Migraine and Mental Health with Sarah Moseley
- A Migraine Australia Migraine Warrior
Sarah, our Director of Engagement, Communications and Campaigns, talks openly about her experience with migraine and mental health.
Which subtype of migraine do you have?
I have had a long history of headache and migraine extending back into early childhood. I have been diagnosed with several subtypes of migraine, including, Migraine with Aura, Menstrual Migraine and Exercise Induced Migraine. I also struggle with daily headache and ophthalmodynia periodical (ice pick headache).
Describe your migraine journey. (prediagnosis, diagnosis and now)
I don't actually remember a time when I didn't have a headache of some kind. I have some very early memories of a severe headache that was accompanied by vision issues and nausea. Back then, some 30 odd years ago, I was treated for vision impairment and was told that I was just a sensitive child prone to worry and anxiety.
When puberty hit, so too did stronger migraine attacks. But I didn't get my first diagnosis until after the birth of my son. Whilst I was pregnant, I had a severe constant headache, extreme nausea for the entire pregnancy and more vision issues. I was put through a lot of testing for things like pre-eclampsia and gestational diabetes. I had several MRIs, which when pregnant can be quite scary. (I also quickly found out I was claustrophobic!) I was also given several lumbar puncture tests for things like meningitis when my issues didn't resolve after the birth of my son as the doctors had predicted.
It wasn't until I sought further medical help away from the hospital system that I started to receive some answers and treatment. My Migraine attacks have always been close together, intense and long. Part of my problem is that I have a very long list of other health conditions that are comorbid with migraine. Today, migraine remains at the forefront of my health concerns.
Have you been diagnosed with a mental health condition?
Yes. I also have a long history of mental health concerns. As previously mentioned, I have always been a sensitive person and prone to deep worry. I was diagnosed with Depression at the age of sixteen, Generalised Anxiety and OCD at 21, and c-PTSD at 29. Mental health concerns run in my family and have been a large part of my life, both as someone who lives with mental health concerns and someone who has cared for someone with mental health concerns.
What are your top 3 most bothersome mental health symptoms?
Depression: Feeling alone even when I am surrounded by love with an inability to reach out, feeling like I am in a deep pit of despair and no way out, and that complete and utter loss of interest in all the things that would normally bring me joy.
Anxiety: That overwhelming feeling of dread that the situation or issue is going to destroy me, constant worrying thoughts about all sorts of things tumbling through my head, and feeling constantly on edge and unable to relax.
OCD: At the moment I am struggling with a few compulsive ritualistic behaviours and I truly find those are the things that agitate me the most. I get so frustrated that I am unable to break the vicious cycle. The constant unwelcome involuntary thoughts and stupid sound bites from songs that get stuck in a loop in my head can be difficult to manage. Usually something from an ad on tv, an old song or a song that's trending on TikTok. It is a common experience for people to get a song stuck in their head, but when you have it bouncing around 24/7, it takes on a life of its own and it can be quite overwhelming at times. Hypervigilance is also a tough one, especially as this stems from also having anxiety and c-PTSD.
c-PTSD: Avoidance of certain things or situations is one that I am still working on. It is a tough one to crack. Thankfully, I have come a long way in my trauma journey, but like all journeys, there is still more path ahead of me. I am a constant work in progress. The nightmares and triggered flashbacks are very difficult symptoms for me. Again, I have worked hard to overcome these for the most part, but I do still experience them. That's just the nature of trauma.
Do you have a care plan for mental health and what does it include?
I have had several care plans. Most of them have involved therapy of some kind. I have tried a lot of different types of therapies over the course of my life and found, like other medical treatments, that some were beneficial and others were not. I have always been someone who needs to talk about my emotions, so having a trained therapist who can listen without judgement and offer guidance and self-management techniques has been particularly beneficial. I have also tried quite a few holistic methods of treatment or management, and again, some have been helpful and others not so much. I find meditation, visualisation and breathwork to be the most powerful for me at the moment. I really do believe in putting in the hard yards when it comes to both mental and physical health. After all, we only get one life.
How does migraine impact your mental health?
My migraine attacks hit me very strongly, quite often, and very quickly. So I generally experience anxiety when an attack is starting to end. I mean obviously, I am grateful that it is ending, but I am also concerned about the one ahead. How bad is it going to be? How strong will the symptoms be? How long will it last? What will I have to postpone this time? During particularly long attacks, those that last weeks on end, I sometimes experience bouts of elevated symptoms of depression about the amount of constant pain I am in. Thankfully these moments are fleeting.
How does mental health impact your migraine?
I tend to find that if my mental health concerns are not well managed or I am having a flare, then I also experience a flare in my migraine attacks. Particularly the severity. Stress is a major trigger for my migraine attacks, so it is important for me to look after my mental health just as much as I do my physical health. Our bodies are a complex system and everything is connected.
Do you feel as though you have had some grief related to losing the life you had prior to migraine?
