Itchin’ Ain’t Bitchin’

LUPUS & Urticarial Vasculitis     julies-rashes

Incessant relentless ITCHING

UV that causes HIVES & wheals

& Skin that burns and bleeds

Add to our Lupus & Chronic Needs-

Urticarial Vasculitis

Urticarial vasculitis is a form of vasculitis that affects the skin, causing wheals or hives and/or red patches due to swelling of the small blood vessels.

What causes Urticarial Vasculitis?

The cause of most cases of urticarial vasculitis is unknown. It may be associated with a number of diseases, especially systemic lupus erythematosus, rheumatoid arthritis and Sjögren’s syndrome. Some cancers, including leukemias, colon and pancreatic, and infections like Hepatitis B and C can cause this form of vasculitis. So can some drugs, including antibiotics, ACE inhibitors used for treating high blood pressure, and certain diuretics.

How common is it?

Urticarial vasculitis is uncommon. There are no well researched estimates of how frequent it is.


The most common symptoms are hives that cause itching, pain and a burning feeling. Skin patches often are red-rimmed with white centers, and unlike common hives may have petechia, or bleeding under the skin. The patches can be present for days and result in skin discoloration as they heal. Some patients may also have fevers, joint and abdominal pain, shortness of breath and swollen lymph glands. Sometimes urticarial vasculitis even causes injury to vital organs including the gut, lungs and kidneys.


Diagnosis is based on characteristic patches in the skin. Sometimes a biopsy is ordered to show inflammation in the skin and damage of small blood vessels with white blood cells. Since it’s often associated with a number of different diseases, it’s often necessary to do other tests and exams to rule out underlying conditions like lupus erythematosus or cancer. Tests of vital organs may also be indicated, especially when the blood levels of complement are low.


Treatment depends on the extent of symptoms and organ involvement. When levels of complement are normal and there is no internal organ involvement or underlying disease, the symptoms may improve on their own or with minimal treatment. In this case, antihistamines or nonsteroidal drugs such as ibuprofen or naproxen may be helpful. For more severe cases, other drugs which affect the immune system may be needed, such as corticosteroids (prednisone, others), hydroxychloroquine, colchicine, dapsone; and chemotherapies like azathioprine or cyclophosphamide. Treatment may be intermittent, although it is not uncommon for patients to need treatment for several years.

What are the complications?

The most common serious complications are skin pigmentation and, occasionally, skin ulcers, plus damage to organs such as the lungs, eyes and kidneys.


The natural history of urticarial vasculitis depends in part upon the blood complement levels. In cases where these are normal, the prognosis is generally good. In cases where the complements are low, the disease may be more severe. When urticarial vasculitis is related to a disease such as lupus or cancer, its prognosis is often governed by the prognosis of the underlying disease.

It Happens Like THIS:

What is a Hypersensitivity Reaction?

In our case, when we are exposed to Ultraviolet – Antibodies & Immune Complexes Are Triggered & Cause a Hypersensitivity Type 3 Reaction:

My Personal Experience With Urticarial Vasculitis

Those rashes up there are all mine.  They all ITCHED horribly, a deep DEEP intractable painful burning type itch that could not be relieved.  Like a friend said, like poison ivy times 100.  On several occasions my arm tingled and I had some muscle weakness.  I get mine with hard nodules under my skin- you can feel them, hard lumps right on the itch that hurt when you touch or press them.

Mine are always activated by UV exposure.  I live in the desert where the summer months are killer-and I spend most of my time indoors to avoid lupus flare ups.  But it always gets me!  I have double blackout drapes on my windows and that makes me pretty safe indoors-but noone can stay indoors ALL the time!

I almost always flare with the urticaria combined with uveitis (inflammation in the iris of eye), nose sores & mouth sjulieeyesores and my malar rash becomes prominent.  Sometimes I get low grade fevers and fatigue with the reaction.

