Trigeminal Neuralgia Treatment

[michelleric]

I am on day 2 of terrible TN pain which has become excruciating at this point. Up all night in tears, but trying not to cry, makes pain worse. Neuro calls it Atypical TN. What is that? Whats the difference between Typical and Atypical TN?

Neuro wants to refer me to pain management, which she has mentioned in the past to me. I have never been willing, but at this point am going to make an appt. I cant continue with this. I have had this many years, probably near 8 years, but it has been progressing and now I think it is more frequent than it has ever been. The pain has also intensified in the past couple years, and now it is just unbearable.

The doc is an anesthesiologist and apparently can do some type of nerve block. I am wondering if anyone here has ever had this done, and if so, did it help?

I might be getting ahead of myself with the question, seeing as I haven't seen the doc yet, but need to know there is relief in sight,

Neuro recommend Solu-medrol again, I refused. I had it done Sept, then Dec. and really don't want it again so soon after.

Thanks   ~ Michelle

[NGKII]

If you have TN have you notice an increase in your blood pressure prior to or during an attack?  Have you started or increased your high blood pressure medicine while experiencing TN attacks?  If so, did this have any impact on the TN attacks?  Did they go away, become less acute, or get worse?  I have TN and am experiencing significant attacks and have a theory as to why they occur in some "Atypical" cases such as mine and plan to find out if my theory is valid.  Thanks!

[michelleric]

I have been taking Trileptal, 300 mg, BID, for about a year. Started @ 150 mg.

Neuro put me on Trileptal instead of Tegretol, due to lower side effects. Hopefully, this pain doc might be able to change some meds, and help me.

I am calling when they open in 10 minutes and see if there is any way they can get me in today.  This is just rediculous. My goal is to shower today, since it has been more then 3 days of the same clothes...yuck. I will try to keep my head of out the water to the best of my ability.

Thanks for all the responses.

I cant tough my scalp or face from the burning. Cant put an ice pack near me, but the main problem is the zapping near my ear. Makes me wince all day and night.

[Quixotic1]

Firstline med for TN is carbamazepine - Tegretol.  But, they use all sorts of neuropathic pain meds.  I would ask for carbamazepine, even on top of whatever else you are taking.  Just go up slowly and monitor liver enzymes.

Quix

[mistylee]

Hi michelleric,
sorry you are having TN . I too am suffering this at the moment but my pain comes and goes so I get relief in between zaps and aching.

I am not taking anything at the moment cos I'm a little med phobic but if it gets worse I will be giving in.
Hope you get some relief soon. Sending hugs to you..

Mistylee

[amers789]

Hi Michelle, I am so sorry you are having such a hard time right now with your TN. I too have TN, mine is the atypical burning, aching spams off and on all day. I am on lamictal  an anti-seizure med which helps the nerve pain but to be honest there is not a  whole lot they can do. I use ice packs off and on all day it helps with the burning sensation, I also use like bengay type spray, it is a counter irritant so it is a different kind of burning but it is a good distraction. Last I carry a spray bottle with water to cool my face down when I don't have access to ice. I saw a neuro surgeon after two years of suffering but he says because mine is bilateral there is no way it could be a nerve compression so nothing to do really. I take pain medication but more for the neck and shoulder spasms that come with holding ice and just tensing up off and on with pain. I don't know if you have the shock like pain or the atypical burning but if you have the burning type you can try the suggestions above. I hope your pain specialist can help, I go to one, he has tried a few things, but no luck yet but there is always hope, always..Take care and hang in there...:) God Bless

[michelleric]

Thanks for all the good points here. I am curious as to what this doc is going to recommend. I was told to bring all my MRI's and any info I have.

Right, what exactly could they operate on if it is MS related TN. I am assuming that is what it is. I am willing to do whatever he recommends at this point, but have a sinking feeling he will say nothing can be done.

I am a bit on the down side, so not feeling too optimistic at the moment.  Hopefully this pain will subside soon, and I can try to be more positive.

[Quixotic1]

I take back my comment about odds.  I am sooooooooooooo bad at stats.

