suddenly I was diagnosed with psychogenic seizures

[Marie Coffield]

I am a 60 year old female who has had some type of seizure since I was about 12 yrs old and then a grand mal at 14 and diagnosed as havinf focal-motor seizures, Jacksonian spread. But video eeg comes back normal and so does my mri so they think I have psychogenic seizures. I think they are wrong and there are so many symptoms of epilepsy that I believe that I do have epilepsy - a buzzing aura, electrical feeling in leg, post-ictal response of haziness and confusion, minute lapses in consciousness that can cause me to fall, and more.
All the docs see is that I have negative tests and that I have been diagnosed with anxiety and am a sexual abuse survivor. How do I get an unpredjudiced doctor to listen to my anecdotal information?

 

[masterjen]

Hello and welcome to CWE

First, the absence of any abnormalities during EEG, MRI and CT scans does not rule out epilepsy.

Second, are you seeing an epileptologist? If you are yet doubt the psychogenic diagnosis, never be afraid to get a second (or even third) opinion.

Third, ask to have a psychological evaluation by a psychiatrist who has experience evaluating those with a history of seizures. A knowledgeable doctor will be able to determine if your seizure manifestation and mental "status" are or are not consistent with a psychological/psychogenic condition.

 

[Nakamova]

Hey Marie -- welcome to CWE!

Agree with mj's advice. Some docs will default to a diagnosis of psychogenic seizures in the absence of positive test results, but an epilepsy diagnosis can be made on the basis of clinical evidence alone -- i.e. the actual symptoms that you are experiencing.

It may help to keep a detailed journal of your symptoms: When they occur, how long they last, what happens. This should include any post-seizure symptoms as well, and things that you're not 100% sure are seizure events. The journal can be helpful to an epileptologist and a neuropsychiatrist in making a diagnosis. If the docs are unable to come to a definitive diagnosis and the symptoms persist, you might also ask about trying a small dose of anti-seizure medication to see if they bring the symptoms under control.

 

[cw2018]

Hi Marie,

I am also new here, and left a rather long introductory post. I guess that I am frustrated with my experience at the EMU. I am here right now. I saw an epileptologist and she identified the problem right away with complete certainty based on history and physical symptoms; however, my EEGs have been normal. The hospital doctor is approaching it from the direction of non-epileptic spells, even though my past AEDs worked to control the spells completely. The two do not agree completely. I have autism, so it is extremely hard for me to communicate with the hospital neurologist and to understand what he means. I feel like I am just in a foreign country. I am in the EMU to help locate the focus of the seizures and to find a better AED. I was on Depakote and then lorazepam. I think the reason he doesn't see seizures is that lorazepam stops them for several days, I took some before coming here and I just got here. Confused, but looking to learn. How can they go from seizures to non-epileptic spells? I go in with one very definite statement and now he is not sure. Says that he is unwilling to do any other testing after this.

Thanks,

CW

 

[masterjen]

You say you have trouble communicating with the physicians. I'm assuming you must be meaning orally, since what you write is very clear and understandable. Why not write down your comments and questions for the doctor to read when he or she comes to see you? One of these comments could be a request that your various doctors collaborate and compare notes so that together they can come up with a diagnosis and treatment plan.

It can also be helpful to have a family member or friend with you when one of your doctors is planning to come by, both for support and to have someone assist with the communication process. Plus, a second pair of ears can come in handy when it comes to trying to take in and remember everything a doctor says

 

[cw2018]

Thank-you for your comment masterjen. I have had to learn better ways of communicating over the years, as I work in academia. I understand how some people would be skeptical of what I am trying to say. I am phrasing it incorrectly. My oral and written communication skills are fine, understanding what he is saying is my problem, in a sense. I have had extensive neuropsychological tests at a university autism center in the States, when I was a young adult and I was found to have severe deficits in reading body language. I kid you not, someone could be smiling at me and some times I feel as if they are angry with me. I have partially learned, rather unsuccessfully, to read facial expressions, but I still have a lot of trouble if I am not really careful. My first instinct is always to read people wrong. I have a kind of facial blindness as well. All documented in extensive testing. I have a really difficult time with socialization. My family and friends sit in with me and try to explain that what the neurologist said and communicated was the exact opposite of what I think, but I feel helpless as I can't seem to wrap my head around it. He says a lot of possibilities for my symptoms, and one moment describes them as serious seizures and the next as spells. I truly don't understand why he can't stick to using one term, unambiguously, directly. He smiles at me, I know that much, but is it a negative smile, a sneer, or a happy smile? My family says he likes me and all of his patients note his abnormal level of compassion. I can't get it. The head neurologist, who is my outpatient doctor is very direct with me and understands my autism. She will be in to see me in a few days. Do you think I should try to explain this to him? I don't want to offend him. All of the nurses and doctors are like blank books, and I am not used to them so this is uncharted territory for me here. Also, he thinks I am having spells with no EEG recording, i.e. odd hand movements, but those are part of my illness and voluntary. I don't know how to make them understand the difference.