Sodium, Seizures, and Oedema

My last post showed pictures of the severe oedema I suffer as a side-effect of the targetted therapy that keeps me here. This says more about it and related issues. I’ll then shut up about medical stuff for a while. 

Since this started, I have had three seizures serious enough to put me in an emergency ambulance to hospital. Our GP advises you don’t need to call for help for “ordinary” seizures, just put in the recovery position to sleep it off, but when longer or more severe than usual, you do. The last, about three months ago, was a double one. I remember little about it, but apparently I had one seizure, recovered well enough to get up to bed, and immediately had a second. 

Looking back at blood tests, it turns out that, after each seizure, my blood sodium levels had been low. Doctors call it hyponatraemia. School chemistry reminds me that the symbol for sodium is Na, for Natrium, its old name. 

The normal level is 133-146 mmol/L. Mine are usually just there, or slightly under, but after seizures they have been around 125. Normally, we can cope with that, but my condition alters the threshold and makes me more susceptible. A sodium drip brings them back up very quickly. Last time, they even let me home the following day. 

A hospital doctor said not to drink so much liquid, and to stop the Furosemide water pills used to manage the oedema, as both these things deplete sodium levels. I took this on board, realising that all my seizures have been in the evening after a bottle of beer, or a pint mug of tea, or both. I don’t know how quickly blood sodium can go down, but it could be quite quickly. Hyperventilating seems to be involved, too. 

I don’t think they realised either how much fluid I had been drinking, or how little my salt intake had been. I had been taking in around 6 or 7 pints of liquid a day (say 3 litres). My one-pint mugs of tea were cut to half-pints, and out went the dilute fruit juice and late-afternoon bottle of beer, and other extra water. That is a reduction of at least 3 clearly identifiable pints a day to begin with (say 1.5 litres). As regards salt intake, we have always used minimal salt in cooking (our daughter complains), and when I developed oedema I was told to stop eating crisps and other salty snacks because salt exacerbates it. So, on the one hand, I am not to have much salt, and on the other my blood sodium level is too low! 

The changes were disastrous. The oedema went up massively, and I gained about 12 pounds in weight in three weeks (say 5kg). I was slobbing around like a seal on a sandbank, and could hardly walk up the stairs or garden, or anywhere at times. The breathlessness because of fluid around the lungs is the most difficult part. The inactivity makes you weaker and weaker. 

As I still had some Furosemide left, I began it again as an experiment, not even every day, and lost 8 pounds quite quickly. Our heat waves set me back a bit, but it has been agreed I can have Furosemide again, and, considering how much fluid I had been having, I don’t have to stick too rigidly to the 3 pints per day they said, which was impossible in the heat anyway. I was having headaches and confusion, classic signs of dehydration. The GP was very quick to remove Furosemide from my prescription and it has been difficult to get it back on again. They will not add what the consultant says, but they are all too quick to remove things. Anyway, common sense prevails. It shows the importance of advice from the consultant who knows and trusts you to be sensible, rather than a doctor doing a shift in a hospital. 

The main thing is to keep sodium within near-normal levels. The trouble is, you don’t know what it is without a blood test, and oedema makes those very difficult. They have often not been able to get any. When they have, the level seems to have been all right. I also seem to be making progress with the oedema again. I don’t want another seizure. It could finish me off.