Listening to the patient panel on the Migraine World Summit (MSW) this year was as inspiring as I expected it to be. There were so many moments I sat nodding my head in agreement to the views and experiences of the patient advocates as they so closely matched my own experiences of managing migraine. I really encourage you to listen to the sessions as I know you will get so much out of them.
Later though, I realised that if I had listened to this talk at the start of my journey with managing migraine I wouldn’t have been nodding along, because I hadn’t come to have that level of knowledge yet. This is why the MSW is such a helpful resource, both for those newly experiencing migraine and those years or decades into managing this condition. It gives you so much insight into managing migraine, from the diversity of symptoms to medication options, new treatments, emerging research and helpful lifestyle modifications. I wish I had known of this resource at the beginning of my migraine journey.
These are 5 tips on managing migraine that struck me when listening to the patient advocates, and that I think are really important to consider when you are accessing treatment and working on self-management. The patient advocates spoke at the Patient Panel: Thriving despite Migraine on March 19, 2020.
This post is for informational use only, and does not constitute medical advice in any way. Please consult with a specialist headache doctor if you live with migraine or suspect that you do.
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1. Find a good doctor
‘You hold onto a good doctor when you find one’ (Carl Cincinnato)
I know, this seems pretty basic. Of course a good doctor is important. When I started to experience migraine though I was pretty clueless about how my healthcare system worked, and hadn’t any knowledge of specialist headache doctors. To begin with, I just went along with the ENT doctor that my GP referred me to. Well, let's just say that ENT doctor wasn't the best . . .
I learnt pretty quickly that not all doctors are created equally when it comes to migraine. Many neurologists are not specialists in managing migraine, and will not be the best fit for a migraine patient. If a doctor doesn't fully explain migraine to you, talk through medication options, supplements for migraine and lifestyle techniques for managing migraine (in line with your own lifestyle), then personally I would find someone else.
This is where research comes in. Look up reputable sources to find a good headache doctor – google leading hospitals in your area to see if they have a headache clinic or specialist headache doctors, check the CVs of doctors online, contact organisations such as The Migraine Trust and VeDA (Vestibular Disorder Association) for their suggestions or, if you see other doctors whose opinion you value, ask for their suggestions. If you have vestibular migraine, then you may be best seeing a neuro-otologist rather than a headache specialist (or seeing both).
I found an amazing headache clinic after working through a couple of doctors that didn't 'fit' me, and am so thankful for the kind and knowledgeable doctors and specialist nurses. My migraine care turned around exponentially, and they also recommended a brilliant neuro-otologist to manage my vestibular migraine. You may have to kiss a few frog doctors, before you find your prince or princess doctor (not literally, I think that's a breach of patient-doctor protocols 😉 )
2. Mindset
Migraine can feel so heavy. A massive adjustment to health, work and relationships. It can disrupt things so much that life can feel unrecognisable. I basically lost my job due to migraine, and I definitely lost a few so-called friends along the way too.
At the Migraine World Summit, there was a great discussion of perspective and the importance of acceptance. I know I pushed back hard at the idea of accepting that migraine was likely going to be part of my life forever to begin with. I really had the mindset for a long time that I could beat it. It took a while for me to realise that ‘fighting’ chronic illness wasn’t the best approach, for me at least.
‘My biggest success is hope’ (Shirley Kessel)
Acceptance doesn’t mean defeat though. It doesn’t mean giving up or not trying to improve your health. Instead, for me, it means recognising the condition is a part of my life, while simultaneously working to improve it as best I can. That means trying the new treatments available, arming yourself with information (but only from reputable sources!), working on exercise, meditation, yoga, whatever calms you and then hopefully calms your migraine brain too. It can be a long process, and there will bumps along the way. But it's such a better position to be in when you get there.
3. Exercise
All three of the patient advocates spoke highly of how exercise helped them manage migraine. Have a look at the Migraine Trust page on exercise for more information on this, as it’s really worth reading a full account.
At the MWS, exercise was spoken about in two main ways. The first was as a preventative, which the research backs up. Shirley Kessel spoke of walking, and trying to do 10,000 steps a day, and how this was one of her 'best preventatives’. Exercise comes in many forms, and I think finding something that suits you is the best way to start. I love running, yet for others, yoga is really helpful, or swimming. Start slow if you are new to exercise, and prepare well in advance.
The other way exercise can be beneficial is as a distraction or an escape. Personally, during lower-level attack, walking helps me appreciate how my body can do such positive things and shifts my mindset away from pain. As Alicia Torberg said, ‘exercise helps, or makes one think about it a little less’.
4. Find ‘new hobbies, new adventures’
I love the positive way that Jon Summer spoke of finding ‘new hobbies, new adventures’. He spoke with such passion over how he had taken up guitar playing, and that it felt meditative for him to play.
Realistically some of us will have to give up hobbies when we begin to experience migraine. I’m definitely not going to be going anywhere near a rollercoaster, doing certain forms of exercise or going to a 3D cinema. My head will not enjoy virtual objects whizzing towards it. I learnt the hard way long ago that me and treadmills are not friends after a full-blown vertigo attack . . .
While I can’t run on a treadmill, I can run outside though. And I think that is key – find adaptations to the things you love, or find new things to get excited about. There’s a world of possibilities, so why not try something new? Cooking, yoga, learning to play an instrument or learning a new language, photography, gardening, there are so many pursuits that may be migraine-friendly for you. Don’t let migraine be all that you think about. It’s most definitely not all that you are.
5. Find a migraine buddy or community
Having my migraine buddies and being part of a community of persons living with migraine has been so important to me. Someone at the end of the phone, or in your phone on an app(!), that truly ‘gets it’ can be a huge source of support and comfort.
Personally, I use my Instagram page to be part of a migraine community. There are smart, savvy (and sassy!) and funny men and women who do such an amazing job at making others feel less alone with migraine by sharing their experiences. They provide such helpful information and advocate for themselves and others in changing migraine care for the better. Being part of a community can be such a powerful part of managing migraine.
I'm active on Instagram, Facebook and Pinterest if you would like to follow along!
Helpful resources
VeDA (Vestibular Disorder Association)
Related posts
The A-Z of migraine - all the migraine terms (almost!)
The next steps after a migraine diagnosis
Avulux migraine glasses review
To Better Days migraine patches review
Don't forget to pin the post!
Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.
Alison Hayes says
So much great stuff in here! I'm relatively new to the world of migraines, and feel extremely fortunate that my FND specialist works with a great headache specialist (both neurologists). I'm getting botox injections and about to start a newer medication as well. My migraine expresses as a nearly constant headache, with occasional spikes.
You' ve gathered some great resources...I watched what I could of the migraine eorld summit, and I am looking forward to seeing what they have to offer this March!
Katie Clark says
I think finding something you care about (a creative outlet) that you can do as a distraction or to feel some accomplishment is a major help for those living with chronic pain, like migraine.
Sheryl Chan says
What a great roundup. I always love roundups like these as they provide different and also the same perspectives which ultimately helps to expand our own thoughts and coping tools!
Shruti Chopra says
Your first point on finding a good doctor - every time I wish to say a prayer, I always wish my doctor good health! Very selfish of me but they're so tough to find and once you've found one, you'd never wanna let them go!
Nikki Michelle Albert says
I haven't had the energy to check out the videos yet this year sadly. But I do agree with all these points for Sure!
throughthefibrofog says
It was a great Summit this year! The patient panel was especially helpful I thought.