Doctors ATN PLEASE HELP ME

For the last six months I've been battling vertigo.... I got a diagnosis for it and when I was getting over it I am hit with a burning pain on the left side of my face.

the burning sensation gets slightly uncomfortable, but it is nowhere near the pain described by trigmeinal neuralgia sufferers.

Worried about the sensation of burning on left jaw, left side of eye, left nostril, left side of lip, left cheekbone I went to the doctor and he told me that it sounded like trigeminal neuralgia type 2.

so he referred me to another doctor who told me, yep sounds like atypical trigeminal neuralgia then he referred me to other doctor who told me it looks more like shingles (I have no rash anywhere), he then referred me to a neurologist who told me it doesn't look like shingles but more along the lines of TMJ or stress and anxiety!

The sensation fluctuates, one time is the cheek, then my cheek is ok and my nostril hurts, then the lip burns, and it goes away and then the eye gets itchy and pain, and then it's back to the cheek.

last night I saw ANOTHER DOCTOR who told me it sounds like ATN, but then the neurologist claims is not because I do not have that stabbing electric shock pain ATN sufferers have

armed with information from this site, I showed the neurologist the many symptoms of ATN and he told me that while ATN includes burning sensations on affected side of face, IT ALSO INCLUDES stabbing electric shock pain similar to that of regular TN.

he claims electric shock stabbing pain is the trademark of ATN and TN. Without electric stabbing pain it points to something else!

on his response he said while ATN includes burning, ache, dull pain on face, it ALSO INCLUDES stabbing electric shock pain, and many times a relentless migraine!

but my other doctor disagrees and says it's how ATN starts before it turns nasty

who do I believe?

Anxious,

The particular doctor who is supporting you that it may be ATN..is he willing to start a very tentative treatment for ATN? Would he be willing to try some of the helpful medications for ATN at a very low dose? You would then know if they would be helpful to your pain. Eg my first trial with Carbazmapine was 100mg morning and night. After it increased and started to help me I had a reaction to it so I changed to Gabapentin. I'm increasing it slowly. I was never one for medications before my TN and ATN. But I thought it was worth a try and started on something quite low...

I hope some other TNers can reply here with their experiences with ATN pain



mel77 said:

Anxious,

The particular doctor who is supporting you that it may be ATN..is he willing to start a very tentative treatment for ATN? Would he be willing to try some of the helpful medications for ATN at a very low dose? You would then know if they would be helpful to your pain. Eg my first trial with Carbazmapine was 100mg morning and night. After it increased and started to help me I had a reaction to it so I changed to Gabapentin. I'm increasing it slowly. I was never one for medications before my TN and ATN. But I thought it was worth a try and started on something quite low...

I hope some other TNers can reply here with their experiences with ATN pain

I agree. If you have a doctor who is willing to let you try a low dose of one of the drugs that relieves the pain of TN/ATN/AFT....whatever they decide to call it....you will soon know, because when the drug is successful at relieving the pain, then you can be fairly certain of your diagnosis.

I agree.

Hi anxious,

Ok. I am not sure what is going on with you but your being passed around from Dr to Dr happens to most of us here. I have been dealing with this nightmare for over two years. There are so many different beliefs and so many different diagnoses that everyone seems confused...

I have been told I have MS, I have Fibromyalgia, TMJ disorder, dental problems, Atypical TN, Atypical Face Pain, Atypical Odentalgia, Migraines, Cluster Headaches, Occipital and Glossopharyngeal Neuralgia. You get the picture.

The first thing you need is medication. Most Drs will start with Tegretol or Neurontin but Tricyclic Anti-depressants such as Nortrityline can be very helpful for atypical type pain as well. If your pain responds then you know that it is at least neurological.

Second thing-have you had an MRI? If not then get one so MS or a tumour can be ruled out. For many of us atypical folk the MRI will be clear--which is ofcourse good and bad.

Armed with your MRI and keep a diary of your pain search out the best neurologists and neurosurgeons that TN has to offer and try to get a proper diagnosis and look into surgical options offered, if any. Many of us with ATN, me included, are not or don't want to be candidates for surgery. Do your homework with that. Become your own best advocate and don't stop until someone helps you.

