Carly shares her story of how her persistent headaches led her to an eventual cavernoma diagnosis, despite several dismissals that her pain was ‘just a migraine’.
My story starts on the 17th Jan 2022.
I was at work as normal when I felt a bit of a headache creeping in. I’ve ALWAYS suffered with terrible migraines so this wasn’t anything out the ordinary. It was a Monday, and by the Thursday I was in so much pain; it didn’t feel like my typical migraine pain.
My GP told me to take over the counter pain killers as well as my migraine medication, but by Friday the paramedics came out because, by this point, I could barely function due to the pain. I wasn’t even able to take care of my 6 year old son – he was in the care of my parents. The paramedics told me all my OBS were fine and they arranged for more migraine medication to be collected from the pharmacy the next day. By Sunday, 111 advised me to go to A&E because I wasn’t any better and I just knew myself that it was NOT a migraine!
The doctor in A&E was very dismissive and put it down to a bad ‘headache’. He stated he was not going to do a CT scan because – in his words – it would be “overkill”. Ironic. He sent me home after having a quick shot of oramoph and a prescription for some stronger pain killers.
One week since the pain began
I was in and out of sleep most of the day. The pain was the same and my speech was more slurred and clumsy now. I went to bed that night, but by 1am on Tuesday morning I was ringing for my mum to help me. She heard my desperation and called an ambulance.
Again, they said my OBs were fine but, due to the pain being so intense for a week, they took me into hospital. They did a CT straight away which revealed I had actually had a haemorrhage in my cerebellum. They sent me straight to Sheffield Hospital where they have a specialist neuro department. The first day was OK, I was given stronger painkillers and seemed ok. They even spoke of sending me home…But the next morning they rushed me into intensive care!
I didn’t realise what was happening at the time, but it turned out I had developed a lot of swelling as well as hydrocephalus. I spent 4 days being monitored very closely around the clock, making sure the swelling didn’t increase. By this point I was heavily sedated, only waking to vomit. This happened every single time the nurses needed to move or turn me. When It was safe for me to move back to the general ward, I was completely different to when I first got there… My right side was now affected; I wasn’t able to walk unaided, or even hold a knife and fork. My speech was slow and I couldn’t alter my voice, as in regulate the volume or tone. I eventually moved to a more local hospital where I had some physiotherapy and they told me that I’d had a stroke.
Three weeks later
I was back home (at my mums house) and receiving occupational therapy there whilst beginning my recovery. I still had a lot of swelling and haematoma so at this point they still couldn’t see what had caused the bleed. I slept A LOT, and needed oramorph and anti sickness meds daily to help with the pain of the haematoma breaking down and sickness from moving around.
I very slowly learned how to do what I needed to do to manage my daily life, and after a couple of months I was able to move back to my house with my son. My parents were there all the time to start with, because I was still unable to do things unaided and obviously I needed to make sure my son was safe and well cared for.
Fast forward to Aug 2022
I finally, after many months of uncertainty, found out I have a cavernoma!
My recovery is still very much ongoing, but I’ve learnt how to walk again, and my balance and coordination is improving so much! My speech is brilliant, apart from when I’m having a particularly fatigued day. Fatigue is something I struggle with quite badly now unfortunately, and it causes everything else to become worse. But, on the ‘good days’ I can lead a relatively normal day and other than using my walking stick, I appear in perfect health! I was studying at the time of my bleed, so unfortunately this has had to be postponed until I’m able to continue.
I continue to suffer with hypersensitivity to noise and light, so certain environments can be extremely difficult for me and can induce fatigue very quickly! To be able to say I’m not even a year on yet, and I’m walking/talking again, and I’m actually ALIVE, is a massive bonus. Everything else will fall into place when it’s ready! My son is my main focus now, I continue to recover for him.