Learning to live with migraine

By: Cheryl Illingworth, who lives with migraine

21st July 2022

Getting a diagnosis

Really? Is that usual to start having migraine attacks in your 40s?

I was rather sceptical following my initial appointment at the GP. I had been having various symptoms such as pains in my stomach and lower back, sickness, constant difficulties with poor bowel movements, plus these progressively worsening headaches. I had also been telling the many GPs I had that I had been through the menopause years ago, but as my hormone levels were within the usual range, they kept saying it wasn’t the cause. They then identified I had an underactive thyroid, so everything was associated with that…

However, having said all the above, once a new GP diagnosed me with migraine, the GPs and NHS have been really helpful over the years. Unfortunately, the migraine attacks, which I thought were not even that bad at the start, really did take hold and over the last 14 years they have made things very challenging.

When I look back to being a child, I always had issues with headaches and at one point they wondered if it was epilepsy, but the tests proved negative.

The impact of migraine on my life

I have had some dark times over the past 10+ years in particular, and the migraine attacks certainly made me much lower in my mood. When I did not have a migraine attack, things didn’t seem too bad (even though objectively, I know my health was still deteriorating).

The impact on my husband has been very significant. I used to be a very outgoing person, always wanting to go out and do different things, but over the years I became a shell of my former self and the migraine attacks certainly contributed to this, among other issues I was facing.

It affected my ability to plan, as so often I had to let people down. I actively tried to avoid doing a lot of things and friends drifted away, leaving me more isolated. My work dominated my life, as this was the thing I could control and things got very tough at home.

Triggers and treatments

Have you tried to identify the triggers..? Of course I have, just like everyone else. But was it successful? Not really, except I used to drink red wine and now I cannot. Sometimes I think it might be one food or another, sometimes different drinks, or certain situations etc.

And what treatments have I tried? I think the question should maybe be, what have I not tried? Obviously, I have the usual over the counter and prescription medication, but only sumatriptan and the anti-sickness tablets are effective now. I have also tried many alternatives, including acupuncture, cranial sacral, a chiropractor, hypnosis, different stress relief methods such as mindfulness, and now I am attending the Norfolk and Norwich University Hospital for a course of Botox. Apparently, the type of migraine I have is not the main one that Botox benefits, but I keep hope.

I am also hoping that if this is not successful, I may be considered for calcitonin gene-related peptide (CGRP) antibody drugs, but as all who experience migraine attacks will know, it is not easy to get this prescribed.

Learning to manage my migraine

After years of what felt like a long journey, my relative utopia moment came when I listened to one of the many excellent webinars by The Migraine Trust. The simple message was that you are in control of the migraine and your reaction to it and do not let migraine dictate what you do. So instead of not going to anything or seeing people, I am at least planning these things and if I am not well enough, most people are accommodating. It also means that rather than dreading migraine attacks, I now simply try and deal with them once they arrive. Unfortunately, they always do and I get a cluster of them often over a one week period followed – hopefully – by a week off. I also always have the persistent headache etc., but just use this as my baseline and try and live life as best I can. The approach has really helped me and also my husband and our relationship. This later benefit is the BEST outcome for me!

So keep hope, take control and live your life!