Also, I have had this for quite awhile and I can tell you that it has many, many different sensations--not just the shooting, electrical type classic TN that a lot of Drs believe exist. In fact, I don't think any of us fall into that category.

Ask anything here:)

First things first, make a decision as to whether you take medication, that often can confirm a diagnosis. If you are helped by the meds, it can firm up a diagnosis.
Then try to breathe, just breathe gently. It does help. Have you ever given birth? If so you may remember those breathing exercises and how they help. So many of us here have been where you are now. We care, we KNOW! We want you to learn coping methods and get through all of this, and I know you will. You are bright, you count. Keep in touch, make a plan and let us know how you fare. Take care.

There is a link from our main page to the TN Fact Sheet at the US National Institutes of Neurological Disorder and Stroke, which I wrote and coordinated through external review for them. You may want to print out that fact sheet to take with you to any further doctors' appointments. It is available at http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm .

Some of your doctors seem to have their terminology a bit confused. If one of the neurologists says you can't be having atypical (Type 2) TN because there are no lightning strike volleys, then he isn't up to date on classifications of facial pain. Type 1 TN can occur alone, with such volleys of shocks. Type 2 can also occur alone, characterized as a constant 24-7 burning or throbbing of somewhat less intensity. Some physicians now characterize Type 2 pain as a "neuropathy" rather than "neuralgia". About half of all our 6500 members have had both types of pain mixed up. 20% of the members have bilateral pain which mixes these symptoms. The term "Atypical Face Pain" can no longer be assigned to any pain which crosses the centerline of the face. It is equivalent to "facial pain of obscure origins" and nothing more.

FYI, although stress can be a complicating factor in any form of chronic pain, there is absolutely zero medical evidence that it "causes" chronic pain due to emotional factors. Any doctor who believes the mythology of so-called "psychogenic" pain seriously needs to be retrained if not barred from practice. Stress control can be quite useful -- IN ADDITION to a plan for appropriate medication. But it is not a substitute and should not be discussed as a substitute for real medical care.

There is a basic and almost universally recognized approach for confirming a diagnosis of facial neuralgia or neuropathy. A short course of Tegretol, ramped up over a period of a month, will very often quiet both types of pain. It is most effective against Type 1. If you get a short-term positive response from 100-400 mg/day of Tegretol, then you almost certainly are dealing with Type 1 TN. Likewise, the most effective meds against Type 2 TN are in the class of tricyclic anti-depressant meds like AMitriptyline and Nortriptyline. They work in a common chemical channel that is impacted by both depression and chronic neuropathic pain, and they are recognized by the International Association for the Study of Pain (IASP) as the standard of care for neuropathy.

Your individual case is complicated by vestibular neuritis. From what I've read in 20 years of working with chronic face pain patients, this disorder is even more rare than TN and doesn't have any direct connection to TN of cause or effect. The medical treatments for symptoms of vestibular neuritis also do not overlap those for trigeminal neuralgia or neuropathy.

Feel free to come back and talk with us as you get settled down. There are good people here who may actually know more from their own experience than some doctors do (as sad and silly as that is).

Go in Peace and Power
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst
Living With TN

This is a tough one for me because I have facial pain but I also do suffer from anxiety. It is a vicious circle. The pain gives me anxiety and I over think which will lead to more pain. And round and round it goes.

Last year after my dad passed away I went through a really hard time with anxiety and that is when my TN decided to go bilateral. Stress and anxiety DO NOT cause TN but they can definitely, without a doubt, exacerbate it. That is my opinion. I have been living with this for two years and I ask-who would not have anxiety dealing with chronic, invisible, undiagnosable pain!

It sounds like you have already been through a lot over the past few months with this vestibular neuritis. I was just reading about it. Did you have an infection that led to that? Was it corrected with anti-biotics? Or do you still have that as well? Honestly some of the symptoms of that sound like some symptoms of TN or ATN. Or did you present with these strange symptoms and they diagnosed it as that?

Anxiety and stress are very, very bad for your body. You get yourself worked up into such a state ruminating and overthinking every little sensation that it turns into panic. I am speaking from my own experience here. And when you start panicking you can't breathe right and you essentially start hyperventilating. Like this:

http://www.calmclinic.com/anxiety/peripheral-neuropathy

I have worked myself up into such a state that I have pins and needles in my arms and legs. And misfiring feelings of nerves going off. You need to take big deep breaths and you need to get some sleep. Here is my email. Send me a message if you want to. ■■■■■■■■■■■■■■■■■■■■■■■

anxious said:

What an amazing people you are!

