Healthcare Profession understanding of Atypical Trigeminal Neuralgia

1

Hello, again!

Ok, so now that we are over 1,000 strong, I am wondering if anyone has spoken to a healthcare professional, be it a Neurologist, Pain Management Specialist, General Practitioner, etc., anyone in the healthcare profession, who has a good knowledge of the undeniable diagnosis which is Atypical Trigeminal Neuralgia, as per literature on the subject.

Atypical Trigeminal Neuralgia . . . .the triggers are different. Eating, smiling, etc. The symptoms are typically following the pattern of constant aching, crushing, burning, searing, throbbing and sometimes tingling pain in one, two or all three branches of the TN nerve. The pain path is consistent with the Trigeminal Nerve.

As defined by all sources that I have read on the subject, I fit the exact profile of an ATN sufferer!

I was in the Emergency Room at the beginning of March. When released, after reaching Lvl 10 pain, given a 2 mg. shot of Dilaudid and a Fentanyl patch, I was given a print-out. The information on the print-out regarding my diagnosis, "Trigeminal Neuralgia", described the symptoms of a classic Type I, Trigeminal Neuralgia patient, not "Atypical Trigeminal Neuralgia"!

My Neurologist's diagnosis for me is "Atypical Facial Pain". My diagnosis from my pain clinic and General Practitioner, are also of "Trigeminal Neuralgia", although my pain clinic has agreed with me in conversation that I suffer from the "Atypical" kind of "Trigeminal Neuralgia".

I read in various places that ATN patients also suffer from a disorder of the 5th Cranial Nerve, as do patients with Type I, who suffer characteristically from shocking pains which are typically unilateral, and can sometimes put them totally out of commission, yet have periods of remission, and are triggered oftentimes by cold, touch, etc.

I am not dismissing those who have both types of pain. But, they both originate from the same thing, the 5th cranial nerve, correct me if I am wrong, please!

To sum this up, I would really like to know if anyone has received the correct diagnosis of "Atypical Trigeminal Neuralgia" from anyone in the medical profession.

It exists. I see this condition described by patient after patient.

Your responses are greatly appreciated.

As always, wishing informed and compassionate care to all,

Stef

2

Yes I got the correct diagnosis with a full explanation that my nerve is not compressed, but is right beside an enlarged artery that irritates and infames the nerve each time the artery beats against it. There was no surgical treatment for it back then, (15 years) but only meds. Now they can put a silicone disk between the artery and nerve so they don’t touch each other, but I haven’t found anyone in Canada who does the new procedure yet. Acupuncture worked for a couple of years until scar tissue developed from the repeated needle injections.

3

So, Sheila, you are saying that a physician told you that you had, "Atypical Trigeminal Neuralgia"!!! That is epic.

You see, I am finding out that most healthcare professionals throw us in the wastebasket of "Atypical Facial Pain", which is a catch all diagnosis.

I wonder if that is what is happening to me. The MRI of my brain showed "no abnormalities" (some would argue this . . lol)!

I just want to find a Neurologist who knows what Atypical Trigeminal Neuralgia is, that's all. . . .so glad someone out there gets it!!! Wow.

4

my neurosurgeon told me i have Atypical Trigeminal Neuralgia

all the Neurologist before told me that i have Trigeminal Neuralgia

5

Stef I had a Ent Doc Who said I had Tic Deloureux I dint even know what the heck he was talking aboute Im sure I looked at him so silly back they The only thing I could think sound’s french.LOL I Know Now Naturely Trigeminal Neuralagia. 2 Medical doctor’s said Trigeminal Neuralgia. Pain Management calls it TN. My Neurologist said Myofacial pain then switched to ATN Then he said Chronic Pain . And the Last time I seen Him he Said he doesn’t even know. I said I (Idont care what the name was I Just want to get better and find relief. So well they were arguing aboute the name I just want relief. I did not care aboute the name then But how can they treat a pain that has no name or do they just give it a name. For My self I guess It’s like The Neurologist said It’s a hit and miss Lets’s see what work’s and what doesnt . Mean while in lot’s of pain. Shirely

6

Well, see, Shirley, what concerns me, is that "Atypical Facial Pain" , in my mind, would be different than "Atypical Trigeminal Neuralgia". Actually, I saw this mentioned on some website I was reading on the subject.

