Does anyone else feel like Alice in Wonderland? Need help and answers please!

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Ckmixx21

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Last year I had a grand mal seizure. The only other one I had in my life was ten years previously. I've been on Topamax every day for the past year since the grand mal, about 200 mg. the doctors debate if I even have the seizures, one says I have migraines. One thinks I had grand mal. I was unconscious and seizing for both. Sounds like I had seizure, but whatever. For both of those I had a similar aura....tunnel vision, fade to black but with my eyes open. I knew it was coming and I knew I was fading out or fainting.
But what is new is the rabbit hole Alice in wonderland stuff. It is like a scene from a movie unfolds in front of me...like a am part of a play. It's massive déjà vu. It usually is a group of people in a circle and the dialogue unfolds Ina way that I know who is going to say what before they say it or I tell them what they are going to say in advance or the dialogue gets dispersed one word at a time to each person in the circle...or it becomes a song or a rap or yesterday I just kept hearing myself say I'm having a seizure over the dialogue...somehow the voices and scene was disjointed like a bad Japanese movie dub job. Then near the end I was just lost on my head and I had to catch up to the scene in a way and I could hear my husband screaming at me. He thought I was drunk and didn't know I was having a seizure, and I remember hearing him and just not wanted to come back. And then I saw my son run by and I said to myself go back for him...and I literally came back and woke back up into the present....but it seemed like I was gone a really long time.
The last time this happened to me it was only 1-2 minutes and I was almost trying to catch up,to real time, and a coworker was rubbing my arm and calling out to me by name...like she saw my eyes roll in my head and knew I was "out of it" and waited for me to respond back. Yesterday it went on and on and on for at least five minutes.
Is this what you all call partial seizure? I never lost consciousness or actually seized or needed medical care. Do I need different medication for these? I've reported two of these to my nuerologist now and he has done nothing, not even named them. Should I change doctors?
Any advice or help would be appreciated.
Does it mean anything that I am changed from the grand mal to this activity?
Does anyone else get afraid that we aren't going to come back from one of these? I was so afraid I was going to die inside of y head yesterday....so very afraid....please respond.


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Hi Ckmixx21,

Sorry you had to experience what you did and sorry the docs don't agree. What you described sounds like a simple partial: the deja vu experience and the voices is what can happen in simple partial seizures;

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).
Click to expand...

I have SP, CP, and used to have TC (grand mal). When I first started having seizures years ago, they started as SP and progressed to TC. But it is different for everyone. Your neurologist may change medication or add another one.

I suggest you change doctors, since your current one didn't seem to be concerned with the change in seizures. I suggest you look into finding an epilepsy specialist, an epileptologist if living near a University.

Good luck!
 
Does anyone else have advice about coming back from a simple partial seizure? Is it something you can control or speed up? This last one took so long.....I felt like I was not going to come back this time....


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Thank you! My neurologist emailed me back still in denial that I have seizures saying this could be a migraine or low blood pressure. He did not respond at all to my description of simple partial seizures. I also asked if I should change medication or increase dosage or come in for testing and he said no, I was fine. Hummmm. Any comments? Feedback. I am asking for a referral from my primary to a new nuerologist.


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I would suggest asking for a referral to an epileptologist, which is a neurologist that specializes in epilepsy. A neurologist generally needs to know a bit about everything in neurology (strokes, head injuries, MS, aneuysms, neuropathy, migraines . . . ) and although some may focus their practice in a few specific areas of neurology, including epilepsy, a neurologist does not have the extent of training in epilepsy and seizures that an epileptologist has (otherwise he/she would call themselves an epileptologist). You may also want to do a search for the nearest epilepsy center to you - that might be a good place to start to find out about an epileptologist nearest to you if the epilepsy center is far away.
 
:agree:

An epileptologist should be more familiar with all the symptoms and varieties of epilepsy, particularly simple partials.
 
Sure sounds like a simple partial seizure to me. Get some tests. They may want to change your medication. I have quite a few simple partial seizures so they added trileptal (generic) to my regime of pills.
 
Nakamova said:
:agree:

An epileptologist should be more familiar with all the symptoms and varieties of epilepsy, particularly simple partials.
Click to expand...

Me too, that's why I suggested an epileptologist in the first place, since her current neuro is in denial about her problem. But then, maybe this is why he doesn't believe it is E:

http://www.ncbi.nlm.nih.gov/pubmed/23957288

Alice in Wonderland syndrome as aura of migraine.
Ilik F1, Ilik K.

Alice in Wonderland syndrome (AIWS), named for Lewis Carroll's titular character, is a disorder characterized by transient episodes of visual hallucinations and perceptual distortions, during which objects or body parts are perceived as altered in various ways (metamorphopsia), including enlargement (macropsia) or reduction (micropsia) in the perceived size of a form. Migraine aura is a transient neurological symptom that most commonly involves the visual fields and occurs before the headache phase. Aura symptoms include the perception of flashing lights that begin in the center of vision and expand in jagged patterns out into the periphery. Symptoms may be somatosensory, such as numbness and tingling in the lips or fingers. They may also involve a profound alteration of the perception of space and time (the "Alice in Wonderland" syndrome). In this article, we present a child had Alice in Wonderland syndrome as aura of migraine.
Click to expand...
 
Ckmixx21 said:
Does anyone else have advice about coming back from a simple partial seizure? Is it something you can control or speed up? This last one took so long.....I felt like I was not going to come back this time....


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Click to expand...
My neuro prescribed klonipin around the clock until I came out of my status seizures and for a couple days after that. She gave me a 6 month prescription for them. 1mg twice a day and 2 mg at bedtime. I had to cut the 1mg in half for during the day. 1mg was too much for me.
 
Ckmixx21 said:
Thank you! My neurologist emailed me back still in denial that I have seizures saying this could be a migraine or low blood pressure. He did not respond at all to my description of simple partial seizures. I also asked if I should change medication or increase dosage or come in for testing and he said no, I was fine. Hummmm. Any comments? Feedback. I am asking for a referral from my primary to a new nuerologist.


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Click to expand...

In the past I didn't worry much about the 15 seconds to several minute ones but she insists I call her even for the 10-15 second ones. If I was you I would look for another doctor. I see my neurosurgeon, he operated on my back 3 years ago, 16 hour surgery, on Tuesday. Even though I was having partials at the time we didn't know it. I plan to ask his opinion about my seizures. The seizures did change after the surgery, I developed lots of status seizures that involved phantom odors.
 
Thank you all. I never knew there was anything better than a nuero! Now I feel empowered!


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