The thing is I don't know if I have pain or not

I will explain.... I have a medical problem called vestibular neuritis that left me without balance and vertigo for the last six months, it gave me an IMMENSE AMOUNT OF STRESS... Stress like I never felt before!

This made me over cautious with any pin or needle I feel on my body.

I am VERY ANXIOUS now

a few weeks or perhaps months ago I was feeling an odd sensation on my left cheekbone, sort of as if I had an acne or something there and I would check to see and nothing (it would last seconds and only come up once in a few days)

Recently I noticed a very mild stabbing (but only week ago or so), I mean a pain so so so minor you would ignore it if you were just busy living

Being overly anxious about my health, I went to google and found trigeminal neuralgia and hell's gate opened right there.

After reading about it I immediately felt a very minor burning sensation on my cheek (left side)

so I stressed beyond belief (you cannot imagine how much I'm stressed since wednesday.) to the point I am having palpitations and waking up at night with panic.

This sensation mild burning sensation on my cheekbone lasted all day wednesday, like a light burning (nothing painful)

thursday I was extremely stressed and had the odd sensation went away but the left side of my tongue started hurting, plus the left side of my throat... and a mild burning sensation on my left cheek and lip

Friday I was in panic all day and felt this odd sensation on my cheek again plus burning on the left side of my face, my left eye hurts now and my left side of lip hurts

then last night my face burned all day (1 or 2) on the discomfort scale and my nostrils hurted when I breathed in

today I feel stabbing pain on my jaw (Left side) and the odd sensation on my cheekbone, and nostrils hurt once again.

I asked a doctor online and he tells me this sounds like panic, anxiety, stress.... but I FEEL IT, I REALLY DO!!! he says TN is rare and ATN is even more rare than TN!!!

the thing is prior to wednesday it wasn't like this, I didn't feel it, just an odd thing on my cheekbone that would come once in a while and it would last a few seconds, nothing else.

now my throat burns, my nostril hurts when I breath in.... I DO NOT KNOW IF THIS CALLS FOR MEDICINE!

Do I sound like an overly stressed individual? my last six months haven't been easy, my world would not stop rotating, I could barely go out and do anything because the brain fog and the world spinning sensation is horrendous!!! As you understand I was under A LOT OF STRESS.... To the point I aged in six months more than what I aged in a year.

Now with this issue with atypical trigeminal neuralgia I am a mess, I don't know how much stress I can take before I break and give up!

Now, PLEASE BE HONEST, I know how you feel and I truly wish you the best, but do you think I should spend more of my meager savings and go to yet another specialist to ask for medicine for TN and start a new treatment for this? Do you think this could be my anxiety?

please help me

I am craving for the end, I am giving up and I need some advice, no one around me understands!

could this all be anxiety?

Anxious, I'll try to respond to your specific questions where I feel confident that my information is current and constructive:

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You mention that some physicians now call ATN or trigeminal neuralgia type2 a neuropathy rather than trigeminal neuralgia type2... if trigeminal neuralgia type 2 is a neuropathy then it should be more common than what they claim it is online, no?

<<<<Though Type 2 TN is more common than many physicians are aware, the neuropathic nature of the pain is probably not the reason or cause. At one time, Type 2 TN was also called "pre-trigeminal neuralgia" because doctors observed that it might emerge as the first pain syndrome and then later morph into the more familiar volleys of electric shock spikes. If I'm reading trends correctly, the main reason for the re-naming of Type 2 TN is that it frequently requires different medications than Type 1, and the character of the pain itself is more that of neuropathy than neuralgia.

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A lot of sites make it sound as something very rare, basically a rarity inside the rarity of TN, but if it's rather a neuropathy then I think just about anything from cold, to tmj, to bad posture, to muscle tension, to a bad tooth can cause a neuropathy on the face, am I wrong?

