What’s Normal Now?

By Pat Akerberg, Guest Columnist

Trying to define what’s normal under any set of circumstances is tricky at best.  But whenever your personal version of normal has been hurled about and ripped apart by a medical tsunami, any sense of normalcy shatters.

Whether newly diagnosed or living with a progressive disorder, once our previous sense of normal falls apart, every unusual medical issue, complication or symptom that happens now begs the question: “Is this normal?”

That began in 2009 for me when trigeminal neuralgia (TN) hit. Then after a brain surgery to supposedly fix it failed miserably, my fragile normal collapsed like a house of cards. The disabling complications and surgical damage done forced me into premature retirement.

As my circumstances rapidly devolved, people tried to comfort me by defining the extreme changes in my world as my “new normal.” That likely comforted them more than it did me.

I’ve always bristled at the term “new normal” since TN struck. Why? Because “new” implies positive connotations of something fresh, without defects or problems. And the word “normal” suggests a typical or ordinary state that you can fit into.

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Sounds nice. However, trying to characterize a rare, debilitating medical disorder or painful condition as orderly is like trying shove a distorted square peg into a round hole. Plus, a progressive neurological disorder like TN doesn’t offer some future state free from a flawed quality of life. When the nerve damage invariably progresses, complications follow. 

Medical Reality

That’s why I prefer to term my changing circumstances as my “medical reality” instead.  That descriptor fits my state of affairs better. 

When my medical reality changed dramatically, I initially started questioning whether the limitations I was experiencing might fit some other version of normal out there.

Examples of my questions follow. No doubt you have your own. I wondered if it was normal to:

  • Cancel plans and miss important occasions because my pain is so unpredictable

  • Family and friends to focus on how I look (“You don’t look sick”) versus the invisible suffering I endure

  • Watch some of them drift away when I wasn’t getting better

  • Find myself having to explain or defend my medical reality more than I’d like

  • Have occasional “brain fog” that causes me to question myself

  • Become exhausted dealing with constant pain and lack of sleep

  • Need more help with some things when I never did before

  • Have priorities, interests, motivations or some facets of my personality change

  • Question how relevant I am or indulge in pity parties on bad days

I can attest that these questions can dig deep at the identity level. From my experience, the best answers to them don’t just pop up readily either. Instead you have to live into them – so they are believable… so they are yours. Making them yours is the point.

It helps if you are able to connect with others who share your medical reality. Then you can share, compare notes and support each other.

Hard Won Answers

At times even your own medical professionals may not be able to answer what might constitute normal in your case. Though they may have familiarity with your diagnosis, how it plays out may vary widely from person to person.

Working with a qualified counselor or therapist can also go a long way towards discovering what is true for you.  It helped reinforce that I’m the one who has my best answers.

These are two of my hard-won answers that work for me when I get frustrated by limitations:

  1. It is what it is… for now.

  2. When I can, I do. When I can’t, I don’t.

After a period of wrestling with a former healthy version of normal and a medically altered one, a personal clarity emerges – normal has become medically relative. 

What’s normal for your unique medical circumstances isn’t relative to anyone who doesn’t share that same medical reality.  And vice versa.

Eventually I concluded that it wasn’t helpful to question my altered state or try to measure up to an old paradigm of normal. That shift in mindset translated to permission to pursue a host of ways for me to compensate, accommodate and re-frame my daily living to better fit my medical reality.

The strategies that took shape from that shift are geared towards improved functioning and minimizing stress.  They lead to more realistic plans or expectations and pinpoint the kinds of help you may need.

Self Preservation Skills

As you work your way through normalcy questions into ways to redefine them, my experience has been that a more formidable self takes shape – one better skilled at self-preservation. Progress to that end doesn’t necessarily follow a linear or predictable fashion. 

The good news is that you learn to shift focus toward what’s within your control – and away from what isn’t. From this more fitting “work-arounds” emerge.

These proactive countermeasures act like seeds that create fertile ground for hope to take root.  While hope may not be a strategy on its own, it often provides the intangible fuel to press on.

One thing is certain – judging yourself as coming up short compared to some phantom reality definition of normal adds no positive value to your life.  

So, rather than submitting to bogus notions that medical deficits can reduce the measure of your humanity, give yourself kudos instead as your spirit and determination prevail over them. 

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Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.

We Are More Than Our Pain

By Carol Levy, PNN Columnist

I was referred to a neurologist who specializes in headaches. Trigeminal neuralgia is very different from a headache, but any port in a storm. I called to make an appointment and was told all new patients must agree to meet with a psychologist. If you refuse, you do not get the appointment.

This seemed like an inherent bias: Patients with head pain must have psychological issues. Does this mean the doctors are prejudging the truthfulness of their pain complaints?

Despite misgivings about seeing a psychologist, I made the appointment.

A few weeks later, the neurologist admitted me into the headache unit of the local hospital. Everyone in the unit had to have a one-on-one meeting with the psychologist.

“Tell me about your life,” she said.

I told her the most salient fact: “I am essentially alone in the world. My family abandoned me decades ago. And when you don’t work it is hard to make friends.”

Her suggestion: “You should go to counseling. They can teach you how to make friends.”

Well, there's a good idea. Except...

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Before the pain started, I had no trouble making friends. Since the pain is a different story. Trying to make friends is hard when you don’t have the glue necessary to start a new relationship. I never married and I never had children because the pain took that part of my life away from me.

At my age, a senior citizen, that is often the opening question when you meet new people: “Are you married?” or “How many grandkids do you have?” No and none.

“Do you work? Are you still working?” Again, no. I haven't worked in over 40 years because of the pain.

If I am honest and say, “No to all of those. I have been disabled by a pain disorder since 1976,” the response tends to be a mouth falling open, followed by “Oh, I'm sorry.” Or a somewhat glazed look and a turn away to speak with someone else.

How do you overcome this? I haven't a clue.

But it started me thinking. When, if ever, did any of my doctors ask, “How are you dealing with this?”

I see this often mentioned in support groups: “My doctor never seems to have the time or the interest to find out about me, about how this is affecting my life.”

I am not sure if they don't ask because they don’t care or because it is something they can’t treat with a pill. Maybe they are afraid of hearing the truth for too many of us: “I'm not dealing well with it.”

Isn't part of being a healer taking the whole person into account? Doctors have precious little time to spend with us. Maybe they should take a few extra minutes to learn about the essence of who we are and what the pain has done to our basic core.

There is no medicine or surgery for the effect the pain has on our lives. But being able to say, especially to our doctors, what it has taken from us could help others see us as something more than our pain.  

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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: 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.