Tn1 vs tn2 treatment

General General TN & GPN (Old Site)
1

Maybe this has been answered here before, but the one thing about this disorder that stumps me is..If they find a reason for the tn, nerve damage etc or nothing at all, why is it easier to fix the tn1 and not the other. I was told I could have rhizotomy for tn1 but no promise it would fix the a-typical. What is the reason for that, to me and my way of thinking is that it is the same nerve so therefore would be repairable. Can someone either answer this for me or send me in the right direction for research.

Thanks, Wendy

2

I’d like to hear Red’s response. since I have Type 2 and awaiting dr appt, that would be good for me to know.

3

From the 17 years of reading I've done in this area of medical literature, the following are my impressions. I do not represent them as "facts", though I have a high degree of confidence that they are plausible and accurate to what I have observed and read.

It appears that with TN-1 and TN-2 we are dealing with at least two different mechanisms of nerve damage in the trigeminal system. And both of the two appear to have overlaps with a third class of mechanisms -- that of neuropathic injury.

TN-1 is characterized by a physical point or points of discrete compromise within the distribution of the trigeminal nerve, involving compressions and stimulation of the nerve by blood vessels. I use the word "compromise" to indicate that the function of the nerve is affected in a temporary way, causing the lightning-strike electrical shock pulses of pain which TN-1 patients experience. It is probably inaccurate to use the term "injury" for this category of pain, given that it frequently responds almost instantaneously to MVD surgery.

TN-2, however seems to have a more systemic or distributed nature in the trigeminal system. The damage mechanism -- whatever it is -- is less likely to be associated with a discrete vascular compression. TN-2 is also less likely to respond well to Gamma Knife, Rhizotomy, or other destructive surgical procedures which attempt to block pain by reducing the ability of the nerve to transmit information from the peripheries to the central nervous system. Something "throughout" the trigeminal system or one of its branches, seems to be operating to generate spontaneous pain signals that continue even after administration of Rhizotomy or GK.

Both "TN-1" and "TN-2" are thought to be "idiopathic". That is, they very often emerge for no traceable reason and without association to a discrete event. The medical entity called "trigeminal neuropathic pain" appears to be quite different from either TN-1 or TN-2, though its symptoms and treatments can overlap those of TN-2 and less often TN-1. Neuropathy IS associated with discrete medical events and injuries, or sometimes with disease processes like Diabetes. These include mechanical insult in whiplash injury, root canal, sinus surgery, blows to the face, and improper administration of injected anesthetics in various dental procedures. Brain Stem compression in Chiari Malformation can also cause trigeminal and other neuropathic pain.

My present reading of medical literature indicates that the medical (medication) and surgical solutions for TN-1 are largely discrete from those which apply in either TN-2 or Trigeminal Neuropathic Pain. For the former, many patients find relief with anti-convulsive meds like Tegretol, Trileptal, or Neurontin. For the latter two problems, relief is more often found with one of the tricyclic antidepressant drugs, possibly in combination with an anti-convulsive, muscle relaxant (Flexeril), mild tranquilizer (Valium), stereoid (cortisone), Fibromyalgia medication (Lyrica), opioid (Dilaudid, others) or opioid agonist (Methadone).

Note that I have not used the term "Atypical Facial Pain" in any of this discussion. The term implies a psychogenic or psycho-somatic origin for nerve pain. I regard that implication as a damned lie and delusional thinking on the part of practitioners who have a financial self-interest in treating this fictional disorder. At a less confrontational level, I am also concerned that dental practitioners too often err on the side of diagnosing a very imprecisely defined " TMJ Disorder" (which they can treat) when they should be more attentive to the possibility of pain having neurological origins (which they can't, and for which they typically have very little in-depth training).

Please feel free to follow up with questions or references for exploration.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

4

thanks for the thorough response, Red. i know crashgirl aked the question, but it will really help me when I have my first dr appt (at least, the first with a dr hat actually knows something about TN). thx.