<<<<I don't think anybody is entirely certain of all the causes for trigeminal neuropathc pain. Almost certainly, a number of DIFFERENT causes can contribute to its emergence. Bad posture and muscle tension most likely aren't on that list of causes. But dental abscess or careless over-use of anesthetic during dental procedures definitely can. There is speculation but no firm data that the Herpes Simplex I virus may also cause some cases of Type 2 TN (the virus involved in cold sores).

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What I understood by reading your valuable input is that Type 1 trigeminal neuralgia is the actual proper trigeminal neuralgia where the nerve is often squeezed by something else on the face (right?) and that is relatively rare and it is often extremely debilitating and painful.

while Type 2 TN is more of a symptom of something else that causes the nerve to get irritated causing all sort of symptoms on the face.... and the pain/discomfort varies on intensity depending on the cause, from mild you can ignore it, to extremely painful.

<<<<I think you have the outlines right. The best demographics we have indicate that Type 1 TN may first present as a new case in 12 to 20 people out of 100,000, per year. This compares with an earlier estimate of 4 per hundred thousand per year. The stats aren't as reliable on Type 2 TN because it is often mistaken for other types of pain and few physicians have deep training in recognizing it.

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Regarding patients, Some patients have TN1 with the stabbing pain, on top of the burning discomfort of ATN, while other patients just have the discomfort of ATN, while others just have exclusively TN1 symptoms. Is that correct?

<<<<that's pretty much the way it sorts out. One addition, though: BOTH types of facial pain tend to intensify over time, and there is limited evidence to suggest that in Type 1 TN if pain is allowed to persist without effective treatment for seven years or more, then the effectiveness of MVD surgery tends to be reduced.


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Let me ask this directly. It's the intensity of pain the same for all patients? or for many TN is just a nuisance that comes here and there for a few seconds and then goes away? I was under the impression that TN sufferers have constant stabbing of pain that is progressive, but the more I read the more it seem that many actually have it for a few weeks and then goes away, while others have just a minor thing they can ignore, while others are completely affected by this, I guess it all depends on the cause and the intensity of pain.

Do I understand the difference correctly?

<<<<No, the intensity if highly variable between patients, and nobody is entirely sure what distinguishes the most severe cases from the more manageable. Pain can go into remission spontaneously, especially in the early stages of the disorder, and a few patients report being pain free for up to two years before the return of pain. But the remissions tend to shorten and the pain "comes to stay" if not managed effectively. It's important to seek effective pain management early, and to stay with it, even if your pain evolves and requires different medical or surgical solutions later. If the pain is allowed to stay uncontrolled, it appears that the nervous system develops changes which may make later treatment more difficult.

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By the way, Neuropathy is pain, discomfort or numbness along a nerve path, while neuralgia is stabbing shocking pain.... am I right? if I am right then my pain seems to go along the lines of neuropathy rather than neuralgic.

I have a neurologist appointment on the 7th of may at 11AM

Thank you for your help!

<<< Welll... "sort of" Neuropathy and Neuralgia are both characterized by pain, discomfort, numbness, tingling (parasthesia), but the character of the two kinds of pain is somewhat different. Neuropathy tends to be more constant, more burning or throbbing in character. Neuralgia can cause cascades of intense electric-shock pain. Both are sometimes mistaken for TMJ by inadequately trained dentists -- and some TN patients ALSO deal with TMJ or other secondary pain-related disorders such as MS. So there are a lot of factors in play.

I hope this is constructive for you.
Best regards,
Red

Hi there. I see this post is old but I wanted to chime in. Yes 100% I have developed anxiety over my pain. It’s stressful for many reasons- it is scary! What if it is something that is not getting properly treated? All the medication we are experimenting on & I never was on anything in my life until now so It’s scary taking things. It’s stressful all the dr visits and dragging my kids to visits & the cost of co-pays. We all want answers! The unknown is what’s giving me the major anxiety. For some people something will show up on an x-ray and for lots of us things don’t so trying to find the cause is stressful because like you said you were diagnosed with many things as I was too! Right now I am on a very low dose of cymbalta 40 mg. I have had tons of imaging & will continue to keep up with imaging for my sanity. I just started chiropractic treatment for the very first time in my life. I don’t think it will cure my facial pain but I do have tmj & stiff areas in upper back and neck so I want to get rid of any inflammation & see if it helps. Anyway 2020 I was hoping I would be in a better place with this face stuff by now!