trigeminal neuralgia

Every day of my life lately has been filled with bouts of pain in the left side of my face. Absolute torture! Seems no matter what I do pain still there. Pain shoots. Stops for second or two then shoots. all day, all night! Nothing can do about it except suffer.

It is driving me crazy!!! Why would it last so long? If  could go without eating or talking or smiling or anything it wouldn't start.

I see Neuro Wednesday hopefully he will help me!!!!

[angie99]

Hello, sorry your TN is soo bad, I read some of your other post, your appt wed. is it in memphis?
I hope you get some help. Have they ever found anything on your mri's..???

I was dx at end of april with TN, right now it is not bothering me,  but it was not real severe anyway, hope it does not get worse later...have you ever had any severe scalp tenderness, like you cant brush or wash your hair?? or shocks of pain on your head like the ones on your face?

angie

[AmishErin]

Quite a few years ago my neuro was trying to handle some of my MS symproms without putting me on too many more drugs... I was on solumedrol 3x every2 weeks and had been for going on a year had lost my hair, was breaking bones, was taking 16 different RX's and losing weight and unable to sleep.... he said to me well Utah does not have Medical Majiuana but for   trigeminal neuralgia I can put you on Marinol the side effects   will help you ... I asked him what it was and he told me I was just glad I wasn't presenting for it...Ask your Dr

Hugs

Erin

[essdipity]

Quix has suffered terribly from TN, but also had great results with prescription meds. I'm sure if she sees this she'll respond, but if not, try PMing her.

ess

[emschick]

Thanks! I will use this advise wisely. Ya'll are great! I am from the south ya know.

And yes I am traveling to Memphis TN spending the night Tuesday night with a friend that lives in Southhaven MS which is only about 15- 20 min from Memphis. Wish me luck.

[emschick]

Oh yeah! I had a car accident on 6-2-08 and was ejected from my vehicle. So on top of the trigeminal neuralgia I have broadbased bulge to c4-c5 and bulge with annular tear to L4-L5 and bulging L6-S1. I wonder if the c-spine could contribute to some of the pain in the facial nerve

Anyone know?

[Quixotic1]

Wow, sorry, I missed this.  It is a favorite topic of mine after learning a great deal about it when I had it.  Trigeminal Neuralgia is literally a "pain syndrome of the Trigeminal nerve.  This nerve is the 5th Cranial Nerve and supplies most of the sensation to the face.  There is one on both sides.

The Cranial Nerves are nerves that emerge directly out of the brain or brainstem.  They look just like peripheral nerves, but because they originate in the CNS, they are part of the central system.

TN is considered one of the most intolerable of all pains.  Its nickname is "The Suicide Pain."  When it occurs in the normal population it is usually due to a compression of the nerve by a blood vessel.  That is why there are surgical procedures to relieve the pressure.  But, in MS the cause is an attack of demyelination somewhere along the nerve or at its root in the brainstem.  It is 300 times more common in people with MS, thaqn in the general population.  Occsaionally TN can occur bilaterally.  In this case it isw almost always due to MS.  However, when an MSer has bilateral TN it doesn't hurt on both sides at the same time.

Classically it has been believed that TN only occurs as you described it: in shooting or lancinating bursts of excrutiating pain.  The Trigeminal Nerve has three branches.  V1 supplies sensory info from around the eyes and higher on the face.  This is not commonly involved in TN.  V2 supplies the side of the face from the ear to below the eye, the side of the nose, the upper lip, upper gums and teeth.  V3 is the most common site of TN and the pain runs along the jaw, lower lip, lower gums and teeth.  Sometimes V2 and V3 are both affected.

TN often has a specific trigger which sets the pain off.  This can be stimtulation of the lip, nostril, cheek, opr by activities such as chewing, or swallowing.  Some people are so sensitive  that a breeze across the face can set it off.

However, recently reseachers in the field have described a common variation of the classical TN, which is called Atypical TN.  In this the person may or may not have the typical shooting pains, but they have an ongoing, steady pain in the area of the affected branch of the nerve.  By definition this pain is present the majority of the waking hours.  When I had TN I started with the pain occurring unpredictably when I bit down on a certain molar.  But, after a few months the pain became constant and felt like my lower molars on that side were infected.  I went to the dentist who diagnosed TN when the X-rays were normal.

