A Pained Life: The Parable of the Elephant

A Pained Life: The Parable of the Elephant

A king has the blind men of his village brought to the palace. He asks them to describe an elephant after allowing each one to touch a part of the animal.

The king then asks them, “What sort of thing is this?”

The one who feels the head calls it “a pot.” The one who fingers an ear says “a basket.” The trunk is “a plow,” the foot “a pillar,” the tail “a pestle,” and the hairy tippy top of the tail “a bush.”

348px-Blind_men_and_elephant4This parable reminds me of the experience too many of us have with doctors who only can see or hear one part of our story.

When my trigeminal neuralgia began, the textbook definition of it was very specific: pain in the correct area of the face, the pain has to have a triggering event, such as a light momentary touch to the area, and the patient must be 60 years of age or older. The only way it occurs in someone younger is if the person has multiple sclerosis.

I had the correct area. The pain was initiated by the slightest of touch. I was a textbook case. Except that I wasn’t, because I was only 25. Therefore, it could not be trigeminal neuralgia. Except that it was.

My youth made the diagnosis impossible to believe or accept for many of the doctors. In fact I was diagnosed on a date with one of my residents. He kept trying to touch my face. I kept saying, “Don’t touch me there!”

He looked at me funny and said, “Where exactly can’t I touch?” As soon as I mapped out the area he said, “You have trigeminal neuralgia.”

We were not at the clinic and the rules didn’t apply. He just saw and interpreted, instead of relying on the textbook.

Often we are sent to specialists who too often forget to look past their own areas of interest and expertise.

The rheumatologist looks at the negative results of the blood tests that indicate an auto-immune disorder. So he overlooks the disease(s) that do not show up in blood work.

The neurologist does a full neurological exam, finds no issues, and does not look past the exam results.

The psychologist listens to what we have to say and how we feel emotionally about the pain, and pronounces us depressed.

It is also a potential issue with surgeons.

With trigeminal neuralgia there are a number of surgical options. Does the surgeon recommend one procedure over all the others? Is that because it is the only one he does or does most often? It is important to know, because then the surgeon is only addressing and acknowledging one area of the elephant.

I often say we should not debate or argue with our doctors. I stand by that. At the same time we need to stand our ground.

We may need to remind them of the parable of the elephant and ask, “Have you looked at all of what I am bringing to you or are you blinded by a specific bias or area of expertise?”

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

For more information, read our User Agreement and Terms of Use.

Authored by: Carol Levy, Columnist

newest oldest
Notify of
kathy

Carol Levy, thank you for your article. It’s truly amazing that I had this very same discussion with my neurologist a month ago. He said “your face pain is most likely not trigeminal neuralgia because it doesn’t happen in young people, only older women get it; now if you were 60 years or older, then I would consider it.” I tried discussing all the facts we have with him and there was no talking to him about it; his mind was set!

Pam Vinson

I am on gabapentin(as well as many other things), it helps ease pain caused directly by nerves rather than trauma. It helps me when I take it in higher doses, like 600mg at 8:00p.m. and 1200mg at 10p.m. in order to sleep. Sometimes, I admit, there may be another 600mg by midnight. The “many other things” I mentioned are not for pain. They are mostly for depression and anxiety. I have migraines, so I couldn’t take Cymbalta. It was prescribed for me, and I ended up with “serotonin syndrome”. That was a nightmare! Especially when the prescribing doctor wouldn’t admit fault for the overdose of serotonin.

I have such empathy for us all!

I’m in the midst of the most severe TN attack in my journey. After the narcos and other “fixes”, my neurologist has started me on oxcarbazepin… and it works! Within 2 hours I was pain free – except for the burning numbness…but I’ll take that any day over the TN pain.

I know the medication won’t work forever but for now, I’m breathing a bit easier, sleeping a bit longer, and finding life is still worth living.

Johnna Stahl

Trudy, if I was your doctor, I would advise you to stop taking all the off-label medications you are currently on, as they don’t seem to be helping and could be working against your pain meds.

I wish I had some better advice… The only thing I can think of is to simplify your life as much as possible (if you haven’t already).

trudy myers

yes-I am also on a low dose of morphine and a low dose of oxycodone. I am still in agony about half the time. I try to explain to my M.D. that if I had pain in just 1 or 2 places I would be able to control it and keep it at bay-but when I am hurting in my legs and I mean like they are on fire from the inside out -and then also my back is killing me or maybe my neck too. oh and the when I am in severe pain my fibro exacerbates as well I become a near panic crying ball of agony-and psych visits are his answer. I would love to kick him in the nuts-thanks for responding Im sorry I am so angry at things

Johnna Stahl

“I am on Cymbalta, gabapentin, trazedone, tizanadine”

So, you are not taking any opioids? No wonder you feel like you are being under-treated.

