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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: One sided facial twitching, numbness, seizures, cyst

 amyb1121 - Thu Apr 30, 2009 6:12 pm

My 12 year old daughter was recently diagnosed with epilepsy after a lateral ventricular cyst was found. She has a 3 or more year history of headaches which lead us to the CT, which found the cyst. The neurosurgeon sent us to a neurologist because he thinks her symptoms she had were from seizures and not the cyst. The neurologist did an eeg that showed abnormal brain activity on both sides of her brain. She is on 600 mg of trileptal and 1000 mg of kepra daily. She was having dizziness, bad smells, migraines. She is also always very clusmsy. Last week, (she never had a seizure/seizure symptoms prior to this) her left side of her face starting spasming/twitching followed by neck and head turning, kind of like tourettes. We assumed it was seizures and she was hospitalized for 3 days. They did a 24 hour eeg and it showed no seizures. The eeg was recorded while these episodes were occuring. The facial spasm is about an inch above her left nostril on from the side of her nose and to the middle of her face. They have taken her off trileptal and it has not stopped. She also has numbness on her left side accompanying this with sharp pains on the back left of her head shooting down her neck. This is always occuring on her left side. They do not believe seizures are causing these symptoms. Could it still be seizures or something else? My mind still keeps going back to the cyst which is on the right side of her brain but is "not" in the brain matter. The doctors are convinced it's not seizures, nor the cyst. Please anyone help!!!
 amyb1121 - Sun May 03, 2009 8:29 am

I wanted to add that now my daughter has pain shooting in the back of her head, her arms and hands have pain. They also tingle and go numb. This seems to coincide with the twitching episodes she has as well. Anyone know what is going on? HELP!
 amyb1121 - Thu May 07, 2009 7:09 pm

Also, we just went to the doctor today. He suggested that my daughter might have fibromialgua (sp). He doesn't know if my daughter needs to be on meds. for seizures... I am at my wit's end. HELP!!!!!
 amyb1121 - Mon May 11, 2009 9:48 pm

This is getting really weird. I can see the muscle in her neck tightening as well. I took her the the chiropractor and she said she is really "messed up." (Her words not mine.) We are going to another neurogist for a 2nd opinion tomorrow. Hopefully, he'll help us. I just wonder if maybe it's seizures that the latest eeg can't pick up for whatever reason. I'm perplexed.
 amyb1121 - Sat May 30, 2009 10:22 am

She is now experiencing horrilbe back pain that will last for a day or two, get better and come back again. She is doing nothing to bring on the pain. She is also experiencing neck pain and the shooting pain in her head. Someone please answer me.
 John Kenyon, CNA - Mon Jun 01, 2009 2:17 am

User avatar Hi there --

While it's difficult to take issue with doctors' diagnoses based on clincal testing and first-hand evaluation, one has to wonder about the symptoms vs. the presence of a known cyst, and there is also the matter of EEG performed either with the intention of provoking seizures and/or performed during what appears to be seizure activity. Both would seem reasonable except for what's actually happening, which should be evident to everyone involved. I think what may be happening is a form of or something similar to Jacksonion seizures. Since these are often confined to a specific area of the body and sometimes travel in retrograde fashion, I wonder (but of course cannot prove) if perhaps these seizures are sometimes so localized as to have their origin somewhere outside the temporal lobe. The fact that there is known to be a cyst present on the opposite (and so operative) side of the brain, has to be considered despite the failure of the EEG to reveal seizure activity. This wouldn't be the first time this has happened.

Another possibility is that there is a nerve inflamed or otherwise impinged upon (neuritis, neuralgia), perhaps the facial nerve (trigeminal) which is being indirectly affected by the presence of the cyst, in which case seizure activity might well not show up on EEG. The medications tried so far have been ineffective and should show some improvement in seizure activity, so the next logical step, it would seem, would be to try one of the anti-seizure medications which is known primarily for its pain -blocking effects (gabapentin, pregabalin). It would be worth the trial, would be a provocative test, and if effective might well not only control the symptoms but help narrow down the field of possible causes. This is a seemingly perplexing situation, but only because it doesn't fit any of the commonly recognized paradigms for seizure activity. I've found there can be overlapping grey areas where seizure-like activity is present, and it won't always be recognize by EEG because the site of origin is actually outside the temporal lobe or may even be localized in the vicinity of the affected nerve. The doctors attending need to broaden the scope of their speculation, and I think a trial of one or more of the abovementioned drugs could be helpful not only with management of symptoms, but could well serve as a diagnostic function by elimination.

I hope this is helpful. Good luck to you and to your daughter. Please follow up with us here as needed.

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