To your earlier point of your docs saying it’s psychological I thought about it a bit last night. The cause is not psychological but the effects of the disease of trigeminal neuralgia are for some
Difficult to deal with this because most don’t ever experience what a patient goes through on a minute to minute, day to day basis so yes it does effect your emotional and psychological well being. That’s all I’ll give that physician that told you that. I live in Mass I was lucky because my spinal neurogen was a tn specialist too . Good luck keep us posted
Tatto20
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Yes AFP is a psychiatric dx. Like many conditions that mostly women suffer, they end up calling it psychiatric or not somatic. Recently there has been a movement to change to Chronic Idiopathic Facial Pain (I think that’s it.) Red wrote an article about it here on this site a few years ago, he championed the name change.
My Neuro initially gave me this dx, then after I became more informed I asked her to to change it. She has reasons for everything she does, perhaps insurance coverage, for example.
But, she does not believe I have a psych disease, most likely TN pain from dental trauma, tmjd or migraine, cercicalgia …or all four. She can’t tell me exactly why my episodic migraines of 50+ years turned into chronic facial pain.
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I am so sorry you are going through all this. Will send healing wishes your way, I know how hard this awful pain is.
Hi tatto20 (Joanne).
Thanks for the info. it appears from my 3 mri’s that it is an artery. But, who can be really sure until someone gets in there. I’ve gone to two neurosurgeons I’d trust, one in Oregon (Dr. Kim Burchiel) and one in southern cal where I live, at UCI in Orange County (Dr. Linskely). I can’t do the MVD until after December, as I have to wait a year to give the gamma knife a chance.
It’s a hard disease to describe as is chronic migraine. Anything that can’t be seen such as a broken arm is difficult to understand by non sufferers. I agree about the chronic pain becoming a psychological/psychiatric issue. AND I also agree that the disease itself is absolutely not psycho somatic.
I hope you are having a good day.
Camia (Sandy)
flowerpower we seem to be in the same ATN/TN boat, 30 years of neurologically complicated migraines has created the secodary condition of facial nerve damage – and no one knows why. My neuro has several patients in her practice like me, both male and female, where chronice migraine has developed facial pain. In fact, one gentlemen and I seem to be on the same diease progression even.
One or the other of us will show up with a new issue or new info and the other one will follow right behind. Which is kind of nice, actually, although clearly she’s not sharing any personal info with either of us, it’s nice to know I’m not crazy and I’m not alone, my doc is treating at least one other person with same issues cropping up along the same timeline.
Now if only we could figure out the root cause and work to treat it or prevent it from there!
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Hi, I have seen the abbreviations, TN1, TN2 and ATN, used in many posts and not consistently. Would some one please give me the definitions of each of these along with the facial pain symptoms so I better know which TN I have. Thanks.
TN1 = trigeminal neuralgia
This condition causes intense, stabbing or electric shock-like pain in the lips, eyes, nose, scalp, forehead and jaw.
TN2 and ATN = atypical (or type 2) trigeminal neuralgia
This form of nerve pain is difficult to diagnose, as it is rare and the symptoms overlap with several other disorders. The symptoms can occur in addition to having migraine headache, or can be mistaken for migraine alone, or dental problems such as temporomandibular joint disorder or musculoskeletal issues. ATN can have a wide range of symptoms and the pain can fluctuate in intensity from mild aching to a crushing or burning sensation, and also to the extreme pain experienced with the more common trigeminal neuralgia.
So the Columbia page you posted says:
“The diagnosis of AFP is made following a formal psychological evaluation, including a battery of psychometric tests. Additionally, other causes of facial pain, such as injuries to the trigeminal nerve or trigeminal neuralgia, must be excluded.”
I understand your worry that this could lead people with undiagnosed facial pain to be dismissively labeled as AFP, which would then lead to mistreated the origin of the pain. I’m sure this has already happened to someone, unfortunately.
However, it does say that before AFP can be selected as the accurate diagnosis, doctors MUST rule out trigeminal neuralgia. So someone with facial pain is going to be diagnosed with AFP if they haven’t had an MRI AND the psychological testing. They cannot say, “Well, nothing on your MRI, so you are definitely depressed and that’s what is causing this.” They cannot simply do that.
Also, I do think that there are psychological issues can cause pain similar to what we have, just as many of us reduce our pain via psychological means, i.e. meditation, which definitely reduces mine. I still need my medication, but it definitely helps.
Before I had a diagnosis (ATN caused by a tumor resulting in nerve damage), I wanted to explore every possible thing that could be causing my pain. I read the book Striking Back, which has a ton of different types of facial pain that stem from tons of different causes. I was lost, scared, in pain, and I didn’t know what was causing my pain, even though I had gotten multiple MRIs and CTs that had cost me thousands of dollars. If I could have taken some psychological tests just to rule it out, I would have.
So I think this inquiry is okay. It isn’t saying all facial pain is caused by psychological factors, it is just saying that what they now call AFP is caused by them. Not other things like TN, ATN, TMJ, SUNCT, etc.
