Self-care advice

Avoiding triggers

Male jogging in the countryside

Some of the most beneficial actions that can be taken by people living with LHON, whether newly affected or long-term blind, are actions that are generally accepted to be beneficial anyway. Most important among these is to adopt a healthy lifestyle which includes:

  • Cutting out smoking
  • Reducing or eliminating alcohol
  • Incorporating fresh rather than processed foods
  • Staying active with regular exercise

There seems to be a strong link between smoking and vision loss, with a research study showing that most male carriers who smoked went on to develop symptoms.

Vitamin cocktails and nutritional supplements

Anecdotally, some patients are self-medicating with a range of mostly antioxidant food supplements. Visit ‘Antioxidants and idebenone’ for more information about why antioxidants are thought to help with LHON. Some supplements are also thought to be able to provide mitochondria with an alternative energy source which may help overcome some of the problems in LHON.

There have been studies looking at various supplements including curcumin; coenzyme Q10; lutein; brimonidine; vitamins cocktails with different combinations of B2, B3, B12, C, E, and folic acid; ubiquinone; and other supplements (e.g., alpha-lipoic acid, carnitine, creatine, L-arginine, glutathion, and dichloroacetate).

Unfortunately, much of this research has been inconclusive, with limited and variable benefits. There is not enough scientific evidence to support the use of these supplements in LHON.