My rashes respond pretty well to betamethazone steroid cream and usually 40mg of prednisone for a few days with an immediate taper down to 0.  I take plaquenil and cellcept to control my lupus on a daily basis and it works well for me.  I’m extremely lucky that my rashes usually start healing after 24 to 48 hours.  Sometimes I end up with discolored skin (see above photo on left).  Sometimes I end up with skin so hard on my face-it looks like I’m getting a chemical peel!  The skin underneath is usually fine.

malarrash - Copy

Malar Rash

I’ve had rash reactions that don’t stop at lupus or urticaria- I’ve had autoimmune pemphigus rashes like this one on the back of my neck- and I get malar rashes like most lupus patients do!  But I always recover!  😀

If you have any questions- feel free to ask!  I’m happy to help!

Best to You!  JJ


My Pemphigoid Rash

My Pemphigoid Rash

More Urticaria Vasculitis Info-explained by Dr Donald Thomas, author of “The Lupus Encyclopedia “.  You can follow him on twitter at @lupuscyclopedia 

Urticarial vasculitis is a less common form of vasculitis seen in people who have lupus. The areas of vasculitis look similar to hives (the medical term for hives is “urticaria”).

The skin lesions of urticarial vasculitis are typically slightly raised areas of skin that are tender to the touch. When they heal, they often leave pigment changes on the skin. Usually a skin biopsy is required to diagnose urticarial vasculitis accurately.

Doctors usually check SLE patients who develop vasculitis for substances in the blood called cryoglobulins. “Cryo-”comes from the Greek word for “cold,”while “globulins”refer to antibodies. These particular antibodies precipitate and clump together with cooler temperatures.

 “Precipitation”is a scientific term meaning that a substance in a liquid solidifies; for example, if you warm up a pan of water and pour in a bunch of salt, the salt dissolves in the water. When the water then cools down in the refrigerator, salt begins precipitating out of the water as salt crystals on the edges of the pan. What happens in people who have cryoglobulinemia (cryoglobulins in their blood) is that the cryoglobulins can clump together and precipitate in parts of the body that are cooler than other parts.

This may occur in the cooler skin of the legs, causing bruised appearing areas and inflammation of the blood vessels (vasculitis). Doctors treat this condition with high doses of steroids along with immunosuppressants. Sometimes doctors have to use a special type of treatment called plasmapheresis, which removes the cryoglobulins from the blood. 

Sometimes vasculitis of the skin can occur along with vasculitis in other organs of the body such as the kidneys.

Therefore, if you develop the symptoms of vasculitis, it is important to see your doctor immediately to make sure this is not the case.

Most of the time, cutaneous vasculitis occurs by itself, without involvement of internal organs, but it is important that your doctor checks you thoroughly, especially the first time it happens.


INCUMI: Great Chronic Pain Doc/Patient BlogPost


Stigma: Opioids, Addiction & Chronic Pain via @NatPainReport

Editor’s Note: This is the first in a two part series on the stigma of chronic pain. This focuses on the chronic pain patient. The second installment features the stigma of being a pain physician. We invite your comments.

These are challenging days. Persons who suffer with chronic and intractable pain are facing widespread public misunderstanding of the difference between physical dependence on a drug to treat addiction and a chronic illness.

Physicians and policy wonks are just as confused. Prescriptions are reducing but deaths are increasing. Despite the fact that addiction in persons with chronic pain is consistently reported at less than 4% of the population of patients, many fear that anyone taking opioid medications is at risk for addiction, leading to behaviors associated with overdose, suicide, or other negative outcomes. Physicians who prescribe for complex patients are being stigmatized by their peers as ‘aberrant prescribers.’

The selective misapplication of scientific reporting is leading to the revision of treatment protocols using addiction guidelines. Some consumers successfully rely on protocols that use a combination of nonpharmacological methods or medical marijuana where available. It should go without saying that most consumers who depend on controlled substances for palliation are restricted by choices related to payor sources, or have failed many prior treatment protocols, settling on prescribed opioids used alone or in combination with other adjuvants.  Consumers who find themselves facing removal of successful treatment protocols without alternatives, legitimately fear that the public cure for addiction will force out individual consequences and treatment more harmful than the use of controlled substances.

The language we use frames what the public thinks about substance use and recovery. It affects how individuals think about themselves and their own ability to effect change or assert control over treatment outcomes. It is important to clearly understand the terms used to describe this problem.

