Some people chase storms, some rainbows, hopes and dreams, but anyone with a condition chases explanations, relief and cures.
Presenting as a possible migraine sufferer means a serious symptom exam. Not every headache is a migraine. My London doctor was thorough, as indeed all doctors have been. The first question: is your pain on one side? Mine is, but I know people for whom this is not true. After I described the initial feeling of strangeness, a taste of metal, oversensitivity to everything, plus visual disturbances, she decided I had severe and frequent classical migraines, or migraines with aura.
Apart from the visual fireworks, this is a specious distinction which makes no difference to the treatment, so lie a bit if you crave condition status. I say this because I have had migraines without an aura and auras with no migraine. After the diagnosis you may be advised to keep a migraine diary to see if you can spot the triggers; in the meantime you are advised to avoid cheese, chocolate, oranges, wine and coffee, but drink loads of water. Triggers are hard to pin down. You may be lucky, you might not. You may react to some foods or circumstances sometimes. It can depend on so many variables. Finally you will be prescribed whatever the current thing is.
Although your brain is very affected, you will probably not be offered a neurology appointment. I never have been. But, be assured, migraines are not brain tumours. You may be offered a visit to a specialist migraine clinic. They did not exist in Scotland until sometime in the 1990s, and then they were usually run by doctors who were taking an interest in migraine and getting good at it as they saw so many of us. And we are their teachers.
About medication. When you have a condition, you are a shareholder in the drug companies without a bonus or dividend, and you will be experimented on or, as they put it, ‘I suggest we try this’. Medication is mostly a blunt instrument. It’s not person specific and comes with many effects other than the desired one. Unfortunately it is initially tested on animals, a legal requirement in the United Kingdom, while the FDA (The Food and Drug Administration) in the USA have abandoned this on the basis that there are better ways of testing. Human clinical trials follow. So for me a bad conscience goes with the condition. I know every time I swallow a possible remedy I am or was torturing animals. The fact that I am not personally doing it is worse, if anything. Fortunately, days of intense pain make it possible for me to torture anything and anyone. Sorry.
Migraine medication comes as either acute treatments or prophylactics, the latter taken daily and the former at the time of the attack. As my attacks got more frequent they became less interested in being medicated. But initially a souped-up paracetamol (with codeine and an anti-sickness drug) marketed as Migraleve, kept me in the game—the earning-a-living game. Being able to buy this over the counter (OTC) was a bonus. The use of part of the word migraine and relieve in the name is clever (if obvious) and common to most medication, and probably affected my initial belief it would work.
When all OTC medication failed me in the early 1990s, a doctor in New Zealand said the word suppository. I was temporarily living in Auckland, helping to care for my mother and struggling to stay well. I had never heard of ergotamine suppositories then but, to my amazement, they mostly worked. Possibly they will prove to have robbed me of my life and/or brain in the end but, in the short term, if your stomach is in stasis, and you are about to start vomiting and you need to be somewhere, suppositories are the only thing you won’t throw up.
Ergotamine arrived on the medical scene during the Middle Ages after a mass poisoning throughout Europe. People were eating bread contaminated with ergot, a parasite, on cultivated grains. This caused the disease St Anthony’s Fire, also known as ergotism. As a drug, ergotamine was first used to precipitate childbirth and to control post-partum haemorrhaging. Because it acts on blood vessels (it’s a vasoconstrictor), it has been used in the acute treatment of migraine since 1926 and there was no alternative acute anti-migraine treatment for decades.
Many doctors agree that ergotamine still has some place in treating migraine. By the time I met it my attacks were severe and frequent, so I agree. Toxicity was the least of my worries; when I was very sick I never cared. In that state dying was always an attractive option. It was ergotamine or a gun, not available on prescription to this day. However, although they stopped the hammering head, they also made me feel vile for a day or two, but that period, known as the postdrome, is usually awful anyway.
A male doctor once told me to my insouciant face that women didn’t get the pain as badly as men. ‘Can they hear themselves?’ I wondered then, and wonder still. (They can’t.) It never occurs to them that my rogue brain might lay into them. I’m invisible to such men anyway. Just another woman with a headache.
The suppositories are marketed as Cafergot, as they also contain caffeine, and whatever medication I took, it seemed I needed an unhealthy dose of caffeine. I tried various other ergotamine products, including a nasal spray made from a semi-synthetic form of ergotamine, in use since the mid-1990s, and a tablet marketed as Migral, but neither worked for me.
