My 18 week ordeal of double trouble

by Dr. Lakshman Abeyagunawardene

I thought of writing this article in order to share with readers of the Sunday island newspaper, my recent experience as a patient suffering from two illnesses at the same time. I could describe this period as sheer mental agony as I had to bear the social as well as possible medical consequences of illnesses that plagued me over a prolonged period. Writing newspaper articles in my opinion, is one of the best ways in which at least one section of the community can be educated on health issues.

My professional career called for frequent lectures to be given to a wide variety of target audiences ranging from post graduate doctors preparing for examinations in Community Medicine and medical students, to humble village folks like new settlers in Mahaweli areas in the late seventies and early eighties. I always made it a point to emphasize the fact that the occurrence of disease is not only a biological phenomenon but a social one as well, a point that I picked up in my post graduate training and which has got etched in my mind through conviction. Subsequent developments as described later, led to the worst period when I was confined to the guest room in my home as I was not permitted even to climb the stairs that led to my comfortable bedroom upstairs. The move which was to last several weeks, involved shifting many personal items which were indispensable for day to day life.

It all began with a rash on the right side of my face involving the nose, cheek and areas around the eye. Although I suspected Herpes Zoster (commonly called Shingles) particularly because I recalled a bout of chicken pox over 50 years ago, soon after my Internship while working at the Colombo South Hospital. Although it is a self-limiting disease, I decided to seek medical attention because as far as possible, I try to stay away from self treatment except for very minor illnesses. Herpes Zoster is a viral infection that occurs with reactivation of the varicella –zoster virus that had been lying dormant in certain nerves for many years. Symptoms typically start with pain and a rash along the affected path of the nerve, followed two-three days later by a vesicular eruption.

With a 24- hour curfew in force, that weekend happened to be one where all “Channel Centres” were deserted. I therefore decided to go to the Emergency Room (ER) of Sri Jayewardenepura Hospital (SJPH) where the doctor confirmed my diagnosis and prescribed an anti viral drug called Acyclovir, pain killers Gabapentin and Panadeine. I was also referred to the Ophthalmic (Eye) Ward because my right eye seemed to be affected. Fortunately, the Senior Registrar on duty ruled out any involvement of the eye and said that my vision was normal. This was confirmed by the Consultant Ophthalmologist (Eye Surgeon) whom I later channeled as I was very concerned about my eyesight. As always, I diligently took all prescribed drugs but at the end of two weeks, I unfortunately developed Postherpetic Neuralgia (PHN) which is a known complication of Shingles.

I had heard of Post Herpetic Neuralgia (PHN) but never imagined that it was so painful. In general, all pain due to Neuralgia is very painful, difficult to treat and lasts a long time. I realized through experience, what it is like to be the sufferer rather than a doctor treating a patient.

Quite apart from my present illness, I was having spells of dizziness off and on, which I attributed to Gabapentin which is known to cause such side effects. On one such occasion it was so bad that I was about to fall. Fortunately, we were in our bedroom and my wife was at hand to prevent the fall and led me to my bed. My wife was quite helpless in such situations and called my son who lived close by and called for an ambulance. My son and the ambulance arrived almost simultaneously, but as I had not lost consciousness, I was able to explain to the paramedics that I was on Gabapentin and did not need hospitalization. Whether or not the paramedics understood what I said, they withdrew mainly because their patient was a doctor and knew what he was doing!

On a subsequent occasion, I had a syncopal (fainting) attack while I was having breakfast and my wife again had to go through the usual motions of calling my son and the ambulance. This time, I had lost consciousness and when I was back to normal, I myself thought that it could not have been due to the Gabapentin. Therefore, I didn’t resist hospitalization as I previously did. These two episodes clearly showed the importance of family support. I dread to think what a bachelor living alone would have done under such circumstances.

For a number of years, I have been having an irregular pulse. This drew my attention when it continued and my cardiologist referred me to a Cardiologist and Electrophysiologist who put me on what is called a Holter Monitor. After reading the report he said that I have a few extra systoles (ectopic beats) and that accounts for the irregular pulse. He further said that it is normal for some people and I needed no treatment. Mind you, that was about six years ago.

This time round when I lost consciousness, to cut a long story short, after the necessary referrals were made, the EEG that my Neurologist ordered showed some changes and my doctors decided that the origins of the changes had nothing to do with my nervous system but that its origins were cardiac (meaning that the origin of the EEG changes could be due to some defective movement of electrical impulses in the heart). So, I went back to my cardiologist who referred me to a Cardiologist and Electrphysiologist. The latter put me on a Holter Monitor again. Based on the history and the new Holter Monitor reading, he recommended a Pacemaker. I readily complied and he implanted a Permanent Pacemaker on September 8. Sutures were removed after about a week and I had to attend a “Programming Session” on September 27. The doctor reported that the surgical wound was clean and that the whole procedure was successful. The implantation of the pacemaker did not bother me at all, but the anxiety of anyone facing a surgical operation was telling on me.

I had to go through the procedure of pacemaker implantation while the pain in my right eye persisted. It was after my fainting episode and pacemaker implantation was recommended that I was debarred from climbing stairs. I was confined to the Guest Room and this is where my agony really started. My wife did not allow me to even go to the living room which was just three steps below. Towards the latter stages, I watched news on the small TV in the kitchen. I had to be satisfied with the laptop computer that my son brought. But it was a far cry from the Desktop I was used to. I missed my weekly shot of an alcoholic drink! I had not taken even a beer since the beginning of June.

I think I had a turnaround in my fortunes after the doctor did the Programming on September 27. It was this doctor’s advice that I strictly followed (more so my wife and son) because there was nothing more the Neurologist who was treating my neuralgic pain could do. The electrophysiologist who did the pacemaker implantation asked me to resume my regular evening walk but advised me not to drive the car till the end of October. When I asked him whether I could take my weekly shot of an alcoholic drink, he jokingly asked me whether it was Single Malt or Scotch. I replied that I take Single Malt , Scotch, Gin, Rum, Vodka, Tequila and even Ceylon Arrack in rotation, depending on availability. More than anything else, I was happy to be back in my bedroom, using my toilet, 52 inch TV in the TV room and the Desktop in my study.

Once the Eye Surgeon said that my vision is intact and the Cardiologist had successfully implanted the Pacemaker, I was free to take some decisions on my own. As I was bothered by the persisting pain in the eye, I went back to using Gabapentin when the eye pain was severe (discontinued since that episode of dizziness). Picking up information from the Internet, I started trying some home remedies like washing my eyes and using a warm compresses frequently. I also started taking a course of Vitamin B Complex and refrained from eating Bananas and Citrus fruits to help in the recovery of damaged nerves. If I continue to recover from the eye pain and the other minor symptoms of PHN, I will not be able to pin point and say that it was one specific intervention named above that was responsible for the turnaround. Being a doctor myself also certainly helped in many instances. However, I had resigned myself to think that recovery from PHN is very, very slow. As I recover slowly from PHN, I painfully realized the plight of many who are affected by Neuralgic pain and continue to suffer.

As a precautionary measure, I still keep away from my mobile phone and the microwave oven. The Pacemaker also restricts my movements of the left arm. I will continue to live with such restrictions for some more time. But I know that I have already seen and experienced the worst of this period of agony.