I was playing with my friend's children on Thursday. I remember the first five minutes, next thing I know, I am strapped to a hospital bed at 3am. Imagine that?
The doctors told me nothing. After all, who am I?
My wife came down the next day, but I was so out of it on military strength drugs, I can't remember. She emailed me later and told me I'd had a two hour epileptic seizure. This is now where I swear, I'll just type f***!
I tried to check myself out of the hospital, but my wife had committed me. Just got out now. The doctor finally spoke to me five minutes before I left. Quality service there.
He added Keppra to my mix. I might stick with that. Then again, I might not.
Seeing my neurologist tomorrow. Find out what's what.
Written by
monkeybus
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I feel shocked and horrible that you had such an experience! I would have been petrified to wake.up strapped in without anyone telling me why I was there. My first guess would be an institution. Please keep us informed as this is highly irregular. I do take Keppra , too, which has tremendously helped only for my night spasms. &#*k!
Oh no, so sorry to hear that. Just shows that the general medical profession don’t have a clue about AMN, hence the not telling you anything. I remember my son having seizures that lasted a while, never timed them, he usually came round in the ambulance asking if the blue lights were on. He did have one that lasted longer, I really thought we had lost him then.
OMG how terrifying for you!!!!!! Need to find out what caused it, my son and sister are epileptic and they went through scans and tests all wired up to monitors to find which part of the brain caused them. Make sure you insist on them finding out the cause as may happen again, take care x
Maybe this could happen to any of us. Saw my neurologist, who, actually, I quite respect. Of all the characters I've had to deal with, he puts in the most effort. Though, I still end up with more questions than answers.
He said just what I'd expect about brain lesions this, withdrawal from Gaba drugs that. Take more, different drugs, the other.
Going for an EEG next week to find out for def if I am physically OK. If I am epileptic, then I am, though I doubt it.
My insurance is excellent, if I'm in the sh1t, I'll get the best treatment, though I'm guessing it'll be Keppra.
I'll report back next week. You lot take care. This disease is always lying in wait.
These things can be a real nightmare to figure out, especially with AMN added into the mix. I had a full blown seizure when I was 17 after a party with friends, drove home the next day after having passed out and slept it off, then went to bed because of the hangover and had the seizure and became aware again in the hospital a couple of weeks later, then to hear all kinds of stories of the time even being told I had been in a coma for a few days. This was all years before the Addison's diagnosis, and then the ALD diagnosis came a few years after that. If only they had been able to put things together then, at least as far as Addison's. Sorry for the in depth description Monkey! Glad to hear you have a Neurologist you are comfortable with, hopefully the two of you can get this figured out!
A while after my Addison's diagnosis I started having what they called "Absence" seizures, where I would be what I termed as looking at the world from somewhere else and wouldn't be involved in the events of the moment. They put me on Carbamezapine, Tegretol, and have been on it for than 25 years and haven't had any more of these seizures. The up side is the Tegretol combined with the Gabapentin seem to handle the spasms and my neuropathy is reasonable, definitely not as severe as my brother experienced!
Hi, so sorry to hear that this happened to you! That would be scary to wake up strapped to a bed and no one familiar around you, no info on what happened and why you are there. I hope you get answers soon on how to avoid this happening again.
I also wanted to let you know that I had a seizure a few years ago. I do not have epilepsy and had never experienced a seizure before. I got out of bed early in the morning to use the bathroom and walked to the other side of the house to use guest bathroom because my husband was taking a shower. I fainted after leaving the bathroom and regained consciousness with a start while laying on the tile floor. I got up off the floor, walked backed to the bedroom and fainted again at the doorway, my husband caught me, picked me up and placed me on the bed. That's when the seizure started: all of my limbs were moving but I was not controlling this action, and I was conscious of it happening. I went to the ER and they did lots of tests but could find no reason as to why this happened. In retrospect after reading posts on this site I wondered whether it was due to Gabapentin? I had stopped taking it 4 months prior and had done it gradually over a few weeks time. I did not notice any immediate withdrawal problems but could it have caused a fainting spell and a seizure 4+ months later??
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Women with cerebral ALD/AMN? Male adult transplant ?
Diagnosed with AMN
First fall