5

Thanks Red, that cleared up alot, the only question I have is what are tricyclic drugs?

Wendy

6

Tricyclic Antidepressants are drugs which combine three chemical mechanisms for managing depression. They have cross-action against neuropathic pain as well, usually at doses which are lower than commonly used against depression itself. They include Amitriptyline and Nortriptyline, among possibly 10 or 12 others.

I hope this is useful, Crash Girl...

Regards, Red

7

red, about 4 mos ago i awoke to a tingle on the left side of face…
I am taking 200 cabamapezine and my attacks are less but I have a constant numbness on my cheek near lower jaw. Just wondering is I have TN1 or 2, Should I consider Mvd surgery? I am 62 and use to be healthy… Btw, when i play tennis, it gets worse. john R… thank u



Richard A. “Red” Lawhern said:

Tricyclic Antidepressants are drugs which combine three chemical mechanisms for managing depression. They have cross-action against neuropathic pain as well, usually at doses which are lower than commonly used against depression itself. They include Amitriptyline and Nortriptyline, among possibly 10 or 12 others.

I hope this is useful, Crash Girl…

Regards, Red

8

Numbness can be a precursor to either broad category of TN face pain. It's sometimes called "parasthesia", particularly if mixed with tingling. You can expect that aerobic exercise is likely to increase your facial symptoms due to increased blood pressure. I think you will likely be advised to raise your dosage of Carbamazepine before surgery is considered.

Regards, Red

9

Thanks Red, exercise and tennis are paramount to a healthy life, if I keep pumping up the drugs they make me feel pretty bad. I have read that over 50% of those on drugs eventually get some sort of surgery. MVR appears to be the surgery of choice for TN1… if it doesnt work, then gamma knife next to deaden the nerve… I am not enjoying my current lifestyle so Id rather take the knife approach. Why wait for the drugs to lose effect and suffer. I have read that people are waiting for the surgery and begging their surgeons to expedite the procedure, I am extremely worried that I will become desperate like those, so lets get this show on the road now… This is one horrible situation for some many like myself, I am totally amazed thwt I never heard of this unti I got it. Thanks for your reply. John

10

FYI, about 50% of all initially successful Gamma Knife operations for Type 1 TN (~85% of patients) will experience pain recurrence within three years. Success rates are lower in Type 2 ("atypical" or "trigeminal neuropathic" pain). Most Gamma Knife centers and practitioners don't tell you that, but it's documented in the practice standard of the International Radio Surgery Association. There is an unkind reality that is troubling to many chronic face pain patients: pain will be a background or foreground issue for the rest of your life, John, even if your operation is fully successful. Pain recurs in MVD patients too, though over a longer period (on the order of 50% are pain free beyond 12 to 15 years). So it is wise to realize that you need to cultivate emotional resilience and a capacity to roll with unpredictable changes.

Go in Peace and Power

Red

11


Thanks for underlining that. I really do believe that many of us could benefit from a visit to psychologist too, not only the doctor. If you feel you are despairing, then it is definitely a good help!

Richard A. "Red" Lawhern said:

So it is wise to realize that you need to cultivate emotional resilience and a capacity to roll with unpredictable changes.

12

And in relation to the difference between TN 1 & 2: I have a herpes simplex induced TN that was Tn 1 for 12 years, steadily progressing from 1 to 6 branches, brefore I added on the ATN. No compression or any other mechanical' error in my case. And currently I am in the same pickle as you, crashgirl.

13

how would i know if my tn1 is from herpes simplex, nobody ever mentioned this to me… thanx…



Tineline said:

And in relation to the difference between TN 1 & 2: I have a herpes simplex induced TN that was Tn 1 for 12 years, steadily progressing from 1 to 6 branches, brefore I added on the ATN. No compression or any other mechanical’ error in my case. And currently I am in the same pickle as you, crashgirl.