Oh absolutely! But this one is tricky. I have a lot of physical health issues as well as migraine, and combined, they have prevented me from doing certain things in life and living life the way that I would like to. I have never known a life without physical pain, but I have had some terrible experiences of losing goals and dreams due to health-related problems. It seems to run in a bit of a cycle for me. I experience a new symptom or illness, I find that it is increasingly difficult for me to participate in all areas of life the way that I used to, I admit to myself that something has to give, I accept that there will be change, I make the change, I am hurt and angry and frustrated about the loss of whatever it is I am giving up, I feel intensely guilty about what that means for those around me, I slowly come to terms with what my new reality looks like, I discover new passions and develop new goals, and then slowly (or sometimes quite suddenly) something else will come along to put a spanner in the works. I guess the good news is that I have learned from my experiences and have developed some coping mechanisms. So while the next time around is often just as difficult as the last, it doesn't seem to take me as long to overcome. I think the hardest part about this journey for me is the guilt and worry I have about the impact it all has on my beautiful son, my fiance and my loved ones.
What are your thoughts on therapy?
I believe that therapy definitely has a place in both the mental health and chronic pain journey. They are intertwined. If you experience chronic pain, you will more than likely experience mental health concerns. Therapy can play a supportive role and your therapist is an important part of your care team. That said, I don't feel that therapy alone is the answer. I have been a longtime believer in treating the body as a whole. The systems in our body are connected and sensitive, so treatment should take a whole body approach. For me, this means medications, supplements, dietary intervention, mental therapies, physical therapies etc.
Do you see a therapist and/or psychologist? Do you feel they have a solid understanding of Migraine?
I have in the past and I will in the future. I have had a range of mixed experiences, but for the most part, I have not found a therapist or psychologist that truly understands the extent of what I am dealing with. I feel like I have seen different therapists for different reasons. Rather than seeing one therapist for my whole experience. I suppose this comes down to their own experiences with chronic pain and mental health. I sometimes feel like, if you have not experienced it, can you truly understand what it feels like? That's not to say I haven't felt heard or supported, I have. Just not in the way that I might like. Then again, maybe that's asking a bit too much.
Do you have a support network? Who does it include?
I have a pretty great support network. My son and fiance are the absolute best! They both have experience with migraine, and my son has also had a long history of mental health concerns. So it has given them both the unique benefit of truly understanding. They are both incredibly empathetic and do whatever they can to help me, often going above and beyond. They are both solid as a rock and I would be lost without them. I consider myself to be extremely lucky! My family and friends are also part of my amazing support network. I cherish their love and ongoing support. My besties are the best of the best! I do hope that I am there for my friends and family in the same way. But where would I be without my group of Migraine Australia volunteer friends? These people are all on their own migraine journeys and have individual and unique health challenges. They truly are a great bunch of lovely people that 'just get it' and for that, I am eternally grateful.
Would you recommend that fellow Migraine Warriors seek support for their mental health?
Yes, absolutely. Having any kind of chronic illness or chronic pain takes a hell of a lot of strength and it often feels very overwhelming. Seeking support for mental health really should be as normal as seeking support for physical health. The whole body matters.
In terms of speaking up, as my mum always used to say, "A problem shared is a problem halved". You don't have to suffer alone. Don't stop speaking up and looking for your tribe.
There is power in your words. Sharing the story of your journey is not necessarily about looking for sympathy for the difficulties you have experienced. It is about giving your pain a voice. It is about helping others to gain a better understanding of what you go through. Besides, you never know who your story may help or inspire. Your story matters and so do you!
What is your top mindfulness tip?
Ooh, I like this question. It is something I am quite passionate about and I incorporate mindfulness into every single day. But picking just one tip, that's the hard part. I'm going to go with breath. Our breath is something we often take for granted. It is something that we do without thinking. But when we place a gentle focus on our breath, we are making ourselves more aware of our breath and how it makes us feel. Breathwork techniques are a great way to bring yourself a sense of calm. It doesn't have to be anything overly complicated either. Box breathing is a great technique for bringing your awareness back to your breath and your mind into the moment.
Box Breathing (or square breathing)
1. Close your eyes
2. Exhale slowly through your mouth for a count of four
3. Hold your lungs empty for a count of four
4. Inhale slowly through your nose for a count of four
5. Hold the air in your lungs for a count of four
6. Repeat as required.
Do you use any apps to assist you with managing your mental health?
Not specifically mental health apps, but I do use music as a tool, I also like to listen to podcasts on the topic, and some guided meditation. For those, I use Spotify and YouTube. I also use YouTube and Pinterest for yoga flow routines. I can't always practise yoga, but when I can, I use a modified routine that suits my needs. I have heard good things about the app put out by Headspace. Might have to give that one a go.
What are your top 3 tips for managing a bad mental health day?
1. Rest. Take a step back from whatever it is you are focused on and allow yourself to rest. Most of us are terrible at pacing, so we must learn to listen to our bodies and rest. Pushing through just makes it worse.
2. Self-care. Give yourself some grace. You carry a heavy load. You deserve to be looked after. Something as simple as a shower/bath and something you find comforting can be enough to take that edge off.
3. Remember to breathe. Try the box breathing exercise above and see if it helps. If it does, maybe look into some more breathing exercises and meditation.
Do you have any other thoughts you would like to share with our audience?
I highly recommend joining the Migraine Australia Chat Group and your local Migraine Warrior Support Group. These groups are filled with people experiencing similar feelings and health complications as you. They are great places to lay down your worries and concerns and receive support and feedback from supportive and understanding people. You might also make a few solid friendships along the way. You also have a lot to offer others. Your experience with migraine and mental health matter.
And lastly, reaching out is hard, but not reaching out and being alone with your pain is harder.
Migraine Australia would like to take this opportunity to thank Sarah for her time and for helping us bring migraine #OutOfTheDark