Dr David L. J. Freed, MB, MD, MIBiol
TAP WATER AND ONDINE'S CURSE
A 57-year-old lady presented in 1989 with an unbelievable history. The most striking symptoms were nocturnal. Her eyes would suddenly open wide while she was sleeping and she would stop breathing. This was usually accompanied by a terrifying nightmare which would wake her. Finding that she had stopped breathing, she "reminded herself to breathe" and would sometimes drift off to sleep again. This syndrome was described and named Ondine's Curse in the 1970's, based on a germanic legend in which Ondine, a water nymph, placed a curse on her faithless lover that he should stop breathing whenever he fell asleep. I cannot find the original description but to my surprise a Medline search for Ondine's curse yielded nearly 9,000 titles, most of which however are dealing with upper-respiratory sleep apnoea. Ondine's curse, strictly speaking, is not the familiar obstructive sleep apnoea associated with snoring, obesity and heart failure (and milk intolerance), but rather, as implied by the legend, a failure of the central brainstem breathing drive. It represents the extreme end of a spectrum of central hypoventilation states, the causes of which are said to be unknown [1]. In spite of its acceptance into the medical literature, many doctors are still ignorant of the syndrome.
The patient had discovered the cause of her worst symptoms to be the local tap water (West Midlands); when she drank only Malvern water, either bottled or fresh from the spring (which was not far from her home) she could have spells of being completely well. An attack could then reliably be triggered by drinking tap water again, although this was clearly not the only trigger. This excellent piece of detective work, plus the bizarre nature of the symptoms, had naturally earned her a reputation for Munchausen's syndrome among her doctors, and the universal disbelief that she encountered aggravated her distress.
The other symptoms associated with her local tap water were abdominal distension, vaginitis, a reddish sediment in the urine, slurring of speech, illegible handwriting, a blueish tinge to the face even when awake, suicidal thoughts and irritability. Blessed with a vivid vocabulary, she described this last symptom as "becoming really evil" (which, coupled with the nocturnal problems, conjured up mental visions of Dracula!) After a few days of this syndrome she would experience a release of "pus" from the throat and would thereafter feel much better. All in all, a doctor's nightmare.
But I had previously read Oliver Sacks's brilliant monograph on migraine [2], which had opened my eyes to the protean manifestations of this most uncommon of common diseases, especially the polysystematic vascular changes, the rapid fluctuations of body water, and the outlandish variant forms. Indeed, had there not been so many male migraine sufferers, including many doctors, it is unlikely that migraine would ever have been accorded medical credence as a "real disease". Migraine can be accompanied by partial or total paralysis ("locked-in syndrome"),- semi-consciousness or unconsciousness, and importantly, head pain is not always present. Migraine pain can occur instead in the abdomen, loins or legs, or not at all. I thought this lady's strange symptoms might represent a variant headache-free form of migraine (though I could not explain the "pus"), so I agreed to treat her.
I asked her to provide me with some of her local tap water, which I freeze-dried to yield 20 mg/litre of solids. This sediment I resuspended in phenol/saline, diluted out and neutralised her for. She was not however much better after two weeks of taking this neutragen so I proceeded to my standard treatment regimen of full neutralisation and rotating stone-age diet, forbidding her to consume any foods not covered by the neutragen. Within five weeks she had lost a stone of excess weight, looked ten years younger, and the Ondine's curse and most of the other symptoms were completely gone. Ondine's curse re-appeared after eating certain foods (leek, capsicum, cress, melon) in spite of neutralisation, so she gave those up. Tea and coffee were well tolerated initially with neutralisation, one day in four, but after about a year she noticed a gradual return of her joint pains which disappeared after eliminating tea and coffee. Oral nystatin powder cleared the remaining symptoms with the exception of the vaginal dryness (although the inflammation went). Over the next year I supervised a gradual liberalisation of the diet and she gradually tailed off her neutragen. Self- experimentation revealed a marked reaction to yeast, and she wrote me a complete account of the severe 20-day reaction that followed. Interestingly, the first indication of recovery from this was the sudden return of emotions. With moderate dietary discipline she remained virtually symptom-free for the next six years, although she wrote to tell me that taking antibiotics on one occasion for a sore throat had made her ill again for three months.
She contacted me again in 1996 (seven years after first seeing her). She had started drifting back into ill-health after a holiday in Iceland, this time with headaches, and had eventually been discovered to have acute glaucoma. She had steroids and surgery for this but became visually impaired. Other life stresses piled onto her at the same time and she started comfort-eating. She returned in 2000 very depressed, with many of the old symptoms back (though not as badly as originally, and without the Ondine's curse). Now aged 68 she felt unable to contemplate returning to the strict diet, but resumption of her "moderate" regimen and nystatin made her much better. She wrote in 2001 to confess that she had gone back to bread and potatoes "because of the foot- and-mouth crisis". She continues to struggle with dietary temptations and her success or otherwise is followed by corresponding fluctuations in her health. She reported in August 2002 that she is "very well" as long as she sticks to her diet. Now nearly 70. she looks around at the allegedly-healthy members other pensioner's club and observes that most of them are struggling more than she is.
I publish this case to illustrate the importance of being prepared to believe the most bizarre stories from patients. Munchausen patients, by contrast, tell stories that are calculated to be credible [3]. Once or twice in my career I have been fooled by convincing malingerers, but far more often my policy of open-mindedness (others have called it gullibility or worse) has enabled me to bring relief to genuine sufferers. In light of her progress on treatment, which is typical of migraine, I am reasonably confident that her Ondine's curse was indeed, as I suspected, an atypical form of migraine.
REFERENCES for Tap water and Ondine's Curse
1) Fauci AS et al. Harrison's Principles of Internal Medicine 14th edition McGraw
Hill, New York, 1998, p 1478.
2) Sacks, OW. Migraine. Vintage Books, USA, 1999 (ISBN 0375 70406 X).
3) Asher R. (1951) Munchausen's syndrome. In Avery Jones F (ed) RichardAsher
Talking Sense. Pitman Medical, Tunbridge Wells, 1984, 170-179.