14

Although there is wide spread speculation among patients that Herpes Simplex may be implicated in some cases of TN, so far medical experts haven't established a step-by-step understanding of the mechanisms that may be involved. So there is no reliable way to know whether Herpes Simplex may have been involved in an individual case.

Regards, Red

15

Red, you’re awesome in these matters… Today I played Tennis, still maintaining 200 mg cabamapezine, seems when i up my dosage to 300 mg
I dont achieve any better results. For the most part, my cheek is somewhat numb most of the day with periods of increased tingles when I get uptight or deal with comcast… I am in disbelief how so many folks dont know anything about this bad disease, including most primary doctors. In fact my Neurolgist put me on cymbalta , that did nothing but keep me up at night. After joining this group I told my primary to give me Cabamapezime and he glady gave me a scrip… much better results than Cymbalta…I no longer visit my neurolgist and I am self winging this… If Caba stops working I will go for the surgery… john

16

There may not be a reliable research way, but I got TN on my first or second breakout of cold sores, and the first few years I would only have attacks when I had a cold sore. Because it is of course herpes zoster that classically induces TN (but then seemingly temporarily), we took a sample from my cold sore, which was classic herpes simplex. No neurologist or any other doctor has ever questioned this connection, and I have been on daily antivirals for almost 10 years, because the virus is very active in me.

It ssems like herpes viruses have som degree of similarity, and I never saw a reason to question this. Also, my first cold sore was likely triggered by kids with chicken pox, which is related to the cold sore virus somehow.Because my fun is viral, I also get fun neuro symptoms other places, like chest and armpits. I think herpes simplex is a rare inducer than the other ones, but my sister has it too, and only with cold sores. She is a doctor, as well. ;

17

Hi Red -

I’m not sure if I’m asking this in the correct section, but I’m wondering if you’ve seen many situations where someone has only type 2 pain, but also has a very clear compression showing up on an MRI. This is my current situation and to complicate things even more, I’ve also had several root canals in the area where the pain is concentrated.

Any insight wouldn’t be greatly appreciated. thanks so much.



Richard A. "Red" Lawhern said:

From the 17 years of reading I've done in this area of medical literature, the following are my impressions. I do not represent them as "facts", though I have a high degree of confidence that they are plausible and accurate to what I have observed and read.

It appears that with TN-1 and TN-2 we are dealing with at least two different mechanisms of nerve damage in the trigeminal system. And both of the two appear to have overlaps with a third class of mechanisms -- that of neuropathic injury.

TN-1 is characterized by a physical point or points of discrete compromise within the distribution of the trigeminal nerve, involving compressions and stimulation of the nerve by blood vessels. I use the word "compromise" to indicate that the function of the nerve is affected in a temporary way, causing the lightning-strike electrical shock pulses of pain which TN-1 patients experience. It is probably inaccurate to use the term "injury" for this category of pain, given that it frequently responds almost instantaneously to MVD surgery.

TN-2, however seems to have a more systemic or distributed nature in the trigeminal system. The damage mechanism -- whatever it is -- is less likely to be associated with a discrete vascular compression. TN-2 is also less likely to respond well to Gamma Knife, Rhizotomy, or other destructive surgical procedures which attempt to block pain by reducing the ability of the nerve to transmit information from the peripheries to the central nervous system. Something "throughout" the trigeminal system or one of its branches, seems to be operating to generate spontaneous pain signals that continue even after administration of Rhizotomy or GK.

Both "TN-1" and "TN-2" are thought to be "idiopathic". That is, they very often emerge for no traceable reason and without association to a discrete event. The medical entity called "trigeminal neuropathic pain" appears to be quite different from either TN-1 or TN-2, though its symptoms and treatments can overlap those of TN-2 and less often TN-1. Neuropathy IS associated with discrete medical events and injuries, or sometimes with disease processes like Diabetes. These include mechanical insult in whiplash injury, root canal, sinus surgery, blows to the face, and improper administration of injected anesthetics in various dental procedures. Brain Stem compression in Chiari Malformation can also cause trigeminal and other neuropathic pain.