The firstline drug for treating TN is carbamazepine (the anti-seizure med, Tegretol)  I began to feel some lessening of the pain almost immediately.  By the time I had moved up to 900mg per day the pain was under very good control.  If Tegretol doesn't work, then others can be tried.

[Quixotic1]

Ooops, I posted accidentally and without editing.  Sorry.

The best site I have found for learning about TN is:

fpa-support.org

They talk about all the types of pain from the Trigeminal Nerve and even have a diagnostic questionaire which will tell you immediately if the pain is indeed TN.  

I doubt if the C-spine injury you sustained is responsible for this, but defintiely ask your neurologist.  I'd would be interested in the answer.

I hope this helped.

Quix

[emschick]

Thanks that is very helpful.

[emschick]

I went on the web-site you suggested and learned that accupunture may be an option. My PCP does accupunture once a week in a clinic. I may see if she will hook me up. Also I don't know if you saw the post where the PCP was sending me to pain management or not.

Any way.... The pain management happens to be epidural treatments where they put you to sleep and all that jazz. I'm not sold on this yet  because if the Gamma Knife or Microvacular decompression is not an option because of the possibility of MS why would the epidural be any different?

Thanks Quix you are the best!!

[cometgirl]

  Just my 2 cents on the subject...

  I was diagnosed with Bilateral TN yesterday.  I had MVD in May 2012 for TN on the right side of my face.  The pain before the surgery was HORRIBLE!!!  I had a lot of relief (almost total relief) from Lyrica.  I had the surgery in an effort to live without all the side effects of the medication that were making life tough.  My surgeon said that the drugs would lose their effectiveness eventually anyway.  I started having pain on the other side (left) of my face shortly after the surgery.   The pain is just as bad but the duration and frequency is much less than the Right side ever was.  

  My surgeon has just referred me to a team of MS experts to be evaluated.  He said, as you have heard, that Bilaterral TN is highly suggestive of MS.  I am currently having my second episode of what seems to be MS. The only tests I've had are MRI's that look clean.  My father has MS as well which only adds to the suspicion.  I've had 2 doctors tell me I had Somatophorm/Conversion disorder one of them even after my MVD had been performed where they found that I had typical TN.  

  My Surgeon, still with the major improvement from MVD on typical TN suspects MS.  I have read as much as I could about the cause of TN in people with and without MS.  I've found information that suggests that even people with MS can have typical TN where a nerve or artery is pressing on the nerve because the Myelin had previously worn away causing the artery to be able to press on the nerve.  It is generally thought that the Artery actually rubbed the Myelin away.  

  This is important to know because people who have MVD who either have been or eventually are diagnosed with MS still have great results with it.  I needed to know this to decide if further testing for MS was the right thing for me and I think based on this information that it is.  

  I share this with you because MVD was life changing for me!  I had the pain for about a week about 5 years ago during a 3 year period that I was dealing with MS like symptoms.   The TN went undiagnosed at the time after trying to find a cause with my dentist.  Last year it came back and went on for a few months while I was thinking it was a tooth until I finally had it pulled after several attempts at a root canal on it.  During and after that I was in horrible pain most of the time with horrible with a horrible ache and would have sharp shooting pain attacks that would last about 2 hours.  It was debilitating!!!  I can't imagine people being denied the relief that MVD brings because the belief that  due to MS it won't help.  The fact is that until they get into the skull to do the surgery most of the time they can't see what's going on as it was in my case.  You can read the results of a study that I found helpful at this link http://www.ncbi.nlm.nih.gov/pubmed/20651626

I found it refreshing that my Neurosurgeon even after discussing the possibility of MS was discussing MVD on the other side of my face.  I don't think most doctors would be open to that.

Again, I'm just learning as I go and I'm not an expert but when you are in the kind of pain TN causes it's nice to have some hope for help and I wanted to share what I've found.

Good Luck!  I hope you find relief from your pain soon.