I’ve always been “headachy”. I remember visiting the doctor when I was in my early teens, about 13 or 14, as I’d started to get daily tension headaches which came on at around 2pm every afternoon. In the 70s and 80s kids weren’t treated like they are now and I was made to feel like I was attention-seeking or didn’t like school and was trying to get out of afternoon lessons, neither of which was the case. So I just took paracetomol and got on with it. Hindsight’s a wonderful thing and I now know my mast cell issues ramped up at puberty, so looking back I’m assuming the headaches were hormone/mast cell related. The daily headaches settled down after a year or so and I didn’t give them any more thought, though I went on to be a “headachy” adult.
After I developed M.E. in my twenties headaches and head pain in general were a daily occurrence, to the point where I was living on paracetomol. I didn’t have my first migraine, though, until I was in my early thirties. Mine started with Classic migraines, which involved auras. This is fairly rare and only about 15% of sufferers have Classic migraines exclusively. For me, the first sign I was getting a migraine was a dot of coloured light in my vision. This grew to a small wavy line, usually in my peripheral vision, and eventually turned into a jagged multi-coloured light show a bit like looking through a Kaleidoscope. My vision was often obliterated, and I always felt really spaced out and woozy, which meant I had to lie down. I didn’t have any head pain with the Classic migraines though or any nausea. The aura could last anywhere from 15 to 90 minutes, but the spacey feelings often lasted 48 hours after the event. I didn’t take anything for these migraines, and often found if I ate some carbs (usually toast) at the first sign of an attack I could lesson the duration.
My thirties were a dreadful time, with an ever present dull, achy, throbbing headache and about 2 Classic migraines each week. I was allergic to all the drugs used for migraine, like tryptans, and eventually became allergic to paracetomol and other painkillers. I remember crying like a baby when I had anaphylaxis to paracetomol and wondering what on earth I was going to do for pain relief. But actually, it turned out to be a blessing in disguise. After stopping all drugs due to my reactions my headaches improved by about 80%, although it did take about 6 months. Again, with the benefit of hindsight I realise I was having headaches to the headache medication which is actually more common than people realise.
After stopping the drugs, and by my early 40s, I hardly ever had a headache, and the Classic migraines were down to about 3 a month. Which would have been fabulous news had the Common migraines not begun. I stopped having migraine with aura, and started instead with the more commonly known migraine symptoms: prickling skin down the side of my face, intense pain over one eye (sometimes turning the eye blood shot), painful stuffed up sinuses, and pain over one side of my head which felt like a rat was eating my skull from the inside. Some of my Common migraines have been so painful I’ve literally curled up in a ball and prayed to die. The migraines can last anywhere from 24 to 72 hours and at times I literally haven’t been able to move my head for the absolutely horrendous pain.
About 3 years ago the nausea began. Until then I hadn’t really had nausea with my migraines, but now I feel sick to my stomach and literally can’t eat a thing. I have actually vomited, although this is thankfully rare.
Along with the nausea came a switch in sides and intensity to the pain. Before this my pain was always right-sided, but this has now changed and I also have left-side only pain, or all-over head pain, both of which is excruciating and I know if I get a left-side only migraine it’s going to be a 3 day job. I also still feel spaced out, often dizzy, extremely tired and can be very dyslexic for some days following an attack.
On top of the Classic and Common migraines I’ve also had Menstrual migraines for the last decade. June was the first month in 10 years I didn’t have a period-induced migraine, though I’ve made up for it this month by having one which has lasted 3 days. I also tend to have a migraine around day 17 of my cycle for some reason I can’t quite work out. I don’t know whether the menopause is going to help the situation, or make it ten times worse due to falling hormone levels.
It isn’t all doom and gloom though. This year has been the best for 2 decades in terms of headaches and migraine frequency. I hardly ever get a headache, and my migraines are down to about 2 a month. In fact in June I went 6 entire weeks migraine-free – the longest period in 20 years 🙂 I’m not sure if this is down to my low histamine diet, or the peri-menopause and a change in hormones. Whatever, I’m just grateful!
Coping with the pain of migraine when you’re almost totally drug allergic is hell…….really, there’s no other way to describe it. All I can do is wear a cool gel strip on my forehead, put either an ice pack or hot water bottle on my head, wear a hot neck wrap to help the muscular tension and wear acu-pressure bands on my wrists for the sickness. I’ve got to be honest – none of it helps much. Sometimes when the pain is on the right-side of my head I can still function and watch a bit of tv, but when the pain is left-sided or all-over I just have to lie in bed until it passes. I’ve just spent 3 days in bed with period pain, backache and a nausea-generating migraine, which started on the right-side of my head but switched on day two to the left-side – it’s been really boring as reading, watching tv or being on the computer just made the situation 10 times worse. And then suddenly at 4pm this afternoon the pain just………..disappeared (though I still feel sick as hell)!
I was going to go into other types of head pain in this post, but it’s gotten too long already so I’ll save that topic for another day.
My Mum gets Classic migraines with aura and mild headache, but thankfully not Common migraines with the severe head pain or nausea I experience. I also have a cousin with an extreme and rare migraine disorder called chronic hemiplegic migraine, so migraines obviously run in our family. I have a pet theory that mast cell disorders run in our family too, but can’t get any of the affected family members interested enough to find out which is frustrating. My biggest hope is that as I age the migraines will lesson, especially as they are currently mainly connected to my menstrual cycle. Time will tell!