One of the questions I get asked quite often is: How did I get my diagnosis of migraines and micro-haemorrhages?
The answer is, unfortunately, that it took years.
Living with headaches every day
For years, I suffered with headaches. I would wake up with a headache, take some pain relief, and then, several hours later, I would have another sudden headache and need more pain relief. Then I would go to bed with another headache.
This was my normal.
Every single day, I would have multiple headaches.
Over the years, I had been to my GP several times about them, but I was often told to get my eyes tested.
With Noonan syndrome, eye deterioration is a known issue, and I do have poor vision, particularly in my right eye. So, I regularly went to the opticians and had my prescription checked.
In fact, my prescription changed so much that, on one occasion, the change was so significant that they could only give me half of the prescription strength because otherwise I would have struggled to adjust to it.
Despite regularly having my eyes tested and my prescription changing, it never made any positive difference to my headaches.
Finally reaching my limit
After years of feeling like I was being fobbed off, I eventually reached the point where I had simply had enough.
At one GP appointment, I really laid my cards on the table.
The headaches were starting to affect my sleep and my everyday life, and I couldn’t bear it anymore. They weren’t necessarily the kind of headaches that left me hiding in a dark room, but having constant headaches day after day was incredibly draining.
Thankfully, my London heart specialist was the one who eventually referred me to the neurology department at Ipswich Hospital.
The MRI that changed everything
At my neurology appointment, I had an EEG and an MRI.
I received the results relatively quickly, and this was when they discovered the micro-haemorrhages.
I remember being told that they were extremely small and were not expected to have any significant impact on my life. However, the neurologist believed they were likely to be linked to the cluster of migraines I was experiencing.
Because the headaches were also disturbing my sleep, he wanted to try to tackle both problems together.
I was prescribed Amitriptyline, initially at 10 mg.
The medication did help slightly, but I was still experiencing regular headaches.
At what I think was my three-month follow-up appointment, my Amitriptyline was increased to 30 mg. This was also intended to help with the severe back pain I have been experiencing, which is another issue I am still waiting to see a spinal doctor about.
Where I am now
As of today, I have reduced my Amitriptyline to 20 mg a day.
The reason for reducing it was the extreme night terrors and thrashing I was experiencing during sleep. Nobody really knows whether these were a direct result of the medication or whether they are simply something I experience anyway.
Either way, they became quite extreme, and it was decided that reducing the medication was the best option for me.
The good news is that, despite reducing my medication, I am now relatively headache-free. Compared with where I was before, when I was experiencing multiple headaches every single day, this is a huge improvement. These days, I might have one headache a week at most, which is a massive change from my previous daily struggle.
And as for the dreams?
Well, that’s a whole different story!
My diagnosis wasn’t straightforward
Looking back, what stands out to me most is how long I lived with these headaches before anyone looked further into what could be causing them.
I don’t know whether my headaches could have been investigated sooner, but I do know how important it was that, eventually, someone listened to me when I said that something wasn’t right.
For me, getting the MRI was the turning point. It finally gave me an explanation for what I had been experiencing for years and, perhaps more importantly, gave me answers to something I had been struggling with for a very long time.
There is still a lot I don’t know, and I am still trying to get answers about some of my other health problems. But this was the beginning of finally understanding what was happening with my migraines and the micro-haemorrhages.
And going from multiple headaches every single day to perhaps one a week is something I am incredibly grateful for.