My present reading of medical literature indicates that the medical (medication) and surgical solutions for TN-1 are largely discrete from those which apply in either TN-2 or Trigeminal Neuropathic Pain. For the former, many patients find relief with anti-convulsive meds like Tegretol, Trileptal, or Neurontin. For the latter two problems, relief is more often found with one of the tricyclic antidepressant drugs, possibly in combination with an anti-convulsive, muscle relaxant (Flexeril), mild tranquilizer (Valium), stereoid (cortisone), Fibromyalgia medication (Lyrica), opioid (Dilaudid, others) or opioid agonist (Methadone).

Note that I have not used the term "Atypical Facial Pain" in any of this discussion. The term implies a psychogenic or psycho-somatic origin for nerve pain. I regard that implication as a damned lie and delusional thinking on the part of practitioners who have a financial self-interest in treating this fictional disorder. At a less confrontational level, I am also concerned that dental practitioners too often err on the side of diagnosing a very imprecisely defined " TMJ Disorder" (which they can treat) when they should be more attentive to the possibility of pain having neurological origins (which they can't, and for which they typically have very little in-depth training).

Please feel free to follow up with questions or references for exploration.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

18

Ahope,

Yes, I've talked with other TN-2 patients who also had clear vascular compressions on MRI imagery. One of the complications of chronic face pain is that here is evidence that many more people have compressions versus the fewer who present with face pain -- and nobody is quite sure why some will experience face pain and others won't. If you have never had volleys of electric-shock stabs of pain, then you might not be considered as good a candidate for MVD surgery as someone who has had such volleys.

The fact that root canals have been performed in the area where you experience pain also points to the possibility of some type of trigeminal neuropathy -- conceivably because of over-filling the tooth roots with a substance that has escaped the root into adjacent tissue, causing irritation. Alternately, some patients report TN-2 after experiencing anesthetic injections directly into the Lingual nerve. This connection is not yet accepted as a clear cause-and-effect process in medical literature, and dental specialists understandably deny even the possibility of it.

On balance, my intuition based on 20 years of talking to patients and physicians, is that it's likely that you'll be advised against having MVD, unless all prescription drugs fail to control your pain. However, I must in good conscience remind you that I'm not a medical doctor and you need the advise of someone who is -- and who has extensive experience in treating chronic neurological face pain.

Regards and Best,

Red

19

Hello Red,

This is a most enlightening and scholarly explanation of my TN 2 condition. I will be moving forward with percutaneous balloon compression after hearing my doctor's rational for this treatment choice. Again, most scholarly and well thought out

Richard A. "Red" Lawhern said:

From the 17 years of reading I've done in this area of medical literature, the following are my impressions. I do not represent them as "facts", though I have a high degree of confidence that they are plausible and accurate to what I have observed and read.

It appears that with TN-1 and TN-2 we are dealing with at least two different mechanisms of nerve damage in the trigeminal system. And both of the two appear to have overlaps with a third class of mechanisms -- that of neuropathic injury.

TN-1 is characterized by a physical point or points of discrete compromise within the distribution of the trigeminal nerve, involving compressions and stimulation of the nerve by blood vessels. I use the word "compromise" to indicate that the function of the nerve is affected in a temporary way, causing the lightning-strike electrical shock pulses of pain which TN-1 patients experience. It is probably inaccurate to use the term "injury" for this category of pain, given that it frequently responds almost instantaneously to MVD surgery.

TN-2, however seems to have a more systemic or distributed nature in the trigeminal system. The damage mechanism -- whatever it is -- is less likely to be associated with a discrete vascular compression. TN-2 is also less likely to respond well to Gamma Knife, Rhizotomy, or other destructive surgical procedures which attempt to block pain by reducing the ability of the nerve to transmit information from the peripheries to the central nervous system. Something "throughout" the trigeminal system or one of its branches, seems to be operating to generate spontaneous pain signals that continue even after administration of Rhizotomy or GK.

