Sunday, November 24, 2019

Damn It: Shingles, Postherpetic Neuralgia, Apathy and Grit

Shingles Then Postherpetic Neuralgia (PHN) Then Apathy Then Grit

Shingles and Postherpetic Neuralgia

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On April 7, 2017,  shingles broke out on the upper left side of my face. In about 2 weeks, the shingles pox left, but I spent the next 6 months in bed from postherpetic neuralgia (PHN) pain on the V1 of the trigeminal nerve on the upper left side of my face. The pain from itching was so bad I could not walk.  After more than two years, and the itching persists, but it is not as debilitating. The first PHN drug treatment was gabapentin. It did not work. Ice packs helped. I am glad I am a veteran, and my VA neurologist is a serious doctor.  He switched gabapentin to the drug to Lyrica, and that provided more relief, at least I stopped screaming.

I started wearing Lidocaine patches on my forehead.  I made my own concoction of Lidocaine, CBD and THC lotions to replace the patches. I read about some experiments using Botox injections for the PHN treatment. I have Medicare and my IBM retiree insurance, and the VA Cheyenne is over an hour away, so I try to use community providers.  My community neurologist, Dr. Tamara Miller runs the Multiple Sclerosis Center of the Rockies.  She used to give me Botox for a perpetual MS spasm in my left calf. The FDA approves Botox for migraines but not for PHN.  My VA neurologist, Dr. Kanter found a way to make an exception. Every 90 days, the VA ophthalmologist trained in Botox injection can give me about 13 Botox injections on the trigeminal nerve. 

In the days before the Botox treatment, I laid in bed, hour after hour, day after day, month after month. For the first time in 68 years, I became apathetic. And my mood kept getting worse. The bad news was during those days, I did not know I was apathetic. All I could think about was the constant itching pain. One day, I got sick of being sick.  Treatments sparked me just enough that I knew my attitude and mood did not belong to me.  Eventually, I did diagnose myself as apathetic. Before I did, I remember looking in a mirror at my shabby self and telling myself, “You are pathetic. You look like you do not give a shit,” I suppose telling yourself bad news about yourself can be the first step to change.

It is now November 2019, the itch is always there, like a bunch of small mosquito bites that have just about lost the itch. There are flare-ups, and the treatment is back to ice packs, patches, and lotions, The flare-ups begin about two weeks before the next Botox injection. After the Botox shots, it takes about a week before the Botox is effective. Even with the Botox, stress and weather can provoke itching again.

 I do not know if the PHN will ever go away, but life with MS and knowing MS is a lifelong medical condition did prepare me for the PHN. The pain-treatment pattern is the same. Itching is like an MS relapse alerting me to the fact that something is wrong. Steroid treatments help to put MS into remission. Likewise, icepacks and patches help to put the PHN itch into remission. With MS we take disease-modifying treatments to help reduce relapses. And with PHN, the Botox treatment helps to reduce the itching pain. 

Both MS and PHN cause fatigue. Both drain vitality and can damage the will to thrive.

Apathy and Grit

I am not exactly sure how I diagnosed myself to have clinical apathy. Ordinary, everyday apathetic feelings are normal. We have an internal judgment referee that enables us to show or feel no interest, enthusiasm, or concern for something. 

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