There are good reasons for a doctor not recommending any treatment for a patient he, or she, has not seen. Nowadays, I suppose doctors think first of legal liability. If I recommend some treatment and the patient immediately goes out and has an automobile accident—I may get sued! The more important reason, however, is that the patient, being a particular person with particular sensitivities and vulnerabilities, may react badly to a treatment that would be safe for most other people. Just as one example, the patient may be on other drugs that make the drug I am recommending unsafe. What I do do routinely, however, is recommend that the person I am addressing look up the pluses and minuses of a particular drug or treatment, and then not hesitate to ask his, or her, physician whether it would be an appropriate treatment to consider. Good physicians will not resent a suggestion, however, unsuitable it may turn out to be. The doctor has the last word. But patients must take some responsibility for their care. I want to make all of that clear before talking about a recent experience I have had.
I routinely read Science. It is probably the premier scientific journal in the world. Consequently, an article in this journal carries weight. Recently, it reported on studies that showed that Nicotinamide, a form of a vitamin B3, was effective in a high percentage of cases of glaucoma, a common cause of blindness, and a condition for which there are few good treatments. I am familiar with nicotinamide from a patient I saw in 1957 who had pellagra, a vitamin B3 deficiency illness which was very uncommon even then and quite rare now. (The patient had contracted the illness by eating nothing except a kind of cereal mush for over a year.) The patient had the “three Ds of pellagra”: dementia, dermatitis and diarrhea. (as opposed to the three Ds of camp life: “discipline, decorum and decent living,” which I tried to instill in my charges in the days when I was a camp counsellor.) Upon being given nicotinamide and niacin, another form of B3, the patient’s apparent dementia immediately cleared. The skin condition took longer.
I am not used to thinking of this vitamin in any other context. So, I was surprised to discover that it had other uses. According to the article, it acted on the retina in subtle ways too complicated for me to understand by reading about them. As the result, the pressure in the affected eyes was lowered, ameliorating the condition. Since I have macular degeneration, a serious, untreatable, disease of the retina—and since I knew nicotinamide was readily excreted, like all the B vitamins, and less likely than other vitamins to cause an overdose—I thought to try it myself. While I was at it, I suggested to a friend with Parkinson’s disease, another intractable and potentially devastating disease of the nervous system, that she take it too.
I thought for a few days that my vision actually improved, but I was probably responding to a placebo effect. The drug did not work in me, at least in the doses I was taking.
Let me interrupt to tell a story:
During much of my life I suffered every month from classical migraine, a jumping- out- of the window type headache, complete with stockade scotomata (odd lights you can see with your eyes closed) and all the rest. I tried all sort of remedies: drugs, diets, relaxation exercises, etc. with no relief. Finally, for no good reason, I tried a high tyramine diet: sharp cheese, pickled herring and certain other foods. I waited to get my headache, but it never came! Being a skeptical guy, I experimented by skipping the diet for a while, trying it again, then skipping it again a half-dozen times. When I stuck to the diet, I had no headaches. When I went off it, I promptly had another headache. I had discovered a cure for migraine, I thought! I believed then—and I believe now—that this diet prevents my headaches.
Since I was a physician, I was in position to recommend the diet to a number of patients over the years. It never worked on anyone else! In fact, one patient was made distinctly worse. Migraine, it seems, is a final common pathway for a number of genetically different conditions. It worked on me and not on the others; and this is a common occurrence explaining why it is difficult to recommend a treatment for many illnesses with great confidence. Indeed, most illnesses respond to a varying degree in different individuals to the same treatment. Another reason not to recommend a treatment to someone I do not know well.
I did not respond to nicotinamide, but my friend with Parkinson’s Disease did! She was noticeably better and has maintained that improvement.
Then, finally, I googled various diseases and Nicotinamide—just as I recommend doing to patients– and discovered that there was a literature on this treatment! The articles were relatively recent and may not have come to the attention of the various specialists my friend saw. Or the evidence was not convincing to them. Still, she was better.
There are medical articles that can be accessed now that seem to me to be very preliminary on nicotinamide and Parkinson’s disease, (see the striking and somewhat amusing before and after video of a Parkinson’s patient responding to the vitamin), on Alzheimer’s disease, (studies are just beginning), on glaucoma, even on macular degeneration. Maybe the use of this vitamin will turn out to be one more false hope, but maybe not.
When unproven treatments are worth a try:
- When the condition being treated is serious and does not currently have an effective treatment.
- When the treatment being considered is relatively safe. (No treatment, including non-drug treatment, is entirely safe.)
These conditions may apply here.
I am not recommending trying nicotinamide; I am recommending exploring the possibility of the vitamin being useful—then consulting a physician. Frequent readers of my blog will recognize that I recommend the same solution to problems in medical care, work, dating, and so on. I recommend that people take a proactive stance, finding out as much as possible about whatever problems they may have or are likely to have. The goal is not to remove any sense of anxiety; it is to be better equipped to manage the challenges and opportunities that come along every day.
P.S. Needless to say, I have no involvement with the production or sale of nicotinamide. (c) Fredric Neuman