blood on my clothes from bitting my tongue. I can sorta talk but, can't understand me. just for fun.... you may have tryed this before, but it always makes me laugh.
(hold your tongue with your thumb and index finger now say a few words)

aphasia is never fun, even more so when you have a speech or something to do.

 

[motorbill66]

Qtowngirl,

Thank you for that information. We'll keep it in mind. The only aural signals we get, rarely, is absence. When Linda tries to engage me in conversation or ask a question and I'm just staring into the middle distance and not responding, she knows one is coming. Unfortunately, it's too late to do anything in most cases. Not only that, but I go into instant denial, something for which I'm not known.

A really accomplished neurologist told me that that and the flashes of foreboding and fright I feel sometimes are actually little seizures themselves. They just don't take over until all Hell breaks loose.

Here's some good news for some folks. As the years have progressed, my seizures are less and less physically punishing. Only once in a while do they get 'overactive'. The best news is that they have now stopped for three months. I don't know if the latest drug regimen is doing this, or the disease just decided to give me some time off to recover for the next bout, but I'm happy as a clam to be able to speak without a hamburger for a tongue.

For what it may be worth, here's what I'm taking now:


AM,
100 grams of lamictal
100 hundred grams of Lyrica.

Afternoon,
100 grams of Lyrica

Before bed,
200 grams of Lamictal
100 grams ofLyrica
1/2 gram of Xanax

Strangely, the Lamictal I take is the extended release type, yet I take it both morning and night in different dosages. I learned from one neurologist that different bodies process different drugs quite differently, and that it's probably just the way I process the stuff.

Above, I stated that I have been seizure free for a few months now, after twenty five years of grand mals. I just wanted to indicate that the seizures stopped when we added the Xanax.

 

[kirsten]

Motorbill, you're right--it's amazing what fiddling around with meds can do for our epilepsy. This is why I see a psychiatrist as well as a neurologist. TLE is so complex mood-wise, as you hinted at with your seizures that feel like a sense of foreboding (which I've learned are seizures myself as well.) The two disciplines are so interwoven with each other--my psychiatrist has a good idea of what is epilepsy related and what is not and what psychological issues may be making my seizures worse. She can support the mood problems where anticonvulsants fall short. Best of all, she has worked together with my neuro on cases for years, so I can feel confident that they are getting along merrily.