Bill Hare , TN Patient

His Personal Story

I am a 73 year old retired man living in New Braunfels Texas. My TN was first diagnosed by a endodontist in November of 1995. I was 61 at the time. I am almost sure now, what the cause of my TN was. I am not smarter than the medical doctors who have treated me but I have paid very close attention to the pain and effects of what TN has done to me.  I have done an awful lot of reading in the past 10 years on the subject which includes all of the medical papers I could get my hands on, including letters from doctors around the country, including the Mayo Clinic.  Also, I have talked to 100's of people who have suffered with this vicious nerve disorder, who were mainly members of TNA support groups. I also have 3 notebooks (binders) full of TNA news letters from support groups. These newsletters contain many quotes from doctors and sufferers on the subject of TN.  I was instrumental in starting the first TNA support group in Texas in 1996 (Hill Country TNA Support Group)   At our peak attendance we had above 30 to come from places as far away as San Antonio, and even Del Rio. About 3 or 4 years ago the group disbanded because of a lack of volunteers to help.

Pre-Trigeminal Neuralgia Symptons:  For several years (at least 3 or 4) when I was in my 50's, I noticed when washing my hair that on the left side of my head I could not feel the hot water as well as I could on the right side. This was also noticeable while I was scrubbing my hair. I do not fully understand what this meant other than to think that the Herpes virus had earlier done some damage to the trigeminal nerve endings. The neurosurgeon did a test on me prior to the first MVD which was to move a Kleenex tissue across my forehead and sure enough I could not feel the Kleenex on the left side of my forehead as well as the right side. This is a proper time to mention also that on my mothers side, she passed on to me a substantial amount of the Herpes Virus I (fever blister culprit). When my two boys were young they repeatedly broke out with large area of Herpes. One of the sons had large outbreaks on his chest and the other on his chin and below and on his eyes and the cornea. I can remember my mother telling me that I had the same thing happen to me when I was a little boy. Mother, when she was in her 90's, had the worse case of the shingles (I know that this is a different virus HPZ, Herpes Zoster) that the medical people treating her had ever seen. She had large clear blisters on her back that were as large as silver dollars. All my life I have had more than my normal share of persistent fever blisters. I will mention here that I have read where one doctor said that Shingles of the Trigeminal does happen. And another paper published by a doctor in England that said that there was a strong possibility of a connection between Herpes Virus and some cases of TN.

About 2 or 3 months prior to my diagnosis of TN,  I kept repeatedly getting a shot of pain on my left side in the middle branch centered where my upper molars were. I was able to just ignore this for awhile until the pain level reached about a 5 level then I knew something was wrong that I had to see about it.

About 2 weeks before I got any pain, one morning (early Nov, 1995) I woke up and the left side of my cheek and around the corner of my mouth had turned red as if the whole area was going to break out in multiple fever blisters. I am sure of what was causing this because I had had too many fever blisters not to recognize what was going on.  I had never seen anything like it, it was massive in coverage. In about 2 days the redness just slowly went away without the skin breaking out in blisters. I later (2004) learned that this is called Zoster Sine Herpetic. Shingles without lesions or blisters on the surface of the skin.

My TN Pain:  I read and listened to persons with TN pain try to describe their agony. Using a rating pain on a level from 0 to 10, with 10 being the most intense pain that man could feel or endure. In 3 and 1/2 years until by first MVD I experienced level 8 to 10 pain only about 3 or 4 times and then only of short duration of just a few minutes. But the level 10 pain doubled me over to the ground and I did not have control of my faculties. I could not have chewed or swallowed anything. I described this to my neurologist and told him that I thought it was a seizure. Tears would roll down my cheeks with my hands grasping my face in excruciating pain. He told me not to call it a seizure because if I did I would not be able to get my drivers license!  Anyway, I  would  immediately go to bed, when the pain let up enough for me to walk, and would apply some heat and the pain would gradually subside. 90 percent of my pain during the first 3 1/2 years was 3 to 6 level pain. All mothers in our support group said the pain was worse than child birth pain. I have not experienced other severe pain like kidney stones, so of course my description while trying to make it relative, is subjective. After the first MVD and a later nerve section all subsequent pain until now,  is from 1 to 4. At the present time (Jan 2007) I have not had any pain for over 5 months. I am only on 60mg of Cymbalta.

Medication Treatment:  For three and a half years my neurologist prescribed for me nearly all recommended TN medication. Beginning with Tegretol and later Dialantin, Neurotin, Elavil, Baclofen, and Trileptal. I took Oxicontin (narcotic) for a short time after seeing a pain specialist. It did not phase the TN pain. My neurosurgeon in Houston prescribed for me some Topamax and Celebrex after going to see him in March of 2002, which was about 3 years after my nerve section. I really did not give these two medications much of a chance to work as I did not take all of the prescriptions. However all other medications were taken to their fullest. Neurontin at one time reach 3600 mg a day which did not phase the TN pain. There were times when I had to get off of Tegretol because blood tests were showing a low white blood count but this later was proved not to be the tegretol. I never took more than about 1200 mgs of tegretol. Tegretol did a number on my brain and vocabulary besides working on my digestive tract. Constipation was a problem. Tegretol worked best for me taking it at 8 hour intervals (after analyzing the half life period and my metabolism). Most of the time medications included several of the above at the same time. In 2002-004,   was taking a light amount of Tegretol and Trileptal. In the past 10 years I have off and on been on several anti-depressants and they were: Effexor, Serzone Paxil and Aug 2006 I got on Cymbalta.  Also beginning in 1996, thinking that Herpes virus was causing my TN I started taking some Famvir and later, today, when I am out in the sun a lot I take an acyclovir. This may be holding the Herpes Virus in check or from going rampant again.  I do remember reading that Doctors doing autopsies on persons that bad cases of Herpes Zoster (shingles) had dead and scarred nerve endings in the area where the shingles had occurred. I have never been on a heavy dose of anti-depressants. I got off of Paxil and on to Cymbalta (60mg a day) in Aug of 2006. Also, my recent neurologist in New Braunfels advised me to get off of Acyclovir and I did.  After going through 10 years of TN pain and in the early years intense pain,  I do not see how a person can go through the pain and depression that accompanies it without the help of an anti-depressant. However everyone's chemical makeup is different and can withstand different levels of pain. 

