A Pained Life: Fearful Fortunes

By Carol Levy, PNN Columnist

I love fortune cookies, but have no faith in the fortunes themselves. I opened a cookie recently and out came this message: “Listen to what you know instead of what you fear.”

I am going through a bad time recently. For 19 years I have had a spontaneous remission of the worst of my trigeminal neuralgia pain.

The trigeminal nerve now seems to be regenerating and it worries me. I get sporadic tingling sensations in the numbed areas of my face, the result of a procedure done in 1979. Within the last few months, the spontaneous pain has also started coming back, not in the same way, and only one or two flares were horrific.

I am very fearful all the pain will return.

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My new neurologist specializes in headaches. My situation is an unknown to him. He is very nice but is essentially throwing drugs at me, a new one each time the one he just prescribed doesn't help or gives me terrible side effects. He is throwing things at the wall and hoping something will stick. I fear nothing will.

I finally found someone who specializes in trigeminal neuralgia and facial neuropathy, my disorders. She asked for a copy of my medical records so she can decide if she will accept me as a patient.  I fear she will refuse. Or if she agrees to see me will be unable to help — like almost all the others.

A woman I know has fibromyalgia and Complex Regional Pain Syndrome (CRPS). For years she has been on high dosages of Dilaudid and another strong opioid. Her doctor decided he would halve her dosages of both. She was appropriately fearful of being tapered. But to her astonishment she found she could tolerate the reductions. She is happily doing just as well on the lower dosages as she had been on the higher amounts.

A lot of what we go through is often based on fear. It is legitimate. We know what the pain is like, we know what the medications do, we know what we can and cannot do. A lot of our choices are fear based: It hurts when I do this, so therefore I will never do it again.

I am able to do so much more, feel so much better when I am on this particular medication and this particular dosage, so I will refuse any changes. I am used to this doctor/physical therapist/specialist being involved in my treatment, even though I am not always happy with them, so I will stay anyway.

It is hard to give up the fear. Pain is not like painting a room a new color and then deciding you don’t like it. You can always just repaint. But change what I am used to doing to deal with the pain? That is not so simple. My pain may increase and be even more unbearable, more daunting.

But what if I take the chance and find I am okay?

Our minds and bodies have been programmed to do all we can to avoid pain. Fear is one of the ways we deal with it. As a kid you touch a hot stove and feel the excruciating pain of a burn. You very quickly learn to fear a hot stove, the fear keeping you from hurting yourself in the same way again.

It is almost counter intuitive to heed the fortune: “Listen to what you know instead of what you fear.”

What we know is why we fear. Maybe, at least for us, the fortune should read: “'Listen to what you know, but take the chance of fear anyway.”

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Accepting the Unacceptable

By Carol Levy, PNN Columnist

I was recently talking with a friend who has chronic pain and, like me, has had to deal with many bad side effects on top of the pain.

Helene has a facial pain disorder. Unfortunately, as a consequence of her last surgery, she developed problems speaking and swallowing. She has repeated injections to help with her voice, but the swallowing problem Helene says “is permanent." 

I can't believe that. “Have you had a third or fourth opinion?” I asked.

“Yes, and a fifth and sixth opinion. There is nothing more to be done,” Helene explained. “But I have adjusted to it and accept it.”

Her last statement felt almost like a punch to my gut. I am happy for her. But truth is, even after 40 years, I do not accept the pain, disabilities and disfigurement the many procedures and surgery have wrought in my life.

It is hard to adjust to change, especially when it affects our natural abilities and body functions. Even harder still when it is the result of medical or surgical mistakes. Or a surgery or treatment that went fine but caused more damage.

Acceptance certainly makes life more bearable. And yet, I have never been able to reach that state.

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My pain started in 1976. By now I should be well over having to accept and adjust, but instead I am still angry, frustrated and upset when the pain strikes. When I try to read or write, it exacerbates my eye and facial pain and becomes more then I can bear. The facial paralysis, a side effect of a surgery in 1979, is a hateful reminder of the terrible surgery that caused it.

Children sometimes look at me strangely and stare. I get it. I look different. If I was a child I would also probably look and wonder, “What happened to that lady?”

But It is the adults who feel a need to point me out or comment about me, within earshot, that hurt the most.

