CJ, TN Patient

Her Personal Story

Is my trigeminal neuralgia pain gone?  For patients who suffer from devastating disorders of the trigeminal nerve, those six words are a lifeline of hope that we cling to with grateful joy for any remission from this miserable demon.

My name is C. J. , and I’d like to share my TN experience with you as have many others before me.  As I read the stories written by TN patients on the national website, I cried.  Devastating, life altering pain expressed in simple, agonizing words we patients know so well -- shock, stabbing, electric-like, excruciating; pain that brings you to your knees.  We all know that trigeminal neuralgia has earned the reputation as being the WORST PAIN KNOWN TO MAN, and is a medical condition in which suicide is the number one cause of death.  Life altering is an understatement. 

My personal journey with trigeminal neuralgia began in January 1997 somewhat innocuously, as small intermittent shocks around the right side of my nostrils.  This was almost a year and a half after I had brain surgery to remove a benign pituitary tumor with an invasive procedure that uses a scope inserted up the nose and through the sinus cavity. 

For three weeks I continued to receive these peculiar, slightly annoying electrical sensations.  I brought this new occurrence to the attention of my physicians but no one knew what it could be, and almost as quickly as they came, they mysteriously disappeared.  At this time I already had an array of illnesses in the “not so popular” category, and little did I know that another such medical condition was lurking like a stealthy predator in my central nervous system.    

Without warning in October of 1999, the mysterious predator struck.  The electrical, tingling sensations I had first experienced in 1997 had been no predictor of what was now attacking my face.  The electric-like shocks began slowly as quick stabs and bolts of electricity.  As they increased, the shocks came in waves of intensity.  It hurt to breathe, to brush my teeth, to touch my face, to smile, to even eat. Caught without diagnosis or the appropriate medication to deal with the dreadful, disabling pain in my face, I reached out to a medical arena I had come to trust - CAM; complimentary/alternative medicine.

A local chiropractor who believed I could be suffering from a condition known as tic douloureux (TN), gave me auricular therapy (placement of acupuncture beads in the outer ear lobes), to curb the pain until I could be seen by my general practitioner and a specialist.  The pain control effects of this therapy lasted from one to two days, cost $25 per treatment, and of course was not covered by insurance.  The important point to make however is that IT WORKED!  It helped me manage the pain until I could access other medical resources. 

Later my doctor and a neurologist confirmed what the chiropractor had believed.  I had classic trigeminal neuralgia.  I was given chewable tegretol and tegretol extended release and sent to a reputable neurosurgeon in Portland, OR.  He recommended the Microvascular Decompression surgery (MVD) to correct what he believed was a compression of the fifth cranial nerve by a blood vessel.  He gave me some literature describing various surgical and other medical procedures used to treat TN, and I went home with my shocking face.

After receiving the diagnosis of TN and the recommendation to have another brain surgery, (as a person already living with four major illnesses), I did what I always did.  I panicked; I cried; I complained; ranted and raved between shocks and stabs of pain.  Then I settled down and did what my education and work experience had trained me to do.  I researched this illness extensively.   I read the medical and lay literature, and I directed a lot of questions to other TN patients and to physicians. 

As a result of my research and evaluation of the risks involved for me, I declined all surgical procedures.  Based upon my own personal beliefs and needs and my understanding of the disorder, I chose a non-invasive, integrated medical approach for the treatment of my TN.  Tegretol chewable and tegretol XR became my drugs of choice.  Later I would add Trileptal, Dilantin, lidocaine, and morphine to my arsenal of pain killers.  Eventually I began using topical medications such as capsaicin (red pepper), eucalyptus and peppermint oils.  All three of these topicals are natural pain analgesics.  My advantage in using these topicals is their immediate pain relieving quality, giving me short term pain relief without side effects while my prescription medication has time to take over.  I call this; “Using my front line foot soldiers while the big tanks are getting into position to kick butt!”   

Other CAM therapies I've used include acupuncture, craniosacral therapy, reiki, Chinese herbs, aromatherapy, heat and cold packs, naturopathic and homeopathic medicine.  Other than auricular acupuncture, I have not found acupuncture to be helpful for my TN, and I have tried it many times. I have also not had success with homeopathic or naturopathic medicine/treatments.  The other CAM therapies, including chiropractic and prescription medications help control the intensity of my pain, particularly with the dull, aching, and stabbing pain.  Not one of these treatments, however, including prescription medications, has been able to completely stop a shocking crisis once it has begun.  It usually has to burn itself out within two to twelve weeks, and then it levels off into a dull, stabbing pain which then eases to a low level of intermittent, dull aching.

