MY conversation with my doctor regarding ATN

Several points were discussed.

1. He is not comfortable with an ATN diagnosis, he believes ATN is a catch all term, basically telling the patient... yes their trigeminal nerve hurts and it's not on the typical TN fashion when a blood vessel or MS is affecting the nerves, so God knows why, we're just gonna give you medicine!

2. ATN which is more rare than regular TN affecting both sides of the face and not being MS (I have an MRI that was clear) is rather odd, he wonders if it's something structural!

3. The muscles around my cheek/jaw area are sore and produce pain when touched.... he is suspicious there must be a connection somewhere!!! (muscles don't get tight on the face just because)

he is sending me to some muscular therapy, 9 sessions, if the pain continues go back to him.

today my RIGHT tongue and RIGHT upper tooth are sensitive and tingle, while AT THE SAME TIME my lower LEFT lip is tingly.... meaning three nerves on the opposite side of the face acting up at the same time.

Last night my upper branch on the left was bothering my eye lid!

It's not MS (that was discarded)

he says anatomically speaking its a bit too much all over the place!

Your Dr is not up to date. First of all there are many, many of us that are in our 20s and 30s. Some even younger. I was told the same thing about bilateral ATN and MS. It is BS. The statistics of people that have both MS and TN is actually very, very low. Also bilateral pain is not as uncommon as believed. Spend some time in these forums, or on facebook, and you will see that. And while MRI is used to rule out MS it is not the best tool for diagnosing MS at all. If you have no other symptoms of MS I wouldn't worry about that though.

I am bilateral and I can have pain jump from branch to branch and side to side from second to second.

ATN is a catch all term for sure. And you need to be very proactive in looking for answers and in finding a DR that specializes in facial pain and actually understands what we go through (not just what stereotypes dictate).

My jaw and cheek gets sore too. That can be part of ATN. I hope for your sake that it is related to your sore muscles or TMJ joint. This diagnose is grossly overused too. I have come across many many ATNers that received a TMDD diagnosis somewhere along the way.

It is good to question everything and look for answers. You will learn more on these forums then from most DRs unfortunately.

Just my two cents…
I have bilateral TN1 and TN2, with all three branches affected on either side. I have had periods of constant pain on both sides simultaneously, and times where the pain jumped around. My right side was affected for ten years, and my left for a year before I had MVD surgery.I do not have MS. Some of the compressions were only seen on a high resolution MRI that my NS ordered, however there was found to be additional compressions during surgery that were not visible on the MRI.
I am glad that you are finding some relief, and that you like your doctor, but would urge you to see a TN specialist if your current treatment doesn’t work.

Christine, have you had any success with the surgery?

Hi proactive,
Like the name!
My story started with MS like Symptoms and patterns of relapsing & remitting, hand tremors, leg tightness foot drop, leg and arm spasms, and some odd sensory sensations. ( to name a few)
I was 27yrs old…otherwise healthy …had a gazillion tests, saw a handful of specialists and no diagnosis, they ruled out many neurological conditions based on exam, mris, blood work, lumbar puncture, cat scans etc.
The symptoms were visible to all and it did impact my quality of life for a time… No one could tell me why , they were all puzzled. It was frustrating.
Age 29
I experienced a lightening bolt of electrical pain right under my eye out of the blue, I was folding laundry and actually cried out in pain, and dropped what I had in my hand.
Back then there was no google.
Throughout the day /evening into the next day it happened a few more times.
Saw my family doctor and lucky for me he recognized it as TN and suggested maybe it was, based on my description. I had never heard of it.
I was given Tegretol and responded well to it immediately …we had to adjust the dose a few times over the first 4-6 weeks as the painful attacks crept in, and my only trigger was wind/breeze.
Within a few weeks I started experiencing more of a constant burning pain on the opposite side of my face, mouth (my left side) never at the same time as my right side.
On my right I just had the shock like pain shooting right under my eye, so I had no idea what was going on, but I felt like I was falling apart.
The Neuro I saw at that time, dismissed me because;

  1. I was 29
  2. no MS diagnosis or lesions, nor anything amiss in my spinal fluid.
  3. bilateral is Rare, and ONLY presents with MS

Ok, so why do I have bilateral face pain?

No answer and I was dismissed.

I was very fortunate to have a GP willing to continue treating my face pain with Tegretol and a little gabapentin and Baclofen eventually.
After 6 weeks with my pain controlled by meds we started weaning down of the meds successfully. (approximately 9 months after initial diagnosis)
Most of my neurological symptoms stayed away, except the hand tremors, and occasional leg weakness.
I experienced an 8 year remission on my right side and 10 year remission on my left side
I didn’t know TN could come back, there wasn’t a lot of information back then.
I am now 43 yrs old, my right side classic TN1 is fairly managed by the meds I take. I was able to work on a low dose med be active, and not Be impacted .
My left side became progressive ( now both TN2 and TN1) and resistant to meds, the meds only work to a certain extent…I have mid to high levels of pain everyday. I had MVD in April 2013, 3 compressions were successfully removed, 3 compressions that were NEVER seen on multiple mris.
I came out of that Pain free but NOT TN free, reduced my meds from 3-1 and had 4 -5 months of relief while I recovered from surgery.
Then it started progressively getting worse again…
Btw, I still have hand tremors, leg weakness / spasms on occasion.

To this day I do not have MS or any other neurological condition other than
Bilateral Trigeminal Neuralgia.
My life has changed completely, no driving, no working ( I loved my job) and despite trying all sorts of medications, procedures , diets, holistic and alternative treatments, nothing has been able to tame my left side TN.
Except the occasional oral nerve block which gives me 5-7 hours of relief.

