Trigeminal Neuralgia is no laughing matter! It can ring your bell, but good!

Most adults have experienced orgasms. You know, the kind that are the result of mental engagement in sexual focus, usually in conjunction with some measure of physical stimulus. Pleasurable waves soak your consciousness and rise in higher increments, reach a stabilizing plateau before washing higher with ever more intensity. They can elevate in this manner several times before reaching a point of no return, to wash ecstasy over the pleasure centers of the nether regions before spreading upward to the entire body. An unparalleled experience, perhaps best described as angelic!

Or is it unparalleled? Perhaps each angel has a demonic counterpart! Unfortunately that seems to be my experience over the past year or so.       

I’ve only had two demons in my recent life. One was eventually diagnosed as an “intrarectus hematoma,” a condition where, due to the symptoms of a cold, I coughed so violently I broke a blood vessel in one of my upper abdominal muscles. It filled the inner space in the muscle with blood. The spasms associated with it were incredibly painful. As I described later in a poem, I found a point where the demon (or the nerve) was vulnerable—its eyes. I gouged them forcefully until the pain retreated. It was a good ploy and I avoided immediate hospitalization from the malady. Just as my doctor upon examination predicted, the blood was eventually absorbed by my body and the pain and swelling went away.

Demon number two made itself known to me a few weeks ago and has effectively put a stop to most of my reading and writing activities, and has occupied my energies in trying to find a way to rid myself of its attentions. First, let me explain the history of demon number two.        

When this demon first appeared, there was nothing out of the ordinary that I was doing. In fact I was in the shower rubbing shampoo on my wet hair and across my forehead when a cattle prod, or a good replica of one, discharged against my right eyebrow, nearly blinding me, leaving me gasping for air and grasping for the walls of the shower stall. Rang my bell, but good! The pain only lasted a couple of seconds before mercifully receding. I completed showering without further incident and went about the business of whatever activity to which showering was a precursor. I was concerned, but not in a panic. It occurred to me that maybe I had been too intensely immersed in writing my fifth novel. I have often experienced one pain or another in giving birth to my creative endeavors. 

A day or so later, I was again surprised by a sudden severe pain in the same area of my scalp and face. I was doing nothing more dangerous than pulling a sweatshirt over my head when the fabric brushing my right eyebrow triggered the blast. Then, within a day or so of that incident I noticed a slight tickling of my eyebrow, as one might expect of an errant eyebrow hair, or perhaps a small insect. As I brushed at the sensation the cattle prod came back with a vengeance.

Okay! This was serious. I began thinking of what I could be eating or taking that might cause such a reaction.

I focused on my appetite for herbal supplements and immediately stopped taking several supposedly harmless ones such as bilberry, palmetto, Vitamin D, benadryl, and a DMAE vitamin/mineral complex. This course of action was to no avail, though, as the attacks proceeded with increasing frequency and severity. I considered that there could be a lag time in seeing results from stopping the intake of these nutrients, just as perhaps there had been a lag time in ramping up any quantities of possible toxins in my body that could cause such a condition.

My wife Linda soon found out about my strange condition and immediately began lobbying to get me to a doctor. Of course, being the person I am (I don’t ask directions to find my way on automobile trips—and don’t usually need to) I wanted to continue to test my ingestion theory. I continued to do so, but found again after a few days that this was to no avail. The attacks continued and increased in frequency and intensity. Even the lightest touch to the right side of my face resulted in severe pain around my right eyebrow and scalp.

It was Tuesday, February 15. Linda drove off to her work place some fifty miles away and I worked intently on my novel for a few hours. Suddenly I found I could not open my eyes without experiencing a most unbearable pain. I had to feel my way out of my office to a recliner in the living room. At this point I would have called a doctor, but I could not see to find the phone or the doctor’s number. I stayed in the recliner the remainder of the day until Linda came home.

She immediately made an appointment with our general practitioner for 8:00 a.m. Wednesday. I kept my eyes closed through dinner. I had a number of attacks even eating the softest of foods. The act of opening my mouth brought pain, as did any movement I made during a night of agony.

 Next morning Linda dressed me and led me to the car. When we arrived at the doctor’s office she led me inside. A nurse immediately took me to an examining room and soon the doctor came in. To say that he was not thrilled with my procrastination on seeking his services is an understatement. Nevertheless, Vicodin, Immitrex, Ibuprophen and an unrememberable soon found its way down my gullet. His guess at my condition was either cluster headaches or shingles.

“Shingles?”

“You probably had chicken pox as a kid. Well, that virus doesn’t die but goes dormant and sometimes reappears at times of stress to burrow into the nerve ganglion and cause shingles. It is often but not always, accompanied by a rash. In any event it is a very painful condition. If it is caught early enough, an antiviral medicine can cause it to go into remission.”

I already had an appointment with an eye doctor for later in the month. He phoned them to get my appointment moved to immediately and then secured me an appointment for that afternoon with a neurologist.

The eye doctor did a normal eye check, inserting anesthetic dilation drops, looking for obvious problems like glaucoma. In order to complete her examination she had to force my right eyelid open. To say the pain was more than excruciating is another understatement. Here is where that business of the orgasm comes in. I can only describe it as an orgasm of searing, burning pain that elevated in intensity as it bored through my eye and into my brain through the right front portion of my scalp. After an unimaginable peak of pain, it eased over into a soft remission that left me gasping and thankful for its abatement.

Now here is the incredible part. After that peak of pain, it subsided and I opened my eyes and looked around with no pain whatsoever. I felt normal. Nothing! I completed the eye chart routine with a score of 20/20.