Addiction is a neurobiological brain disease that has genetic, psychosocial, and environmental factors.  It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug

Chronic pain is pain that results from a discrete event, that lasts for more than 90 days without resolution. It ranges from mild to severe and is in many cases, associated with a progressive underlying disease process. Intractable pain is distinguished by measured changes to one or multiple organ systems that occur as the result of prolonged, undertreated chronic pain.

Physical dependence is the body’s adaptation to a particular drug. In other words, the individual’s body gets used to receiving regular doses of a certain medication provided for a specific and legitimate purpose. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms while the purpose for which the drug is prescribed is still present.  A number of other drugs not associated with opioids or addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms when stopped abruptly.

Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage, switch to another type of medication in order to maintain pain relief, or employ an adjunctive therapy.

Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient’s pain is effectively treated.

Stigma refers to the negative attitudes expressed by members of the community, including healthcare professionals, that result in discrimination and devaluation of the individual solely because of their characteristics. Appropriate use of language in is important. Inappropriate use of language leads our thinking and expectations and can negatively impact the way society perceives both addiction and chronic pain.

Negative labels impose the mark of deviance that deprives people of individual qualities and identity.  Stigmatizing labels cause us to explain away illness symptoms through beliefs that have nothing to do with the facts of the person or the causes for their chronic illness or addiction.

Assigning ‘marks’ and ‘red flags,’ we employ labels to deny the real conditions of daily life for persons living with chronic pain. Professionals are trained to believe that ‘catastrophizing’ is an aberrant behavior associated with drug seeking, rather than understanding that it is a plea to be taken seriously as a person who is under treated for pain. Pain attributed to ‘somatoform disorder’ becomes the ‘mark’ of psychological illness rather than an indication that the physician has failed to pursue a diagnosis because they have misinterpreted your symptoms by exercising their own faulty beliefs. A person who drives more than 50 miles to fill a prescription may not have access to a provider who will take their insurance, may lack access to a pharmacy that will stock their medications or absent insurance, accept cash.

Stigma is harmful, distressing, and marginalizing to the individuals, groups, and populations who bear the burden of negative labels. It also results in misdiagnosis, wrong diagnosis and under treatment. It may lead the provider to select the wrong treatment protocols resulting in treatment failure or patient harm. It may result in the consumer losing any confidence in the possibility of establishing a healthy working relationship with providers.

At all levels of this discussion, we must employ safeguards to protect patients from the inappropriate use of stigmatizing language – through our guidelines, our interpersonal interactions, and our public language.  Now more than ever, we must resist the use of the ‘mark’ to dictate how we deliver competent healthcare.

Editor’s Note: Part Two will feature Dr. David Nagel.


Part Two:The Stigmatized Pain Doc

Editor’s Note: This is the second of a two part series on the stigma of chronic pain. This installment features the stigma of being a pain physician. The first installment, written by Terri Lewis, PhD look at the stigma from the patient point of view. We invite your comments.

Stigmatization is alive and well in the world of chronic pain.  In fact, the motto of the Pain Action Alliance to Implement a National Strategy (PAINS) is to “de-stigmatize the stigmatized.  The reasons for stigmatizing the person with chronic pain are way too simple.  They have a problem which defies all treatments and reasonable “objective” explanations.  In so-doing, they are a thorn in the side of medical theory.  Rather than accept that the square peg the patient presents does not fit into the round hole of our theory and re-working our theories, we blame the patient for their problem and abandon them.  If you have a problem you can’t handle, what better way than to be rid of it than to ignore it or sweep it under the rug.


Unfortunately, the problem is still there, festering.

Those who suffer from pain are fully aware of what I just said.  That is not what I was asked to write about, though.  I was asked to write about the stigmatized pain management specialist, something that is becoming an out-sourced, dying breed.  In thinking about this, I am reminded of an old joke I heard in college:

Q:  How many pre-meds does it take to screw in a lightbulb?

A:  Two.  One to screw it in and the other to kick the chair out from under the first pre-med’s feet.

For our discussion, I would replace pre-med with “people” and the answer with 19;  that being one becoming a pain management doctor and the other 18 various entities in our society which are more than willing to take him or her down.

