They said Chronic Migraine is not a long term illness – Patient Story

By 8 July 2021October 12th, 2022MAI News, Patient Stories, Support

My migraine started in 2016. At the time I had been moved to a new section in my job. I was moved into a payroll position which I had no training or qualification, so it was extremely stressful. This is when the migraine started. I had to ring in sick now and again at the start but more often as time went on as my condition got worse. The guilt associated with having to call in sick was awful and exacerbated the stress of the migraine and the stress of my life in general. I felt like I was letting my team down too as it was very busy at that time. Employees were waiting for their salaries to be paid. And it was my job to get those payments out. Most days I was struggling in work as I was in agony, but I tried my best to make it through the day. My general manager was very sympathetic because his mother suffered from migraine, but most of my colleagues thought I just had headaches like everyone else, as is the opinion of so many people who have not experienced migraine and are not aware of how debilitating it really is.

Two years ago, my migraines got significantly worse. I was suffering with migraine for up to 20 days per month and could no longer work so my doctor signed me off work. I worked in a government job where I got three months’ pay initially and after that I was placed on an illness benefit of €203 per week which I have been on ever since. I have applied for invalidity pension, but I was refused this as they said that my condition is not long-term. My migraines have been happening since June 2016 and have been getting progressively worse. But still, it is not seen as a long-term illness. I was offered just €30 per week on disability! At present, I am on €203 illness benefit per week, but this is due to stop at the end of June 2021 and then I will only receive €30 per week which I cannot afford to live on as I have a mortgage, bills and two young children.

I feel I have exhausted all possibilities. I have been on Ajovy for a year and half. It helped at first for a few months but now seems to have stopped working. I am also getting Botox, but it is not helping. I am on Diamox for dizziness and nausea. I am currently doing acupuncture. I have tried Sound Therapy, Reflexology, went to a Nutritionist, Chiropractor, Physical Therapist, Physiotherapist, changed my diet, got D A I T H pierced, Aculief, got some of my teeth filed down and use amber beads. Previously, I have tried Amitriptyline and Topamax also. I have tried most of the Acute medicine. I have tried everything I can think of or have been advised to try.

Unfortunately, the medical industry seems to treat migraine as not being as serious neurological disability compared to other neurological diseases. It is impossible to work through a bad migraine with the pain, nausea, and dizziness. So, to advise someone to just carry on and manage this condition is not always possible. Every day is a day of dizziness nausea pre-drome and migraine post-drome.

I would love to go back to work as I really miss it, but I cannot work unfortunately. It took a great deal of effort and time to write this story on my migraines and work-related experience while trying to push through brain fog, dizziness, exhaustion, and excruciating head pain but I needed to share my story to raise awareness on the serious of migraine as a condition and the stigma surrounding it. Hundreds of thousands of people in Ireland alone suffering with migraine which affects their work life as well as their personal life. My hope for spreading migraine in the workplace awareness would be that it will be considered a disability in Ireland and that workplaces will be educated to show compassion and understanding like my own manager did.”

Patient prefers to remain anonymous

*Please note, this story is for educational purposes only. It cannot be reused without permissions from The Migraine Association of Ireland to protect each patient’s GDPR rights. If you would like to use this story, please contact us first to request permission. Thank you.*