The impact on all aspects of my life was tremendous
I am writing this in the hope that other people with migraine will find it of some help and those that do not suffer with migraine will find some of the information helpful especially in understanding and helping people with migraine – and perhaps some GPs too.
I started getting migraine when I was about four years old. Migraine without aura but just excruciating pain. For a couple of years sleep and a painkiller helped but as the years went by I had to use more painkillers and then different ones as some might work for some time but then did not.
At school there was no understanding of migraines at all. At primary and secondary school a painkiller or two might ease the excruciating pain and at times being able to lie down in the Sick Room or certainly as soon as I got home. And then hopefully some sleep there…..I would just let myself in and go quietly to bed.
Lack of understanding
No GP that I had for nearly 30 years knew or understood migraines and how to treat them effectively / properly but would just refer to their Monthly Index of Medical Specialities (MIMS) handbook and pick yet another preventive or medication for the pain from ‘ the list ‘ to be worked through.
Each time a GP would tend to say that I needed to give each tablet several weeks to see if they helped. But none were willing or wanting to refer me to a neurologist. By the time that I was teaching infants in a variety of schools with the added stress of no permanent job, no permanent home for some years plus other issues, no adequate help for my migraines which were once, twice or more per week I had been on a great variety of medications for a variety of other ailments eg epilepsy, anti – depressants, sleeping tablets etc.
I also, in desperation, especially as my teaching job became more demanding and aspects of my life were so badly affected by chronic migraine, I paid privately for a variety of treatments including colour tinted glasses, acupuncture, a couple of private neurologists and scans etc but much of this was not a great help.
I have never minded hearing of what might help migraine and know that we are not all the same but many suggestions including certain foods and drinks do not help me.
I was finally put onto Zolmitriptan / Zomig by a private neurologist and found that this really helped. However I was not told about ‘overuse’ of Zolmitriptan.
In order to keep my teaching job and to keep going for a couple of years I took more of these than recommended as I did not know. My GP at that time asked me to go and see him and said as soon as I got in the door “Do you know that you are costing the surgery over £1,000 per year in your migraine tablets alone? But we do not want to lose you” !!!!
I said that I did not think the amount of tablets I had to take were doing me much good but I was trying to keep my job.
He said that therefore he would refer me to Professor Goadsby who was at the National Hospital for Neurology and Neurosurgery.
I actually started to see various doctors at the National Hospital after going in for nearly a week for treatment . Unfortunately in a ward not ‘set up’ for migraine sufferers as the lights and sounds and fish tank were not good news.
I then, over some years, was put on the increasing list for preventives and painkillers – some with some bad side effects.
Having had to give up teaching by this time and take very early retirement I had days and days where I had to stay in bed.
For me my migraines were most definitely mostly stress and tiredness related especially any stress and extra stress.
In 2007, I paid to see Professor Goadsby privately as I found the excruciating pain so much of the time unbearable. I had seen a colleague of his but not him. So I then saw him. A great neurologist and lovely man with a very full understanding of migraine.
He suggested the trial for a migraine stimulator implant. So in August 2007 I had the migraine implant. And all the kit and kaboodle.
Unfortunately an internal wire caused damage so I could barely use my left arm for months without excruciating pain there too.
Despite changing all of the parameters every few months for me the implant did not help but at times aggravated my migraine.
Therefore to try and do any work and activities much of the time was impossible.
Impact on life
The impact on all aspects of my life was tremendous and one of the hardest things was the lack of understanding and help of many people as it is an invisible ‘ affliction’, and like some other conditions some people only see the ‘ mask’ one wears.
After a few years I had the implant removed and since then have continued to use eletriptan tablets and also tried two lots of Botox injections.
For those who suffer from migraine, personally I would suggest getting a referral to a neurologist / migraine specialist and migraine unit / migraine hospital department. GPs can be good / very good but are not and cannot be expected to be expert in all ailments.
It helps to have family and friends who have an understanding of how your migraine affect you and your whole self and your whole life. It is so often frustrating, excruciating…..and affects one’s life in all ways so enormously much of the time.
For me it has been a very long, weary journey of excruciating pain at times and a desperate search for relief from the pain and a specialist and some others, if even just a few who understand what migraines can be like and how to help/support.
The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.