Ergotamine is rarely given these days. This is because, in the early 1990s, Glaxo Wellcome (as it was then) put the first triptan, sumatriptan marketed as Imigran, on the market. They had been researching it since the 1970s. It was a drug for acute attacks. I was offered it in 1993 by my Lismore GP who was always willing to prescribe anything he thought might help, and for this I was, and am still, grateful. He had seen me at my worst.
A few times, after days of unbearable pain, he came to the island to give me an intramuscular injection of pethidine and largactil, pethidine being the first synthetic opioid, and largactil an anti-psychotic for the vomiting. I liked this a lot. It sent me into a dreamless sleep and I knew once it was in me my pain would end. However, one time it gave me terrifying hallucinations with no sleep and no relief. My brain goes rogue easily. I never had it after that. And about the same time, it disappeared from the approved list.
Glaxo Wellcome spent a lot of money making sure that sumatriptan became the only medication for acute migraines, while also admitting they really didn’t know exactly how it worked. They said it targeted just the blood vessels in the head, unlike ergotamine, which was indiscriminate. That was a bold claim. They also said it was designed to stimulate serotonin, a neurotransmitter found in the brain, and to reduce inflammation and constrict blood vessels. Serotonin was much talked about at the time. However, they spent until ergotamine became a dirty word, and I always had to insist I needed it, feeling as though I was asking for a hand grenade to lob indiscriminately. The fact was that when sumatriptan failed, which it often did, I could wait four hours and ergotamine would work. I certainly did need it.
Another male doctor told me that if sumatriptan didn’t work I didn’t have migraine. Yep. True. Were Glaxo Wellcome paying for his skiing holidays, I wondered. He insisted, aggressively, that I just didn’t know how to use it. Did I not know I must take it at the first sign, he stressed. Yes, I did.
This ‘at the first sign’ instruction was meaningless in my case. Had I ever done that I would have been eating them daily, at which point I would have been told I was giving myself rebound headaches; these have become the stick with which acute cases are beaten. Blaming the patient.
I do not dispute the rebound effect; in fact I sometimes think that had I never treated a migraine or headache they may have slowly died of starvation. But that didn’t occur to me, as I had never managed to sit them out. And it was too late by then; I was disabled.
Since the triptans appeared there have been about seven me-toos. Sumatriptan was the original, which came first as a tablet and soon after as an injection straight into the thigh, through your clothes as you went about your life! Or so said the rep selling it. There was no need for migraine to stop you in your tracks, except briefly as you administered it in the middle of Oban with the traffic moving around you! But it took a while to work and gave me heart fluttering, just one contraindication. Even today I never take a triptan unless I can lie down and rest.
And besides, those heart flutterings are alarming, particularly as medical journalists regularly raise the link between migraines and strokes, or migraines and dementia. Thanks. I have unsuccessfully but stalwartly tried to ignore this. What can I do about it anyway?
I also could not be unaware, back in the 1990s, how extremely expensive these injections were; they came packaged like a high-end cosmetic. Before I spent thousands of pounds of the practice budget, I reacted at the injection site, developing what Glaxo Wellcome called ‘site hives’.
So for many years my acute treatment was paracetamol, just in case it was a normal headache, then Imigran; and if that failed, four hours later, Cafergot. I knew that Imigran and Cafergot were fatal taken together, or rather I knew of one woman in Germany who had died this way. No matter how ill I was, I always obeyed the time rules.
I have also tried all the me-toos with the same patchy degree of success. Zomig appeared and then rizatriptan in tablet form and as Maxalt, the version that melts on the tongue. Alas, these melts came in masses of hard plastic packaging which, as they accumulated, led to far too many thoughts about my personal contribution to landfill, while alternately pondering how I could possibly recycle them as Christmas presents. A problem I failed to solve, as my skills do not lie in crafts, and migraine leaves no time for such extras.
Finally I was prescribed Clotam (tolfenamic acid), a non-steroidal anti-inflammatory (NSAID). It was said to relieve pain by blocking chemical messengers in the brain that tell us we have pain. They certainly needed telling. However, one side effect was headache, which detracted from its appeal. However, as a first line of defence they were said in trials to be better than paracetamol. I tolerated them—no spasms, tics or heart fluttering—and they sometimes worked.
In September 2023 Pfizer produced the first new migraine medication since the 1990s: Rimegepant marketed as Vydura. It’s for either acute or prophylactic use. It dissolves in the mouth and can be taken once in 24 hours. I use it as an acute treatment i.e. when I have an attack. The first time I took it, it dealt with the head pain but did not restore my energy and I was out of action for a day and a night. On subsequent occasions it has worked leaving me hung over but functional.