Very early in my physical medicine and rehabilitation training, in 1986, I was confronted with a patient with chronic back pain.  He’d been surgically mutilated 5x, and the surgeon responsible for the 5th “wanted my expertise.”  In reality he just wanted to get rid of the medical “hot potato,” one way too hot for him to want to hold.  When I first met the patient, the surgeon welcomed me with open arms and thanked me for my service to humanity and all sorts of other things.  The patient was in absolute misery.  What the surgeon neglected to tell me was that when they placed the pedicle screw, they put it right through the nerve root.  I found this out later from someone who preferred to remain anonymous.  It was not the patient that was “screwed up.”  In 1986 it was definitely not cool to prescribe opiates.  My mentors told me not to do it.  However, Kathy Foley and Russell Portenoy were just starting to challenge that paradigm, first for end of life care, then for chronic pain.  I read their article published in 1985.  I had nothing else to offer this man.  His spine was a mess.  His nerve was destroyed.  So I defied the sages and started him on opiates.

Two things happened.  First, the patient got better functionally.  Second, the surgeon and his entourage returned to chastise me for addicting him to pain medication.  I recall informing them that they had turned the patient’s care over to me.  Obviously they had not done such a great job, so I thought other directions were in order.

Nothing in life is ever that simple.  I saw this man as someone who’s life was in jeopardy and cost/benefit assessment demanded extraordinary steps.  So I did something which I believed to be extraordinary.  Short term success is not always maintained in the long term.  As Dr. Portenoy has said, there is a sub-set of patients who can do well with long-term opiates management and there are others who can’t.  Vigilance by all is necessary in making this determination, and not a little bit of courage.

Unfortunately, this scenario plays itself out every day in the world of pain management in so many different ways and for several reasons, and not just related to opiate management.   While many are thrilled someone would be willing to care for these medical pariah’s, they or others in our culture are more than willing to criticize or, much worse, punish the doc when he or she fails to follow societal expectations or the pre-conceived notions of those who choose to criticize.

Why does this happen?  For four basic reasons:

  • There is no universal understanding of chronic pain.
  • There is no universal solution to the problem ;  in fact, there is no solution
  • There is no universal definition of what chronic pain management actually is.
  • A Physician is judged how well his judgment follows the evidence base.  What happens if there is no reliable evidence base?  What happens if a problem is so complex that that it defies study? Who defines what the reliable evidence base actually is.

I explore these issues in detail in my book:  Needless Suffering; How Society Fails Those with Chronic Pain (University Press of New England, 2016).

I would like to close with an illustrative vignette.  A few months ago, I had a conversation about the opiate abuse epidemic with a local sherriff.  The big problem in our state is heroin.  I am scratching my head trying to remember the last time I prescribed heroin, and I just can’t seem to remember ever doing it.  Still, he blamed all those bad pain docs and the pain patients.  He told me that it is too bad they couldn’t just suck it up and deal with like they did in the old days.  He seemed oblivious to the fact that patients have been using opioids, cannabinoids, alcohol, and other things for millennium, totally un-regulated until the past 150 years, often under their own supervision because they were unable to receive care.  John F. Kennedy used Demerol and Valium to control his pain while president.  The attitude of this sheriff, which was based on his pre-conceived notions, is rampant in our society.  Unfortunately, many with this attitude occupy a position in which they can control the behavior of others.  Somewhat fortuitously, the next day a police officer arrived in my office suffering from severe pain due to a herniated disc.  He was unable to receive any medication to allay his suffering.  He told me: “I will never again question anyone’s pain.”  In retrospect, I wish I had given him the name of the sheriff and suggested he have a conversation with him.

The true morbidity and mortality from chronic pain, whether treated or not, are not known, but staggering and dwarf that due to prescription drug abuse.  Public policy must be balanced and respect the problems created by both.  However, stigmatizing those who suffer and those who minister to them is counter-productive and must be stopped.  It is exciting that the National Pain Strategy (NPS) addresses many of these issues.  I pray for its success.

Part One:

Part Two is here:

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How To Find a New NORMAL & Change Your Game!

What you once took for granted (walking, working, taking care of family & yourself) can suddenly become difficult when faced with any chronic disease & chronic pain.  What you once did effortlessly can start to look like a mountain to climb when managing illness-so what do you do?

