My chronic migraine story

Posted in Personal Perspective on 15th Feb 2019

Author: Elaine Bell
Provenance and peer review: Invited and internally reviewed.
Published online: 15/2/19


My migraines started when I was about 10 years old and it was at least 20 years before I was diagnosed with Chronic Migraine. Whilst I was diagnosed by my GP as suffering from migraine, the words Chronic Migraine were never mentioned although I had frequent visits to my GP looking for relief. It was only after doing my own research that I raised the possibility of Chronic Migraine with my GP and prophylactic treatment was prescribed.

I tried a number of prophylactic medications including Propranolol, Amitriptyline, Pizotifen, and Topiramate to name a few. I was unable to tolerate some of the side-effects associated with some of these medications. Brain-fog, no energy and feeling tired were not conducive to maintaining full-time employment. I was unable to concentrate and my memory recall seemed to be impaired much of the time. Pizotifen caused rapid weight gain which was not acceptable to me. I have always been an active individual enjoying sport, and until that point my weight had never been an issue. l tolerated Propranalol reasonably well and it seemed to help for a while, but after taking it for a couple of years I felt its effectiveness began to decline.

I recently turned 50 and all my life I have been advised by GPs that as I got older my migraines should decrease in severity and frequency. Unfortunately, this never happened. I probably have a genetic predisposition as my mother, grandmother and great grandmother all suffered. As a young child at school the only medication available to me was paracetamol, which I used to swallow by the bucket load, but it had no effect on my migraine at all. I can recall my grandfather when I was very young applying cold compresses to my head and using his hands to tightly hold my head in order to give me some relief.

My migraines are complex. Even after all these years as a Chronic Migraine patient, I am no further forward in identifying the main causes. I have learned through trial and error what to avoid; intense exercise, stressful situations, wine, citrus fruit and bright flashing lights to name a few. Even when I manage to avoid these triggers along comes an attack, apparently from nowhere, that will floor me for four or five days and I have no idea what has caused it.

Over the years I have become adept at masking my chronic pain from others, including my employer and those closest to mefor fear of sounding like I am constantly complaining. To put this into context, I would suffer from this debilitating chronic migraine pain for more than half of any given month – the constant pulsating, throbbing pain in my temple and neck makes me feel nauseous; I find noise & light difficult to bear. I can’t concentrate and sometimes find it difficult to form words. My bed, a dark room, an ice pack and a hot water bottle are all essentials.

Even though I realised that I was stuck cycling medications that didn’t work I still lived in fear of running out of them.  I used to feel guilty about requesting repeat prescriptions, as a GP once reminded me how much I was costing the NHS or on another couple of occasions, I was identified as one of the top users in the Practice when they were reviewing their prescribing patterns!

My relationship with the medical profession for decades until very recently has been a cycle of repeat prescription requests and very little by way of other possible alternative interventions.  Occasionally, I would find I was in so much pain that I would end up in our local Out of Hours Service desperate for relief having had days of pain with nothing helping. At these times, I visited my GP to ask for a change in medication. This was always met with resistance and I would be sent off with another prescription and the cycle continued until the next time.

Fortunately, my attitude and experiences started to change with the advent of the internet and thereafter social media. This for me opened up a new world of other sufferers who had similar experiences.  With interest I read Blogs, Twitter, Facebook, numerous helpful websites e.g. The Migraine Trust, Migraine Research Foundation, and The National Migraine Centre.  I began to educate myself and then, several years ago, I attended a conference in Glasgow which had been advertised on the Migraine Trust’s website.

Attending this conference was a catalyst for me; it changed my approach to my migraines and the support I received. I decided that day to take control and break the cycle of repeat prescriptions which had me living my life in almost constant pain. A Neurologist with an interest in headache at Southern General Hospital in Glasgow was the key note speaker at the conference. With my GP’s support, and through my husband’s private healthcare programme, we arranged a referral to see him and with his help, I tried different treatment options. I was prescribed Topiramate as I hadn’t tried it, but couldn’t tolerate it at all. I also tried acupuncture which I understand helps some, but it didn’t seem to work for me.

The only other thing that I try to do is to make a concerted effort to keep my sugar intake to as low a level as possible. I have no scientific reason for doing this, only an instinctive feel that it seems to help. I notice that when I indulge in eating high sugar foods my migraines can be triggered, but again that isn’t 100% guaranteed.

My most recent treatment intervention, BOTOX (botulinum toxin type A), has been effective and my migraines have reduced significantly both in severity and frequency.After decades of missed family events, opportunities, work, education and social functions I am finally experiencing an overall improvement in the quality of my life and that of my family. I worry less about pending significant work or family events. I used to get very anxious about letting family, friends and work colleagues down. When my Chronic Migraine was at its worst, I had no control over my day to day living. Now I can plan, commit and enjoy for truly the first time without the worry of letting those close to me down.

What have I learned? 

Like many patients, I always accepted my GP’s advice in the early years of suffering from migraine. The advice was limited to “Your migraines will probably decrease as you get older and likely disappear after menopause”. At that time, I was hugely naive about migraine, its symptoms and treatments. It was only when I started to educate myself by reading articles and attending events organised by the Migraine Trust that I began to understand my condition more. I requested that my GP refer me to a headache clinic. I asked to try specific treatments, took part in some trials. It was all trial and error. If I were to rewind the clock, I would not have sat back for so long and accepted repeat prescription after repeat prescription for so many years.

Only after 35 years of suffering mainly in silence have I now opened up more to my employer, friends and family about how frequently I suffer. This in itself has been therapeutic.

If I were to pass on my learning to anyone who has just been diagnosed, it would be to firstly educate yourself and those close to you. Be curious about your condition – there are lots of treatments options available, it’s not a one-size-fits-all-condition. Seek support from specialist clinicians. Change GP if you feel you are not getting appropriately supported, be kind to yourself and finally, don’t give up – there is help available.

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