I hope no doctors are dismissive of their patients, but I also hope they check everything out before they cut open anyone’s skull… mine has been opened twice so far to remove those tumors, and I hope no one has to go through that unnecessarily.
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Thats another worry, it seems more often than not, a person who legitimately have a problem with trigeminal neuralgia could have clean MRIs? Therefore, and im assuming, this could have a ignorant doctor just fob a patient off as a psyche case because imaging doesnt show a reason for pain. I mean, chronic pain can take a once well balanced person turn into a depressed and anxious person. I don’t know. All so confusing
EmG – that’s exactly why you have to ask the doctor if they currently have TN/ATN patients, how many, and for how long have they been treating them. Do not accept that they can treat it as an answer, you want someone with experience with the issues.
My MRIs are currently clean, have been since my first one at age 18. I believe the official phrase is “no abnormalities of note” which always makes me want to raise an eyebrow and with an evil grin ask “what’s not being noted?” But we all have to keep in mind MRIs are so detailed now there really are plenty of things that show up on the image that aren’t worth noting.
I now read the link as well. I have been diagnosed with AFP. But when it started I felt great. Top of the world. Over the years I have become sad and grumpy. That’s simply what lots and lots of pain does to you. A rat under constant pain also wouldn’t behave normally. So I guess the arrow of causality in my case and many others went: first pain, then depression. While I won’t doubt that the arrow can go the other way the link seems to suggest that the latter case is the only case. Sorry: again, I was happy before the pain hit me and all my scans come back normal. So I am in that category and misfitting the link’s categorization.
Yes, seems if they can’t figure it out then it isn’t there. I’ve been tossed around in that “all in your head” diagnosis too. That’s why I went to a Naturopath Dr finally. Yes, the pain is in my head but it REALLY is real. I was finally treated like I knew something about my body and got treatment for Lyme which took the migraines I had been suffering for years (3X/week) away.
My TN remains and is believed to be a symptom of Lyme disease. Many Drs believe the brain and the nerves there are protected from bacteria by the BBB but newer research shows there ARE bacteria that can cross it. Lyme is the most common one of them. They LOVE mylean layers of nerves. Any nerve, not just the TN. “Auto immune disease” is probably your body’s defense system trying to get to the bacteria that have embedded themselves in the nerve. Get rid of the bacteria (not easy with Lyme) and then treat the injury to the nerve. Chronic Lyme does not respond to antibiotics alone. The cysts and biofilms Lyme develops to protect itself from these are iron clad so to speak. I’ve found that MMS gives me some relief. Have done 2 - 3 weeks sessions with it and am amazed at how much clearer I think and stronger I feel. Google MMS Jim Humble (man who discovered and researched the tx) to get the right one. There are lots of folks who would love to sell you something resembling it. Be smart in your own research before using it but I highly recommend it due to my own results.
oh, BTW, cannabus oil also has helped the pain for me.
…and another thought. After much research, I don’t believe any illnesses that are being supported with pharmaceuticals will ever be ‘cured’ as there is too much money to be made by keeping us sick and “supporting” our symptoms with drugs. That’s the reason I added a Naturopath Dr to my team. They are not dependent on drugs as they treat you. They look for the cause and cure, don’t just treat the symptoms.
I wish you well in your struggle to find relief from your pain and hope this info helps guide you there.
Redbekia
This is a very outdated belief. Interesting to me that it is mostly women that suffer with TN so the “all in your head” diagnosis followed. I love how women are never taken seriously in this world.
Anyways, this is not currently accepted by specialists. And we should all find DRs that know that.
I requested an appointment so somewhere i could tell them how sad they were and asked if they ever had red hot rebar jabbed in their eye up to 20 times an hour only less because sometimes the tic would last 15 minutes of the hour! In my treatments, surgeries and meds I have never heard such a thing, misdiagnosed yes, pyschological, no! Had to respond somehow to such crap!
I have afp also now refer to persistent idiopathic facial pain first time it showed it’s ugly face was in 2004 to 2008 n went to slept reapeared 2016 from a deep gum cleaning last a yr calmed down through 2017 n returned in June of 2018 I’m on lyrics pamelor n norco but at its worst nothing helps so I just have to ride it out I do not have to at all my pain is on the left side on side of nose in roof of mouth eye temple n stabbing knife pain im66 facial injections do nothing for pifp stay away from them because the either won’t or can make it better pifp is different from tn the pain can lasts for weeks around the clock or on n off through out the day so make sure your neurologist knows the difference pifp is more rare then atn I was told I will live with this the rest of my life n the worst pain comes on in April May or June n then starts leveling off but never leaves I call it the monster many times I’ve ask god to please take me because I’m not strong enough to take my own life but I speak to god all the time or I’d go crazy I’m hoping for the best for u n that it will go away eventually but the correct diagnoses is the most important thing take care n keep us post Abbie cunha
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