Operations and Procedures:  I had a MVD performed by a neurosurgeon in Houston on Mar 24th, 1999. One week later on the way home (200 miles away) from the hospital we stopped to get some fried chicken which I never ate because intense pain came back. One week later on Apr 6th, 1999 the same neurosurgeon went back into my skull (same cut) and performed a Exploration and Cranioplasty - -Partial Nerve Section-- he recovered the same hole in my skull with Titanium mesh. He also added more Teflon around the Trigeminal Nerve.  The pain mostly went away for several months and slowly, gradually came back but medication, mostly Tegretol, kept it in check. I could feel the pain spread slowly to the upper and lower branch so I decided to have something else done. However before I leave the neurosurgeon I would like to make this comment. He told me prior to the first MVD, in his office, while looking at my MRI, that he could see what my problem was and that he could fix it by padding it with teflon.  He pointed out to me on the MRI how the nerve was being compressed by a particular blood vessel. My wife Sandra heard him say this. As it later turned out, a compressed nerve was not what was causing my TN, at least it was not in view of the neurosurgeon as he performed the operation. Is it possible for the nerve to be compressed at other places besides the ganglion?. What about in the area just after meckles cave?. I went to see this same neurosurgeon in March of 2002 and he said there was nothing he could do for me and he would not even recommend another neurosurgeon or procedure. I ask him about the Gamma Knife and he had a negative opinion about that and would not even recommend a doctor for a Glycerol injection.

In May of 2002, I had a Glycerol injection performed by a neurosurgeon in Austin. It had some positive effects but it did not last long enough. I do not believe that he had the needle in the precise place nor the right amount of glycerol. As the light to moderate pain came back rather quickly in Nov of '02.

In August of 2003, I flew to San Diego and a doctor there gave me another glycerol injection.  I felt confident that he knew more about this procedure. He kept me mostly awake during the injection because he wanted to know exactly when he was on the nerve, and believe me, I did let him know! He gave me, he said, a double dose of glycerol and I came out with a real dead left side of my face but mainly the cheek area. For the first month I had trouble biting my cheek, tongue and lower lip but that slowly subsided. I ate only soft food for a week or two. The injection of glycerol was very effective, at least for the first two months. In Oct 2003, I still had minor twinges and was taking a light amount of Tegretol. Now and then I will take some trileptal but it was not as effective as Teg. I would not hesitate to visit my San Diego doctor again, I was most impressed with his staff and Hospital.

In 1998, prior to my first MVD, I had about 30 treatments of Acupuncture. At first I thought that this was helping some. But in the long drawn out treatment of TN, you soon realize that all of your efforts to help yourself, whether it be from the medication, alternative solutions, diets  etc...throws you into a tizzy because you soon realize that you're not sure what you are doing is helping or not because of TN remission periods.  My TN had its periods of remission and when those times came I automatically thought that the medication, diet, activity, exercise, was responsible for the remission.  So it was with the Acupuncture. I even went to arbitration with my insurance company to get them to pay for the acupuncture as I thought it had helped me, but it did not. Think about this: logically how could Acupuncture help a compressed nerve at the brain stem or massive damage to the nerve endings (mylein sheath) by the Herpes virus?

Summary:  In retrospect, knowing my own body and educating myself on TN and its causes, I have concluded that I had Shingles of the Trigeminal Nerve. It is not as uncommon as I first thought. I have later learned of several persons who had the same thing...I never had a doctor tell me that that was the cause, but yet when I expressed myself they did not disagree and one doctor even prescribed some acyclovir for me. More specific it was damage to the nerve track and nerve ending by the Herpes Virus (Shingles) or more specific Herpes Zoster (HPZ).  It was hard for me to believe that PHN (Post Herpetic Neuralgia- pain after shingles) could be that painful and last for several years. But it did!!  Trigeminal Neuralgia was for me PHN and was a very painful long experience.

I found out....if a patient really wants to stay abreast of his or her TN and the effects of all the different medications and if its a long drawn out case of TN, you will have to keep a daily pain log and a medication time table.  This helped me immensely to know just exactly the effects of the medication on my body and TN. I have a daily pain log that is 10 years long.....

It is a very hard difficult nerve disorder to understand, especially if you are not typical or the problem is not an apparent compressed nerve in the ganglion area.  I have learned I am not a special case of TN. Its more common than medical people realize mainly because it is not diagnosed or given the proper recognition. Several in our support group and others have not been helped by MVD's (20 percent had other causes). One thing is for sure, there is more to be known about this disorder than some doctors want to admit.  For instance, my profession was mainly a radar meteorologist. For years the radar console I worked at had three large cathode ray tubes with a focus on a point right to my head (about 18 inches away). For many years I spent 8 hours a day staring at radar with out moving from the foci point. Do we know every thing there is to know about radiation and the effects on the human body?  What about radiation on nerve endings? I think not!  

William R Hare (a 37 yr retired NOAA meteorologist)

Posted 2-23-07