The Dangers of Drinking Too Much Water

[cmg]

Ok Girls, sit down, take a deep breath and read this because you really need to know this and I have never once heard anyone talk about it. I don’t want to stop anyone from drinking enough water because we all know how important it is to avoid OHSS because they tell us. But does anyone ever mention that you can drink too much as well too little? I was never told this but because of too much water I have just had the worst week of my entire life by a very long way and am lucky to be alive. I have only just got out of hospital.

This is not an apocryphal tale off the internet that happened to a friend of a friend of someone’s cousin in Okalahoma. This is my story and that of my wonderful husband, whom I’m sick of calling DH, and am going to start referring to as David, as that is his name. It happened right here in the UK last week and I’m going to tell it to you in all the gory detail, partly because it is therapeutic for me to write it down (I have been writing this in my head in hospital to try to get to sleep) and partly because I think you need to know to avoid it happening to you. I’d be interested to know if I’m the only person this has ever happened to or whether it’s happened to others too. This is a very long thread (I wrote it in Word first and pasted it in), so I’ll start another one for responses, so people don’t have to keep trawling to the bottom.

I’m 42 and this was our first go at IVF, so I hadn’t known what to expect and was a bit apprehensive. But I’d been really pleased at how well it was going right up to the beginning of last week. I had a bit of a weepy moody patch at the beginning but that wore off and I had no real emotional side effects and physically I was feeling pretty good too. I down-regged on Suprefact injections for a week or so and then they started me on the stimm injections. I did 11 days of these and responded so well that I had about 30 follies growing, so they stopped the injections but started monitoring me every day to see when I might be ready to trigger. My oestroedil level went up as high as 16000 (16000 whats I don’t know but that was the figure I was given) and they wanted to get that down to, I think, around the 10000 mark.

I had made life more complicated for myself by choosing a clinic in London when I live in Bath, but it’s the one with the best results in the country (the ARGC) and I’m old for this and I thought it was worth it for the personalised service, which is very much tailored around the individual. So I bought a season ticket on the train and travelled up and down every day. It’s about 2 hours door to door each way. I knew I always had the option to stay with friends but I liked sleeping in my own bed so I put up with it.

Anyway, everything was going fabulously until the beginning of last week. The travelling had started to tire me, my hormone levels had not shifted overnight and I was starting to feel quite sick. In my last entry on the August cycle buddies I sound quite sorry for myself. I’d also noticed that my wrists were swollen but didn’t think much of it. I was being really rigorous with the water as the weather was very hot and was drinking about 6 or 7 litres a day.

On Monday night I threw up a lot and was dreading the journey the next day. I managed to get one of my blood tests done at my local hospital and the results sent up to the clinic so then I could leave going up there until the afternoon for a late visit. David was concerned enough to come with me and we decided to stay overnight with some friends as we knew we’d have to be there Wed as well. In the cab on the way to the station I threw up all over myself and we didn’t have time to go back. Luckily I had a spare top but I had to wear those trousers all the way up on the train! Plus I had to rush off to the loo about every half hour to chuck up again. We got a cab straight to the clinic and were told that physically everything was fine with me but I must be anxious and needed to calm down. I mentioned the swollen wrists but it was brushed aside. We went round to our friends’ place and I went straight to bed, still being sick. David was so worried at 3am that he rang the emergency number and they said I was suffering from anxiety, to forget about the water and try and get some sleep.

So next morning, I borrowed a clean dress from my friend and went to the clinic carrying a bucket so I knew I can always throw up in safety (yes I did feel as stupid as this sounds). I had my first blood test quite early but we knew we’d have to hang around all day to have another one so I went and had some acupuncture and shiatsu to calm me down and this seemed to help the nausea. I managed to eat for the first time in 36 hours. We went back to the clinic and the news was great – my levels were finally coming down and subject to this one final blood test we could trigger tonight. We decided to go back to our friends’ place and said we’d phone the clinic for confirmation later in the evening.

Except that’s where it all fell apart. We got back there (thank God, this could have happened on the tube) and THEN I HAD A BRAIN SIEZURE!!!! I have never had one before and there is no history of epilepsy in my family so this was absolutely a bolt from the blue. I had another one in the ambulance on the way to the hospital and they quickly figured out that the problem was LOW SODIUM. Apparently if you drink too much water your sodium level falls dramatically and if it gets too low it can trigger a brain seizure. It’s a well-known phenomenon which affects marathon runners and ecstasy takers, who also tend to drink a lot of water. I’d heard of it but didn’t really think about it and assumed it didn’t apply to us because our ovaries need the water. And, of course, no one had ever warned me I could drink too much, only too little. I was actually told there was no upper limit.