Both "TN-1" and "TN-2" are thought to be "idiopathic". That is, they very often emerge for no traceable reason and without association to a discrete event. The medical entity called "trigeminal neuropathic pain" appears to be quite different from either TN-1 or TN-2, though its symptoms and treatments can overlap those of TN-2 and less often TN-1. Neuropathy IS associated with discrete medical events and injuries, or sometimes with disease processes like Diabetes. These include mechanical insult in whiplash injury, root canal, sinus surgery, blows to the face, and improper administration of injected anesthetics in various dental procedures. Brain Stem compression in Chiari Malformation can also cause trigeminal and other neuropathic pain.

My present reading of medical literature indicates that the medical (medication) and surgical solutions for TN-1 are largely discrete from those which apply in either TN-2 or Trigeminal Neuropathic Pain. For the former, many patients find relief with anti-convulsive meds like Tegretol, Trileptal, or Neurontin. For the latter two problems, relief is more often found with one of the tricyclic antidepressant drugs, possibly in combination with an anti-convulsive, muscle relaxant (Flexeril), mild tranquilizer (Valium), stereoid (cortisone), Fibromyalgia medication (Lyrica), opioid (Dilaudid, others) or opioid agonist (Methadone).

Note that I have not used the term "Atypical Facial Pain" in any of this discussion. The term implies a psychogenic or psycho-somatic origin for nerve pain. I regard that implication as a damned lie and delusional thinking on the part of practitioners who have a financial self-interest in treating this fictional disorder. At a less confrontational level, I am also concerned that dental practitioners too often err on the side of diagnosing a very imprecisely defined " TMJ Disorder" (which they can treat) when they should be more attentive to the possibility of pain having neurological origins (which they can't, and for which they typically have very little in-depth training).

Please feel free to follow up with questions or references for exploration.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

20

Red -

Thank you so much for your response. Even if it may not be exactly what I wanted to hear (always hard to learn that you’re not a candidate for a potentially life-changing surgery - though I was prepared for that response bc I saw Dr. Jeffrey Brown several months ago and he basically said the same), just knowing that this supportive space is here for people like me to ask questions and share experiences, is so so comforting. Thank you for all that you do to support this community.

Interesting that you mention improperly administered injections, because as I think back through my dental history (it’s a long one and I’m just 33), I do remember one particular injection that was so painful it literally took my breath away and my whole body tingled and I got lightheaded immediately after. It was almost like the metal from the needle sent an electric shock throughout my entire body, radiating from the injection site. No way to know if this was the start of anything because I, unfortunately, cannot remember when this was.



Richard A. "Red" Lawhern said:

Ahope,

Yes, I've talked with other TN-2 patients who also had clear vascular compressions on MRI imagery. One of the complications of chronic face pain is that here is evidence that many more people have compressions versus the fewer who present with face pain -- and nobody is quite sure why some will experience face pain and others won't. If you have never had volleys of electric-shock stabs of pain, then you might not be considered as good a candidate for MVD surgery as someone who has had such volleys.

The fact that root canals have been performed in the area where you experience pain also points to the possibility of some type of trigeminal neuropathy -- conceivably because of over-filling the tooth roots with a substance that has escaped the root into adjacent tissue, causing irritation. Alternately, some patients report TN-2 after experiencing anesthetic injections directly into the Lingual nerve. This connection is not yet accepted as a clear cause-and-effect process in medical literature, and dental specialists understandably deny even the possibility of it.

On balance, my intuition based on 20 years of talking to patients and physicians, is that it's likely that you'll be advised against having MVD, unless all prescription drugs fail to control your pain. However, I must in good conscience remind you that I'm not a medical doctor and you need the advise of someone who is -- and who has extensive experience in treating chronic neurological face pain.

Regards and Best,

Red