Picasso face, TN, Tegretol; life is strange...

[Fluffysmom]

Went to my PCP today for my physical and Pap (what fun).  We talked about everything, and she did a small neuro exam, testing for nystagmus and facial muscles working properly,  and she stopped and asked if the Trigeminal Neuralgia usually makes my face more asymmetrical.

I just stared at her, saying that I had thought my face looked funny, and had tried to take a picture of my left eye drifting off to the left, and it seemed like my left eye looked bigger in the picture.  We were staring at each other, and she said that it did appear that my left eye was different than my right; can't remember exactly what she said.

She also said that it wasn't just the eye.  Weird stuff.

She prescribed Tegretol for the TN, and I took my first dose a while ago, so I'm slightly loopy.  The pain is less, though, so I'll take loopy!  My pharmacist assured me that I would adjust and not feel extra dizzy after a while if I needed to keep taking it.

I'll have to stop taking it after tomorrow, as I have my Vestibular testing on Friday and it could definitely interfere with the results.  They want me to stop taking all pain meds, muscle relaxants, etc. for 48 hours, so I called and asked about those of us with chronic pain and neuropathic pain and RLS that have meds that they can't just stop taking.  She told me to call my PCP's advice nurse to find out what I can safely stop taking.

Anyway, does anyone have any ideas about why my face would become slightly Picasso-ish?  Is this something from trigeminal neuralgia or MS?

Kathy

[Fluffysmom]

Well, I'm glad it's at least not hurting you as much today.    

I didn't take Tegretol yesterday or this morning, and my nerve is still doing OK; hurts some, but not the awful kind of pain.

I'm on my way to get my vestibular testing done.  There are 6 things marked on the test order form.  This should be interesting!  I thought I'd look up some of the tests and see what to expect; I've already heard what an ENG is like.  I think I'll look up the VEMP, ABR, and ECoG, then it will be time to go.

[opie74]

Ok, i talked about the funny face, and it came yesterday.  I was fine yesterday morning, then around lunch, I felt like someine hit me with a tired stick.  When my husband got home at 4, he told me I had "the face".  The nerve started hurting later.  It is better this morning.........so far!

[Fluffysmom]

I'm working really hard at not being at the beginning of a relapse!  I'm recovering from a viral outbreak, and have been determined that it won't lead to a relapse like it has in the past.  I don't know if determination will work in this case.

I have the TN, more fatigue, more dizziness even before I took Tegretol, and my tremors are a little worse.  Maybe its just a little relapse?  Tee hee!

I go in for a whole bunch of vestibular testing tomorrow, and expect to be even more dizzy, fatigued, and also curious about what the test results will show.

I think I need to rest.  Thanks for letting me know that I'm not the only picasso face around!

Kathy

[opie74]

I get picasso face at the beginning of a relaps.  It starts with my right upper lip and progresses to my lower ip, jaw (TN aresa) eye lid and such.  It is the opposite eye that draggs around.  The solumedrol really helped.

[Fluffysmom]

I just have to stop taking the tegretol for a couple days before all my vestibular tests, then start up again; luckily, it will be on the weekend when I try it again.

I suppose it could be Bell's Palsy, or maybe my joke about working the muscles around my eyes wasn't so far off, ha ha.  Or maybe a problem with the muscles around my eyes is what has led to my blurred vision and occasional nystagmus.  My PCP did see the nystagmus, but it was mild, nothing like what my vestibular PT noticed.

I've always known my face was asymmetrical; just looking at a picture of me smiling shows that quite clearly.  This is something new.

Thanks for your help, Quix.

Kathy

[Quixotic1]

I'm glad the neurontin is working for you.  Patience really is the key to tolaerating this stuff.  All too often se reject the med just because our bodies didn't have enough time to adjust.

Q

[PastorDan]

Quix, I am now very slowly ramping up on Neurontin, from 300 to 600 mg after a week or so, eventually I'm supposed to hit 900, but I won't try that change again except on a weekend; Monday & Tuesday last week (or was it the week before?) were just too droopy.  I do think the more gradual change than originally prescribed is helping, as is the increasing dosage.

