Update - A Trip To A&E

Hi Everyone!

Today I wanted to bring you a little update on how my medication reduction has been going.

To start off with, everything was going ok. I was experiencing intense fatigue initially after the decrease, but this seemed to sort itself our fairly quickly each time & after the first few reductions things became easier.

A few weeks ago, I had difficulty & pain when swallowing. It felt as though my food weren’t moving down inside me properly, almost as though it were getting stuck. I went to the GP, who initially upped the dose of my anti-acid. A week later & no improvement. I had lost 5lb & was living off nothing but bowls of cereal. I went back to my GP, who prescribed me Metoclopramide, to be taken three times a day for a week, then as needed. 

Everything was going well, I put back on the 5lb I had lost & was finding the pain I experienced on eating getting further & further down my chest. I was then left in discomfort, but not in pain. On day seven however, I woke with diarrhea & vomiting. I was experiencing constant palpitations that got stronger & stronger throughout the day. I couldn’t sit up without intense dizziness & experienced a pooling feeling down my legs a number of times whilst trying to get myself to the bathroom! My body was going from cold to hot & clammy with no middle ground! With my being unable to keep water & my tablets down I was really worried.

The last thing I wanted to do was end up in A&E, but I knew I couldn’t carry on as I was without help. I tried to phone my sister, an A&E nurse for advice. She understands the difficulty fluorescent lights cause me. She didn’t answer so I tried her husband, a paramedic, who I couldn’t get through to either. My next thought was to try 111, the new version of NHS Direct. The woman I spoke to was lovely, I couldn’t have asked for more. As it was in GP opening times she told me to get an emergency appointment with them & she offered to send through details of our conversation so the surgery knew I’d spoken to her. I had to speak to the on call GP, someone I don’t get on with as she seems to think that the symptoms she experiences with her hypermobility syndrome are universal! She was very abrupt & patronising to the point where she made me cry! Freya heard & sat outside the bedroom door started mewing at me as though to say ‘It’s ok Mummy, don’t cry!’ She’s such a sweetie!

The walk to the Dr’s is about 10 minutes but I couldn’t manage it so I had to get a taxi. I was amazed I could sit up in the taxi. I took a bowl with me just incase I started being sick again! The GP I saw was lovely. She understood that A&E was a last resort for me. She did an ECG & took my pulse, which concerned her as it was 132bpm. She was unable to give me Prochlorperazine in a soluble version that can be placed between the gum & the lip to dissolve. Unfortunately, I had a severe reaction to this drug in 1999 that put me in hospital. This & the fact that I was dehydrated meant that our only option was for me to go to A&E. I was very thankful that she went through every option before we reached this point & that she was so thorough in doing the ECG. 

The GP phoned the A&E department ahead of me & provided me with a letter to give to them on arrival. I checked in at 5:30 & was seen by the nurse at 6:15. By this point my heart rate was up to 140bpm. They hooked me up to a saline drip to hydrate me. At 9pm we asked what was happening & were told that the day staff were just handing over to the night staff & that once they had done this there were two patients to be seen before me. 10:30 rolled around & I still hadn’t been seen. Dan asked what was happening to be told that they were finding me a bed! We hadn’t been told that they were going to be keeping me in.

Dan & I argued that this was not in my best interest. Being photosensitive, hospitals are not great for me at the best of times. With my not having been able to keep my anti-convulsant medications down I was not prepared to entertain the thought of staying overnight for one moment. I was supposed to stay in after my knee op, but the things that were supposed to be put in place hadn’t been & it was a complete disaster. The nursing staff tried to tell us that I needed to be seen by the medical team, but they had no answer when we pointed out that I’d been there 5 hours & not seen a Dr, so it could hardly be that bad! By this point I had picked up a little from the fluid & had kept my evening tablets & a little water down. They took my heart rate again, which had come down to 130bpm, so grudgingly agreed to allow me to discharge myself. We left the hospital at 11pm!

I took a while for me to get back to normal, experiencing diarrhea again a couple of days later. I phoned the hospital who look after me for my migraine incase any of this could be related to my medication reduction. They told me not to take any more of the Metoclopramide - it turns out this drug can cause diarrhea & tachycardia! I really shouldn’t have been put on it as I’m suspected of having PoTS! I was told to phone back after a week & if I’m still having difficulty with spasms when swallowing we’ll up the dose for a little while, before reducing a bit.

So things have been eventful! I’ll keep you up to date…

Tania Xx