My cervical spine was severely injured during one operation. As a result, I have 12 screws and 2 clamps placed in my neck to literally hold it up. When I saw a man look at me, tap his companion's shoulder, point me out and make a slashing motion across his neck -- appearing to indicate to his buddy that I tried to slash my throat -- I wanted to crawl under a table.

Then the question becomes, “How do you adjust?” Or for people like me, “Why haven't you adjusted and accepted?”

As I think about the people I know who have chronic pain, I realize the difference between those who have accepted, adjusted and accommodated versus those of us who have not is a simple one: They have been accepted, and their pain and disabilities have been incorporated not only into their lives, but the lives of those around them. They are believed.

What do those of us who do not have that kind of outside affirmation do? We need to find a way to self-solace, whether it’s by therapy, a support group or meditation. It may seem simplistic, but we are our own best healers. By self-healing we can throw off the hurt and disbelief heaped upon us by others and instead nurture ourselves.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Ambroxol: A Potential New Treatment for Chronic Pain

By A Rahman Ford, PNN Columnist

Researchers say a drug long used in cough syrup and cold medicines shows potential for treating some types of neuropathic pain.

A small study recently published in the journal Headache found that topical administration of ambroxol in a cream could significantly decrease pain in patients with trigeminal neuralgia, a chronic facial condition that can make even routine tasks such as brushing one’s teeth excruciatingly painful. 

In their review of the medical records of five trigeminal neuralgia patients, German researchers reported that all five patients experienced pain reduction with ambroxol 20% cream being applied within 30 minutes of a pain flare, with pain relief lasting from 4 to 6 hours.  In one case, pain was eliminated completely in one week.  

The results were similar to those of previous German studies and were so significant that researchers recommended that ambroxol “should be investigated further as a matter of urgency.”

Similarly, a recent study in the journal Pain Management found that application of topical ambroxol reduced spontaneous pain in several patients with complex regional pain syndrome (CRPS), a little understood nerve condition that causes chronic pain after a significant injury or surgery.  Notably, ambroxol therapy improved several other neuropathy-related conditions in CRPS patients, including edema, allodynia, hyperalgesia, skin reddening, motor dysfunction and skin temperature.

An Old Drug with a New Purpose

With a pharmacological history that can be traced back to Indian ayurvedic medicine, ambroxol was initially approved in 1978 as a medication to break down mucus and make it easier to eliminate by coughing.  It is generally administered in tablet or syrup form. 

Ambroxol is also used to treat a sore throat associated with pharyngitis, thus its potential role as a potent local anesthetic.  The drug’s anesthetic properties stem from its ability to block sodium and calcium channels that transmit pain signals.

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Although the idea that ambroxol can treat a sore throat is widely accepted, its application to other forms of pain is more recent.  

Previous studies using animal models of neuropathic pain have been promising.  In a 2005 study, researchers effectively reduced – and in some cases eliminated – chronic neuropathic and inflammatory pain in rats. Indian researchers also found ambroxol effective in treating neuropathic pain in rats, attributing its success to its antioxidative and anti-inflammatory properties.  Unfortunately, human studies are few at this point.

Ambroxol and Fibromyalgia

A 2017 Clinical Rheumatology study showed that ambroxol can play a key role in treating chronic pain associated with fibromyalgia.  As reported by Fibromyalgia News Today, researchers from Mexico added ambroxol to the treatment regimens of 25 fibromyalgia patients, three times a day for one month.  At the end of the study, pain scores decreased significantly and there was also noticeable improvement in sleep disturbances, stiffness and autonomic nervous system dysfunction.  No major adverse events were reported. 

Another 2017 study supported these findings, with the authors concluding that “fibromyalgia treatment with ambroxol should be systematically investigated” because the drug “is the only treatment option used thus far that has the potential to address not just individual but all of the aforementioned aspects of pain.”

Although data on its effectiveness in humans are limited, ambroxol shows great potential in treating painful conditions for which there are currently few safe and effective options.  It is particularly attractive because it has few significant side effects, is not addictive and can be administered topically in some instances.

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A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: My New Year’s Resolution

By Carol Levy, PNN Columnist

I am visiting at my sister's house. This was 38 years ago, but I still remember it and feel the hurt and pain as though it was yesterday.

