When a seizure is not a seizure (pseudoseizures)
Nitin K Sethi, MD
Assistant Professor of Neurology
New York-Presbyterian Hospital
Weill Cornell Medical Center
New York, NY 10065
The month of Feb finds me in New Delhi, India. I have been invited to present a talk on psychogenic non-epileptic seizures (PNES). You may now be wondering what does that mean. Well that is what I plan to discuss in this post of mine. Let us look at the term again:
P–stands for psychogenic meaning the event has a psychological basis to its existence.
NES–stands for non-epileptic seizure meaning the event is not a epileptic seizure.
So let me put it all together in simple language. Let us assume our character for this short story is Michelle. Now Michelle is a 25-year-old young lady who is married to John. All looks great from outside. Michelle has a good job, a fun life in Manhattan and a good circle of friends. But all is not hunky dory. Michelle and John have been having some problems. John is verbally and lately physically abusive to her. Michelle feels trapped in a loveless marriage but sees no way out.
So one day Michelle and John are at a dinner party. Seated at their table are few close friends as well as some strangers. As the main course is served, Michelle suddenly leans back, she utters a cry. Then her eyes are noticed to roll up. John and Michelle’s friends quickly ease her to the ground. She is then noted to have vigorous side to side shaking movements of her head, asynchronous out of phase thrashing movements of her arms and legs. All this time her eyes are open and she is muttering help me, help me.
Michelle is rushed to the hospital where a doctor like me is called to consult on her. What happened to Michelle? Seizure or not a seizure, is the question. To help determine the etiology, her doctor orders a video-EEG study. Michelle is admitted to the hospital and electrodes are pasted on the top of her head to record her brain waves (encephalogram). The encephalogram is time locked to the video camera mounted on the ceiling which records Michelle’s movements. Hence the name VIDEO-EEG.
So imagine Michelle. Sitting in bed, wires attached to her head, surrounded by friends, family and most importantly an extremely concerned John by her bedside. And then it happens again. A dramatic event where she yells a bone chilling cry and then shakes all over. Now everyone wants to know what is plaguing Michelle.
So what did the video-EEG record? Was it a seizure or not? Surprisingly when the EEG data is analysed, at the time when Michelle is having her “seizure” the EEG shows no change in the brain waves. Meaning than Michelle is not having a true seizure, the event is non-epileptic.
Events such as the above are called PNES. They are psychogenic since they have a psychological basis to them. In Michelle’s case they likely reflect her struggles in her marriage and may be a sign for help. Some patients have psychogenic seizures/ pseudoseizures voluntary. Meaning they might malinger a “seizure” for a secondary gain such as to get social security payments, to escape school and so forth.
PNES are common and difficult to diagnose and treat. As you may imagine patients are frequently misdiagnosed. Some are misdiagnosed as true seizures/ epilepsy and started on anti-convulsant drugs which have their own side-effects. When one drug fails to stop the “seizure”, new drugs are tried. So frequently these patients are on multiple anti-convulsants and their “seizures” still continue.
PNES do not stop till the underlying psychological issues are tackled. In Michelle’s case simply telling her that she does not have true seizures is not the end of the road. She needs to be referred to a psychiatrist and a therapist. Only then she may be cured.
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The medical staff need to be better trained to understand that the person having these spells is not “faking” the symptoms. They often can hear but may or may not be able to respond. I have witnessed over many years that the person may or may not be able to move various parts of their body during these episodes. My daughter’s left shoulder dislocated and continues to dislocate due to these pseudoseizures. The orthopedic surgeon said her “pseudoseizures” need to be under control before he would proceed with surgery. The symptoms began fall of 2005 and erupt again each fall and last until summer.
I can relate to the above post my daughter seizure started in 2009 it was very frighteing for me i didn’t know what was going on.know what was going on. she fell to the floor couldn’t talk her head goes back her stomach comes up along with her feet. and she gaspering for breath it last about two too three second. I am at a point I just don’t know what to do.
I have elevated prolactin levels associated with my Pnes seizures is that norm and I have a glitch in the area of my brain where I have had surgery and I have same type of seizure activity as presurgery.
Unfortunately it sounds as if Nitin K Sethi, MD is calling people who exhibit PNES symptoms fakers, hypochondriacs. I hope it is simply because of differing native languages but I had been what I think we’re possibly “dystonia storms” and still exhibit them though I’ve been able to prevent the full blown kind by taking benadryl a few times per day. I had an EEG a few days ago and am awaiting the results. In my attacks my body seizes up not in waves or twitches but like a 15-20 minute long Charlie horse. Biceps pull my forearms to them, hands being pulled toward the underside of my forearms, upper body pulled at abdomen down to lower body (bending at waist as if reaching to tie shoes) and it freezes my diaphragm enough to prevent normal breathing like my diaphragm is contracted, too. It’s terrifying for me! I’m fully conscious during the attack, no loss of bladder/bowel control. I do get tingling or like “baby spiders” crawling up from my chin toward the top of my head just prior to it becoming full blown. My lips end up stiff and unable to move to attempt to speak without sounding incoherent. All I can manage are light sounding grunts because of the diaphragm spasm and the lips not working.
For me I’ve noticed that if the pollen counts are around 7 or higher during the time chenopods are most active I am much more likely to have those attacks. I tend to have a low level of it all day and night. Using benadryl every 5 or 6 hours really helps as well as using my albuterol inhaler tends to stop the progression if it begins escalating. But the attacks leave me extremely tired physically and fatigued mentally, and highly sore in the muscles affected and the others I tried to use to counteract the spasm (trying to use my triceps to pull the biceps out of spasm, e.g. ). It’s awful, and I’m not voluntarily causing these, I would give up many things if just could stop these attacks for good. I’m taking gabapentin 600mg 4x daily for severe peripheral neuropathy that is mostly sensory. So it’s not likely an epileptic seizure disorder.
Absolutely not. PNES is a well established diagnosis and is NOT synonymous with someone faking or been hypochondriacal.
Nitin K Sethi, MD