Six years ago, I moved city and changed GP. It was about three years ago that I had mentioned that I was sick of taking strong pain medication for migraines and my GP mentioned there were preventative medications for migraine. News to me, great, sign me up!
I started taking Propranolol, a beta blocker, and it seemed to flatten out the number of bad pain days and the length of what I called a migraine. I still had most days with ‘just a headache’ but that was an improvement so I allowed myself the side effects of general tiredness, and night hallucinations and screaming. That potentially was a worse side effect for my husband and daughter to be fair.
Eventually, early this year I decided Propranolol was working less on the migraines, and the side effects on my sleep were increasing. My husband could well be punched in the night if I turned the wrong way to fend off the bodyless heads that kept appearing before me.
I started to look into what medications were out there for migraine, and that necessitated learning about migraines. I didn’t know what I didn’t know about migraine! I started listening to the UK National Migraine Centre podcast called Heads Up.
I quickly realised that I had chronic migraines, and I had been approaching them completely wrong. I also heard the term ‘clear head day’ and started to ask around if that was a normal state of being. Once I heard that is the case, I wanted one!
The next anti-migraine medication I tried was Nortriptyline, often given for improving mood. I did find I had an improved mood – definitely less tiredness than after Propranolol, but not much change in migraines, and terrible dryness. I could barely talk my mouth was so dry! My entire body dried up and there were added side effects there that needed different medical management. I didn’t want to keep taking a medication that I needed other medications to combat so on to the next anti-migraine medication.
The third anti-migraine medication I tried was Topiramate, an anti-epileptic drug. So far, the worst as I was dizzy, nauseous and an insomniac on this, and I lost a few kgs in just the first week… and still having migraine too. I really tried to get used to it but five weeks in nothing was improving so I came off that for a break and to better observe whether there was a pattern to my migraines.
Finally, I saw a neurologist in November and there were another four funded medications suggested for me to try, or an unfunded medication for migraine called Emgality (there were others but Emgality was ‘the cheapest’). I was not at all keen on the $325 per monthly injection price tag of Emgality so decided to try another anti-epileptic medication called Verapamil. It looked like it might have less side effects than the other three medications listed. Alas, it affected my sleep and gut health immediately. I would have been willing to stick with it for a bit longer had it not been for the sudden and intense drop in mood to the point of depression. That is not me at all, so definitely not a medication that I would want to continue and have to increase to have any chance of a positive effect on migraines.
Rather than try another medication that might work for migraines, but likely have horrid side effects, I decided that the price tag of Emgality may not be so bad if it actually worked. I definitely liked the sound of something created specifically for migraine prevention so asked my GP to prescribe Emgality. Emgality belongs to a group of preventive medicines that stop the activity of a naturally occurring substance in the body called calcitonin-gene-related peptide (CGRP). Increased levels of CGRP have been associated with migraine. I don’t understand the science of it so much but am happy to report for me, no side effects whatsoever. I have had a record number of days without painkillers or triptans already. On day 6 and day 7, I had a feeling of pressure around my head from the hot humidity and thought a migraine might come on, but getting in to a cool environment and using the Mynd device put paid to that. Amazing! I’ve never gone that long without painkillers.