MS or something else causing trigeminal neuralgia

I am a 34yr old female who recently developed left sided trigeminal neuralgia (TN).  I was seen by a neurologist who wanted to put me on an antiepileptic drug.  I really don't want to take this drug because of the side effects and have been told by multiple people that these drugs make you into a "zombie" and that is not acceptable for my job.  I got a MRI and it came back "normal."  A few days after my MRI, my TN went away.

One and a half months later, it has come back.  The first week, the symptoms were the same, the second week it worsened with episodes up to 45 minutes to 1 hour.  I have started seeing an acupuntucturist with electrostimulation.  The episodes have lessened in length and intensity.  I have noticed some very mild tingling on my right cheek now, but no pain as I have in my left.  I went back to the neurologist and he says MS can not be ruled out.

So, wouldn't a lesion causing TN show up on the MRI, or it is possible that we caught the MS so early that it has yet to show up on my MRI, or is it most likely that something else is causing the TN?

Also, I have done some reading online about microvascular decompression.  I would like to have this surgery in order to not worry about the TN returning.  It is beginning to greatly impact my life and life activities.  Also, we have been discussing having a baby and I don't want to be on the Tegretol.  My neurologist said that I don't have a tumor compressing my nerve, so that is not the surgical approach they would take.  He is referring me to a surgeon, but I was under the impression that it is my blood vessels that are compressing my nerve and there is a teflon "pillow" that can keep this from happening.  Is this correct and a surgery that would be indicated for my symptoms?

Thanks, stephanie

[jensequitur]

I think it's more likely that it's something else causing the TN.  Sometimes that nerve can be nicked during dental work (novocaine injections, for example) which would cause problems.  Or something in your face could be inflamed, causing pressure on the trigeminal nerve.

Your neurologist is right - MS can not be ruled out at this point.  But without evidence of MS activity on the MRI, there's no point in worrying about it.

As for surgery, I would wait and see how the TN develops.  If your body will heal itself without intervention, I think that would be better overall.

[steph74]

Hi Stephanie,

I'm also a Stephanie, 35 now, but 34 when my trigeminal neuralgia started.  Very strange...  mine also started on the left and eventually also started on the right.  

I saw a neurosurgeon at a major teaching hospital who specializes in TN.  He told me they could do surgery, but he said it's like having a gun with 6 bullets, you want to use them sparingly because, basically, nothing works forever and you want to preserve your options.  He also told me that the chances of having bilateral TN at my age, caused by anything other than MS were "exceedingly slim."  (I have other neuro sx that seem like MS, but no obvious lesions on MRI, hence no dx.)

Because of the risks to a potential baby I also opted not to take tegretol (we have three and no plans for more, but still...).  I'm taking gabapentin (neurontin) and I worked my way up very slowly, from 100 mg at bedtime, to now taking 1800 mg/day (I have to take it in 6 doses because more than 300 at a time makes me dizzy), and I'm definitely not a zombie (NOT an option at my job, or home either!)  Also, I have a friend who takes tegretol for epilepsy and she doesn't have bad reactions and just went off it 2-3 months before getting pregnant each time.  I believe (but double check this) that these drugs clear your system very quickly.

I hate to disagree with Jen, but I've read that TN is not caused by a dental procedure.  It can be caused by lesions in the pons, on the nerve itself, vascular compression, etc.,.

I do hope yours doesn't progress to anything worse.  Unfortunately for me, the motor function of the trigeminal nerve is also being impacted.  I have an action tremor in my jaw and am now having spasticity where I can not fully open my mouth.  :(

Stephanie

[sllowe]

Hi there,

To add onto what was said above, this discussion includes Quix's write up on the cranial nerves and it's fab. Also, EMS Chick has experience with too, so I hope she sees this and adds on more thoughts.

Steph74 - if you've not already read this one, think you will appreciate it with all you have going on w/your TN  

    http://www.medhelp.org/posts/show/476984

Thanks for joining us - see you around,
shell

[Sefton]

Hi I had a dental procedure done 2 years ago, and before that I never suffered with my face. the dentist did a root canal which didn't work, so I went back and he told me I needed an apiceptomy doing, he didn't explain any of the procedure to me just told me to book in, so I did thinking the procedure was simple. I could see in his face he was struggling with it, and when he finished he told me that the top of my nerve was embedded into my sinus so he cut it out, didn't ask for my permission just went ahead with it. I have visited the neuro specialists who have told me that he may have damaged the nerves in my face carrying out this procedure and I now suffer badly. My brain scan shows clear so it's not pressure on my nerves in the brain, I also have a hole on the outside of my nose were he did the procedure from the inside, so I disagree with the fact that dental can't cause it. Sarah      

[steph74]

Hi, Sarah.  This is an old thread.  If you're interested in posting you might want to try starting a new one.

For the record, there are multiple types of facial pain.  TN is one of those and is specific to the trigeminal nerve and can be caused by a lesion in the CNS or compression of the nerve somewhere along it, by a blood vessel or other problem.  Dental problems are separate types of facial pain, though it can sometimes be hard to dx which is which.  It's not clear to me what happened with your dentist, but I don't think what you have would be considered TN in the classic sense, but likely some other sort of facial pain.

Good luck in getting treatment!

[NZer1]

I get left side TN pain, I have a MS dx and probably PP. It has come on over about 3 years. I have had a host of tests, been to the dentist three times lately and been told it is TN after Cat scan and other testing ruled out other possibles. I was on IV steriods for five days which had no effect on the issues I was having trouble with, mainly visual and walking issues.
The one thing that did stop was the TN. The assumption from that was that the TN was more likely MS associated.
I have recently been put on Gabapentin. Started at 100mg three times a day and have had an improvement from suicidal to coping. Have upped to 200mg three times a day and have found a big improvement, although it is day 7 on this dose. I find that as the dose goes up and several days pass my body gets used to the dose, I may have to increase again in time. Slowly ramping up the dose has avoided the zoombie effect for me.
Maybe using the IV steroids indicated a cause for the Doctors?
Good luck with this.