I think that a lot of ATN patients are treated like regular TN patients, out of incorrect specific diagnosis of being "Atypical", as well. The pain is constant, usually. They assume that it comes and goes. They assume when they read "Trigeminal Neuralgia", sometimes, that it may have a higher success rate to surgery.

I'm like you. I don't care what they call it. But, when I was at the Pain Clinic last time, what they "called" it seemed to make all of the difference.

The treatments for TN vs. ATN symptoms can vary. I do not appreciate that "wastebasket" diagnosis that my Neurologist used, "Atypical Facial Pain". It sounds as if it not specific to the pain syndrome characterized by the pain path following the 5th cranial nerve, which mine is. It is such a loose diagnosis, I am concerned that I will not be treated correctly according to my true condition.

No, I am not arguing about the name. I just think calling Atypical Trigeminal Neuralgia by it's right name, in a diagnosis, can make all the difference in the quality of treatment, in some cases.

I am sorry you are in so much pain today. My pain level is rising as I type. It is time for my meds.

Hugs,

Stef

7

Hi, James!

If was a few days after this post that I actually DID find a doctor who seems to understand ATN for the first time, or the set of characteristics which would define ATN as best we can. I have read case after case after case, which are similar to ours in terms of symptoms. It also fits the definition of ATN wherever you find it described in most places, if you can find it described.

Basically, I think it means that your 5th cranial nerve, the large one with three branches, is acting as if it is inflammed, affecting, one, if not all three branches.

Hallelujuah!! This past Monday, I found a doctor who seemed to understand what I, you and others like us are going through in the form of a Pain Management physician in a small town. (get the impression he has practiced internationally). At any rate, I enjoyed a pain free for the first time in two years. I had some nausea, but they called me some Phenagran. Well, between a bit of nausea and TN pain, I will take a tad of nausea.

Yes, I have heard of people with the diagnosis of "Trigeminal Neuropathy" who won disability cases. That seems to be a golden diagnosis, someone correct me if I am wrong. It has just been my experience, after reading many cases and talking to many patients. "Neuropathic, meaning that "Neuropathy" exists, thus meaning, diseased TN nerve. Right?

Jump in anyone who disagrees and set me straight, as this is the way I am seeing it.

Thanks for your input James, and I concur, except for that "ATN" is a wastebasket term. It does come with a definition, in all of the sources I have read, whereas, "Atypical Facial Pain" is vague.

Thanks, friends! Like Bob said, "we fight a good fight here".

Wishing compassionate and informed care to all,

Stef

8

Stef, I work in the medical industry and I don’t know if it is because I am not feeling great today, or what, but it makes me mad to hear that. Sometimes, don’t you feel like asking, “so what about Type 2 TN”? Would they give someone with Type 2 diabetes a print out on Type 1 diabetes? The problem is the same, pancreas is out of whack, not making insulin, but the treatment is different. It’s so hard when we are feeling so bad to try an address issues like this. I truly believe we need to find someone who will advocate on our behalf when we are out of commission. Whether it be a significant other, parent, child, friend, we need someone who cares enough to question medical care. For me, right now, that would not be my husband. A friend at church told him they have a friend with TN and her doctor suggested she try exercise and now she feels better. So my husband told me this morning I just need to start working out. He has not even read up on this condition. I felt like saying, “you insensitive lout!” but I love him dearly and I know he meant it in a benign way. I am thankful that I have a friend who knows all about TN having suffered from it for a number of years and I walked through some of it with her. I am most grateful for everyone here as well. But I think it would help so much to have a dear one who goes with us, knows enough about TN that can be our advocate when we need it, like you needed it then.

9

The National Pain Foundation has great list of definitions of trigiminal and facial pain. http://www.nationalpainfoundation.org/articles/820/definitions

Barb

10

That website is great...

Stef, it clearly states:

"Atypical facial pain is a confusing term and should never be used to describe patients with trigeminal neuralgia or trigeminal neuropathic pain"

that is straight from the horses mouth... the national Pain Foundation!

11

YES! Exactly! I believe I have read this particular list before. . . .and many ATN patients are being diagnosed as having "Atypical Facial Pain".

I am so glad to have a physician who is more well-versed in current medical terminology!