Gabapentin is an anti-seizure medication, an off-label use for pain management, and these types of medications never worked for me. It is my understanding that all these off-label medications do not help very many pain patients.

Trazdone and Cymbalta are both anti-depressants, and these types of drugs never helped me either. (But if they help you, then therapy might help too.)

Tizanadine is Zanaflex, a very light muscle relaxer. Again, it wasn’t strong enough to help me.

Also, all four of these medications, if taken for a long period of time, can have a negative or opposite effect.

How about asking your doctor for some codeine? It’s a light opioid, and was usually prescribed for dental work.

BL

trudy myers, Thanks for the clarification. The way I look at it anything else that might help and that will ensure being able to get pain meds is well worth it. It beats not having any pain meds at all.

trudy myers

I have multiple pain issues and I use all the stuff you mentioned. I am on Cymbalta, gabapentin, trazedone,
tizanadine……so I cant think of any think else to try-but these psyche visits are a waste of time

Johnna Stahl

Trudy: Do you have a home treatment plan?

After decades of expensive pain management treatments, I created my own, which includes things like deep breathing exercises, stretching, and aromatherapy. Maybe if you wrote down the various therapies you use at home, how often you do them, etc., your doctor might agree that therapy isn’t for you. For instance, some pain patients spend time every day writing down their negative feelings and frustrations as a way of letting go of them, and this can have an uplifting effect — which is what therapy is supposed to do.

Both the under-treatment and over-treatment of pain appear to be at epidemic proportions, and the government is only working on the problem of over-treatment and diversion. Doctors are aware of both problems, but are more afraid of the DEA than their patients. And pain doctors don’t have to do anything wrong to get in trouble with the DEA or the State Medical Board, so most are changing their practices to suit those agencies. Including more limits and restrictions on opioids and other drugs that are being abused.

You mentioned you have already switched doctors, and now you’re probably thinking you should do so again. Keep in mind, though, that most pain doctors think alike on these issues.

If your doctor does not want to increase your pain medications, perhaps you could ask about other medications that would increase the efficacy of the pain meds. I know that many pain patients have supplemented prescription meds with medical cannabis, and most if not all have been able to cut back or quit. You don’t realize the freedom you will feel, as a pain patient, when you no longer have to depend on doctors for your pain relief.

trudy mye

Thanks-My MD is under medicating me!! and I just don’t think this psych stuff is worth the cost!! I think it may help some but I need a higher dosage so I can even get to a level that I can try this

Barbara Fiedler

Trudy…I have been for the psych/behavior health and it does help, up to a point. I learned relaxation therapy. But it will only do so much. If I can find a quiet place (not always possible, depending on where you are when pain strikes or if it is chronic like mine) and head it off when it first begins, then yes, it is helpful. I use it all the time. However, it doesn’t work for all of your pain. And the co-pays are more expensive than your regular doc visits!! It does NOT help with fibromyalgia, at least not for me. It has helped me with other things, like agoraphobia. 🙂 It can be helpfull for migraines. Your face pain, I doubt it. Biofeedback, maybe.
Hope this is helpful?
Barbara

trudy myers

When I said “they are making me go” I live in a rural area with very few pain specialist-and my MD made it part of my care plan-or they will take away my medication. The specialist I had before this also refused to keep me, unless I did psyche stuff and also physical therapy-when I told them I couldn’t afford to go to this they were going to take my meds away, so I changed to this one

Louis Janus

don’t forget to join us on the Facebook TN group (Trigeminal Support). Very helpful for asking questions and getting emotional support.

So true. I got TN at 41 and was considered too young.
The issue raised regarding surgery is important. My experience to date is that some surgical procedures work for some and not for others. One bad experience with surgery is often enough to put people off looking at other surgical options.

BL

trudy myers, Please forgive my question, I do not mean to be insensative. What do you mean when you say they are making you go ? Do you mean that they will commit you if you don’t go ?

Johnna Stahl

Trudy: I think seeing a therapist, psychologist, or psychiatrist works for some — but it just seemed like a waste of money to me. Therapy never directly affected my pain levels, one way or another. (I even saw a psychiatrist for hypnosis.)

Who is making you go? If it’s your insurance company, or a doctor with questionable motives, I would be careful. For instance, a lot of insurance companies now consider fibromyalgia to be a behavioral disorder, which usually has a smaller length and amount of coverage.

trudy myers

I want to know if psych/behavior health visits have truly helped anyone?? they are making me go-and I think its hogwash