"Is that pain all in your head"?

My diagnosis of TN came from 4 different doctors except for this last surgeon that I just saw who asked my husband right in front of me “Do you think it is all in her head”. I was so mad and wanted to scream! I dont understand how, excrutiating pain on one side of my face could be all in my head for more than a year now. Before this pain ever came, my life was awesome, i was deffintely standing on a mountain top. I went on a missions trip to Honduras and came back home with a nasty sinus infection and thats when it all started. why all of a sudden would my brain do that! Has any one else been told by doctors or ect. that this pain could be all in your head? Also, does anyone even know what that means when doctors say " Is is all in your head"? Im starting to feel like im going crazy!

Dear Kristen,
Yes, my first neuroligist told me that it was “psychogenic”. I don’t need a degree to know what that word means! I tried for 6 months to tell myself that it was, and no matter how much I told myself that, it just worsened and worsened and worsened. I asked for a second opinion, the new doc got me straight in for a nerve block, which worked temporarily! Woopee! With that diagnosis, he eventually sent me for an MVD. But the 6 months that I suffered with the quack first doctor were some of the most painful times that I’ve had with this disease. He prescribed me insufficient meds and then tell me that I had “maxxed out” on the dosages, and only later found out that that was BS. And trying to do my job with all that pain? Oh my gosh, I will never forget that time!
So, that told, GET A SECOND OPINION. I would walk straight away from an NS who said that to me. Who the hell does he think he is, talking over your head to your husband like that? Did he get his medical degree during the pre-sufferage era? Run.
Just my 2 cents,
Lily

Kristin, in my opinion, any doctor who would use terms such as you describe, in the circumstances you relate, should be sued for malpractice if not prosecuted and jailed for outright criminal assault! This kind of ignorant cr*p just makes me fighting mad!

I’ve been knocking around in the literature of neuropathic face pain for over 15 years, and I’ve read a good number of articles on so-called “psychogenic” pain. The number of verifiable cases of physical pain associated solely with mental states is so vanishingly small as to be ignored. In my view, the term “psychogenic” should properly be seen as equivalent to “I don’t know how to help you, so I’m going to con you into thinking the pain is your fault!”

The literature which addresses psychogenic pain seems to be founded on concepts such as Freud’s theory of female hysteria, and some of the animal conditioning theories of Pavlov. Most of Freud’s theoretical work has been discredited in modern psychotherapy, not to mention medicine generally, and Pavlov’s work with animals seems applicable mostly to animals rather than humans. In my personal and hopefully somewhat informed view, this surgeon (figuratively) needs his rear end kicked into next week. And I would be perfectly willing to tell him so to his face. Feel free to email him this note.

Go in Peace and Power.
Red

Yes, in fact my wife, hope she doesn’t read this, thinks I am imagining it. Wish it was imagination. Mind you the doctor is right; it is in your head, a little nerve that’s touching a blood vessel. At the moment I seem to be in remission but I know it won’t last but it’s great for the moment. I always console myself with thinking; “There’s people worse off than me” but when the pain really hits I often wonder.

One professor told me " we all have pain " I just asked for a second opinion. I know it is hard for people to understand, but Doctors should know, it makes me so cross, we have enough to bear without fools trying to belittle us. Hope you can put this behind you and find someone else to treat you. Margaret.

Not all doctors are really familar w/ TN. I am a nurse and I still don’t umderstand it. You need to find a doctor that specializes in TN. Just as if you had a rare cancer and would seek out a specialist in that knows all about your disease. If you don’t get the support you need keep serching.

Living with severe pain as that caused by Trigeminal Neuralgia or Atypical Trigeminal Neuralgia almost always produces a Secondary full blown Clinical Depression. So in a way, it’s understandable that laypeople would occasionally wonder if such patients as us are hysterical, “it’s all in your head” hypochondriacs of some sort!

But for someone in the medical profession to evoke such terms as, “all in your head” is unconscionable, and frankly, I look forward to living long enough to see the likes of such doctors, usually over forty, and usually male, all precede me to my grave. In other words, I feel a bit strongly about this! In a way, such a person is doing us a favor, since once such a profoundly stupid comment is made, we know not to ever see him or her again.

In my nearly four decades of suffering with this illness, I’ve found much more compassion from younger, and female doctors (although remarkably, in the past three decades, my two main caregivers have both been male doctors, so exceptions do abound). Dentists are often much more sympathetic to facial nerve pain and its effects than medical doctors, the latter of which spend a grand total of perhaps eight or ten HOURS of study out of their six- to eight-years of medical school learning about pain.

And yet we as patients have to do our part, and accept that we often DO present as Clinically Depressed … because we ARE. But this is almost always a secondary depression, which is caused by our PRIMARY condition of Trigeminal Neuralgia.

No, you’re not going crazy; you’re living with a complicated illness in a crazy, sometimes mixed up world. Carry on! (jqt)