I’m going to tell you about something that has been plaguing my life for the last few months. I have been having migraines almost constantly. I am always either in the premonitory/ aura, actual migraine attack, or postdrome stage. I get out of one and start getting the aura for another.
I know the exact date that it all started. It was March 12th, 2017. It was a Sunday. I watched Crufts the day before. I started having a migraine, which wasn’t nice, but I used to have them about twice a year, about six months apart, and so I assumed I was simply due for one.
My sister had recently bought my phone, so before I totally stopped being able to function, I looked up whether there was “an app for that” and found Migraine Buddy. So I started tracking my migraines (which I have done for months, although it turns out I forgot to record at least 2 last week, and then couldn’t record while camping, so the record string is broken).
I believe the 15th of March was the first time I was trapped in bed all day with such torturous pain, I honestly thought I was going to die there.
Before we go any further with this, let’s talk about WHAT a migraine actually is. A migraine is a type of headache, yes, but to refer to migraine as “just a headache” is highly erroneous. A migraine is a medical event that affects the entire body.
Most people who say they are having a migraine are actually just having a bad headache, without all the other things that go along with a migraine. You can be blinded by odd patterns, you can need to stay in complete darkness to avoid your eyeballs feeling like they’re on fire, you can get projectile diarrhoea, projectile vomiting, your limbs go weak and act like they aren’t even attached to you. And of course, the head pain, on one side, and very severe. Not everyone gets every symptom every time, but there will be a combination of them accompanying the violent head pulsing.
My original, occasional migraines that I’ve had for as long as I can remember, were quite uniform in their presentation: pain all down my face, feeling of a spike going up through jaw, light sensitivity, vomiting.
These migraines have been different. The jaw-spike feeling isn’t there (although I got it once, recently).
The symptoms I am currently living with:
- Intense pain and violent pulsing in my left temple. I honestly want to drill a hole in myself sometimes. It feels like something underneath my temple needs to burst out of my head.
- Neck pain, with an odd tightening sensation. Sort of like clingfilm being stretched over the opening of a bowl, but in reverse, stretching towards a central point somehow.
- Visual auras and disturbances, sometimes to the point of blindness
- Increase in visual “snowing”
- Regular vomiting, nearly constant nausea.
- Light sensitivity, needing to be in the dark sometimes.
- Eyeball pain, often associated with above point.
- Abnormally wide pupils sometimes.
- Finding normal smells intolerable.
- I wake up in pain in the morning, there is usually a bit of a lull in the middle of the day, and then it ramps up again in the evening.
- Tension headaches on both sides of my head, spreading down to my neck.
- More extreme fatigue than usual with existing disability, I could honestly sleep all day.
- Effectiveness of Sumatriptan and Buccastem has gone way downhill.
Things that make me worry about brain involvement 🧠:
- Increase in absence seizures (I had seizures before all this but now they are worse)
- Suddenly being aware that the situation has changed but having no idea how I got there; e.g. one time Will was helping me out of the shower, then suddenly I was sat on the bed. I called Will but it turned out he had gone to work. I had no idea how I got there, my brain just erased an entire section of time and apparently I was talking normally to him and did say goodbye when he left for work.
- Trying to speak for a while but nothing coming out.
- Numb spots and weakness in my forearms, especially on the left side.
- Worse depression, irritable all the time.
- Just so confused all the time. I find myself saying “I don’t know whether I’m coming or going” sixty time a day.
- I have been losing my hearing since 2015 and I wear hearing aids when going out, I’m beginning to wonder if there’s a connection with everything else.
- Tinnitus has gotten worse, and is now fairly constant regardless of head position.
- I just never seem to have a clear head.
Knowing me there’s almost definitely something I’ve forgotten.
Apparently some of my symptoms are red flags for a brain tumour so I’ve been referred to neurology. My original appointment date was pushed back because the neurologist decided to go on holiday. I just got another letter saying it’s been pushed back a second time. I don’t know if it’s because they’ve decided to stay on holiday or God knows what other reason. I’m honestly not sure I’ll live to see the appointment.
This all counts as “chronic migraine” because I have migraines for more than 15 days of the month.
I was already severely disabled but I didn’t realise that I could be even less functional. This is a horrible way to live. I just hope a neurologist can do something to end it when I finally get to see one.