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Old Nov 12, 2017, 03:16 PM
tsrc78 tsrc78 is offline
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Member Since: Aug 2017
Location: NC
Posts: 102
Quote:
Originally Posted by BirdDancer View Post
I have a diagnosis of Simple Partial seizures from a neurologist, but an epileptologist said it wasn't definitive based on what I described and all my EEGs, MRI, etc. If I have had these Simple Partial Seizures they were sensory or psychic. Not motor or autonomic. It was actually rare that anyone even saw these "experiences". Some of the "experiences" I had could have been seizure activity or mania symptoms.

I have taken a very large dose of Tegretol XR for about 6/7 years now. I also take a small dose of Lamictal. Both are antiseizure medications, as well as bipolar moodstabilizers. Since I reached a therapeutic dose of Tegretol XR (1400 mg for me) these so-called "experiences" ended. I actually now doubt that I ever had Simple Partial Seizures, but I'll never know for sure.

You describe your seizures as psycho-genic. Can you describe in more detail? When people think of seizures, they usually only think of convulsions.

I have bipolar type 1. Probably since age 14. I did not have the "experiences" I mention that led to suspicion of seizures until I was 38.
Usually with my seizures I experience an aura, similar to my migraine auras, in which I feel very nauseous, but the rest of my body also starts to feel "off", kind of a tingling sensation. Sometimes I get a bit of vertigo, my ears hurt on the inside. If I feel one coming on, I try to get on the floor and move breakable objects out of the way. I always try to stop it, try to take deep breaths to see if I can "calm" this odd body feeling down. But I am never able to stop it.

Then it almost always with a quick jerk of my leg, usually my right leg, then my other leg jerks, then both shake. Many years ago a neurologist told me I suffered from myoclonus, which is a sudden, short jerk of your body, often while you're drifting off to sleep. Happens to all people, but it was happening much more often than normal, so I was given Klonopin to take daily. It did help the myoclonus, but soon after I was diagnosed and given Klonopin for bipolar, so I never followed up with the earlier neurologist.

If not on the floor, I will fall to the floor. Got 2 concussions earlier this year from falling and hitting my head during a seizure. My entire body will have convulsions, and from what my husband tells me the are usually confined to my arms, legs, and torso, but I don't do too much rolling around. I don't actually remember much about the episodes, other than my eyes are often closed, but they sometimes roll back and are open, when I remember seeing light. Somehow this is significant, but I don't remember why. Most of what I remember is afterwards during what I call my "recovery period". Afterwards I lay on the floor, usually have a little bit of a hard time catching my breath. I am exhausted, too exhausted to move. And I always start developing a migraine - always. I start being disoriented during my recovery period, which can last from about a minute to maybe up to 10 minutes.

Then after that, sometimes I am a little disoriented, have problems thinking, getting thoughts together, talking, remembering. If I am very disoriented, like I was after one a few weeks ago, I was disoriented for about an hour, and I don't remember any of it. Other than at one point I couldn't remember my children's names. My husband knows more about what happens during my disorientation. Sometimes I have these back to back, up to 3 or 4 on occasion, I just have a shorter disorientation period.

That's about it, hope that is helpful. At least it gave me a chance to summarize tons of notes I've taken over the past year. I don't know they are psychogenic, I have just been made to think everything is. I think something else may be going on, although I doubt it's epilepsy, I don't see how it could be. Hopefully this neurologist will care enough to listen to me.
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Anonymous59125, rwwff