What Sort of Face Pain is this?

General General TN & GPN (Old Site)
21

Elstep, Temporal Arteritis seems to track pretty well as an explanation for several of the symptoms you report. Especially since you were tapering down from higher doses of the drug used to treat your face pain, it doesn't make sense that TN medication itself would be a primary cause of such symptoms. I have heard of night sweats and fevers in some patients who also have neurological pain, but have never heard of an unambiguous cause for such inflammation that could be traced to nerve damage as such. Doesn't mean it couldn't happen -- just that I haven't seen that connection in any consistent way in the past 15 years of talking with patients.

Another issue that should be positively evaluated for and eliminated is medication allergy of some sort. Headache is a common co-morbid problem in trigeminal pain patients, though not always linked in a cause-effect relationship.

Dean, with a separation of hours between your workout and the flare of TN, I don't see a direct connection that would have anything to do with your blood pressure. One way to get better insight into such connections could be keeping a daily activity and pain diary.

Regards both,

Red

22

Thanks red I will… Dean

Richard A. “Red” Lawhern said:

Elstep, Temporal Arteritis seems to track pretty well as an explanation for several of the symptoms you report. Especially since you were tapering down from higher doses of the drug used to treat your face pain, it doesn’t make sense that TN medication itself would be a primary cause of such symptoms. I have heard of night sweats and fevers in some patients who also have neurological pain, but have never heard of an unambiguous cause for such inflammation that could be traced to nerve damage as such. Doesn’t mean it couldn’t happen – just that I haven’t seen that connection in any consistent way in the past 15 years of talking with patients.

Another issue that should be positively evaluated for and eliminated is medication allergy of some sort. Headache is a common co-morbid problem in trigeminal pain patients, though not always linked in a cause-effect relationship.

Dean, with a separation of hours between your workout and the flare of TN, I don’t see a direct connection that would have anything to do with your blood pressure. One way to get better insight into such connections could be keeping a daily activity and pain diary.

Regards both,

Red

23

Thanks red, when I sleep at nite no pain, but when I get up and go outside the pain starts in my teeth on the left side, it’s a dull and painful, I hope I get the right Meds soon, thanks again… Dean

dean643 said:

Thanks red I will… Dean

Richard A. “Red” Lawhern said:

Elstep, Temporal Arteritis seems to track pretty well as an explanation for several of the symptoms you report. Especially since you were tapering down from higher doses of the drug used to treat your face pain, it doesn’t make sense that TN medication itself would be a primary cause of such symptoms. I have heard of night sweats and fevers in some patients who also have neurological pain, but have never heard of an unambiguous cause for such inflammation that could be traced to nerve damage as such. Doesn’t mean it couldn’t happen – just that I haven’t seen that connection in any consistent way in the past 15 years of talking with patients.

Another issue that should be positively evaluated for and eliminated is medication allergy of some sort. Headache is a common co-morbid problem in trigeminal pain patients, though not always linked in a cause-effect relationship.

Dean, with a separation of hours between your workout and the flare of TN, I don’t see a direct connection that would have anything to do with your blood pressure. One way to get better insight into such connections could be keeping a daily activity and pain diary.

Regards both,

Red

24

Red, If I did have grumbling Temporal Arterites without knowing it, would it have made my nerve more sensitive to the facile trauma I then received?

25

Red thanks for your response. Because I developed both conditions (one was due to trauma and then the TA followed), you would think they were linked in someway? I have not met anyone with TA who has TN and visa versa, only myself, I still think there must be a link?

26

There's an old and well tried rule in science, Elstep: Correlation is not Cause. Just because one thing happens before another, doesn't mean that the first event is a cause of the second. In any event, the emphasis needs to be on correction and cure, even though we don't ignore cause, of course.

Regards, Red

27




Point taken Red. Am I correct in thinking that the reason why TN comes back is because there is normally a problem with a blood vessel touching a nerve? Or if it is trauma related, its because the nerve has been badly damaged? In my case the trauma caused an episode of TN seven months ago I now have mild TNP, and no longer taking TN medication. I am hoping that the trauma (non dental) triggered off the TN attack, and now my nerve is healing itself and there may not be any more TN1 attacks. Is it possible the nerve can heal itself and if it is successful in doing so that there may be no further attacks of TN1?

28

Also Red, Am I correct in thinking that if the TN continued this would be because the nerve had not healed successfully and this would cause the axons of the nerve to misfire? Hence the TN pain.

29

Elstep, you're asking questions that might not have precise answers... or perhaps the answers you want. I'd like to be able to tell you that your trigeminal nerve will heal and you'll never have pain again. But such a position isn't validated by experience in the great majority of face pain patients.

When the nerve is damaged, it may indeed heal -- but healing rather rarely creates exactly the same conditions or function as existed prior to the injury. In many cases when the trigeminal nerve is deliberately "injured" by using RF Rhiozotomy to create a controlled lesion on it, it is the healing process itself which appears to cause the pain to return -- not a recurrence of compression on the nerve by a blood vessel, since any existing compression isn't corrected by Rhizotomy in the first place.

IF (and this is not a small "if"), you're dealing almost entirely with Type I (Typical) TN and an MVD is successful in decompressing the nerve, it is possible that you could be pain free for longer than 12 years. About 70% of all Type I TN patients who are good candidates for surgery and who receive MVD will experience this persistent relief.