My 12-year old nephew looks down at my penny loafers. Pointing to the penny in each shoe, he asks, “Are you wearing them to let everyone know how poor you are?"

That idea could only have come from his mother. This was a few years after the trigeminal neuralgia pain started, which disabled me and left me virtually housebound.

Unable to work and having no savings on which to rely (I was 26 at the time), I had to do something I never could have imagined. I went on public assistance. I was embarrassed and humiliated asking for that kind of help. That my family saw it as a black mark only made it that much worse.

In a way though, it was a badge of honor.  Not because I went to the state for help with food stamps and medical assistance, but because I chose to do what I needed to do.

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The emotional cost to keep control and be as independent as possible -- in spite of the pain and the disability -- was enormous.  But I did it anyway.

What a good lesson that would have been for my nephew. Aunt Carol had a choice: Go back home and live with her parents (which would have been a calamity for all of us and a loss of my independence), or do what she needed to do to stay in control of her life even though it was very difficult. And she bravely chose the latter.

Instead the lesson learned was: Aunt Carol is poor and we should look down on her.

How many times have we had awful things said to us by family, coworkers, friends and people we turned to for help, only to be held in scorn, derision or plain indifference? And yet we held their “truths” as truths to be held dear.

I remember an Oprah Winfrey show from many years ago. Her admonition was as true then as it is now. Hold onto anger against another and who does it hurt?

They will forget what they said and the anger, nastiness and humiliation they showed us; while we hold onto the hurt and pain their words and behaviors caused.

So, at the end of the day, the one that stays hurt is not them, but us.

It's a new year. My resolution is to let go of all the hurt and pain that others have sent my way. It took me almost 38 years to realize I needed to make this change in my thinking. But, as they say, better late than never.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Puppy Medicine

By Jennifer Hochgesang, Guest Columnist  

I was miserable. My trigeminal neuralgia pain from multiple sclerosis was still uncontrolled, leaving me mostly housebound. I had also just been diagnosed with vestibular migraines, which cause vertigo. Sometimes the vertigo was so extreme I was unable to walk, the world moving like a drunken carnival ride that never stopped even when my eyes were closed.  

And while the trigeminal neuralgia (TN) was on the right side of my mouth, I had just gotten ulcers out of nowhere on the left side. Anytime I drank something I felt a blind searing pain that took minutes to subside.

I was just barely pushing through, not sure how much more I could take. But I had an appointment to see a puppy at a nearby animal shelter.

I have had dogs all my life. Each one has been a part of the family and amazing creatures: loving, smart, playful and giving. My last dog, Aequoris, passed away two years ago and her sister Zola a little before that. I needed time before getting another dog. But as I went through this year in the worst pain of my life, I started to slowly think about getting a dog again.

But I had many questions to ask myself: Was I well enough to care for a dog? Could I afford a vet? Would the dog get enough exercise? Did I have help for the times I was too sick to care for it? Were there walking services in my area or boarding services if I had to go to the hospital? Would pet insurance cover those situations? Would my family members want a dog and be willing to help?

Even as I answered all those questions on the way to the shelter, I almost cancelled. I just felt so physically awful and it was hard to think of enjoying a puppy.   

When we got there, they put us in a small room so we could meet the puppy and get to know her a little. She was an 11-week old rescue from a litter of five. They said she was a Spaniel mix, but really they had no idea what breed she was.

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When they brought her in, my first thought was that she was pretty funny looking. Then she actually ran up to me and kissed me right on the left side of my mouth, the one that doesn’t have my TN. It was like she knew! I couldn’t believe it!

I held her and smelled that sweet puppy smell. She wasn’t funny looking after all. She was beautiful. She had dots of brown over her eyes, silky black fur down her back, and fawn-like legs with spots everywhere.

We played and I fell in love within seconds. I watched her play, moving like a little infant excited with the world. I laughed as she tried to catch a ball and fell, and was so moved when she came to me for comfort.

Suddenly I realized I wasn’t in as much pain! Holding her, rubbing her soft fur and watching her jump around just did something for me – like it was medicinal. She was helping me. I knew at that moment she would bring that gift to me and in return I would do whatever I could to make sure she was cared for: vet visits, exercise, training and love. I named her Sasha: helper of womankind.

