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Sound like an abnormal EEG?

Tue, 04/15/2008 - 19:42
I really want to keep this short as my story is extremely complicated, in a nutshell i was misdiagnosed with tics and my first neuro. was the doctor from hell. I had my second EEG today, and im starting to wonder if massive facial twitches are normal during the Strobe light? Every time I've had my EEG my face goes crazy at the strobe, it starts off with a grimace and a grunting sound, my eyes are twitching, every muscle in my face seems to be moving. Even my nose, which I didn't even know i could move was twitching! When ever I tell a doctor/nurse/tech about this they all give me strange looks with no answers, ask if my EEG came back Positive, or clear, and then just sort of shrug it off. Im just curious is there anyone on this forum who had similar experiences? are these facial twitches just a normal part of the strobe? (note: During the WHOLE Strobe I twitch, even the lowest setting). Thanks I guess, Im just getting a tad frustrated with my extended diagnoses, and this confusing EEG situation!

Comments

Re: Sound like an abnormal EEG?

Submitted by stephsobota on Tue, 2008-04-15 - 20:46

Wow! Someone else who gets face twitches during the strobe light treatment!  I always do, too, but for me it’s only at the higher settings. I’ve been told that it’s dystonia – I have paroxysmal non-kinesigenic dyskinesia as well as e.  Neon and fluorescent lights would also set off my facial spasms before I started on Tegretol. I sometimes grunt or make little mm mm noises when the attacks hit. My vanilla neuro and epi-doc didn’t know exactly what it was – they just sort of sat there and blinked and shrugged, but a movement disorder specialist did figure out what was going on, and knew what to prescribe to tackle the PNKD and the e.

Can you see a decent neuro, maybe even a movement disorder specialist? What prompted the EEGs- was it the face twitching or something else? Are your facial twitches also set off by fluorescent lights? Can I possibly ask any more questions?

Steph

Wow! Someone else who gets face twitches during the strobe light treatment!  I always do, too, but for me it’s only at the higher settings. I’ve been told that it’s dystonia – I have paroxysmal non-kinesigenic dyskinesia as well as e.  Neon and fluorescent lights would also set off my facial spasms before I started on Tegretol. I sometimes grunt or make little mm mm noises when the attacks hit. My vanilla neuro and epi-doc didn’t know exactly what it was – they just sort of sat there and blinked and shrugged, but a movement disorder specialist did figure out what was going on, and knew what to prescribe to tackle the PNKD and the e.

Can you see a decent neuro, maybe even a movement disorder specialist? What prompted the EEGs- was it the face twitching or something else? Are your facial twitches also set off by fluorescent lights? Can I possibly ask any more questions?

Steph

Re: Sound like an abnormal EEG?

Submitted by Erik J on Tue, 2008-04-15 - 22:50
My eeg was ordered because of 2 seizures this jan. (Grand mal, suspected complex that turned into a grand) I also now believe i have myclonic, and Simple partials. Yes I believe my neuro this time is okay, my first one told me I had "tics" I asked him why I was blacking out and he said "Thats not important". I have hope that my current neuro is decent. I live in a semi-small town (some may consider it big, but its population is only 120,00ish) So there are literally 2 choices for my insurance. =/(that are nearby) Can you explain more about PNKD? seriously, yes, I do have odd facial movements at some everyday lights (not common though, for example I just bought a "sunlight" Lamp, this makes my chin muscles go in a bit, I do love the lamps light but i dont think i can take it!) but they are MUCH MORE subtle such as my chin muscles freaking out a bit, but not visibly noticeable! I didn't know it was "that bad" until the EEG were my face just went crazy =p. you are more than welcome to ask more questions. Do you suggest I see a movement specialist? Also if anyone has any other stories that would be great =P or anything worth sharing!

Re: Sound like an abnormal EEG?

Submitted by slees21 on Thu, 2008-04-17 - 03:44

So far I have had 4 EEG's all of which were normal and came of my meds (I was origionally diagnosed 02 - Im 28 female - by physician) - seen by neurologist who said he didnt think it was epilepsy - I bascially have facial, shoulder twitching at night made worse by alcohol, stress, lack of sleep - the usual.  I had my first grand mal at chrsitmas and have had 3 since resulting in hospital admission - EEG's, MRI CT all normal - but symptoms only relieved by meds.  My prolactin levels were raised post seizure however.  My neurologist has decided that I have frontal lobe epilepsy with complex partial seizures and grand mals.  It is worth saying that FRONTAL LOBE IS NOTORIOUSLY DIFFICULT TO PICK UP ON AN EEG! - Dont be disheartened - change ur neurologist.  Im still having about 5 seizures (twitiching) a night, but its better than 15 and grand mals - so I supposed there is light at the end of the tunnel!

Hope that helps xx

So far I have had 4 EEG's all of which were normal and came of my meds (I was origionally diagnosed 02 - Im 28 female - by physician) - seen by neurologist who said he didnt think it was epilepsy - I bascially have facial, shoulder twitching at night made worse by alcohol, stress, lack of sleep - the usual.  I had my first grand mal at chrsitmas and have had 3 since resulting in hospital admission - EEG's, MRI CT all normal - but symptoms only relieved by meds.  My prolactin levels were raised post seizure however.  My neurologist has decided that I have frontal lobe epilepsy with complex partial seizures and grand mals.  It is worth saying that FRONTAL LOBE IS NOTORIOUSLY DIFFICULT TO PICK UP ON AN EEG! - Dont be disheartened - change ur neurologist.  Im still having about 5 seizures (twitiching) a night, but its better than 15 and grand mals - so I supposed there is light at the end of the tunnel!

Hope that helps xx

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