The chance that a person over 50 and with MS will have regular, compression-caused TN would be the same - 1 in 10,000.

Please, can one of our scientist/researchers look at this for accuracy?

Bio?

Quix

[Quixotic1]

fav TN site

fpa_support.org

Q

[Quixotic1]

Quickie here.

Regular TN is caused by pressure on the Trigeminal nerve - usually by a blood vessel - at some point after it has left the brainstem.

In MS, TN is caused by a demyelinating lesion somewhere along the course of the entire Trigeminal nerve - often in the brainstem or shortly after it has left the brainstem.  It may also be well-within the brainstem - the pons - in what is called the sensory nucleus which runs all the way down into the spinal cord to the 2nd cervical vertabral level.

Thus, surgery on TN from MS is ridiculous.  Of course, a person with MS "could" get the regular kind of TN, but the odds against that are pretty high.

About 1 in 10,000 people will suffer from TN, but almost 1 in 3 people with MS with suffer TN from their MS.

Quix

[Lulu54]

Ess makes a good point and I thought of that after I posted the links but didn't followup.  Is MS cause TN the same as other TN?  Good question for someone to ask.

Sorry the thought of having holes drilled doesn't sound better than living with this pain!  LOL

feel better,
L

[essdipity]

From what I've read, TN is usually caused by a blood vessel impinging on the nerve. That slowly demyelinates the nerve at that point. Surgery that moves the vessel can relieve the condition.

That all makes sense. But what if it's MS demyelination? There's nothing to move out of the way.

I'll have to read more on TN surgery to understand anything at all.

ess

[michelleric]

That was a great website, thanks. Very informative.

[michelleric]

My appt is Tuesday with the pain management doc. I am also very tired of rude and nasty people who are supposed to HELP make the appts, not be nasty to the patients like myself. Perhaps it is the pain, but it seems most people that work there are hmm, mean for a better word I wont repeat.

Lu, I watched the video. Was ok with it, until he said he drills a hole in her skull the size of a quarter, yikes.

Ren, she called me in Vicodin, lots of it, but it really doesn't touch the pain, just makes me a bit out of it. I will take another soon, and hopefully try to sleep a bit.

Thanks ladies...

[rendean]

I'm sorry the doc didn't call in anything for you yesterday. Simply referring you out with out some pain relief is cruel.

My TN has been called atypical face pain as well as atypical TN. I never got a good explanation as to why it was atypical. It comes on in intervals, follows the trigimenal nerve but is constant. From what I read the atypical descriptor is used when the pain is constant. I found a good article on the difference and the the treatment. Remember to take out the spaces:

http: //www. umanitoba. ca/cranial_nerves/ trigeminal_neuralgia/ manuscript/types. html

I do hope it passes soon. I know personally how much it hurts.

Hugs,
Ren

[Lulu54]

My memory failed me again .....

It wasn't Sound Medicine - it was a story on Morning Edition.


Here is the link - I might be helpful for your DH to also listen to this story.

http://www.npr.org/templates/story/story.php?storyId=120140173

[Lulu54]

Oh Michelle, I am so sorry you continue to suffer with this problem of TN.  Maybe it comes from living in Ohio?  Sounds like a good excuse to move someplace that doesn't have all this snow.  LOL

Sound Medicine, an NPR program that I try tto listen to weekly, had a story on TN a few weeks ago.  They have tremendous luck with surgery to stop the pain for many people.  It has to do with relieving the pressure on a particular never, if I remember right.  I will try to find that episode and send you the link.

They called TN the Su i cide Headache, because so many people wish they were d ead because it is so excruciatingly painful.

Please see the pain doctor ASAP and listen to all of your options of how to treat this.

lots of gentle hugs to you,
Lu

[essdipity]

Hi Michelle. I'm so sorry your pain has gotten to this point. I too have wondered about typical vs. atypical TN, and have googled this a few times, but without a lot of clarification. Different sites give different explanations.

Nevertheless, terrible pain is terrible pain (which I'm fortunate not to have). I think you should see the pain management doc ASAP to explore all your options.

I do hope that others here can help and that you soon get relief.

Many hugs,
ess