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Non-Epileptic Seizures or psychogenic non epileptic seizures (PNES)
Epilepsy & Seizures | Last Active: Aug 7 5:35am | Replies (34)Comment receiving replies
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.
Replies to "Always seek a second opinion when diagnosed with psycholenic seizures. I was diagnosed with partial comples..."
So what was the correct diagnosis when the hospital neurologist made that comment? Do you have a condition that caused your blood pressure to double? I’m asking because I have a very unusual blood pressure condition that instantly soars my blood pressure to over 200 in seconds.
Hello Tonyde,
I found the comment about your blood pressure doubling to be interesting. For many years, I have majorly struggled with very volatile blood pressure that would commonly soar in "seconds" to well over 240/160. It went over 300 a couple of times, in which, the first time this happened, it caused me to have a grand mal seizure. Fortunately, this occurred while I was already in the ER. The seizure stopped after I turned very blue and lost consciousness due to brain swelling. I woke up after the 3rd day. (This all began in my late 40's, always of average weight, never once a smoker/drug user, very clean and conservative life, well-educated.) Almost 20 years later, I still struggle with very volatile, extreme blood pressure.... no answers. I agree with you, that there is NO way this is psychogenic! It has been a very hard road...
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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.