TN bilateral
 

The TN I have started out with lightening bolt like pain on the right side of my face near my nose/chin and then my nose. Then, after 2-3 years, occasionally a pain on the left side, then all of a sudden one day a severe lightening bolt pain on the left side. Since then, the pain has been more on the left side, but still on both sides.

I have been taking Topamax for the pain and it has been increased several times.

My neurologist has not wanted to accept that I have it bilaterally, specifically because I have been under watch for MS since 1988 because of all the symptoms I have. If it were the old days before MRI's, I would be labeled as an MS patient since I have the symptoms on the list that qualifies you as having MS. I have been labeled as a MS patient in medical records before.

Anyway, I do get a "vacation" from it for a week or so and then it comes back. Usually there are triggers - cold, talking, sneezing, coughing, crying... there are various triggers. I know I need to go to a dentist but I have been putting it off, dreading it.

I can't imagine having bilateral TN...I simply can't. I feel so for you.

I understand the triggers. I have several that I try very hard to mind. I had several teeth pulled on that right side of my face because I must've had abcesses and not all show up. All along is was the TN.

Can you find a doctor who might support what you're stating, and work with you on it?

I wish you so much more than well.

KD

As KD said: I also feel for you, Lynda.

I've not tried Topamax. The (most recent) medication my neurologist Rx'd is Relpax; at the time she prescribed it (2005), I'd come across one lone site on the Net where someone else's neurologist also Rx'd it for TN. (I wonder if maybe more neurologists might be Rx'ing these days.)

For dentistry, my neurosurgeon suggested seeing a dentist who uses conscious sedation. For any prolonged procedures, he said that it should be done via hospitalization. Uhhh, I'm not to fond of that idea, and I've been procrastinating finding a new dentist.

Have you heard similarly?

bilateral tn
 

A great friend and part of the braintalk family, Tracy, has bilateral tn and has had for quite a while. I hope she'll be posting here soon, and maybe you can compare notes. One side is tough enough, my heart goes out to those of you with double the trouble. Especially since I try to distract myself once in a while by scratching the non-existent itch on the good side when I know that I don't dare scratch the real itch on the bad side. What a bummer. Nancy

I have been questioning that possibility for myself as well. Mine was originally only on my right side (which happens to be the side my seizures fancy, too). Last week, I started to have the same issues on my left side and it worries me.

I really hope you do find comfort, it is the worst pain I've ever felt in my life. No matter how instant it is, it is horrible to experience it.

I wish you the best. :) (All of you!)

Me Too.
 

Hi Lynda,
Reading your post it could have been written for me apart from the many trigger points you mention, my bilateral TN is more unpredictable and fires off when it feels like it, apart from when it is cold and windy this sets off my pain.

If I was in your shoes and my neurologist was playing down that I had bilateral TN (when it's pretty obvious that I do) I would be looking for a new one! It's easy for him, he doesn't have to live with the pain.. Lightening bolt, electrical stabbing pain = TN.
I think you'll find many of us TNer's have had our share of dodgy consultants before we have found the right one, I had two myself that I wasn't happy with, so I moved on until I found the right one for me, and I am very happy with mine now (Prof Joanna Zak)

I haven't used Topamax before, I find, I have pretty good control over my tn with Trileptal, I still have pain every day (No remission yet in 5 years) but no where near as bad as it has been in the past. Have you tried Trileptal (Oxcarbazepine) before? I swapped over from Tegretol due to the side effects and it's the best move I could have made.

I hope it helps a little knowing your not alone in having BilateralTN.

Take Care
Tracy.

Lynda,

Sorry you have such bad pain. I have only had one really painful episode of what I believe was TN--the first one many years ago--but those shocks under my ears were so excruciating that I remember thinking if they had lasted more than a split-second, they would be literally unbearable.

Like you, I have bilateral symptoms. In that first episode, I had about a dozen shocks over a week or two--all on my left side EXCEPT one on my right side.

In the seven years since then, I have continued to have almost daily face shocks, but little actual pain. My most common variety of electric shock--running in a semicircle around the outside of my eye and into the side of my nose and upper lip--is actually completely painless.

For maybe every ten shocks on the left side, I get one on the right side. At some times I will have a dozen or so of them a day, then they taper off and I don't notice them for a while, but they ALWAYS come back!

I, too, was once told (not definitively, not in my records except pretty vaguely, but clearly by the neurologist) that I had MS. That seemed to be based mainly on my Lhermitte's. No one ever talked about or acknowledged the bilateral facial shocks nor tried in any way to explain them.

I have since been told, essentially, that I'm a hypochondriac. My MRIs show only small, nonspecific spots, i.e., not MS according to the neurologists, although the radiologist says they are consistent with (not specific for) MS. I have had a large variety of weird symptoms (a period of arm incoordination when reaching, various paresthesias, numb or itchy or buzzy areas, etc.) but nothing that shouts MS (except Lhermitte's and, to my mind, the bilateral face shocks), and nothing dramatic except a sudden hearing loss and dizziness.

Everything I have read about TN says that bilateral symptoms--especially in a young patient (I was 42 when it started)--are a red flag for MS.

But, I guess since the shocks are subjective symptoms, in the real world they don't count for anything diagnostically--the doctors just want to ignore them if your MRI doesn't look specific for MS. I don't need treatment for my shocks, they are not a problem for me, but I hope your pain is being treated properly.

Best of luck to you,

Nancy T.