But this happy outcome is not the result for all facial pain patients, particularly not for those in whom the first emergence of pain is associated with blunt force trauma, root canal, other dental work, or TMJ issues. When pain is attributable to discrete mechanical or chemical (toxicity) damage, a much wider range of outcomes is observed and a lot of that range involves periodic pain for the rest of your life. In these cases, the treatments most likely to be effective and NOT damaging are medication-based, not surgical.

I hate to rain on your parade, Elstep. But from what you have written, it would appear likely that you may deal with some type of pain for a very long time -- perhaps in occasional incidents, or perhaps in more chronic conditions. Nobody can predict with confidence when or how the pain monster is going to come at you. If you get pie-faced lucky, you could even have remissions that last years. But it doesn't seem prudent or smart to set up your life under an assumption that you'll never have pain of this type again, or the life limitations that can go with the pain.

"One day at a time" is more than a slogan. For face pain patients, it is a central reality. Enjoy the life you have, and do as much as you can to live it well, positively, and with integrity and caring for others.

Go in Peace and Power

Red

30

In that case Red would you suggest going back onto the TN medication now? I was advised just to go on to it for 6 weeks and if the pain was under control come off it. If I do go back on it, do I then stay on it the rest of my life?

31

Also Red would I then go back on the carbamazepine which worked well for me when I had the TN attack, and how would I know how much to take as I am not having an attack? Previously I started at 200 increased to 600mgs and then decreased back to 100mgs.

Originally I planned to wait until I had a further attack before going back on the carbamazepine as I was worried my body would become accustomed to the medication and no longer work if and when an attack began.

32

On prescription medication issues of this sort, Elstep, you need to be advised by a licensed physician. If your neurologist told you to taper off medication when you don't need it, then I can only concur. I certainly don't think that approach will cause you harm if you're presently not in severe pain.

Regards and best.

33

This plan was advised by my GP. I am awaiting to see an neurologist, and I will see what he advises. I will also ask if I can have the MRI that you advised,but i will be surprised if it is agreed as I am no longer in pain.

34

Red, the TN 1 and 2 did not start in my family member's case until her nose was "rebroken"to straighten it following it being broken in an accident. She is now on Lyrica and Lamictal (Tegretol didn't work) but there is a lot of breakthrough pain. The local neurosurgeon says he "might" see a thickening of the nerve on the MRI and recommends an MVD saying after that he can follow up with other procedures (presumably Gamma Knife). A second opinion doc said if nothing could be seen on the MRI he would do an MRA. But if nothing showed on either he would not "put her through" the MVD but look for other solutions. We appreciate your thoughts.

Richard A. "Red" Lawhern said:

If you had discrete trauma to the face, then many neurologist would call the symptoms you describe "symptomatic trigeminal neuropathy" . The tingling and aching throughout our face seems to have elements in common with a symptom commonly called "parasthesia". It can be thought of as a sort of lingering consequence of the original trauma, due to nerve damage. As far as I know, nobody can tell you at this stage whether these symptoms will develop further or recede over time. TN and ATN in the early stages are tricky that way, and sometimes display remissions of months or even years before coming back at you again.

If the ache develops further to a level that becomes seriously bothering, then I'd suggest that you gain referral to a neurologist for complete workup and a pain management plan.

Go in Peace and Power

Red Lawhern, Ph.D.,

Resident Research Analyst, LwTN

35

Surgery on the nose may have caused neuropathy in the periphery of one branch of the nerve, but I wouldn't expect the whole face to light up with flares. My intuition is that the neurosurgeon is fishing in the dark. A pertinent question to ask him is whether he has EVER had success in correcting an iatrogenic neuropathy in a patient who has your relative's medical history. I suspect he will dodge the question.

FYI, I generally recommend against Gamma Knife because it has such a poor record of success and persistence even in the easiest of cases (Type I or "Classic" TN). Initial success rates are in the range of 70-85% and about 50% of patients who have a Gamma Knife have pain recurrence within three years.

Though I am not a physician, from the thousands of people I've talked with across the Net, my instinct again would be to seek medication solutions, possibly concentrating on the class of meds called Tricyclic Antidepressants. Another med to be tried may be Oxcarbamazepine (Trileptal), which is generally better tolerated than Tegretol. Opioids can also have a reasonable role in neuropathic pain, and are broadly considered to be within the bounds of accepted medical practice.

Regards and Best,

Red

36

Red we are with a reputable & kind neurologist but not sure if he has tn specialty, much less TN II, V 1, which we understand to be the most rare, plus caused by trauma. Do u know of a neuro in CO who specializes? My daughter is ready to go with MVD but we both know it won’t be the final answer.

37

Jeanne, I'm sorry but I'm not personally familiar with specialists in Colorado. However, the "Find a Doctor" listing here on Living with TN lists the following physicians whom you may wish to contact for information:

Colorado

Fort Collins

Dr.Sisson

Littleton:

South Denver Neuro:

Dr. Adair Prall

www.southdenverneuro.com

University of Colorado (Boulder?)

Dr. Breeze

I've also checked the doctor listings at the TN Association and found nobody there in your state. However they also have local support groups that you can contact, to see if anyone can provide a referral. I will later today put out an email broadcast to Living With TN members in your state, to see what else I can turn up.

Colorado Springs

 Contact for group meeting schedule:

Sharon Jones

■■■■■■■■■■■■■■■■■■■■

719-■■■■■■■■
Denver Contact for group meeting schedule:

Don Martinez

(303) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■

Lakewood Telephone support:

Elizabeth Kristel

(303) ■■■■■■■■

Regards and best,

Red