i have been told I have Psychogenic Non-epileptic seizures, been told I have mixed seizures, and some dr's say I"m just faking the seizures(this is infuriating).
I present with a horrible rigidness, my arms curl up, I shake sometimes like a grand map, sometimes just one side, and sometimes absence like apperance. My eyes roll in the back of my head, or shake side to side fast. It can be in my sleep, awake, alone, in public, no pattern. The only thing is they never show on EEG. only muscle movement shows up.
twice after a seizure I've had standby's to CPR saying I wasn't breathing or have a pulse, but once in ER they say I'm fine, and send me home.
sometimes I will have seizures back to back for HOURS, but some dr's let this continue hour after hour without any medical intervention, just watch me. A few times a dr will sedate and intubate bc he said no one should be doing that that long.
they say they prove mine are NES bc i have no brain damage after hours of seizing and my blood work is usually normal.
I'm ok witht he Non ep dx, but its the being told I"m faking, or if I just manage my stress they will go away, or that I have controll over it.
I have NO clue when I'm seizing, I lose control of my bladder, I have caused injury(which most people who fake for have PNES do not) like shoulder dislocations, my heart races, I sweat alot, and feel like I've sprinted a marathon with no training. Its miserable.
The hardest thing is how dr's treat me. Like I'm crazy. I have had some nurser and dr's pinch me so hard they leave bruises, trying to prove my inflicting pain trying to get me to respond that i'm faking, I've had saline squirted with extreme pressure in my eyes, alcohol pad tips put on my eyeballs, bruses left of feet trying to inflict pain and text reflexes, had nurses twist my nipples so hard i'm left with bruises, had sternum rubs done so hard I'm brusied and in pain for days.
I don't understand this "abuse" to prove i'm faking especially bc I never respond to their torture during the seizures, just feel it after.
I have been told i have something called conversion disorder. That its not something i can controll but still not originated as medical but mental illness.
its all so hard and scary. I'm so afraid one day they will let me seize too long, or not do anything I and I suffer permanent damage one day. Its at the point where if I'm home, we don't even seek medical help bc they treat me so badly. They just place me in a room, put the rails up, and let me seize...hours at a time sometimes(each seizure last only a few minutes but will happen back to back).
I don't have any advice but know your not alone, and always stand up for yourself. Demand to be treated with respect and follow your instincts. seek a 2,3,4th opinion if you need. See an epilepsy specialist. ER dr's don't seem to know anything about non-ep seizures.
and if the meds stopped your seizures, than the chances of each seizure being non-ep is low, may you have mixed too....maybe try to find one you can tolerate well.
Dx's: Depression/anxiety, Non-Epileptic Seizures, repeat Rt. shoulder dislocations, NERVE damage after if IV infiltration with chemical burn in left arm,endo &ovarian cyst. I could go on but will spare you all
Meds: Opana 10mg(waitng on PA), oxycodone 5mg bt, neurontin 100mg, clonzepam 1mg PRN
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