It hasn’t been very long since I did my last life update, but so much has happened since then. I’ve got two more diagnoses and I’ve spent 10 days in hospital due to allergies, anaphylaxis and seizures!
Admitted for Allergies
On Friday 24th May, I had an allergic reaction when I was in a garden centre. At first, I thought I just wasn’t feeling well, like maybe I was flaring or had caught a bug. It wasn’t until my mum pointed out that my arms were bright red that I realised I was having an allergic reaction. We went to a pharmacy and bought some antihistamines, but they didn’t do anything so off we went to A&E.
In A&E, I kept reacting to what appeared to be nothing (I still don’t know the triggers). I had bloods taken, which came back normal as they always do. I was put on a drip to stay hydrated. Due to all the reactions, I was admitted for observation.
I saw a doctor the next day (Saturday 25th May) who said I could be discharged – it just so happened that I never had a reaction when I was talking to the doctors or nurses. I told him I was still reacting, so we decided it was best for me to stay in. It’s lucky that I did, because about 20 minutes later I went into anaphylaxis. If I hadn’t stayed in, it would have happened in the car! This was really scary. I was struggling to breathe and my limbs went numb and tingly. I had to be put on oxygen because my oxygen saturation went down to 73% (it’s never supposed to go below 97%)! One of the doctors had to do an artery blood test which showed that my blood was alkalotic. This means that my blood was too alkaline due to a lack of carbon dioxide which happened because I was hyperventilating. I was given hydrocortisone, a corticosteroid, to stop the anaphylaxis, as it’s safer than epinephrine (what’s in an EpiPen).
Over the next few days, my reactions kept happening and I still don’t know why. Thankfully, I never went into anaphylaxis again. On Monday 27th May, I was discharged. There was nothing they could do other than refer me to an immunologist. Nothing was really helping, so there was no point in me staying. I was prescribed fexofenadine and chlorphenamine maleate (antihistamines) to try to control the reactions and to try to prevent anaphylaxis. I was also prescribed lorazepam, an anti-anxiety drug, as I was very anxious I would go into anaphylaxis again and got distressed whenever I would have a more severe reaction that affected my breathing or took a long time to go away.
Admitted for Seizures
This admission was a lot more eventful than the previous one. My mum had to call 3 ambulances before my admission because my seizures got progressively worse.
On Wednesday 29th May, the first ambulance was called. I was struggling to breathe and thought I was going into anaphylaxis again. They took me to A&E where I had bloods taken. They came back normal and I was discharged. The doctor wasn’t too concerned, as he witnessed a few seizures and could see that they weren’t epileptic – and he knew they weren’t epileptic because he managed to stop one of them.
The second ambulance was called the next afternoon (Thursday 30th May). The ambulance crew did my obs and stayed for a little over an hour, but decided that it was best for me to stay home. After all, I was discharged from A&E about 12 hours earlier.
Later that evening, the third ambulance was called. I was struggling for breath and my seizures just kept getting worse. We didn’t want to have to keep calling ambulances, so we decided it was best for me to be taken to A&E again. I ended up in resus first because I was seizing pretty much the whole time I was in the ambulance. They had given me IV diazepam, but that didn’t do anything except make me confused. When I was in resus, I had no idea where I was. Every time my seizures would stop, the first thing I said was “Where am I?”.
Finally, after coming out of resus and being observed in A&E, I was admitted. I had 51 seizures on the Friday (31st May). They were non-stop.
Over the next few days, they finally started to ease off. Some of them lasted longer than they had previously, but I had a lot more time in between them. The longest seizure I had was on the Sunday (2nd June), the day before I was discharged. It lasted an hour and 46 minutes. Luckily, I haven’t had a really long one since. It took my body a long time to recover from that.
Throughout the whole admission, I managed to freak out doctors, nurses and some visitors when I was having seizures. Every time the nurses switched shifts I ended up having a seizure before they had been told I was admitted for seizures. This happened a lot more at the beginning of the admission. Eventually, it was back to the same nurses I had seen a couple of days earlier.
On Monday 3rd June I finally saw a neurologist. He was really nice and knew about Hypermobility Spectrum Disorder (the only diagnosis I went in with), Ehlers-Danlos Syndrome and dysautonomia (my suspected diagnoses). He diagnosed me with Non-Epileptic Attack Disorder (NEAD) and Functional Neurological Disorder (FND) and also said he suspects I have ME/CFS and fibromyalgia too.
Both the neurologist and my mum wanted me to stay in hospital until my seizures had stopped, but I decided to ask to be discharged in the afternoon. I didn’t know how long it would be until my seizures stopped and I really didn’t want to stay in hospital any longer. The neurologist said he was happy to discharge me whenever I wanted to go home because it was ultimately my decision.
What is NEAD?
NEAD stands for Non-Epileptic Attack Disorder. This is what my seizures fall under. It’s usually triggered by stress. The seizures are basically the body’s way of coping by shutting down. It’s a different presentation of the fight or flight response.
You can read more about NEAD through nonepilepticattackdisorder.org.uk.
What is FND?
FND stands for Functional Neurological Disorder. It’s basically my brain sending the wrong signals to my body. FND is what caused my paralysis over Christmas, and also my weakness in my limbs which regularly happens in my legs. It’s not my brain just making everything up. All the symptoms I experience as a result of FND are real but no one knows why they happen.
You can read more about FND through rarediseases.org.