12

I have lost so much time chasing the silver bullet to cure this condition. I'm willing to go to any lengths to return to work. The pain medication has been of some use but has lossed its effectivness. The symptoms seem to be getting worse. What am I to do???

13

Scott, first of all, have you made your doctor aware that you definitely need to obtain the right level of pain management via medication, so that you may return to work?

Some of us do build a tolerance to certain meds quicker than others.

I am sorry for your frustration, and I understand it!


Scott Leary said:

I have lost so much time chasing the silver bullet to cure this condition. I'm willing to go to any lengths to return to work. The pain medication has been of some use but has lossed its effectivness. The symptoms seem to be getting worse. What am I to do???

14

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

15

Luke said:

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

Thanks Luke, When I first tried to get help from my primery care Ph. He told me I was a malingers. I had to look it up. He went as far to put it into my medical records. I can't express how I felt. I couldn't raise my head off my pillow and he just left me high and dry.

16

It’s Monday, and I’ll be calling my Dr this morning. I had to take some of my old meds just to get me thou the night. I don’t like to mix med without consulting my healthcare pros. I was a nurse and I’ve seen patience go into emotional stoppers. I just hope they don’t leave me waiting until my next apt…

17

If you'll notice my "Featured" discussion, Luke, you'll see that you just hit on it! Many people with "Atypical Trigeminal Neuralgia" are mistakenly diagnosed with "Atypical Facial Pain". As for me, I've heard that there are no studies to prove that there is such a thing as "somatiform facial pain', or "psychogenic facial pain", so there exists a school of thought, on our site, in the "Atypical TN" group that it, perhaps, should not even be a valid diagnosis.

Since it would be pain originating in the Trigeminal Nerve, that would make this form of facial pain "Atypical Trigeminal Neuralgia".



Luke said:

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

18

You know, I was talking to my brother in law last week and he had a doctor who put things on his medical chart that he disagreed with. He made him take them off. You can do the same.

Scott Leary said:


Luke said:

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

Thanks Luke, When I first tried to get help from my primery care Ph. He told me I was a malingers. I had to look it up. He went as far to put it into my medical records. I can't express how I felt. I couldn't raise my head off my pillow and he just left me high and dry.

19

One of the members of the TNA Medical Advisory Board summed up a reaction to the proposed guidelines of the American Psychiatric Association in the pending DSM-5 for so-called "Complex Somatic Symptom Disorder. The quote was: "All facial pain is real. The term "Atypical Facial Pain" must be removed from the medical vocabulary."

Whether other members of the TNA MAB actually do the follow-up and submit their input to APA through their public comments gateway remains to be seen.

For now, my advice to pain patients would be to tell any doctor who uses the term "psychogenic pain" to wash out their mouths with soap! For face pain patients, there is no such thing. I think the jury is still out on whether so-called "hypochondriasis" is a real disorder or not. We have to acknowledge that in very rare cases, doctors see patients who DO seem obsessed with generalized body pain of indeterminate origins. But whether the state of their thinking is a cause for such pain I don't think is proven.

Go in Peace and Power

Red

Stef said:

If you'll notice my "Featured" discussion, Luke, you'll see that you just hit on it! Many people with "Atypical Trigeminal Neuralgia" are mistakenly diagnosed with "Atypical Facial Pain". As for me, I've heard that there are no studies to prove that there is such a thing as "somatiform facial pain', or "psychogenic facial pain", so there exists a school of thought, on our site, in the "Atypical TN" group that it, perhaps, should not even be a valid diagnosis.

Since it would be pain originating in the Trigeminal Nerve, that would make this form of facial pain "Atypical Trigeminal Neuralgia".



Luke said:

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

20

For me, being a nurse, I had the tools to diagnose myself. My MD refused to start me on antibiotics and prednison to treat a sinus infection. He refused and I got this parting gift. What a treat. I just got done talking to my pain management professional. I was told to wait and she would contact the mental health professional. Watch out for those people with the power to put you away. It only delays the inevitable. If you are alone in this journey your fxxxed. I wouldn’t mind but I need to set the standered for my children. Suffer bastered suffer, but just don’t quit, or see you suffer. I know I’m not saying anything most of you haven’t had to face. Am I the only one how is in pain 24/7??