Sasha is now almost six months old. She is crazy smart and learned sit, down, and up in the air the first day. I have also started working with a trainer so she doesn’t touch the right side of my face and set off a TN attack.

I can have Sasha off leash in the backyard and throw the ball for her to catch with my 7-year-old daughter, who thankfully runs like crazy with her.

But she still rings the bell to go outside seven times an hour and tries to eat my socks no matter how many times I say no. She grabs tissues and runs so fast, dodging furniture and ducking under and over until you want to pull your hair out.

But then you leave the room for one second and come back to find her butt wiggling, tail thumping on the floor, and plaintively whinnying, “I’m so happy to see you. I missed you so much.”

Sasha has the sweetest face and when she lays next to you with her head curled in your lap letting you pet her, looking up at you -- it’s just pure love.

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Is it a coincidence that in the past five weeks I’ve finally found the food triggers for my trigeminal neuralgia? I’ve stopped eating dairy, citrus, chocolate, caffeine and sugar. My pain has gone down so much. It’s like night and day since I got Sasha. I still need to work with a nutritionist to make sure I’m eating the right foods, but for now this is working for me.

Sasha is still a baby so I haven’t expected her to do much more than be a cute furball. But one day while I was working on my iPad, she came and positioned herself right in my lap. I had to move her over a little so I could work. She still stuck like glue to the left side of my body with her head on my leg or arm throughout the day. I thought she was just tired.

Then slowly my TN pain began to increase, until I had a really awful volley of attacks every few minutes. Sasha moved closer and closer to my face as the pain got worse. During one brutal attack she kissed me on the left side and I was so thankful. She actually understood I was in pain and where it was. She knew when it was getting worse. And all she wanted was to heal and comfort me.  

As I write this, Sasha is sitting right here next to me chewing on a rawhide pretzel. She brought seven toys up on the couch in case she gets bored with the pretzel and wants me to throw something. I take a break from writing to pet her and sometimes she will turn over and give me her belly to rub. Soon she’s going to get up and ring that bell to go outside in the light snow.

She is just the most beautiful thing.

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Jennifer Hochgesang lives in Illinois. Jennifer has multiple sclerosis, trigeminal neuralgia and vestibular migraines.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

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As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

(10/23/18 update: Carol reports the lidocaine infusion did relieve her pain for a while, but by the 3rd day, “I had some bad reactions that altered my reality perception, not what I would think of as hallucinatory but close cousin so we had to stop it.” Carol says she is very disappointed by the outcome, but it was “definitely worth the trying. And thank you to all who asked.”)

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

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Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Hold On Hope

By Carol Levy, PNN Columnist

If I didn’t know better, I would think the lyrics from Peter Allen’s 1976 song “Taught by Experts” were specifically for the chronic pain community:

I've been taught by experts in the art of cruelty
Now I'm giving lessons free
All it takes is three
I'll teach you to make friends with pain
Lesson number one
No it's not much fun
Never was much fun

That song feels like the story of my life, at least my life since the pain started.

After my last surgery, the doctor took photos of my shaved head and of the scars remaining from the 12 other neurosurgeries I’ve had for trigeminal neuralgia. Every one of them left visible scars, at least until my hair grew back.

Surgeries also leave invisible scars in our minds and souls. I would venture to say that, in one way or another, many of us have some level of post-traumatic stress disorder that will continue for as long as we have pain.

Recently I finished reading a book on chronic pain. The author gave many exercises and suggestions for ways to deal with pain. The exercises were geared towards ways to change how we think.  Many of the suggestions seemed to be variants of “Don't worry. Be happy.”

There must be a middle ground between “My life is cruel because of pain and I am consumed by it.” -- a thought that is hurtful and soul crushing -- and “I'll pretend it isn’t there and smile.” -- a falsehood that is equally destructive.

What is it that tethers us?

I think it is hope. Hope that the pain will get better, hope that a better, newer, easier treatment will be found. Or better yet, a cure.

And hope that in the interim we will still have access to the treatments and providers that helped us. 

Maybe these lyrics from “Hold on Hope” by Guided by Voices expresses it better than I can.

Every street is dark and folding out mysteriously
Well that’s the chance we take
To be always working, reaching out

For a hand that we can't see
Everybody's got to hold on hope
It's the last thing that's holding me

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

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I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Doctor, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

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A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

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Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.