My Migraine Journey – Fiona
My worst non-pain symptom is being excluded from family time, locked in my room, distantly hearing my kids in my home, and being excluded from them.
I have been getting relief since I changed to Topomax, thank God, and it turned out that I was also anaemic and got vitamin B12 shots for 14 days, and am on vitamin D and folic acid prescription supplements. After about 2 months they made a huge impact on mood and energy levels, which in turn made a huge impact on getting out for walks and fresh air, which of course had a knock-on positive impact on my migraines.
I can now also tell the difference between period-related migraines and "normal" migraines! For all of that though, I am much better off than I was this time last year migraine wise.
To start on Topomax, I had to come off the final 100mg twice a day of lyrica that I was on - I'd been on it for the last 9 years for nerve damage following a car crash 15 years ago. I'd come down from the max the pain management clinic in Tallaght hospital, Dublin, Ireland would prescribe - 300mg twice daily over the last 4 years. Over 4 months during lockdown, I came down off the final 100mg, and once I was down to, I think it was 25mg, I was able to start 25mg of Topomax, before I then went up to 50mg after a month. Those 4 months detoxing off lyrica were hell. But I'm so glad I'm off that poison, and I'll never touch it again as long as I live.
Mindfulness has been the most amazing tool in my arsenal, and as soon as a friend sent me an article about 2 years ago about the damage it was having on neuroplasticity and the long-term impacts such as suspected early dementia, etc. that just heightened my need to come off lyrica. However, the impact of coming off it led me to return to antidepressants, and the physical impact of reducing was massive - only about 5 years ago my own mother was given lyrica by her GP for shingles for a month, with no explanation that she needed to ween onto it and off it, and was so nauseated, dizzy, shaky, etc for 4 days coming off a very low dose.
The medications we use are strong, they have to be able to work on a neurological level. I had been seen in an offshoot of the A&E. After 3 appointments over about 13 months, I was left on 50mg nightly of amytriptaline and max 2 daily of 100mg sumatriptan. And off you go Fiona. Try to manage your stress better. That was about 4 years ago.
I am finally under the care of the Headache Clinic in Tallaght hospital. Set up specifically for people like me - who were sent in via the A&E about 3 years ago as the neurology dept had a 46-month waiting list. The Headache clinic was set up 2 years ago. Finally, I am under the care of someone who knows what they're about, and sees their main job as educating their patients and other doctors - and along with confirming my migraine diagnosis, she also diagnosed Medication Overuse Headaches. Makes so much sense now, but it's amazing to have had actual headache-free days. I haven't had that in years - actual years! So I have light at the end of the tunnel.
I still get migraines. The intensity and length of them, in general, haven't been what they were in the past, with the exception of one. But I've had a better quality of life than I've had in some time, and I have hope back. That's been the biggest plus for me.
I love that Migraine Buddy helped me identify prodrome things - I didn’t even realise I had visual auras and I can use that information, especially since I’m working from home, and my children are older at 11 and 16, to take a break, lie down with the curtains closed and the windows wide open beyond them, to try to nip it in the bud before it takes hd. Or another time, if I'm up for it, go for a walk in the beautiful woods in the Dublin mountains.
Using Migraine Buddy to help identify what alleviates symptoms, when fresh air can help or when it’s a dark room I need - I told the doctor in the headache clinic about it, I tell them in the chemist and I tell anyone who has headaches about it. Migraine Buddy has been the single best tool in fighting my migraines. Hands down. You can quote me on that!
- Fiona Nagle in Dublin x
Thank you, Fiona, for stepping forward to share your migraine journey with the community.
When you share your stories, it not only helps others but you heal in the process too. If you would like to share your story and let your voice be heard like Angela, you may do so here:
With love, Jenny and the Migraine Buddy Team