Please Help-Seizures?!

[Kishar]

     Hi there. I'm 24, female and currently undergoing diagnosis. I have undiagnosed DiD and was diagnosed with Anxiety/PTSD several years ago, but currently not on medication. I have a history of sleep paralysis and hypnogogic hallucinations. I have tremors in my left arm and notice the muscles in my arm temporarily weaken when startled. Last year and a half I have been experiencing seizure-like episodes. I am seeing a neurologist and have ruled out Epilepsy through CAT, EEG, EKG, MRI (cranial, cervical, lumbar), Echo Cardiogram, Spinal Tap. All tests returned normal. He has been stumped for 6 months.
   I feel like I'm staying conscious during a seizure of some sort. They have taken place every 3 or 4 months for the last year and a half, always during my sleep, except one in Sept in the middle of the day. No one has witnessed one as I have always been alone when they've happened. I just had another one this past Sunday.
     My concern are the seizure-like episodes. I'm asleep and wake up to feel my left foot twitching; it cramps up, I lose control as a snaking sensation begins traveling up my body. Nothing I can do to stop it; feels as if I am being twisted in a vice, being unraveled or like my entire body is corkscrewed and is untwisting from the bottom up. The entire episode is very excruciatingly painful, very disorienting and I only have a vague awareness of what's happening. This sensation courses up my body and once it reaches my head I lose consciousness. Once I come to, the inside of my lower lip is torn up and bleeding as if I bit down hard on it, speech is slightly slurred, have trouble focusing and coordination is a bit off.
   What am I experiencing? I am desperate for answers after so long without a diagnosis. -Kishar

[DragonTU84]

In my personal opinion, it sounds like some form of nonepileptic seizures are occurring in your sleep. Did you have a 24-hour haltar EEG done to monitor you at night? It can track neurological activity while you are sleeping to see if there are any epileptic waves/occurrences happening while you sleep. The mind is a wonderful, yet complex organ which even today we cannot completely figure out. The mind can trick us, or can make us believe something is happening when it really is not. It can also be our greatest asset. With it we have built bridges, formed a way of communication that is more complex than any other creature on Earth, we are finding cures for diseases, we can interpret and comprehend emotions, all with the mind. Certainly your seizure-like spells are frightening and perplexing, as they continue to not only play with your emotions as tests keep coming back negative but you also want the answers - WHAT is causing all of this to occur??

Certainly, as I have said before with the negative results it could possibly be some form of nonepileptic seizures, but what is bringing them on is still uncertain. It can be anything from an autoimmune disease, Vitamin deficiency, Lyme, perhaps a drug that is causing this adverse reaction (what drugs are you currently taking for your known conditions?), or any host of reasons....the list can go on and on. Yet stay persistent, and strong. Don't give up or feel like you lost hope. SOMETHING is causing all of this to happen. Perhaps it is something caused by your sleep paralysis, who knows? I'd say keep on seeing the docs, and I wish you the best. I may not be experiencing the same symptoms as you, but I understand the frustration, sadness/depression, and all of just wanting to know what is wrong with you....I am currently going through that myself.

Just in case you were wondering, I get panic attacks, head electrical sensations, numbness that spreads from my brain to my limbs, tingling sensations, the electrical sensations surges up and down my spinal cord, causing knot pains in my back, my heart rate increases, I SOMETIMES get chest pains and heart palps, adrenaline rushes, hot and cold flashes, cry easily over silly matters, lightheadedness, tremors, clamminess/sweating, hot and cold flashes, times where my leg or arm went numb, buckled up and I could not move them, brain lock-ups near the Temporal Lobe that caused me to just go into a constant stutter until I can feel my brain "un-lock/unfreeze," and have a severely low Vitamin D deficiency. I am also very sensitive to SSRI meds. and cannot take them (they brought about the head electrical sensations to begin with, along with the tremors). The symptoms I get are sporatic and can happen at any moment, but are brought on more often after bouts of increased stress or trauma. I have been given the diagnosist "panic attacks and GAD," but I think something is causing this myriad of symptoms, especially given the low Vit. D., which to me is the indicator something is causing all this. As to what exactly, I still have not figured it out...and my docs think I am a looney given the fact that they "LABELED" me as having GAD and panic attacks, which I DO get panic attacks, but I know I ain't know looney. I just want to get to the root of all of my symptoms, is there something so wrong with that? Not in my opinion...

Hope my story and words of advice help a little!

~Crystal~

[Roger Gould, M.D.]

I am sorry to disappoint you, but there is no way I could possibly make a diagnosis without all of the medical information in your chart, and even then that is not something we can do here online...sorry, sounds  painful and baffling, stick with your doctors or ask for a consultation if you think there is something that is missing.