Could this be partial seizures or non-epileptic events

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Hi. About year ago I was diagnosed with pseudoseizures when one afternoon I started convulsing and hallucinating after taking a few hits of cannabis. Nothing was wrong with the weed itself, as I smoked more of it the next day without any negative side effects.

What was strange about the seizure was before the convulsions began, I started having a strange spiritual/scientific epiphany about atoms and how I was made up of what was basically the same "stuff" as everything in the room around me. It wasn't as though I did know this fact, but it had a deeper meaning to me than it ever had before. It was like a Carl Sagan moment, inside I wanted to comment on how we are all made of star stuff.

However, the more I mulled over these thoughts, it made me feel connected yet disconnected from the universe. Then, it noticed that the room started appearing to have a rippling effect, like throwing a rock in a pond, but it was blurry and everything was bright colorful around me. I also saw colorful spots of light blinking around me. I started having convulsions after I realized my thoughts were beginning to disturb me. All of a sudden my arms and legs started shaking. My boyfriend was with me, holding my arms down so I was laying back into the couch and wouldn't get injured. I tried to tell him that I needed an ambulance, but I had a hard time getting the words out. The room became dark and I was started to lose consciousness, but after a few seconds I started snapping out of it after my boyfriend started asking me questions and trying to calm me. It took a about a minute for the shaking to stop and I felt extremely tired afterwards. I remember laying down and fell asleep immediately on the couch.

Also, what was strange was I remember giggling and talking nonsense about what happened when I regained most of my consciousness. I asked my boyfriend if he thought I really had a seizure. I was confused about what happened to me I didn't know what to think and decided that I didn't want to go to the hospital.

Later, I had second seizure about 6 months after the first one. I was having an heated argument with my boyfriend. I became scared that he wanted to leave me. It was a really emotionally overwhelming thought. I then started shaking all over and began to bite a pillow laying next to me. It quickly exacerbated into violent convulsions. I started making huffing noises and screaming uncontrollably and trashing around in bed. My boyfriend thought I was throwing a fit, but then realized I didn't have control. I remember briefly putting my hand over my mouth to muffle the screaming, because I thought the neighbors would call the cops, it was that loud. It appeared, however, that I had some mild control at points during the seizure. The screaming was the weirdest part, because I felt like something was broken inside me and causing the screaming to go on for what felt like forever. I remember sitting up and trying to grab a trash can, even while my arms were still shaking because I became nauseated and thought I was going to throw up all over the bed. I didn't really understand what was going on. This time I begged my boyfriend to call an ambulance. I felt noodley in my legs when I got out of bed and walked with the paramedics. I felt disoriented and exhausted, yet strangely joyful.

The paramedics came and told me I didn't really have a seizure, as I never lost total consciousness or wet myself. My doctor came to visit me in the ER and told me I had a psychogenic seizure cause by anxiety. I believed him, but I felt like more was going on. I remember feeling elated when he came in. I was floaty feeling and had closed eye hallucinations.

I went to see a neuro and they ran an EEG and MRI, which all came back negative. I argued with my doctor because my mother had epilepsy and I knew it was hereditary. They didn't want to put me on any medication because I was taking Xanax and Neurontin for anxiety. I did have anxiety, but it was because I was not feeling well. They just shooed me away and said there was no chance they were epileptic.

But I was already diagnosed with other neuro problems (gastroparesis, cyclic vomiting syndrome and neuropthy) these episodes where my nervous system feels sensitive, much in the same way a migraine feels, but all over my body. I sometime become severely nauseated and occasionally vomit. I tremble or have jerking and mild automatisms (lip smacking, walking around without any reason, tics and various involuntary foot and hand movements). Sometimes I become confused to the point it takes me 5xs longer to complete tasks at work, counting things or I will have a hard time paying for things at self-checkouts (because I commonly have to dig out three cards to pay for everything). Something about checking out by myself sets symptoms off.

I did some research on seizures and read that people with epilepsy usually have their eyes open during the seizure while PNES did not. I always have my eyes open. I told my doctor this and he became angry and kept saying it was impossible that I had epilepsy. The thing is, my seizures are not always triggered by stress (which is the cause of pnes). Sometimes light, lack of proper sleep or things that require a lot of thought is what usually sets me off.

I think I also have partial seizures because I have:

*emotional outbreaks of anger, fear, crying and laughter
*hallucinations (visual, auditory and olfactory)
*impaired ability to understand writing or spoken words
*impaired cognition
*feeling severely hot or cold
*goosebumps (even when I am in a warm environment)
*feeling strange
*abnormal breathing
*abnormal heart rate
*difficulty urinating
*epigastric sensations
*buzzing and zapping all over my body
*twitching/muscle jerking
*visual distrubances (including brief partial blindness, spots, flashing lights, scotomas, visual snow, double vision, blurring, objects getting smaller or larger)
*numbness and tingling
*abdominal pain
*tightening of abdominal muscles
*smelling strange odors
*déjà vu
*feeling like I have ESP
*difficulty breathing
*dreamlike experiences
*spiritual thoughts, epiphanies and feelings (even though I am an atheist)
*strange, aggressive, hostile behavior (rages that get out of control and make me behave in ways I wouldn't normally do)

Sometimes I am convinced I have temporal lobe epilepsy because of the psychic symptoms of my seizures. It feels like I am on hallucinogens. I am skeptical of the PNES only diagnosis. My seizures have only gotten worse and more frequent. I am scared to go out alone for fear of getting hurt, and since I developed hostile behavior, I fear of doing something illegal, such as property damage, theft, cussing out bus drivers in my city. This behavior is not me. I am a gentle, kind person that is soft spoken and quiet in social settings. I feel like I have a monster inside me. I don't know how to control it or where to go for help. Could these be partial seizures?

I also wonder if Neurontin is making it worse or if it helps. It seems to help when I take it right away when I feel I am having an impending seizure. Can it make seizures worse?
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If you are unhappy with your diagnosis (and I agree that it doesn't sound like a good match for what you are experiencing), be persistent about finding a neurologist who will listen and give due weight to your clinical symptoms.

I also wonder if Neurontin is making it worse or if it helps. It seems to help when I take it right away when I feel I am having an impending seizure. Can it make seizures worse?
It's possible -- for some people anti-seizure drugs do make things worse. However, I would caution you against taking the Neurontin "when you feel you are having an impending seizure." Anti-epileptics such as Neurontin tend to work best when taken on a consistent basis, at a consistent time.
Thanks. I do try to take it at the same time everyday, but I have a horrible memory and sometime forget if I have taken it already. But when I feel "seizurey" I might take it an hour early. I am so scared my medicine is making it worse. It so frequent that I get these seizures, like almost every day, and sometimes multiple times a day. I'm scared I'm going to die before I get proper treatment.

My therapist scoffed at me, after I confronted him about how many doctors now differentiate PNES from ES by asking the patient if their eyes are open during an event and if they do it's 95% chance of real epilepsy, saying: "You would have accidents (wetting yourself) and bite your tongue off if you had epilepsy! I know you don't have it"

I don't know that all epileptic seizure types require one to wet themselves--and every time!
Your therapist is horribly misinformed about epilepsy. The majority of epilepsy seizure disorders don't involve grand mal seizures (the kind that involve full loss of consciousness and convulsions). And even with grand mal seizures, you don't necessarily have loss of bladder control and tongue-biting. I've had nearly 20 tonic-clonics, and only in one or two have I peed myself. My mouth has gotten a bit chewed up, but I've never bitten my tongue off.

I suggest you find another therapist ASAP.
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