What I must emphasize at this point is the highly individualized nature of pain.  Everyone is different, and I think most of us have come to the realization that what works for one TN patient may not work for another patient.  Again, we must all remember - including me - that because the nature, location, and intensity of one’s TN pain changes periodically, what may or may not have worked a year ago -- even six months ago, may or may not work the next time. That is why it is important that we and our practitioners continually work together to be ready and willing to adjust and re-adjust our strategies for pain control.

Even though I initially declined all surgical procedures, there came a time when my electric shocking pain became so unbearable that I considered Gamma Knife surgery.  During one particular episode in August of 2002 I was in a full blown crisis; my tegretol and other treatments were not controlling the pain, and in desperation I began calling Gamma Knife centers for information.  The fourth one I called was in Denver, and while talking with one of the staff nurses, I learned about the anti-convulsant Trileptal.  I immediately called my doctor for a prescription, and within three days of taking it my shocks began to lessen.  They did not stop completely but were controllable.

I flew to Denver to investigate their Gamma Knife Center, and during my flights I discovered an anomaly.  My shocks would continue and get worse at high altitude but upon decompression in the aircraft, the shocks would STOP COMPLETELY.  I didn’t think much about this until I flew again later in that same year.  The high altitude in flying would make the shocks commence, and decompression of the aircraft would stop them completely.  The dull aching and sometimes stabbing pain would remain, but the shocks would completely STOP.

While discovering the beneficial effects of Trileptal and “decompression in an aircraft” for my electrical shocking episodes, I also began to investigate a theory I had about my personal TN history. Having noticed for several years that my electrical shocking episodes began almost immediately following the onset of a sinus infection in August or January, I began to suspect there might be a connection.  I also suspected that the Herpes Zoster Virus (the chicken pox virus that causes shingles) and which has also been implicated in Chronic Fatigue Immune Dysfunction Syndrome (that I’ve had since 1994), might possibly be involved in my TN.  I approached my general practitioner with my theory and asked if we could run some tests to see if we could find a connection.  He agreed, and in May after the electrical shocks had subsided to a dull aching, we tested for the Herpes Zoster virus in my blood.  Over a two year period we tested my blood levels for this virus in May when I did not have shocks, and in August when the shocks would commence with a sinus infection.

The results were amazing.  When my TN was in what I call the, “dormant stage; non-shocking; dull aching pain; some stabbing”, the Zoster titers were only slightly elevated.  When the shocks would begin in August, the titers were highly elevated, and I had another sinus infection.  I was then placed on high dose Famvir (antiviral) to see if this medicine could effect any change in my TN.  That was in May of 2003, and for two years I experienced only one episode of shocking which involved my one and only emergency visit to a hospital for TN.  (I believe the shocks were triggered by dental x-rays.)       

I must say that even though there were no other shocking episodes during the time that I was on Famvir, the dull, aching pain persisted with some occasional stabbing.  I remained on a low dose of either Tegretol or Trileptal, and I continued with the CAM therapies.  In May of 2005 the drug program I was on ceased, and I could no longer purchase the Famvir, for it is very expensive and I had no prescription coverage.  The next month the shocks and stabbing began for a short time then subsided after flying and decompression in an aircraft, and I was left again with the dull aching.    

Then in February of 2006 an unusual pain episode struck without warning.  My TN crises historically had involved the maxillary nerve with occasional shocks in the ophthalmic nerve, and sometimes the mandibular.  In other words, sometimes I had two nerve branches involved but never all three.  This episode however, began at the top of my head and extended all the way to my chin.  I could not comb my hair or even touch it without agonizing shocks.  All three nerve branches were inflamed and firing electrical charges.  For the first time since my TN nightmare began seven years earlier my doctor prescribed liquid morphine.  I also used lidocaine for the dull, aching pain. 

