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I've had generalized Epilepsy since 14, I'm 47 now. I've had many many seizures. Even crashing my brand new car on the interstate, on cruise at 70. My longest period seizure free was 5 years, next would be 14 months. I know full well these are real. But it makes me angry she seems to think that. Now they are eliminating one of my meds. I'm worried. Since my crash 6 years ago I've had a fear of seizures in public. I live alone, with one(or more who knows) seizure, i laid in my house for 3… read more
@A MyEpilepsyTeam Member - I use a Lifefone device. I love it. Have been using it about 1 year. It's a necklace. If I push the button they will call family, police, EMT, or just talk to me, depending on what my needs are. If they get no response from me pushing the button, they will start calling those on my call list. I wrote a detailed post about it somewhere on this site. Maybe do a search for it?
But, yes. I did have a neurologist early on tell me that this was not neurological. (because he did a 1 hour EEG and did not see anything) (while I was on seizure meds, BTW)
I have a friend in the psych field (for decades) and yes, people do "fake" seizures. So, doctors always have that in their pocket if they aren't seeing evidence.
5 day inpatient EEG showed no seizures, BUT def patterns/signs that I had been having seizures. They saw enough and heard enough (from my testimonies) to diagnose me with epilepsy.
I have had 3 full blown seizures in the last 1.5 years and a whole lot of other not so severe abnormal neurological activity.
You are your best advocate. Keep digging.
Doctors are not God.
Find one who will listen to you and one that you ultimately can trust.
if you have an device there should be technicians that should be nearby that should assist to ensure the device be turned off. I have two devices that manage my seizure activity so when it comes time for an MRI scan both devices are turned off briefly for my time in the MRI then turned back on after I exit the MRI.
The doc's are trying to figure how to give me an mri. I have an implant they are worried about. I'm also scheduled for another eeg, outpatient.
@A MyEpilepsyTeam Member The point of the MRI isn't to show the seizure but to show brain scarring. If they detect any abnormal scaring on the MRI then they can normally go back check the EEG results again and say its most likely epilepsy. In most cases they would normally do both over a period of time. The more information they get the better the treatment will go.
@A MyEpilepsyTeam Member but the two are completely different tests. I don’t think the MRI would show a seizure, plus it’s quick test. But I’ll ask my neurologist.
@A MyEpilepsyTeam Member request a 24 hour or, better, 7 day EEG. If they say no, go to a better health center.
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