My migraine journey
By: Megan Daniels, who lives with chronic migraine and vestibular migraine
My first migraine hit me like a ton of bricks. Although, it was a ‘typical’ migraine – what many people think it is. I was in bed for a weekend in a dark room, sensitive to any light or sound. It was treatable with over the counter medications and that was it.
After that, each migraine just got progressively worse in intensity and duration, with new strange and debilitating symptoms, in addition to the excruciating head pain. For example, my second was a few months later and lasted for around one whole week. The pain was so intense and kept worsening, it felt like someone was banging a hammer into my skull. I contacted the GP in desperation maybe around 20-30 times that week, but only one doctor showed any concern, others just told me it would pass, or to take a paracetamol, they didn’t seem to understand what a migraine was and I felt do dismissed. The one doctor who was concerned by my symptoms, told me to go to A&E. I literally couldn’t stand up with the level of pain, and I was not taken seriously in hospital at all. I wasn’t triaged properly – I was sent to the GP team in the hospital and sent away with a triptan and propranolol and was told it would settle – if it didn’t, see my GP. I was not well enough to be advocating for myself at this point and I did not know enough about migraine – to my own detriment.
After such a scary migraine attack, I wanted to be referred to a neurologist. I visited my GP and they advised that they were unable to refer me before I trialled a long list of medications. I tried propranolol and amitriptyline – I had severe side effects from both.
The next one, a few months after, was an intractable migraine attack for 3 weeks. It was horrendous. It went on far longer than I had it could even go on for and, naturally, my mind started thinking there was something worse going on. I had tingling, floaters, vision problems, cognitive problems, sickness and nausea, even my eyelids were swollen. I was totally debilitated.
At this stage, I knew I had to see a neurologist and my employer at the time offered private healthcare. My neurologist was the first person to actually diagnose migraine and talked me through the different forms of migraine, and how the previous migraine was stuck in an intractable state. We talked through lifestyle changes, supplements, different medications available and how to use them (for example, taking a triptan at the first opportunity of an attack coming – not being taken when an attack was in its full stages, as it is useless then). He was amazing and it made me feel understood for the first time in a year. For a good 18 months, I was able to manage by taking a triptan when I felt symptoms coming on and I started taking supplements.
When it got a lot worse
However, last year I woke up in the middle of the night with an overwhelming feeling of nausea and sickness. The pain in my head was excruciating, like someone stabbing me in the head and I couldn’t stand, everything was violently spinning and rocking. I was bedridden and debilitated – it was terrifying and hands down the worst time of my life – I was so fearful it would never end. This went on for around 4 months. I was stuck in a state of intractable migraine for around 6 weeks and had a strong disequilibrium feeling (as if I was walking or moving on a boat in turbulent waters) for the whole time. I couldn’t even have a bath, as the slight moving of water was too much for me. I was not offered any immediate relief from the NHS – I am now aware that hospital care or nerve blocks for example, could have helped me.
My neurologist diagnosed chronic migraine and chronic vestibular migraine. I was prescribed some medication for the vestibular symptoms, but nothing worked. My neurologist advised that there is not a great deal of medication which can help with those sort of symptoms – I was so scared. I tried Candersartan as a preventative but, again, I was unable to tolerate this. My neurologist then put me forward for CGRPs (Ajovy) but I had to wait, as I needed 3 months of headache diaries. In the meantime, I looked for alternative therapies that could help me and I tried acupuncture. This was the first thing to provide me with some relief and, things started to improve for me gradually but I was still very debilitated in most areas of my life – such as working, driving, shopping, socialising.
When I finally started on Ajovy, I noticed around a 50% reduction in my head pain and much reduced disequilibrium to begin with. I went back to work later that month and had few months free of symptoms, which was amazing. After so much time of not having any sort of ‘life’, I wanted to quickly regain my life back and I had a back-to-back half year of plans. Ajovy was great as I did not experience any side effects other than some fatigue for a few days after the monthly injection, and it stung a bit when being administered.
I was initially opposed to taking daily medications, as I wanted to feel fully functional and myself all of the time, and when things were episodic, it felt like overkill taking a daily medication. What I did not know, and what should be educated to migraine sufferers early on, is that a preventative medication can calm down the hyper excitable migraine brain and prevent things from worsening and becoming chronic. Chronic migraine is much more difficult to manage and get under control. I wish I would have been offered Ajovy much more early on as a first line treatment, given it is the first drug made solely for migraine.
