ello, newbie here

[lovenatti]

hi, my name is natti. I was in a mva in 2007, had a brain injury, which lead me to injury induced epilepsy.

it was slow @ first, gradually becoming full blown clonic-tonic seizures, got on some meds (Dilantin, keppra, lyrica) became controlled for about a year, and thought I could go off my meds. BIG mistake. on may 27th of this year, I had a seizure right in front of my kids, and quit breathing. my BF preformed CPR, and I got aspirated pneumonia... /sigh I've been uncontrolled ever since.

I'm looking for support because honestly I'm losing hope of ever living a normal life again. my meds have been doubled, and I have seizures almost daily. shorter in length, but it just never ends...

sorry for the novel, thanks for reading it! I look forward to getting to know y'all

natti

 

[lovemyladybug]

hey natti , welcome to CWE ! your defnitely in the right place ! im sure youll get more helpful responses but i wanted to say hello and your not alone

 

[valeriedl]

Glad to meet you! Don't worry, that wasn't a novel. Glad you let us all what is going on in your life.

One thing to always live by is NEVER go off your meds unless the dr tels you to. If you think you are doing good and don't need to be on so much medicine or even being on medicine at all discuess it with your dr first. Most medicines you have to be weaned off of slowy and not just stop taking.

Possibly once the meds get back into your system it could control the seizures much better.

Ask lots of questions on here and you'll get some good advice. You'll even find that you will even beable to give advice to others too.

 

[Endless]

natti,

Welcome to the forum! This is a great place - we're all in it together and there's lots of information and support.

I'm so sorry to hear about your head injuries, and your TCs. It's just darn scary hearing about the TC where you needed CPR. I'm so glad you are okay.

 

[lovenatti]

meee too. scary, had I been alone. I was always under the impression you couldn't die from a seizure. I stopped breathing hours after the large c/t I had. I don't remember very much of the day it happened, but my boyfriend said I deteriated, my right eye was wonky, I had slurred speech... he thought he'd feed my kids and then take me to the hospital. he was encouraging me to just lay down.. looked @ me on the couch a minute later and I was completely blue, purple tongue and all. he ran over, moved me onto my back, thinking I was dead, and instinctively I took in air. i had a very weak pulse, but alive... minutes from cardiac arrest.

scary stuff.

I was worried that because it's happened to me before, would I be more likely to do it again?? my neurologist said, it's possible, but the roof can fall in too. either way, every seizure is scary now and stressful to my entire family.

hahaha, writing a novel again! anyhoo, I'm glad to have found others like me!!

 

[Endless]

Something the doctors rarely discuss with us is Sudden Unexplained Death in EPilepsy (S.UDEP). It happens more often than people think. It happens in .6% of the people with refractory (uncontrolled) seizures. In other words, line up about 200 people with uncontrolled epilepsy, and one of them will pass away from SUDEP.

In severe epilepsy the numbers are even higher. One in one hundred, or 1% of those with severe epilepsy is quoted in some research studies.

The reported incidence of SUDEP spans a wide range, from 0.35 deaths per 1000 person-years in a population based cohort <Endless's Note: that cohort means people without epilepsy> 1 to 6 deaths per 1000 person-years in a cohort with refractory epilepsy. In a population based study, the risk of sudden unexplained death was 24 times higher than that seen in the general population.... The mechanisms of death in SUDEP remain unknown, with both cardiac and pulmonary derangements having been hypothesized. There is evidence supporting cardiac arrhythmias as the terminal event. Ictal EKG studies and autopsy studies find evidence for transient ictal conduction abnormalities and myocardial injury, respectively. There are several reports documenting terminal arrhythmia or bradycardia in patients who died on monitoring units. Central apnea has also been hypothesized to produce SUDEP. There is one case report of post-ictal apnea leading to cardiac arrest, and status epilepticus in sheep was associated with death from hypoventilation. Since both cardiac and pulmonary mechanisms can account for SUDEP, it is likely that etiology is patient and seizure dependent.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320690/
http://www.epilepsy.com/epilepsy/nyt_SUDEP?gclid=CJj5o527mKoCFaYZQgodbWujwg

Research has estimated that approximately 50,000 people die each year from status epilepticus (prolonged seizures), SUDEP, and other seizure-related causes. SUDEP accounts for 8-17% of deaths in people with epilepsy. Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year.

http://en.wikipedia.org/wiki/Sudden_unexpected_death_in_epilepsy

No sugar coating it. It is there and a possibility, hopefully not a big one for most.