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Is it PNES?
Wed, 09/03/2014 - 21:45Hi,
I’m new here and I had a question.
I got my first seizure in November of last year. At the time, I didn't know what it was, and since it happened only once I pretty much forgot about it. Then two and a half weeks ago I had another seizure and hit my head while falling. At the time, I really didn't know what happened, but since I was not feeling very well, I ended up going to the hospital. After a few hours in the ER I had another seizure. I really don't remember much that happened after the seizure, except they gave me some IV meds.
Since I had a seizure I was admitted to the hospital. I really do not remember those three days, I think they gave me an EEG, but I am not sure. A few days ago I was talking to my mom and she told me that they told her I got a concussion, but, I have no recollection of them telling me. I have no idea if they told me and I didn't remember, or they never told me. Before I left the hospital they started me on dilantin and keppra.
Then the next day, I started to feel weird. For some reason I thought it would be a good idea to go to the hospital. I decided to walk, since it was about a 5 minute walk. However, I didn't quite make it, I remember leaning against a wall, falling and then when I came too I was in the ER. I had another seizure. Since I just got out of the hospital, they admitted me again.
In the hospital, I got several seizures, and they decided to give me an EEG, which came back negative. So after a few days they transferred me to a hospital where I got a video EEG. From that test they determined it was PNES and released me.
Since then I have been getting seizures about once a day, and it has really impaired my life.
Since they decided the seizures were psychogenic I have been doing a lot of research, and there are some elements of my seizures that do not seem psychogenic.
When I get a seizure, first I start to feel strange. Like the world is closing in, and it sounds like I am in a tunnel and words start to become indecipherable. I often get dizzy, and I also often start to sweat profusely. My muscles will start to twitch a bit and will often tighten painfully. Then the seizure comes, if I am not already laying down, I will fall to the floor. I can sort of remember what went on, but not fully.
After the seizure I get very confused, dizzy and nauseous. I am really weak, and often my arms and legs won’t work. Lights, noise and smells will often bee overwhelming. This post seizure state will last from minutes to a few hours. I really only know this because I have had seizures around people and afterwards I asked how long was I out. I have no real recollection of time passing, only bits and pieces of often distorted memory.
There are some symptoms that I have that are indicative of PNES, like I remember when a nurse painfully pressed on my finger, I do not remember if I recoiled from it though. But, from what I read that it is rare to have post seizure confusion, weakness etc.
I also have a very long psychiatric history, I have been hospitalized many times for it. I am currently diagnosed with major depression, BPD, and panic disorder.
I have been dealing with mental health issues for a very long time, and I know what it feels like to have a panic attack, and I know what it feels like to have a dissociative episode. The seizures are new and they feel very different to me than any of my mental health issues.
I would be able to accept the PNES diagnosis if I didn’t have some symptoms that were rare for PNES. Plus, for some reason, to me, this all feels so different from any other mental health illness.
I feel that the doctors are seeing my history and the negative EEG results and are not actually listening to me. Maybe it is PNES, maybe it is something else, but, I would like a doctor to actually answer my questions instead of deflect them.
Sorry for the long essay, but, there is a lot of backstory, most of which I did not include.
What do any of you think?
Hello. Just read your post. I
Submitted by Anonymous on Thu, 2014-10-23 - 19:12
Hello. Just read your post. I have a seizure disorder. I have grand mal seizures only while I am sleeping. I have 1 maybe 2 a month. The seizures started 6 yrs. ago in 2009. I used to take Dilantin 100 mg 2xaday, then it was switched to Phenytoin 100 mg 2xaday, then it was switched to Tegretol XR 100 1 tab every 12 hours. All three seizure meds stopped the grand mal seizures. But I had to stop taking the meds because all three made me nauseated every day and I would throw up every day. I also lost my job in June of 2011 and I could not afford the pills anymore. Also after taking the seizure meds for 1 yr. and a half, I started to have memory loss. I could not remember my cell phone number or my aunts last name. I could not live like that, so over a 3 month period, I slowly weaned myself off the meds and now I take no meds for my grand mal seizures. I still have them only while sleeping and I still have 1 maybe 2 a month. I still also have stomach nausea at least 10-20 times a month and throw up frequently. Now within the last 3 yrs. I have started to have headaches almost daily. The headache pain is above my eyes and down the bridge of my nose. My ex-boyfriend's stepmom thinks the headache pain is sinus problems, but I have never had any sinus problems at all during my life. I also have a headache every 2-3 months where the headache pain is on the left side of my head and the pain happens for about 2-5 seconds then goes away. Several times when I had this headache I have felt a weird feeling like I was out of it and every thing did not seem real. I had all the tests done CT Scan, EEG, and MRI and all tests came back negative. About a year ago I went to see the dr. who prescribed the Dilantin to me and he said because all the tests were negative and showed no seizure activity, he now thought my seizures were Psychosomatic seizures. I went home and looked up info. on the Net about those type of seizures and I can say that that dr. is WRONG is his diagnosis of my seizures. I have done a lot of research of PNES seizures and my grand mal seizures are not those type of seizures. I have my seizures only while I am sleeping. PNES seizures can happen when the person is awake or asleep. The seizure meds I was prescribed STOPPED my seizures, plus the seizure meds were for grand mal seizures. PNES seizures do not stop from AED meds. My ex-boyfriend has witnessed my seizures and finally about 6 months ago, he saw the seizure from the start of it and he told me my seizures are definitely grand mal seizures. The seizure always starts the same and all that happens during the seizure is the same. PNES seizures always change. During those seizures the person moves their head from side to side (I do not do that), their eyes are tightly closed (my eyes are always open and blinking rapidly), they do bicycle riding movements (my body and legs are straight as a board), they do pelvic thrusting movements (my body is straight as a board), they cry or shout. They always do the seizures in front of people. I have never had a seizure awake or in front of anyone. My seizures always happen while I am sleeping and my boyfriend is asleep next to me and wakes up from feeling my seizure movements on the bed. He said my whole body got tighter and tighter, my muscles getting tighter and tighter. Then my arms started to flex rhythmically. My eyes were wide open and blinking rapidly. He also said I stop breathing and my face and lips turn blue. Then I slowly came out of the seizure. He said I was confused and it usually takes me 30 minutes to a half hour to become fully coherent. After every seizure I have had , the right side of my tongue is bitten, I have a sever headache and I feel very nauseated and usually throw up. I have also wet myself. My legs are sore also as well. I takes me a whole day to recover from the seizure. Next month I am moving back home to Minnesota and then I will be able to get Medicaid and then see a dr. for my seizures. Then I can FINALLY find out why I am having seizures. The only advice I can give you is see a neurologist and have them determine if your seizures are real seizures or PNES seizures. If they turn out to be PNES seizures, AED meds will not help them or stop them. The only thing that will stop them is seeing a psychologist and finding out why you are having those types of seizures. Good luck to you.