If it had only been a permanent condition! Unfortunately, in a few minutes the pain reappeared, lightly at first, then with more and more insistence, until, within ten minutes, it was back to its worst level and again I couldn’t keep my eyes open. The ophthalmologist gave me a prescription for an anti-viral medicine, dispensed dark glasses and dismissed me.

The neurologist didn’t seem to buy the shingles idea. He scheduled an MRI at the local hospital for that evening and scheduled an immediate blood test for Lyme disease, among other possible maladies. He gave me a prescription for Dilantin, an anti-seizure drug. I took nine capsules that day, was to take three per day thereafter.

The MRI, while tolerable, was rather intolerable, if you suspect what I mean. It consists of a large machine complete with a tunnel with a carriage that a patient lies on to be horizontally rolled inside. It could have been much more pleasant had the machine been just two inches wider (or I had been two inches thinner). My elbows were pinched against the sides and with the slight vibrations of the machine, I soon became like a victim of a process that can only be likened to Chinese water torture. Between that and the various tones of hammering in the ears (in spite of ear plugs) it is surely a Faustian deal to find oneself inside one of these machines. Necessary but unpleasant.

I am not particularly claustrophobic, or didn’t think I would be, but after one hour I was clenching my teeth to keep them from chattering. I don’t know if it was my involuntary shuddering or if it was the magnetic waves slicing through my brain that caused the pain attacks. After an hour, the technicians pulled me out and inserted an intravenous feed to add a contrasting element to my blood stream then put me back in the machine for another twenty minutes. Here’s another understatement: I was happy to finally escape.

I would have another painful orgasmic episode before I got out of the hospital, but on the way home, Linda and I stopped at a restaurant and ate dinner. It seems to be the nature of this beast that after the pain orgasm I feel very normal.

As I continue writing this on Saturday, February 19, 2005, I have heard from the neurologist that the result of the MRI was negative. There are no aliens growing in my head, nor tumors either, though I’ll bet there are a few nondescript devils in there.

Saturday, February 25, the blood tests have all come back negative. I don’t have Lyme disease or the other things they checked. Linda drove me to Prince William Hospital to take a new blood sample to check the level of the drug Dilantin in my blood before I take my first pill of the morning. The idea is to determine if I can tolerate more, as the dosage seems not to cover the full period between taking the pills.

The neurologist has determined that the problem is what is called trigeminal neuralgia, that is, the nerve that serves the eye and scalp on the right side has become inflamed and is firing in this somewhat random manner when a suitable touch to that area triggers it. To me it feels as if there is a demon somewhat like a snake running from the neck muscles through the eye to the scalp. It has the characteristics of a wire brush that has the ability to lie flat, but to bristle up when agitated. I have by this time begun to affectionately call it “Jimmy,” my latest demon friend, or “Asshole,” whichever seems appropriate at the time of the communication.

I have also been able to use the service of a chiropractor/physical therapist who has been helping Linda with some of her back pain problems. She isolated the point where the trigeminal nerve goes through my trapezoid muscle next to my neck, trying massage, hot pad, cold pack and ultrasound. This was only successful in lightly triggering the pain, but it did home in on the nature and position of the trigeminal nerve for me. Although there was no immediate help, it started me exploring how to deactivate the nerve by manipulation in that area. More on this later.             

There seemed to be some sense of correlation between the attacks and absorption of luminescent radiation such as bright sunlight. Another similar light source might be the use of my computer, which has a Cathode Ray Tube for a monitor. Not being able to use the computer for long stretches at a time would psychologically stress me to no end, as writing is my life. But possibly, using the computer for long stretches at a time stresses me physically to no end, too. Consequently I have ordered a flat LCD monitor to replace my current monitor and a glass filter to eliminate UV radiation. If eyestrain is in any way the culprit, perhaps this would do the trick.

The new monitor and its video driver card and the filter have now been installed and work well. They are very nice to work with, but certainly don’t wholly satisfy Jimmy’s apparently random desire to wire brush the inside of my eye and scalp.

A few days ago the pain level reached the point of an emergency trip to my primary doctor. He changed several of my meds. As Dilantin was giving me hives, in consultation with the neurologist he changed that to Neurontin, and also gave me a prescription for oxycontin, a narcotic pain reliever. I have now been taking this new combination for several days.

Generally, it is working better, but Neurontin makes me drunk, at least it did at first. One of these two meds makes my memory fuzzy, and makes me sleepy, but maybe it’s getting better. It’s March 29, as I continue writing this article, and I feel considerably more up to the task than I did a few days ago, so perhaps I’m getting used to the meds. I am trying to drop the narcotic pills. Not sure that is doable yet, as I still notice more pain when I don’t take the little pill. Still, my hope is to get off all this stuff in a few weeks.

I am encouraged by the finding I made following the chiropractor’s therapy session. It seems that I can, by stretching my right trapezoid muscle (next to the neck), find relief from Jimmy’s lashings. Once started, it’s still painful until I can get it stopped, but by pushing my right shoulder downward just so while I move my neck to the left in an isometric stretch I have now found how to fairly reliably put Jimmy back to sleep. I think this finding may fit with the theory that the intensity of working for hours at a time without a break at the computer terminal may be what gave birth to Jimmy. I will be taking breaks on a frequent basis from now on, believe it.

Until I get this problem healed I may be seen performing unnatural acts (LOL). It probably looks a bit weird to see a guy freeze, then go into a Muscle Beach pose, but believe me, all I’m doing is trying to get Jimmy’s tail unpinched and the only reward I’m looking for is a “no bell peace prize” and to avoid orgasms of the painful type.

2005 R. Leland Waldrip