[Quixotic1]

The usual reason for sudden assymmetry of the face is a Bell's Palsy which is a weakness of the muscles of facial expression.  This is caused by a problem with the 7th Cranial Nerve (CN VII) called the Facial Nerve.  It doesn't have to be complete, it can be mild such that there is less tone in one side of the face, but everything works okay.

Another cause could be a problem with the muscles around the eye and the eyelid.  If one eye looks bigger, then it might be more wide open.

My TN calmed down as I approached 600mg per day and went away on 900mg per day.  give it time.  The loopiness will go away and you won't even notice you're on the med.  give it a good week at each new dose to calm down.  Once you get used to the basic dose, later increases in dose shouldn't bother you much.  For now, just be loopy.  Fluffy won't mind if he gets a little more attention.

Also, no one actually has a perfectly symmetrical face.  In fact, if you take a straight on photo of someone's face, then cut it down the middle and use a mirror to reflect it back, you'll find that it looks inhuman - really bizarre.

Quix

[Fluffysmom]

Thanks, Michelle,

The pain was at the wanting to scream stage when I finally asked my PCP for Tegretol.  I had taken some extra Lyrica in the past, but my insurance in all its wisdom will only give me 90 capsules of Lyrica a month, which doesn't leave any room for extra capsules when the TN flares up.

I don't have a formal diagnosis of it, but both my dentist and my PCP think it is trigeminal neuralgia.

I don't know if I'll need to be on this Tegretol long-term or not.  My last flare-up lasted for months; I saw my dentist as it was calming down somewhat, and she said that it wasn't dental in origin.  I had my teeth cleaned May 11, and everything was fine, no evidence of pain on that upper left side.

A week later, the pain was back. A week later, I saw my PCP, and now I'm loopy on Tegretol, but have so much less pain, and I'm only taking 100 mg twice a day.

If the side effects don't calm down, I'll look into Trileptal instead; thanks for that letting me know that it has less side effects.

Kathy

[michelleric]

Hi Kathy,

I am on for Trileptal for Trigeminal Neuralgia. The neuro also gave me a script for Tegretol, but felt the Trileptal does the same thing with less side effects.  I know Tegretol is usually the 1st choice for TN. It does help me, sometimes not fully, but definitely lessens the pain.

I don't know much about the asymmetry of the face. As far as I know it wouldn't  have anything to do with TN, but again, I don't know much about it.

Good luck and I do hope your pain lessons. I know TN can be excruciating. At least for me it is, one of my worst symptoms.

Michelle

[Fluffysmom]

I'm wondering; does the fact that the Tegretol is taking away the pain mean that it is indeed from Trigeminal Neuralgia?

It seems liike I read that Tegretol is an anti-seizure medication, and is also used in the treatment of trigeminal neuralgia.  Is it not prescribed for other pain?

Just curious!

Kathy

[Fluffysmom]

Its a shame that the vestibular rehab didn't work for you.  I've been doing my exercises, and don't know that they are helping.  I did joke to my PCP the my rehab exercises were pumping up the muscles around my eyes, causing my face to look different.  :o)

I don't take any anti-dizziness meds, because none of them have any significant effect on me.  It's possibe that the scopalamine patches helped when I had my first big vertigo event many years ago, or maybe it was just over.

My face was never symmetrical, but it does look different.  Oh well!

Kathy

[PastorDan]

I've heard from more than one hair stylist that symmetrical faces are rare, but never heard of the degree of asymmetry changing.  I can certainly imagine how TN might have some impact, but I don't count myself as particularly well informed in this area.

When I had my eight weeks (or whatever it was) of vestibular rehab therapy (with no significant results), I had to stop all of the anti-dizziness meds.  I was told that the idea of VRT was to retrain my brain to accept its new sense of balance as normal, but that it wouldn't be able to do that if it was medicated in such a way as to not sense that state as well.  I still don't have a good theory as to why it didn't work for me, but I am about as off balance as I ever was.