Approximately 20% or more of trigeminal neuralgia (TN) cases are caused by a herpes virus lodged in the fifth cranial neural ganglion. My case is one of those. No surgery will help this condition, it may spread to other areas and could become herpes encephalitis, a very dangerous life threatening brain infection. I have been dealing with this intense pain and visual disturbance for more than 7 years. There is a reason TN is also known as ‘the suicide disease”. When a flare up occurs, life must stop and I must retreat to bed with ice, heat, pain killers and medical marijuana. Sometimes the attack will last for 3-4 days with a frequency of twice per month. Sleeplessness or any compromise to the immune system will set it off on the cascade that must run its course. It is depressing and debilitating, isolating and ominous. It lurks there in my head, at my left temple, frequent twinges remind me it is always waiting. One foul step and the curtain is lowered. I have learned to take it easy on myself, long gone are the days of red eye and stand by flights, all nighters, up late worrying about crap. I know I have to take care of myself if I am going to be able to participate in life and be of any good to anyone else. There are some things that help keep the virus suppressed but nothing I have found has been able to rid my body of it.
If I take lysine on an empty stomach between meals, 1000 mg four times per day, I can get through a day without much pain. I have to completely avoid arginine heavy foods as the amino acids arginine and lysine compete for a site on the virus that governs replication. If the virus gets enough arginine it will awaken and launch into replication, if there is an abundance of lysine, replication is put on hold. I can tell when that condition is threatening. I have to immediately starve the virus of amino acids, eat a fruit based low protein diet for a day or two and double up on the lysine. If I catch it in time I can reverse the cascade. If not, if I am too late, I have to prepare to ride out a couple of days of the worst pain imaginable. Arginine rich foods include nuts, seeds, rice, grains, strawberries, most berries, oranges, grapes, lobster, shrimp, and others. They are all off the menu.
There are two main categories for trigeminal neuralgia sufferers. TN1 and TN2. TN1 is the traditional severe flashes of excruciating pain. It is felt like an ice pick through the face. It is sharp and causes lightning like electrical shocks to surge through the forehead, eyes, teeth, nose and jaw. Usually affecting just one side of the head…emanating from the temple on that side. It’s so sudden and unexpected, like torture, it becomes exhausting, wearing down the stamina, vitality and spirit of the individual.
TN2 has a different profile. Waves of electrical twinges start small and then intensify to become completely debilitating. A bout can last for several days, sometimes a week or more at this high level crescendo.
In both TN1 and TN2, prescription pain killers can dull the pain a little, but cause grogginess, sleepiness, and chronic depression over time. Nerve pain is difficult to treat. Even morphine didn’t help the pain, it only made me care a little less.
It is TN2 that may involve the herpes virus. However after the herpes virus has damaged the nerve sheath, TN1 may develop as well.
I have been looking for a cure to the virus, but it hides so well from the immune system, my best efforts to boost my immune system have not helped. I have tried red algae, olive leaf, astragalus root, St. Francis herbal tincture, coconut oil derived MCTs, and high dose lysine. Lysine taken properly, in appropriate doses, on an empty stomach has helped enormously, but I still have bouts every two to three weeks. I’d really like to get rid of the virus. So now I’m looking into ozone therapy and intravenous vitamin C.