What people say about nonepileptic seizures
- People tell you that you are acting crazy.
- They tell you to snap out of it
- They accuse you of attention-getting
- They tell you that you can stop the nonsense of shaking with a positive attitude.
- They tell you it’s all in your head and you could stop them if you really wanted to.
What is it like to have a nonepileptic seizure disorder?
1. You may feel as though you are acting crazy or irresponsible.
2. You feel guilty, humiliated, and embarrassed all at the same time. (apologies often follow seizures to those around you)
3. You feel anxious, then hold on for the ride (shaking or intense staring)
4. You are cognitive throughout the seizure and recover quickly, although feelings of fatigue accompany the thrashing about.
5. You just want to get to the bottom of the issue and get it stopped.
6. You may feel as if there is no hope to stop the anxiety that is causing the issue.
7. you may think you don’t need talk therapy or a psychologist to help you cope.
I had pseudoseizures from 1995-2001. My father-in-law passed away from Cancer and I couldn’t accept the suffering he went through, and I had Post-traumatic-stress-disorder from childhood memories haunting me. When my husband moved me away from the graveyard access and the cause of the childhood issues, I began to get better. I had an awesome psychiatrist who treated my symptoms until his death in March 2017.
I visited a new psychiatrist, and the first thing he did was remove the Lexapro anxiety medication from my list. He did not replace it with another medication but had me go cold turkey from it. The pseudoseizures resumed in earnest. Currently, I just finished the visual 72hr EEG. I know they didn’t find anything conclusive since I was in bed & chair rest for the 3 days while I was being videoed. I betcha they comeback with pseudoseizures as a diagnosis.
Even happy occasions can trigger the pseudoseizure. I was at my 40th wedding anniversary party, passing our gifts over to my husband and BOOM! a seizure hits fast and hard, I am embarrassed. My mom is holding my head still and praying over me. My husband and friend are holding me in the chair. Soon it is over and we pick up where we left off. I feel embarrassed by the negative attention I just received. Negative in that it was not wanted or sought out after but was administered by frightened people.
Heat, Humidity, or Activities can overtax your mind and cause stress that can lead to pseudoseizures. Just trying to get the grocery shopping done and put away can trigger an anxiety attack. Or shopping in an overheated store, or being in physical pain can be a trigger. It doesn’t have to be an unresolved past history to be a trigger. I think mine is because I do feel anxious about everyday things, like unload and reload the dishwasher or washing machine, then add a list of other chores that need to be done and BANG! another seizure hits. I believe that if the doctor would put me back on an anxiety medication the symptoms would go away again.
Three weeks later: I am on anti-anxiety and anti-seizure medication once again and I haven’t had any seizure activity. At the most, I’m stemming (compulsive repetitive action) with my hands shaking or rubbing my cheek. I know when that begins I need to calm down, usually, I’m over-focusing on some project or activity and my brain is telling me to take a rest.
The downside it cost me 20% of the $15,000.00 bill to determine I needed to go back on the same medication Dr. Reddy took me off of. What a waste of money, time, and effort on everyone’s part.