I thought I was having focal aware seizures, but I finally got a 24-hour VEEG and they said it was negative. So I received the diagnosis of NES (non-epileptic seizures). Has this happened to anyone else? I finally have an appointment with a good neuropsychologist, and will go through that type of testing on 10/12/21 (3-4 hour testing ugh). Thanks for any help all.
mzmac - when they had me diagnosed with PNES before I had my positive EEG I realized if that's true then I can possibly cure my spells as opposed to epilepsy which is usually just treating the symptoms. I actually got excited and started looking for a therapist because if I had PNES I could actually possibly cure it with therapy, and no more seizures, no more life restrictions!
3 weeks after I left the EMU my other neurologist pulled the EMU record that I hadn't yet seen and called and said "You had 13 seizures in the EMU!" all excited because we finally knew for sure. So for a while it was a confusing emotional roller coaster - do I or don't I - is that good or bad?
My neuropsycology evaluation showed memory impairment typical of seizures, but the good news was it's for sure nothing like dementia which I was a little worried about at age 67.
This stuff can get really stressful and I just want to be treated properly so I don't have as many seizures because the medications are a horrible and intolerable. At least you are not alone and a lot of people here go through similar things. Sending good healing energy your way
@A MyEpilepsyTeam Member Great job of clarifying on the seeking of a second opinion!
And, as I can tell you from personal experience, the appointment with a good neuropsychologist is going to be a plus even if it is later proven that at least some of your seizures are indeed Epileptic seizures (not unusual at all for people to have a mixture of both types, just like it is not unusual for them to trigger all forms of your seizures when you are in an Epilepsy Center for a long-term period.
However, as I pointed out before, make sure that you have the information that the professional have on the seizures that they observed (which they are labeling as non-Epileptic because the EEG did not have a reading when you had them) and anything from others who have observed your seizures at any other time, because (I cannot speak from experience here) I believe there is a very short period even during a non-absence seizure that is missed (lost time) to those experiencing the seizures. However, I am not positive that this is a constant in everyone who doesn't have absence seizures.
And most importantly, even if all of the seizures are found to be non-epileptic seizures, there are some that are very important to find the source of (because brain tumors can trigger non-epileptic seizures and likewise the heart can trigger seizures as a message of an issue).
The fact is, regardless of the form of seizure, that it is always important to find out as much about the seizures and the potential reason for them.
Keep us updated! I am praying for you to get answers and reach a seizure free state (just as I am for the rest of my team).
Once again, what was the form of the seizures that they supposedly witnessed while you were hooked up to the EEG?
What is the form of seizures which people have witnessed and you have experienced (since your seizures are not absence seizures) when not hooked up to an EEG?
Not all seizures that are non-epileptic seizures are dissociative seizures. There are seizures that are triggered by a problem with the heart, for example. These are the heart indicating that there is a problem that needs treating. An EEG will obviously not detect anything from one of these seizures.
And it is very possible for someone who has Epilepsy to have seizures that are not epileptic seizures in addition to epileptic seizures. And you do not have to look very far in research to find examples cited of this.
I have had a similar experience to yours. I have been diagnosed with left temporal lobe epilepsy. They said that I had mesial temporal sclerosis. When I went in for a continuous EEG they also said I had nonepileptic (psychogenic) seizures in addition to left temporal lobe epilepsy. It is just so confusing! Everytime I go back to the hospital for testing I get a different Dr. and a different opinion. It is like starting all over again! I don't know who to believe! I have been dealing with this since I was in my 20's l am now 67. I would think anyone would be under stress! I just want real solid answers! I had a Dr. tell me you can have a clinical seizure that is a too deep in the brain to capture and another Dr. said that isn't true! I can really identify with what I are going through.
Yes ive had 2 done both around 6 days each in hospital ..first one showed nothing..second one hardly anything ...yes they told me that im having nes ...yet as soon as i got home from eeg had big episode.. definitely having epileptic seizures..got one neuro saying im having seizures and one saying im having anxiety..very frustrating
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