Well, first you examine your status honestly.  You assess your abilities. Here’s some of those questions you may be asking yourself-and some suggestions to help you find a NEW GAME to make them happen!  After all, life isn’t going to stand still-the kids still need to eat, the house still needs cleaning & stocking, and very likely-this means you MUST adapt.


Can you work, but not reliably?  You may not be able to punch a clock any longer-but you’ve got some energy and love for keeping some part of your career in your life? You HAVE OPTIONS but you must make them happen!  They aren’t going to come to you-you must prepare!

You may want to apply for social security disability.  You are entitled to the money you put into the system if you can no longer work or earn what you used to because of chronic illness.  You can apply even if you still work as long as you do not make over $1020 monthly. It’s time-consuming but do-able.  You can apply online at  You don’t need a lawyer to apply-and most lawyers actually want to wait until you get your first denial to take your case-so applying is the first step.  Remember-this isn’t an easy or immediate solution.  This is thinking ahead for your future-it may take up to 3 years to get approved (no guarantees either) but stay vigilant. It’s usually a matter of WHEN, not IF that you will be awarded SSDI. So hang in there-and get started!

Now that your thinking long term-you can think short term.  What about NOW, what about the sick days, the doctor appointments, the unreliability factor in your work or job performance & attendance.  Well-I suggest take it head on.  Ask for part time and keep records of your physical health and lack of work ability.  This will be important to your SSDI case if you have applied.  

Asking for less hours is a necessary tool to keep your stress levels down and your disease symptoms minimized.  It’s a MUST.  You may end up surprised that working less hours brings you better health management.  If you can take your work home, ASK!  You never know unless you bring it to your boss’s attention-if you are working in an occupation that you can be productive from home-making your own hours can take away that issue of not being able to do a 9 to 5!  It’s always worth a try!  If possible, you may want to consider working as an independent contractor-this way you can continue your work at your own pace-and from home, where it can be much easier to manage your health, it keeps you in the career you love, and continues to bring in an income!  If there was ever a time or reason to give being independent a shot, THIS IS IT! If the company you work for or your occupation doesn’t offer a “work from home” alternative-maybe spend this time looking for one.

For immediate financial needs if you reduce your hours or find yourself out of work due to health issues is to apply for state help.  Food stamps are usually available on an emergency basis, you can apply online in most states and many cities have community services that might be able to help pay rent and utilities.  Churches and synogogues can be very helpful assets as well.  You may be able to find roomates to share expenses, caregiving opportunities or bartering options!

Once you’ve got your long term and short term financials down-it’s time to manage your home, your family and your disease.  Once again, you’ve got to change your game!


Get your doctors and specialists in order.  Make a folder for all your medical records (labs, doctors notes, etc) and keep it updated. This is two-fold. One-it will be necessary for your disability case later on, and Two-you can better coordinate your healthcare this way.  Bring your newest labs, tests, dx’s & list of meds to all your appointments.  This shows your docs you mean business and your taking your care seriously.

Ask questions!  If you need better pain control, it’s time to get that referral to a pain management specialist.  They can offer ways to manage pain that go beyond simply taking medications. There are procedures, cortisone shots, nerve blocks, and surgeries that can make your quality of life BETTER!  Now’s the time to take care of YOU!

Get all your specialist appointments caught up, see your general practitioner and get all the referrals you need to your specialists!  Now is the time.  Again, this will help you manage your chronic disease & give you the paperwork and info you need for your disability case.  Remember ASK QUESTIONS at your appointments!  If you are undertreated, or suffering, SAY SO, and ask.  It might be time to change your medications!  If your not feeling that your doctor is “on your team”-FIRE HIM/HER!  Docs are like night & day.  A good fit is very important. It can mean the difference in your attitude, your pain level, the very basis of how you feel about your disease can change with better quality control of your healthcare. Make those good choices NOW!


Time to manage your household.  The players have changed so your game must change too!  You must try to take control of the house by managing your time and abilities!  DELEGATE CHORES!  It’s all about the organization of the household and family working as a TEAM!

