Carotid artery dissection: I hadn’t even heard of it.

I didn’t know how to start this one so I’m just going to write it as it comes.

In July of 2015 my life changed drastically, maybe forever, I don’t know. I sincerely hope not. There I was on a normal Friday morning getting the kids ready for school and getting myself ready to go to work after they were safely deposited in their respective places of learning. I had woken up that morning with a headache and a feeling like I was about to come down with something. My eyes felt a bit weird as though there was something pushing at them from behind and I was ‘seeing stars’ a little. With it being a busy day I didn’t really have the time to think about it too much and me and my man were off to a hotel that night so there was a lot to do.

As soon as the kids were at school I drove straight to work. I had my own cleaning business and was building up a good amount of regular clients, I only had one to do on this particular Friday though as my other Friday lady had requested a different day the following week due to her family visiting. I completed the work as usual although I wasn’t feeling 100% and at the end of the job I drove home to pack my overnight bag in readiness for staying at The Grand Hotel in Brighton, one our favourite hotels. The headache was persistent as was the flashing lights and pressure behind my eyes. By about 3pm, when I was renewing my makeup ready for the drive to the coast I noticed that my left pupil was tiny and it wasn’t reacting to light at all. My eyelid on that side was also drooping slightly. I can’t explain why but I wasn’t actually too concerned about this. I did have a quick ‘google’ which threw up articles on Horner’s syndrome but I didn’t read that far into it to see what some of the causes could be.

I continued to feel ‘off colour’ for the trip down and throughout the evening. We went to a lovely Chinese restaurant for our evening meal but I had lost my appetite and hardly ate a thing. Back at The Grand a bit later I wasn’t able to finish my cocktail in the bar lounge (very unusual for me!). That night, sleep didn’t come easily and the headache worsened. Breakfast was hardly touched and the headache was still going strong along with the eye pressure and flashing lights. After another google session it looked like my problem was down to sinus trouble and we walked into town to find a chemist. After a brief discussion with the chemist they agreed with the idea of sinus issues and sold me some tablets.

We found a cafe and sat down for a while, by this point I was starting to feel worse, I couldn’t focus on much at all as the visual disturbances were increasing in intensity. Needless to say, the rest of the day passed in a bit of a blur. Literally. We returned home late that afternoon.

The next morning, Sunday, nothing had improved and it was clear something was awry. It was agreed that I should go to the local hospital which deals with minor injuries for a professional opinion. After a lengthy assessment and phone calls to an optometrist I was sent to A and E. I was subjected to X-rays, a CT scan, blood tests and other observations and at about 9:30pm I was discharged with a diagnosis of Horner’s syndrome and was told that they couldn’t find a reason for it but I was reassured it should pass on its own. Basically, Horner’s syndrome is the name for a group of symptoms, headache, drooping eyelid and constricted pupil.

I’ll always remember the huge hug my man gave me at that moment as he said ‘thank god!’.

Not long after getting home from the hospital my mobile rang. It was a consultant at the hospital who had just read my notes, he insisted that I return to the hospital the next morning for an MRI scan. He didn’t say why.

That night I felt no better but was able to get some sleep.

The next morning, Monday, I got the kids off to school as normal and drove myself back to the hospital to await my MRI. I spent hours sitting in various waiting rooms before having an MRI, then a CT angiogram. More hours were spent waiting around before I was finally called in to see a doctor to view my results. I was not expecting what happened next. I was sat down in front of the doctor and she told me that I had a tear in my carotid artery and that it was life-threatening. She told me I was being admitted immediately. I’m not sure exactly what was going on in my head at this particular point but I remember protesting that I had to get home for the kids and that I couldn’t possibly stay overnight in hospital as I had to go to work the next day. Thinking about it now it seems a really stupid thing to say but I said it.

Next came the phone calls that had to be made to family. First I rang my other half to let him know, he left work straight away, he was working in London at the time, quite a drive away. I had been messaging one of my daughters throughout the day while I’d been waiting around, she was on holiday and was on her way back from Italy but had a few stops to make in various towns along the way so wasn’t due back for a few days. By the time I had been told the bad news I had completely forgotten that she wasn’t in the country even though she had just said she was on her way and would be back as soon as possible. I asked her to let my Mum know as I was called into another side room to be pumped full of a high dose of aspirin to dissolve the blood clot that had formed in my torn carotid artery.

I was at serious risk of stroke if the blood clot broke away and travelled up my carotid artery to my brain. I wasn’t allowed to leave the department I was in just in case anything happened to me so had to just wait for my family to arrive. I was admitted to the acute medical unit and shortly afterwards the headaches began to get worse. I’ve never felt pain like it, give me the pain of child-birth instead any day, it was horrendous. Morphine and codene were now my best friends. I spent the next couple of weeks in the stroke ward in extreme pain and experiencing massive sensory overload. I couldn’t bare to be under the bright white lights of the ward and thankfully was able to spend some of my stay in a side room with the lights off and the blind drawn against the bright summer sunshine. Every little sound seemed to be magnified a million times and I was constantly dizzy. I was told by my neurologist that I should lay still to give my carotid artery the best chance of healing. Carotid artery dissection is such a rare condition that most of the doctors I saw had never treated a patient for it before. The hospital itself had only ever seen one patient with the condition, a lorry driver that had been involved in an RTA and had torn his artery due to whiplash. After almost two weeks I was pleading with the doctors to let me return home, the hustle and bustle of everyday hospital life was making me feel worse and I was convinced that I’d feel so much better at home. They let me go and I was then able to start my recovery in the relative peace and quite of my own home.

The headaches began to lessen although two and a half years on I still get them if I do too much and I’m still left with sensitivity to light and noise. I’ve not yet returned to work as the fatigue that remains is so severe I am exhausted after only the smallest of activity. I have been subjected to many tests since my diagnosis but to no avail. No one knows what to do with me, there is no treatment and my artery is now 100% blocked. Sometimes it feels like I am being sent for tests purely because the doctors haven’t a clue but they want to be seen to be doing something.

Fortunately, I have found a couple of groups on social media where other CAD (carotid artery dissection) sufferers can share their experiences and I have to admit it’s been of more help to me than any doctor. Just being able to relate to their experiences is such a huge thing. I’m only now beginning to accept my new ‘normal’ although it’s very hard sometimes when the mind is so willing but the body just can’t deliver.

I know that I am lucky to be here and I’m aware that it could have been a lot worse. Had they not diagnosed me as quickly I would have ended up having a stroke and then who knows what would have happened.