ALL this to say, the field of Neurology is vast, and sometimes ( like in my case) you can have serious life changing symptoms with NO diagnosis, NO answers. I was very lucky to have a GP who treated the symptoms as they came and went and I found alternative treatments.
The TN though, amongst the many TNers I’ve met online and in person, I can tell you this…we all share similarities but I have yet to meet Two people with the same case history…

Too much is still unknown about TN, luckily there are organizations finally doing active research and hopefully in our lifetime we’ll know more.

Pro active,
If you’ve made it this far…lol ( sorry I’m long winded) :slight_smile:
Develop a good relationship with your doctor and perhaps instead of finding a cause ( which may be elusive) treat the symptoms with the aim at improving quality of life …
I’m really glad to read you like your doctor, that’s fabulous and great that he is open minded
I DO hope you find answers and I hope you’re feeling better soon! Keep us up to date on how you’re doing with the muscle therapy!
Mimi :slight_smile:

Yes ofcourse overall TN and ATN are rare. But within that population more bilateral people do exist then DRs realize. I think Red said 30% of TNers he has come into contact with have bilateral symptoms. And from what I can see ATN is much more common then true, classic TN. Mostly because it is a catch-all diagnosis so anyone with "atypical' symptoms gets thrown into the pile.

And my point was that it is a complete misconception that bilateral ATN=MS. It is aggravating to be dismissed by DRs who say bilateral is so rare-it is impossible that you have it OR if you do you must have MS OR you are too young. Well I have had upwards of 5 MRI/MRAs. I have no symptoms of MS and nothing shows on my tests. No compressions either, which we know is not unusual. And I was 29 the first time I had ATN. I have heard these phrases time and time again during my own appointments and from people in the forums. It is very dismissive of one's pain.

Now I do happen to agree with you concerning the cervical spine, posture and the fact that facial pain can be an extension of it. I am living that. Drs will not admit to that correlation. I personally believe there could are many causes of facial pain, such as the one mentioned above, muscular problems, TMJ issues, compressions, dental injury, herpes and zoster, Lymes, other viruses or auto immune conditions. Our medical system has a very narrow view of TN.

The fact that so many MVD surgeries are unsuccessful speaks volumes to me. I think there are a whole lot of people having this surgery for no reason. Research is obviously needed. Many people with ATN don't end up seeing a neurosurgeon because they are told off the hop that surgery isn't an option and to treat only with meds. Also a lot of neurosurgeons won't touch an ATNer because MVD surgery is not nearly as successful for us.

Take this article:

Where none other then the magician MVD neurosurgeon Dr. Linksey says "40% of normal living patients and up to 50% of patients studied at autopsy have these vascular contacts without having TN. Clearly vascular compression, while necessary, is not sufficient"

That statistic really blows my mind. Take me for instance--with my bulging disc at C5 C6 bilateral pain in my face, neck, shoulder and arm. And that fact that physio and acupuncture are helping with my pain. BUT I am the fourth woman in my family with TN (my mom, aunt and great-grandmother). So there has to be something more at play here. And "they" also say that TN is not hereditary. I have talked with lots of other people that have it in their family. And research is being done into the hereditary factors of TN. I participated in this study through the U of Toronto.

And I think it is fantastic that you have found a Dr. that is open minded. We need someone to oversee us while we investigate possible causes and solutions. It is so, so important to search for a Dr. that believes in you, your pain and comes up with a treatment plan. It took me a year and a half to find a good neuro and he has made all the difference in my life with this pain. Keep us updated on your progress.

Evee, />
My first MVD, on the right side, relieved the shocks but not the constant burning boring pain. This was likely due to the fact that I had had symptoms for almost ten years. I had a peripheral nerve stimulator implanted on that side, it it completely controls my pain.

I had MVD on my left side just one year after I started experiencing symptoms, and that procedure was successful at stopping both the shocks and the burning boring pain.

I had all my procedures done in 2013. I have been mediation free since December of 2013.

Evee Goldeen said:

Christine, have you had any success with the surgery?

Hi proactive,
Funny you should mention the mind/body connection etc…I am very open minded and when I say I’ve tried many things, believe me…the list is long.
Meditation as well as visualization is a key part of my ability to “manage” as well as I do…
The book I recently read a few months ago, “You are the Placebo” by Dr. Joe Dispenza is FANTASTIC and I highly recommend! It talks very much about the powers our brains have using our minds to heal our bodies and lots of scientific research studies as well as his own personal experience. The science is explained very well so it’s easy to read for those of us without the expertise…I’ve been “working” hard on using this information and keep referencing back to this book. It can’t hurt!
Thanks for digging out the TED talk link, I will definitely watch it. So sweet of you to go to the trouble. I’m originally from Montreal, Quebec, so the Laval connection is cool!

I had a recent traumatic pain incident as a result of a tooth abscess and emergency root canal, and 9 days of IV antibiotics etc. I’m just recovering and regaining my strength/health and had to reschedule my first bio feedback therapy session… I’ll let you know how it goes!
( sounds like we think alike!! )

There are active research studies being done, including the one Jane mentioned and participated in . I’ll send you the link, really hopeful, and they’re thinking it may not just be one cure but a few different ones as Facial Pain is more complex than we realize…it’s just exciting to finally have TN be on the radar…
I agree with Jane, I avoided MVD for a long time because of the whole compressions being found in the general population upon autopsy with no history of TN.
However, as my TN rapidly progressed to unbearable levels and I refused to do nerve damaging procedures, it was my best chance at a slight reduction in severity, of course I hoped for more, but my NS and I knew there were no guarantees going in…it did take my pain from 8-10 all day everyday and high dose meds to more time at moderate levels with spikes in the mid to high range.
TN and facial pain is way more complex then we all realize…
Thanks for your note , keep well, Mimi