I talked with my doctors about the previous aircraft decompression episodes and asked if a hyperbaric chamber might produce the same successful outcome.  They were not sure but thought I should investigate.  To my disappointment, the units in Portland and in Seattle both informed me that TN is not on their diagnostic treatment list and therefore not covered by insurance.  I found that treatment in a hyperbaric unit was expensive and out of my reach.

What did I do then?  I booked an overnight flight to Denver to decompress!  As with my past experiences, each flight decompression produced an immediate cessation of the electric shocks.  Residual dull pain remained, but the shocks disappeared. Unfortunately, shortly thereafter in April, I developed a cold and sinus infection which caused a brief return of the shocks for a few weeks.  From mid May through most of the year I was shock free with only dull, residual pain.   I knew the honeymoon was over though when quite suddenly and again without warning, tiny electrical shocks began to fire in early December.

Knowing the success I had experienced with decompression in flying, I asked a friend who is a jet pilot/instructor of small aircraft if he would be willing to take me up to an appropriate altitude to decompress.  After hearing the medical explanation, he agreed.  In the meantime, I told my chiropractor, Dr. Ron Kibert, who treats me for several medical conditions including my TN, about my plans.  He then informed me about a new therapy he had been investigating called ACTIVATED OXYGEN.

According to the manufacturing company it is a technology developed by European scientists to mimic a natural process that triggers rejuvenation in our cells, optimizes our body’s production of energy and improves both your health and physical performance.  Dr. Kibert said he was purchasing an ACTIVATED OXYGEN machine and urged me to try it before flying.  I followed his advice, and after only the second treatment of 20 minutes, to my joy and amazement the shocks stopped.  After a few more treatments the dull, residual aching subsided to a gentle purr.  This therapy is very patient friendly as well.  You simply place a cannula in your nose, as with regular oxygen delivery, and the machine is set for a 20 minute session at a delivery strength determined by the practitioner.  You then relax in a chair, or lie down, read, listen to music, or whatever makes you comfortable.

For me, what is so profound about the ACTIVATED OXYGEN THERAPY is the fact that no other treatment, other than decompressing in an aircraft, has been so successful in stopping my shocks after a true episode has commenced.  Exactly how or why this therapy has helped my TN, I do not know.  What I do know is how wonderful it is to be able to eat without the fear of pain, not having people stare at me while I moan and hold my face until the spasms ease, to be able to smile, laugh, kiss and hug people without wincing with pain.  My shocks stopped almost four months ago, and they have not returned.  I have minimal residual pain, and I only take 100 to 200mg of Tegretol XR daily.   

Most of us seasoned patients (aka: BATTLE SCARRED WARRIORS) know that during a pain cycle it's very difficult to make a well informed decision about any treatment; particularly invasive procedures that involve great risk and may or may not work. Because of my belief in an integrated medical approach for the treatment of TN, it is my personal opinion that an array of prescription drugs and alternative treatments should be available to all patients to help curb their pain until they can make an educated and fully informed decision involving ANY NON-EMERGENCY surgical/invasive procedure.  If I had not experienced previous brain surgery, had a weak immune system and other medical complications, yes, I might have opted for the MVD or Gamma Knife surgery.  Either one may have been very successful, but I am glad I had the knowledge thus the options to make a fully informed decision.  The medical philosophy that I personally believe in and live by is this: use treatments, medicines and therapies which do no harm or as little harm as possible to achieve a better state of health and well being while giving me the pain control that I need.

What I am offering to fellow patients with my story is more options.  THE ACTIVATED OXYGEN THERAPY is safe, easy to use, non-invasive, and inexpensive.  It has been working for me very successfully, and I will continue it indefinitely along with my tegretol, low dose Famvir (now that I have prescription coverage) and other CAM therapies, particularly chiropractic and craniosacral therapy. Whether or not it will provide similar pain control benefits for other TN patients is for the reader to decide.  As patients, it is important that we share information with one another, and that is the wonderful benefit of having support groups and the National Trigeminal Neuralgia Association which allows for such an open exchange of information.

If you are interested in learning more about ACTIVATED OXYGEN THERAPY or have questions about my experience with this or other therapies I have used, you can email me at the following address:  cjstory2007@yahoo.com

I wish you the very best success in coping with your TN.  We are soldiers all in our quest to cope with and conquer the pain that has no mercy.  May you all be blessed with courage and strength in your individual journey.

Posted 5-17-07