Pituitary News, Issue 1 - Spring 1996.

The story of one member who developed Diabetes Insipidus at age 30. Includes 10 light hearted suggestions for every DI sufferer.

The story of P, who developed diabetes insipidus at the age of thirty

Daily life had become horrendous. A simple trip to the local shops was planned around a route map of local WCs and at least two cans of drink in my bag. A visit to London for the day was a nightmare. I spent the journey on the train next to the loo, and drank the buffet car nearly dry. I needed to pass water at 20 to 40 minute intervals, and drink at least a pint of anything straight away. Often in public places I would look deformed trying to 'dance' to the nearest loo. If I did not drink frequently, my mouth dried and I found it difficult to talk. Dehydration was causing me to shiver and feel nauseous.

Bedtime was a ritual of having two pints of water for the night on the bed-side table. My short periods of sleep were interrupted by four or five visits to the loo. By morning I was parched and drank four cups of tea as soon as I got up. The thirst is best described as 'eating a plateful of the saltiest bacon, followed by a cup of salt'. The amount of fluid in the bladder seemed as if it would actually burst. Drinks that were most helpful were diet coke (icy cold) and iced water. Most days I stuck my mouth under the tap flow to get more, quickly. At one point I drank my flower vase water in hospital. I drank tea from saucers to achieve faster rehydration.

I was also suffering from intermittent thumping headaches, and my periods had stopped. With this bunch of symptoms my GP asked for an appointment to see a specialist, which would be in 6 months time. How on earth could I keep drinking for England for the next 6 months?

After a few weeks, in sheer desperation, I paid for a private appointment to see the specialist consultant. Tests were started for hormone levels and I had a head X-ray and ultrasound scan of my pelvis. The results showed a small 'bulge' in the Pituitary gland and I was referred to an endocrine centre.

I had water deprivation tests, which were so awful that I would have let the staff cut my leg off in return for a drink. The test runs over 12 hours, during which you are weighed regularly, blood samples taken and your urine output measured. But no fluids at all must pass your lips! At the end of these tests I was a dried out, shaking wreck! Kind staff brought me drinks by the bucket and gallon which I gulped till I was nearly sick.

When the diagnosis of diabetes insipidus (DI) was made, I was given Desmopressin by an injection and within 10 minutes I was 'normal'. The relief was over-whelming. No more dashes to the loo, bladder bursting - no more hallucinating over icy drinks. I could now eat properly and sleep through the night. I began taking DDAVP by nasal tube twice daily. After a few days of getting used to the application, it became part of my routine. I have tried the spray version, but found it not as accurate, as part of the dose usually dribbled back down the nostril. When travelling abroad on holiday, I took a freezer box and blocks - the hotel would always refreeze the blocks, so that I could keep the DDAVP cool. Customs have searched a flask containing crushed ice and the medication, but a doctor's letter helps here.

The rhinile (tube) supplied needs to be washed well in warm water to achieve a straight and soft vehicle - it allows the dose to travel up the nostril more efficiently. I also have a 'better' nostril for 'sniffing'. Colds are not usually a problem for me, in fact sometimes I find the DDAVP works for longer. Occasionally I 'run out' of protection in the early hours, but I try to drink more until nearer the dosage time. Exercising and dieting make no difference to dosages, but stress seems to upset the balance, particularly premenstrual fluctuations in hormones. A tablet has been produced, but I am quite happy with intranasal DDAVP.

Once taking controlled medication, having DI does not present any problems. To help us patients, I would like to see better education for medical students about the condition, highlighting the distress it can cause. Accessible information and contacts, maybe self-help groups, would be welcomed for sufferers. Diabetic clinics within local hospitals could possibly let us have a 'corner' to discuss any problems we may have. We need someone to understand - this may be a patient who has counselling or caring experience, for instance.

I would like to learn more about fluid-balancing dosages of DDAVP, mineral loss (eg potassium) due to dehydration, alleviating retention of water, bloated feelings, which foods are best avoided, etc.

I am still 'sniffing' my DDAVP today, 9 years later. I have worked as a building society cashier for the past 5 years, and went to art college full time for 2 years, gaining a distinction in Art & Design. I enjoy a full and happy life. DI is just a simple treatable condition.