The setback and how I overcome this
Unfortunately, after a few good months, everything went backwards and got really bad again. Going back to square one, or so it seemed, really impacted on my mental health and, even though I had felt low before, at this point I literally hit rock bottom and thought “this is it”, I couldn’t get out of the dark hole I was in. I tried to join support groups and, all I could see, were people who had been suffering how I was for years on end and I thought my life (as I knew it) was over. I was absent from work for around 8 months and it was a really difficult time.
I knew I needed to focus on my physical and mental health as my priority and, so, I focused on this by; completing a course of CBT therapy, which has provided me with coping mechanisms and helped me say ‘no’ to things and look after myself; starting Vestibular Rehabilitation Therapy; embarking on an elimination diet, focusing on eating only whole foods, with no additives or nasties; incorporating a daily exercise and sleep routine; meditation and self-care.
I have found Vestibular Rehabilitation Therapy to be particularly helpful with the vestibular symptoms and I would now say that I have moved from chronic to episodic with months in between attacks. However, this took one whole year to be referred for this treatment – this is something else I have had to advocate for and, again, I had to pay privately to see an ENT specialist and be referred through his clinic.
GammaCore has also helped me manage the severity of the symptoms and, in my opinion, both together have moved me to a remission of vestibular attacks. I take GammaCore everywhere with me and it really works for me, but it is expensive. Strangely, this is approved for cluster headache on the NHS, but not more migraine – despite it being effective for migraine and approved by the FDA. There are just so many barriers to migraine care and it is not fair. I don’t understand how some people have access to some treatments and others can’t. Then there’s the cost of things like acupuncture, massage therapy, and supplements. Everything is an extra expense, and not everyone can afford it, especially if they are not able to work and do not have family / employer support.
Work and reasonable adjustments
I work as a Solicitor, so this can involve a lot of triggers for migraine – screen time, sitting at a desk for long hours, and it can be inherently stressful working in litigation.
My neurologist, together with occupational health, have put forward reasonable adjustments which will help me at work, and my employer has been great and supported me throughout with reasonable adjustments and a slow phased return to work.
Migraine is heartbreaking for migraine sufferers and affects all areas of life. From always feeling like you’re letting people down, not knowing if a plan or event made will be able to happen (until it happens), thinking about a family, feeling like you are a shadow of your former self, and feeling guilty about missing work – it never goes away. More awareness and understanding of migraine is essential, and so is effective treatment and education.
I do not feel that there is enough awareness of migraine and, in particular, vestibular migraine. Doctors often didn’t know about it, and the medication I’m on, hasn’t been tested on vestibular migraine specifically, so no one really knew how effective it would be for me. I do think it has helped for sure, in addition to all of my other lifestyle changes, but once a vestibular attack has happened – there is no way of knowing how long I will feel disequilibrium for. There is also nothing effective to really take, medication wise, to stop the vestibular symptoms – aside from suppressants, which are not recommended, as the vestibular system is unable to compensate and settle. More medical research is essential.
How I am doing now
I am now pleased to report that I am doing a lot better and I am feeling much more positive. I am so grateful for the good days I have and enjoy every moment symptom free. I do not feel like there are enough positive stories shared about migraine sufferers regaining their life, and this is why I wanted to share my story – to show how I went from 24/7 chronic migraine and vestibular migraine, to living my life again and having many symptom free days.
At the moment, I have sporadic days, or slight periods of head pain, but it feels manageable now, it generally doesn’t stop me in my tracks. I am also celebrating overcoming medication overuse headache, by not taking any painkillers since April this year – this is thanks to my GammaCore device. I have gone around 3 months each time between vestibular attacks too.
One thing my migraine has taught me is that my health is my number one priority. I have made so many lifestyle changes – I prioritise daily movement and I’ve switched from high to low impact exercise and feel amazing for it, I did March for Migraine to raise money for The Migraine Trust this year (which also got me in the habit of walking daily), I chose to embark on an elimination diet but I have overhauled my diet and eat whole yummy healthy foods (and became a great cook in the process). I took care of my mental health, by going to therapy, meditating, and by practicing self care. I have started a blog sharing my journey, lifestyle, tips and recipes and you can follow me @themigrainereset on Instagram. If you ever would like to chat, please do not hesitate to contact me. Please know that you are not alone, there is always hope and you will feel like you again.