Cook meals in advance if you can and freeze them for another day.  Take your time preparing meals, doing the prepwork in stages.  (Cut up the veggies, then go sit down.  Go back & do some more, etc)  Get family to help out with the everyday homecare things like washing clothes, putting them away, walking the dog, doing the dishes, straightening the house!  You can no longer do it all.  You can even arrange a meeting with family and your doctor to discuss what he/her thinks of your abilities-having a knowledgeable professional to relate your needs to your family can go a LONG WAY!  This could be your doctor, your parents, anyone other than you!

It’s all about QUALITY OF LIFE and FINDING that QUALITY!   You may still be able to do the things you love, keep the career you’ve worked so hard for and wanted but in a different way!  You won’t know until you try, and you really have no choice if your taking care of a family!  Make it easier on YOURSELF!  You deserve it!


THRIVING With Invisible Illness

What is the meaning of motivation to YOU? What is the real difference between “living” and “LIVING!”? Tala hit’s these face on! Don’t miss this blogpost!

Tala's Tracks

I have to keep talking about this two-sided coin.  I will advocate all day long for autoimmune and neurological patients deserving compassion, respect, and accommodations for their health conditions, and I am going to advocate for all of us to reach for as much as we can grasp in our lives as well.  We live in a very strange zone that is unique to our very unusual health profiles.  Most healthy people that we encounter are going to have a very difficult time understanding it initially.  Some may never “get” the half of it.

I was very invested in watching Steve Irwin’s programs before his tragic death.  His vitality and energy, and the sheer joy you could see it sparked in him to interact with nature the way that he did was just so amazing.  He took chances that made me cringe at times, but I can’t be any more critical of…

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Why Can’t You Work? – Invisible Illness From the Inside

Especially relevant blog from Tala during this time that Lupus is the talk of the town- with Selena Gomez coming out with her lupus & chemotherapy for the disease.

There isn’t a one of us with autoimmune disease that hasn’t struggled with some of these issues. Tala nails em with eloquence & fortitude. Don’t miss this one!

Tala's Reflections

I’ve been mulling over how to address this very directly for a few weeks now.  As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out.  If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry.  If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today.  PLEASE.

I want to encapsulate as much pertinent information as I can here.  It does however require some insights that may be…

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What Happens In The Vagus Nerve Should STAY in the Vagus Nerve!

glossandvagusCranial Nerve Party Showdown-Vagoglossopharyngeal Neuralgia & Me

I know it sounds foreign.  It’s unlikely, unusual, and uninvited, yet I’m going to try and make it understandable.

There are a ton of different kinds of neuropathies.  There is diabetic neuropathy, which usually involve the extremities (hands and feet) since the small nerve fibers are located there and it is farthest for the nerve to travel.  There are neuropathies that involve the nerve being entrapped. (like carpal, tarpal, ulnar-tennis elbow & lots more) and these have multiple causes, like pinched nerves, sports injuries, blood vessels pressing on nerves, inflammation in muscles or nerves, and chronic conditions that effect nerve and muscle health, like muscular dystrophy, multiple sclerosis, lupus and more.

And then there are cranial neuropathies.  We have ten cranial nerves located on each side of our brainstem,  These control specific nerve & muscle functions.  They look like THIS:

cranialnervechartThe Glossopharyingeal Nerve is Cranial Nerve 9 and it is in very close proximity to Cranial Nerve Ten- The Vagus Nerve.  Many people have heard of the Vagus nerve, especially that overstimulation of it can cause syncope or fainting, and possibly heart flutters, pain on one side following path from brainstem to jaw and down one side of the body, it can affect abdominals, ingestion/constipation/metabolism and other autonomic functions as well as peripheral nerves and muscles.

The Glossopharyingeal Nerve, Cranial Nerve 9, controls function of the throat, taste, skin sensation, salivation and can affect the area with pain from inflammation or entrapment.  (It’s a nasty nerve)  When it is angry-it can feel like lightning bolts or burning in the ear, jaw, back of throat and neck.

