Seizure-like Episodes

Hi there. I am a 24 year old female and am currently undergoing diagnosis for a sleep disorder. I also have (undiagnosed) Dissociative Identity Disorder and was diagnosed with Anxiety several years ago, but am not taking any medication for it. I will be doing a sleep study very soon and am hoping they can figure out what is going on. Maybe someone here might have some clue as to what's going on with me.

I feel very alone in what is happening to me and would like to hear anyone else's take on the matter and their own experiences.

I have always had arm tremors in my left arm (since I was about 13 or 14) and I notice that it temporarily weakens when startled.

For the last year and a half I have been experiencing seizure-like episodes. I have seen a neurologist about these and he has ruled out Epilepsy and several other things through tests including a CAT, EEG, EKG, MRI of the head, neck, and lumbar vertebrae, an EchoCardiogram, a Spinal Tap, Urine Analysis, Blood Work, and an Orbital Scan. All of those tests have returned normal. However, he is at a stalemate now and doesn't know what is wrong with me, and hasn't known what's going on for the past 6 months.

My main concern are the seizure-like episodes. They always start the same way, I'm asleep and wake up just enough to feel my left foot twitching. My foot then cramps up, I lose control and a snaking sensation begins traveling up my body. There is nothing I can do to stop it and it is the most excruciating kind of pain I have ever felt in my entire life. It feels as if I am being twisted in a vice or pulled apart at the seams (sort of like a sweater being unraveled by one thread). Or rather like my entire body is corkscrewed and is untwisting from the bottom up. The entire episode is very disorienting and I only have a vague awareness of what's happening, but the pain is what I remember clearly. This sensations courses up my body and once it reaches my head I lose consciousness. What I am assuming to be several minutes passes and I come to. The inside of my lower lip is torn up as if I had been biting down hard on it. When I come to, my speech is slightly slurred, I have trouble focusing and my coordination is a bit off.

I have no idea what I'm experiencing and I feel like I'm staying conscious during a seizure of some sort, but I know that's not usual for typical neurological seizures.

All of these have taken place during sleep until last September when I had one in the middle of the day. No one has ever witnessed one as I have always been alone when they've happened. They've been happening every 3 to 4 months for the last year and a half. I had one back in September with a six month span of no activity and then just had one this past Sunday in March.

I have had a history of nightmares, sleep paralysis and hallucinations during the hypnogogic phase of sleep but these seizure-like episodes are just downright terrifying.

I am desperate for any answers or experiences akin to mine... I'm beginning to feel as if I am totally alone in this.

What am I experiencing?

I am desperate for help after so long without a diagnosis. Please respond.

-Kishar

[jmh776]

I am sorry to hear about your medical problems.  I had what I called spells for 8 years.  Doctors all said I had anxiety.  Their diagnosis caused anxiety because I knew there was something very wrong.  One day a month ago I went to an ER and lucked out.  The ER doctor suspected seizures and called a Neurologist who specializes in seizures.  He ordered a 24 hour EEG and saw 3 seizure episodes along with numerous smaller ones during the test.  

I was put on Keppra this past month and it has helped my symptoms a lot and I am thankful that the two doctors questioned the anxiety diagnosis.  I feel very grateful to them.

Best to you in your journey.

[shelaur]

My daughter is very new to this diagnosis of seizures. She is now on Keppra. She can't function during the day from the fatique, and the dose is currently only given at night rather than morning and night. Now she can 'function' but is still very tired. How long did it take you to adjust to the medication? How many times a day do you take it? Are there any side effects for you such as irritability, depression, hostility, etc.?  I've heard about these possible side effects from some people but so far I haven't seen it in my daughter. How old were you when first diagnosed? Thanks for your response. shelaur