The hospital said that 135 is a kind of baseline sodium level and if you get below 120 they’d put you on a saline drip and monitor you very carefully. When I was admitted my sodium level was 109. Funnily enough I had wondered whether my body was missing something because of all the vomiting and thought about taking those Dia-oralyte salts that you take when you get the runs. I sent David out for some on Tues but the chemist was shut because it was lunchtime and then we had to go to London so I let it go. I asked the clinic if it would help to take them and they said “You can if you want” but weren’t particularly encouraging of the idea one way or the other. I will always wonder whether that would have made the difference.

Anyway, some people come round from these fits very quickly but I didn’t, so I was taken to intensive care and put on a saline drip to increase my levels very, very slowly. I was also on a ventilator and under heavy sedation so that I didn’t pull the breathing tube out. David is haunted by visions of me with tubes coming out of every orifice and wires attached all over me. He stayed with me until 3.30am when he accepted that I wasn’t going to come round that night and went back to get some sleep.

Next morning he had to phone my brother so someone could tell my Mum and then came back in and talked to me, massaged my feet, tried to get me to squeeze his hand, all the while not knowing whether I would wake up and if so, would I have brain damage. He caught sight of my brain scan which apparently wasn’t normal (my brain was swollen as well as my wrists) and although they said it was a remote chance, he couldn’t know for certain I’d be ok.

They tried to bring me round that day but I kept interfering with the breathing tube so that had to keep me sedated and David went back to our friends’ place on Thursday night still not knowing what was going to happen to me.

On Friday morning I did finally come round, thinking "how weird I keep dreaming I’m in a hospital" then, "Oh shit, this isn’t a dream". Apparently in a not quite conscious state I’d been communicating with pencil and paper and the first thing I’d written was “What about my IVF?”. The first thing the doctor said to me when I came round was “that man (meaning David) has not left your side”, which while not being strictly true (he had had breaks) did make me feel very loved. It also made me realise what a terrible ordeal it had been for him.

Waking up with a breathing tube in my throat is the one of the most horrible things that has ever happened to me, as I felt like I was choking but, if I went to make any slight adjustment to it, I got yelled at not to touch the tube and, of course, I couldn’t speak to explain to them. Anyway, eventually they could take it out and most of the other tubes, though they left the catheter so they could monitor my urine. During the fit, I’d inhaled some vomit and so had quite a nasty chest infection and they transferred me to a chest ward. I was there until yesterday (Tuesday), but luckily it cleared up quite quickly and now I am home.

In terms of my IVF treatment, obviously we missed that very narrow window to harvest the eggs, so it’s all over. In consultation with the clinic, the hospital kept me on the down-reg’ing injections (bless ‘em, they didn’t really understand IVF and I’m sure they thought they were continuing my treatment and that I might be able to carry on) but I’m not sure quite what happens now in terms of coming off the medication safely and getting my system back to normal.

I don’t know whether I can ever face doing this again as I would be constantly worrying about too much vs too little water. I can’t understand why they don’t monitor our sodium levels, when it would be such an easy thing to do and they get enough blood samples from us. I think it’s going to take me a while to come to terms with what’s happened to me and to decide what to do about it, but it has been incredibly therapeutic to write this down. Also my main concern is to stop this happening to anyone else. I’m sorry it’s such a long thread, but I wanted to give the whole story. As I said at the beginning, I’m posting another thread to respond to this one to save scrolling. When I’m feeling a little stronger, I am really looking forward to a couple of guilt free glasses of wine!

Hope I haven’t scared you too much

Caroline

[ChicagoKelly]

Caroline -- What a horrible ordeal. I'm so very sorry this happened to you. It must have been terrifying for you and your husband. Are you feeling better? I hope so. Take care of yourself.

[Claire]

You poor, poor thing, what a nightmare.
Caroline, these type of things are what worry me about the whole IVF thing.
I have heard of drinking too much water. I remember a case locally where something similar happened. The person had drunk that much to avoid getting sunstroke that she had 'drowned' in it.
I don't know, you try to look after yourself as best as possible and then something like this happens. I'm so sorry about your IVF, that's just awful that you went through all this hell to find that you missed EC as well.
So pleased you're okay. Your post will stay in my mind when I start IVF. Good luck with whatever you decide to do next.
love claire x