Occasionally the two cranial nerves get together and go whack.  This is what has happened to me.  Two days after one of my regular radiofrequency ablations in my cervical spine (for radiculopathies, disc herniations and damage) it started.  I’ve since had about a half dozen flares, all of different intensities and time lapse.  I will attempt to describe it here:

I was minding my own biz, watching tv & commenting with hubbie when “ZAP ZOWIE WTH is THAT, STOP STOP STOOOOOOOOP..happened.  A burning zapping pain hit me in the back of my throat, to my ear, and traveled to my right jaw, my neck and down the side of my chest, over my chest to the left side and would NOT let up!  At first I thought it was a TN attack in the ear (which is actually called geniculate neuralgia), but I knew it was different.  I grinned and beared it for about five long minutes that felt like an hour, grasping my jaw and my ear and my chest..but it would NOT let up.  I started to get scared…I said to myself “it feels like a nerve but its pulling and burning at my heart”.  I was in a deep sweat and could not lift my head from the pain.  Hubbie said LET’S GO.  Practically threw me into the car and he hightailed it to the ER.  I was still slumped over holding my chest and neck.  It had NOT stopped!  “What’s wrong with you” the nurse asked..Heart attack?  I answered.  More of a question than an answer.

They took me in, did my vitals, hooked me up to an IV & heart monitor, sent me in for cat scans and because of my lupus did a dozen tests I didn’t need- $13,000 worth.  The pain finally subsided (I assume it was thanks to the morphine drip and the nerve letting up) but Boy Oh Boy Oh Boy was that scary!  

What tipped off the docs finally that it was the Vagoglossopharyngeal Neuralgia?  I had a much lowered blood pressure than my usual.  It stayed at 75/55 for the first hour in the ER.  I had uncontrollable sweating.  Both autonomal system fails. I had (tmi) superfast metabolism & bowels.  

After the initial attack I had 4 more of varying degrees in the next ten days.  None were as bad as the first.  This time I knew what it was and promised myself and hubbie that if it lasted more than five minutes I’d go to the ER.  They let up in time. Thank goodness.

Things to keep in mind: Docs don’t go from zero to rare diagnosis very well.  They don’t “think rare”.  They didn’t go there even when I gave them my history of cranial neuropathies I’ve had flares of. (trigeminal neuralgia, geniculate, temporal arteritis, burning mouth syndrome and repeats of bells palsy).  So bear with the doctors, but make your history known-

I have no idea if this will happen again.  My doctors suspect that the cervial radio frequency ablation of nerves caused inflammation to the nearby cranial nerves-specifically the vagus nerve and glossopharyngeal.  In two weeks I go for the other side radiofrequency ablation.  Let’s see what happens!!!!  (mind you I’ve had these procedures for last six years without much incident)

In my case, I already have mononeuropathy multiplex (fancy for multiple nerve entrapments) so we know I have flare ups in blood vessels that press on nerves.  If you are experiencing any of these symptoms I’d see your doc, don’t assume anything, and get a referral to a neurologist who can do MRI’s and MRA’s to confirm and prescribe anti-seizure meds that may help you.  (& get a good pain mgmt doc!)


Here’s some info on Vagoglossopharyngeal Neuralgia from

Glossopharyngeal neuralgia, or vagoglossopharyngeal neuralgia, is a cranial nerve hyperactivity pain syndrome leading to severe, transient, sharp pain in the ear, base of the tongue, tonsillar fossa, or beneath the angle of the jaw corresponding to the distributions of the auricular and pharyngeal branches of cranial nerves IX and X. Swallowing, chewing, talking, coughing, or yawning commonly trigger this pain. These painful attacks are neuralgic and therefore paroxysmal, lasting for less than a second and as long as a few minutes. Recently the International Headache Society proposed a subclassification of GPN that includes classic and symptomatic forms. In the classic type, the pain is only intermittent with no underlying cause or associated neurological deficit. The symptomatic type includes the same characteristics of the classic form; however, the aching pain can persist between neuralgic episodes, and sensory impairment can be found in the distribution of the above nerves due to structural lesions.[20] This classification does not take into consideration associated syncopal events. Neoplastic processes causing symptomatic GPN are usually malignant and tend to affect the nerve at its extracranial segment, in contrast to TN caused by benign tumors in the cerebellopontine angle in 5%–8% of cases.[4]

