Non-Epileptic Seizures or psychogenic non epileptic seizures (PNES)

Hello @lindaibm. I wanted to connect you with other members who have shared about PNES, so you will notice I have moved your post into an existing discussion which you can find here:
- Non-Epileptic Seizures or psychogenic non-epileptic seizures (PNES): https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/

Member @jakedduck1 has shared some information and may be able to come in and share more with you on the topic.

When were you diagnosed?

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Always seek a second opinion when diagnosed with psycholenic seizures. I was diagnosed with partial comples seizures 25 years old (I believe the terminology has changed) with some grand mal seizures and several strokes Fortunately, I recovered from the strokes within a day or two. My regular neurologist diagnosed me properly, treated me accordingly and I would go years between series of seizures. I had a grand mal seizure that put me in the hospital 2 years ago where I was treated by a different neurologist. I had another grand mal seizure in the hospital, I overheard the hospital neurologist tell the nurse he thought it was a psychogenic seizure until he saw my blood pressure more then double during the seizure. There was no justification for his wrong diagnosis. I doubt he would have done futher testing the last 25 years and I would have had considerably more seizures and many more strokes had the hospital neurologist been treating me the last 25 years.

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My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed on his brain. 2014 they said it was real seizures but after many many test doctors many things they say they are not real seizures. i dont know what to tell ER when i have to take him. he cant work because he is off balance and gets confused easily. So i know as a man father and always worked 2 to 3 jobs at a time. now cant work i know it bothers him. he sees a counselor and a psychologist but he still has them. the doctor at ER 2 Nights agosaid for me not to bring him to er unless he is hurt to just let him have these attacks seizures whatever at the house. sometimes they will go on for 30 min stop and then start back. i am afraid it will hard him doing it so long. the doctors at hospital say they cant do anything i just wish someone could help his reg doctor would like us to go to mayo see if they can help. We are afraid if we go to mayo they are gonna tell us the same and send us home with same as all do here. we live about 5 hours away so i dont know what to do its an awful thing we feel helpless

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I also had complex partial seizures starting at age 22. I am 62 now. After a few years, they were mostly controlled by Tegretol. I had some EEGs in the 1980’s and maybe one in 1990’s - I don’t remember. But they were all normal. I chose to come off Tegretol during both my pregnancies (1992 and 95) and had seizures. I remember telling my husband “ don’t ever let me do this again”. It was frightening when I had the strong auras and actual seizures.
My last seizure was at least 19 years ago, and it would have been during the night - I could tell the next morning when this happened, because I could remember it, and woke groggy with a headache. I was in my 40’s.
I stopped Tegretol in 2014, since my last seizure was remote. Within 6 months I developed a new problem, which turned out to be small fiber neuropathy.
Back on Tegretol a year ago, for neuropathy pain. Now I am having a focal type seizure almost daily, and it is always 2 hours after I get up. The seizure is brief, but the post-ictal phase lasts for a few hours - dizziness, double vision. When I give in and lie down, I have random twitching until I finally relax and kind of doze. I have to lie down for about an hour, or I am still a little dizzy, and very sleepy.
We recently tried Keppra, then Topamax, but I couldn’t tolerate the side effects, and kept having seizures. This was a very dark time for me, as my life narrowed down to spending hours with seizure symptoms, and yukky sided effects.
I consented to 50 hours of ambulatory video EEG in my home. This was horrible for me, in part because of my SFN pain and symptoms. But I did have a focal type seizure on day two, and dutifully sat in front of the camera.
No epileptic seizure activity was recorded on my EEG, so I have “kind of” been diagnosed with PNES. I guess not completely, since I don’t have grand mal activity, and don’t have a history of suppressed trauma, but at this point the neurologist doesn’t think I have epileptic seizures.
Just posting this long story in case it seems familiar to another seizure patient.

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I also had complex partial seizures starting at age 22. I am 62 now. After a few years, they were mostly controlled by Tegretol. I had some EEGs in the 1980’s and maybe one in 1990’s - I don’t remember. But they were all normal. I chose to come off Tegretol during both my pregnancies (1992 and 95) and had seizures. I remember telling my husband “ don’t ever let me do this again”. It was frightening when I had the strong auras and actual seizures.
My last seizure was at least 19 years ago, and it would have been during the night - I could tell the next morning when this happened, because I could remember it, and woke groggy with a headache. I was in my 40’s.
I stopped Tegretol in 2014, since my last seizure was remote. Within 6 months I developed a new problem, which turned out to be small fiber neuropathy.
Back on Tegretol a year ago, for neuropathy pain. Now I am having a focal type seizure almost daily, and it is always 2 hours after I get up. The seizure is brief, but the post-ictal phase lasts for a few hours - dizziness, double vision. When I give in and lie down, I have random twitching until I finally relax and kind of doze. I have to lie down for about an hour, or I am still a little dizzy, and very sleepy.
We recently tried Keppra, then Topamax, but I couldn’t tolerate the side effects, and kept having seizures. This was a very dark time for me, as my life narrowed down to spending hours with seizure symptoms, and yukky sided effects.
I consented to 50 hours of ambulatory video EEG in my home. This was horrible for me, in part because of my SFN pain and symptoms. But I did have a focal type seizure on day two, and dutifully sat in front of the camera.
No epileptic seizure activity was recorded on my EEG, so I have “kind of” been diagnosed with PNES. I guess not completely, since I don’t have grand mal activity, and don’t have a history of suppressed trauma, but at this point the neurologist doesn’t think I have epileptic seizures.
Just posting this long story in case it seems familiar to another seizure patient.

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Hello!
I was told NES could be caused by physical trauma and pain. I get them from migraines. Good luck to you all.

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Always seek a second opinion when diagnosed with psycholenic seizures. I was diagnosed with partial comples seizures 25 years old (I believe the terminology has changed) with some grand mal seizures and several strokes Fortunately, I recovered from the strokes within a day or two. My regular neurologist diagnosed me properly, treated me accordingly and I would go years between series of seizures. I had a grand mal seizure that put me in the hospital 2 years ago where I was treated by a different neurologist. I had another grand mal seizure in the hospital, I overheard the hospital neurologist tell the nurse he thought it was a psychogenic seizure until he saw my blood pressure more then double during the seizure. There was no justification for his wrong diagnosis. I doubt he would have done futher testing the last 25 years and I would have had considerably more seizures and many more strokes had the hospital neurologist been treating me the last 25 years.

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