- How old were you when you first started to experience migraine symptoms?
When I first started to experience migraine symptoms I was 20 years old.
- How long did you experience symptoms before you were officially diagnosed?
I was diagnosed shortly after having regular symptoms for migraines.
- How many doctors did you have to see before getting diagnosed? Were your symptoms ever misdiagnosed as something else?
I have a wonderful GP. He was able to diagnose me. I never had to see or another doctor or be misdiagnosed. However, there is still some confusion as to whether or not my migraines are a result (and triggered by) my sensory disorder Misophonia https://www.misophoniainternational.com/what-is-misophonia/ ), which is much like SPD. I am over-responsive to sights, sound, light, etc normally, and I find an increase in stimuli and a higher fight/flight threshold has made my migraines more severe. Dr. Lucy Miller’s research article from 2013 explains the link between SPD and Migraines (source: http://journals.sagepub.com/doi/abs/10.1177/1362361313489377 ) More research is needed to understand the relationship (if any) between migraines and Misophonia.
- How important is it to find a doctor who you can work with closely? Did any doctor make a particular difference for you when it came to understanding your migraines and treating them?
In order to receive adequate and effective treatment, it’s important that patients are able to have a working relationship with their doctor. If you are unable to express your concerns and find solutions for your particular body or situation, it is unlikely that the care will be meaningful. My doctor was able to work with me and provide suggestions for my care. He was also able to prescribe medications that would match with my other health concerns. It’s important one listens to their doctor because any other ailments may change your course of action.
- What lifestyle changes have you made due to your migraines? Are there any things (foods, scents, etc.) or activities you avoid or seek out?
Because I also have a sensory disorder, which has similar attributes to migraines (and causes it), I have had to make numerous life changes. For the most part, I try to eat organic foods, limit sugar and processed foods, and only use beauty products that are all-natural with no harsh chemicals. I never waiver on the cleaning products, beauty products, etc, but food and drink seems to be something that is a difficult habit to break.
Interestingly, I didn’t have migraines for months, but lately have been drinking more soda and eating chocolate – I had a migraine this week. So, it’s definitely important to cut these things out for me.
- Have you changed anything in your home to accommodate your migraines (i.e. darkened your bedroom, added stoppers to keep drawers from slamming, use a humidifier or dehumidifier or air purifier, etc.)
I have a Himalayan salt lamp because I find the light it emits is very calming. Due to my sensory difficulties, including migraines, I have blocked off my door from sounds. I have thick dark curtains, and am mindful that the room stays dark. I sleep with earplugs and an eye-mask at all times. I have an essential oil infuser but I must be careful because certain scents can actually trigger migraines.
- Have you tried any holistic remedies (i.e. acupuncture, biofeedback) to treat your migraine? If so, how well have they worked?
While I’d be open to try acupuncture, I’m really not for things like biofeedback because they’re usually toted by non-doctors and advertised as miracle cures. While I’m totally fine with natural alternatives, I’d never do something that’s pretty much advertised as a miracle cure. Maybe this is because I’ve seen so many people be lied to about false cures for Misophonia and SPD (source for this claim: https://www.huffingtonpost.com/entry/i-have-misophonia-and-were-being-exploited_us_5789f0a3e4b0cbf01e9fd61b.) I like to err on the side of caution!
- Have you made any effort to eliminate stress due to your migraines? If so, what have you done?
My Misophonia causes an endless stream of fight/flight/freeze. I also have a generalized anxiety disorder. At this point, managing stress is basically a moot point – I can try, but it will never work.
- Have your migraines had any effect on your ability to work? How do you manage your migraines while on the job?
The longest migraine I ever had was 7 days. Luckily for me, as an advocate, I work from home and can choose to do more work the next week, etc. However, this can be frustrating because sometimes there is a lot more I’d like to get done.
- Have your migraines had any effect on your social life? How do you communicate to friends and family about your migraines and why they may sometimes require you to cancel plans?
Migraines have made me cancel plans, but nothing more than the fear of getting a migraine from the sights/sounds that might happen and trigger my Misophonia. I have stopped going out entirely, so it has become severe enough there is no social life to ruin.
- Have there been any silver linings to having migraines? Maybe you joined a support or advocacy group that helped you find friends or a sense of purpose? Maybe they made you change careers and you found a new passion you loved? Maybe they inspired a new hobby or creative pursuit?
I’d like to be that person that says, “yes! There’s a silver lining to everything” but that wouldn’t be true for me. I can’t think of anything positive for the migraines – perhaps for me, it is because it is so closely intertwined to my sensory disorder and Misophonia. I would trade everything I have to be able to freely engage with people, and interact with the world without migraines or sensory sensitivities.
- What would you say to someone who has just been diagnosed with migraine to help them based on your experience?
I am 100% for holistic and natural changes to your life such as diet, exercise, and limiting all chemicals. But, go to your doctor. Your doctor knows your sensitivities and history and can even give you medicine that can help. Since Misophonia has no treatment, I have found some relief by preventing/treating migraines. For me, Beta blockers can stop a migraine in its tracks. We are so lucky that research for migraines has provided possible treatment – don’t be afraid to use it!
More research is necessary to determine if migraines and misophonia are interrelated.