Infectious and inflammatory processes may also lead to GPN. Multiple sclerosis is rarely the cause of GPN, but is the cause in as many as 3% of cases of TN.[4] The pain syndrome of GPN can be very similar to that of TN, leading to a misdiagnosis if a thorough history is not obtained. The tracts of trigeminal, glossopharyngeal, and vagus nerves have an intimal neuroanatomical and functional relationship, and overlapping symptoms are not uncommon.[33,38,50,65,71] However, GPN and TN do not usually occur simultaneously.[6]

Glossopharyngeal neuralgia is a rare entity, representing only 0.2%–1.3% of facial pain syndromes.[8,16]The overall incidence of GPN in the population is estimated to be between 0.2 and 0.7 per 100,000 people per year.[29,36,44,54] This incidence is probably underestimated due to insufficient awareness of this condition. Glossopharyngeal neuralgia is more common on the left side (left:right ratio of 3:2), but TN is more common on the right (right:left ratio 5:3).[29] Bilateral involvement (usually sequentially and not simultaneously) is more common in TN (4%) than in GPN (2%).[4] Glossopharyngeal neuralgia can lead to bradycardia and loss of sympathetic tone, and therefore syncopal episodes and even seizures occur in as many as 10% of the cases. In rare cases GPN can present as syncope with no associated pain syndrome,[49] making the diagnosis even more difficult. Like TN, GPN is treated using anticonvulsant medications, but this latter condition tends to be more refractory to medical therapy, especially in patients with vascular compression. Pain refractory to medical therapy and poor tolerance of drug side effects are common indications for surgical intervention.

And from

Glossopharyngeal neuralgia (GPN) is also called vagoglossopharyngeal neuralgia. It is characterized by brief but intense pain on one side of the throat, which may radiate within the mouth or into the ear. Attacks are described as sharp, stabbing or burning in quality. They may occur spontaneously or be provoked by talking, chewing, swallowing, coughing and yawning. Some sufferers also describe other sensations in the throat such as clicking, scratching or a foreign body sensation. In rare cases the pain may become associated with fainting (or syncope).

     This disorder is similar to trigeminal neuralgia, but involves the glossopharyngeal and vagus cranial nerves (also called the IXth and Xth nerves). Like trigeminal neuralgia, GPN initially includes periods of remission that over time decrease in duration, while the severity and frequency of painful attacks increases with time. A diagnosis of GPN is also established on the basis of a clinical history and normal neurologic, dental and MRI findings. Unlike TN, carbamazepine and other medications are generally less effective in controlling pain and are not typically used as a diagnostic test. Applying anesthetic solution to the affected area of the mouth or throat which may temporarily alleviate the pain, and has been proposed as a diagnostic test for GPN.

     Three forms of GPN can be distinguished: Typical GPN, Atypical GPN and Secondary GPN. Typical GPN is usually caused by vascular compression of the IXth and Xth cranial nerve rootlets entering the lateral medulla. Atypical GPN involves a prominent associated aching or burning pain in the involved side of the face. Secondary GPN is caused by a tumor injuring the glossopharyngeal nerve in the neck or base of the skull (see Cranial Based Tumors). GPN is rarely associated with multiple-sclerosis.

At Least as Important

Lupus Power Blog by T- She hits the mark again with her honest look at managing chronic illness. She digs a little deeper than most-and acts on it bringing clarity to most of us who are not as adept at talking about our illness and the feelings it elicits. TY T! 😀

Tala's Tracks

I’m going to start this post off with a bit of a nerd insert.  It’s part of the dialogue between Cptn. Kirk and his son in Star Trek II: The Wrath of Khan.

David: Lieutenant Saavik was right: You never have faced death.

Kirk: No, not like this. I haven’t faced death. I’ve cheated death. I’ve tricked my way out of death and — patted myself on the back for my ingenuity. I know nothing . . .

David: You knew enough to tell Saavik that how we face death is at least as important as how we face life.

Kirk: Just words.

David: But good words! That’s where ideas begin. Maybe you should listen to them. [hesitant] I was wrong about you . . . and I’m sorry.

I debated whether to post this on Tala’s Reflections – my first blog – or here… I think here is…

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