Is This Trigeminal Neuralgia??? Please help!!!

[Kimberly]

I am a 31 year old female who has been diagnosed with trigeminal
neuralgia, however I don't think this is what it is.  Approximately one year ago, out of the blue, I began have dizzy
spells along with severe tingling in my head (top,sides,and forehead).  I went to the emergency room where they discoverd that I had an acute sinus infection.  The emergency room physician thought that this could be the cause of my sypmtoms.  I followed up with my regular doctor who then referred me to an
ENT. He scheduled an MRI on my head, which came back negative. I
had no tumors, lesions, bleeds etc.  He then told me I could possibly have trigeminal neuralgia and put me on Tegretol for 1 month.  I took the medication, which did not help. After another
month passed my symptoms went away on their own until this past
April.  I am having the same exact sypmtoms, but with a few more
symptoms that I didn't have before.  The dizziness is more of an
off-balance feeling than a room-spinning feeling.  Sometimes I feel nauseated and recently I have been having pain that starts on the right side of my head and goes down into my jaw.  I also will get an earache in the right ear, but this only lasts for a few minutes, and I sometimes get a dull pain in the top right side of my head. Could someone please help???   Thanks, Kimberly

[CCF Neuro[P] MD, RPS]

Dear Kimberly:

Sorry about your pain.  As you know this disorder is more common in women and is characterized by severe, paroxysmal, unilateral facial pain (can be bilaterao).  The pain is brief, lancinating, shocklike, jabbing or sharp pain lasting seconds to minutes.  The pain is often precipitated by light touch, cold wind, chewing, shaving, speaking, or brushing teeth.  Frequency of attacks vary from rare to many per day.  Attacks can occur for years (sorry).  So, you have many of the symptoms.  I think I would agree with the diagnosis, BUT not being able to exam you one can never be sure.  Yes, you might have a sinus infection and this could be very similar to trigeminal neuralgia.  So, you might want to have your physician look at you.  You don't describe loss of hearing so likely you do not have Meniere's disease.  Usually, tegratol works very well for this disorder, but we have also found that neurontin works as well.

I hope that I've helped alittle.

Sincerely,

CCF Neuro MD

[mig]

Please help me! I have had fasiculations in my calves, feet, hands, arms, etc. for the past 3-4 months.  I recently  developed muscle cramps in my hands and feet , mainly in the morning when I first get up. I had an EMG of my lower extremities which was normal, but the twitches seem to be getting more pronounced. I am worried about ALS. I have some fatigue of my left leg at times and my left arm. If I have Als, could the EMG have been normal? I also have numbness and tingling of all my extremities, face and tongue at times. Please respond and thank you so much!!!!

[CCF Neuro[P] MD, RPS]

Dear MIG:

Muscle fasciculations (twitches) without muscle weakness is not ALS.  The normal EMG (which would have been abnormal in ALS) also suggests that you do not have ALS.  There are many reasons to have fasciculations.  There is a type called benign fasciculations that may arise from a viral infection or for reasons that we don't fully understand.  They do no physical harm but they can be emotionally draining.  Fatigue and anxiety make them worse.  They can come and go, and last for years or just for days.  The best advice I can offer is to see a neurologist and have a face to face agreement that this is just benign fasciculations.

Sincerely,

CCF Neuro MD

[C. Jenkins]

Doc RPS:

I've had benign fasciculation for years now.  It's a tad bit annoying, to say the least... but we learn to live with holding a glass of water during the 11 pm news expecting the unexpected.  It's a possibility that BF might slop some liquid, but hey... paper towels work for me!  I'm used to it.

As for trigeminal neuralgia?  I have that too.  It's been going on and off for over 10 years.  Having NF doesn't help.  If I had to choose (and I did) Tegretol over Neurontin, Neurontin wins hands down.  Like I said before... "it's a pushable work-horse."  I was on Tegretol for several years, then yellowing skin accompanied by a dull sustained pain in my liver flagged warning and I switched over to the work-horse.

Some questions for you.  What about Baclofen?  Could it be used in moderation to curb skeletal spasms brought on by benign fasciculation?  MS patients use it, don't they?  And what about Mexiletine?  I know it is primarily used as an anti-arrythmic, but couldn't the "caine" quality be of some significance against the pain associated with trigeminal neuralgia?

Curious,

C. Jenkins

[CCF Neuro[P] MD, RPS]

Dear MIG:

Since your EMG is normal and you do not describe muscle weakness, the diagnosis of ALS is very unlikely.  You probably have a condition called benign fasciculations.  As previously posted to you, these come and go and do not cause lasting muscle damage.

Sincerely,

CCF Neuro MD