Part of my Migraine management strategy has been to avoid any of my Migraine triggers that can be avoided. It has seemed like a small sacrifice to make to reduce the frequency of my Migraine attacks. After all, what kind of life did I have when I was having 25 to 30 Migraine days a month? My avoidable Migraine triggers include:
- sleep issues such as too much sleep, too little sleep, disrupted sleep, or an irregular sleep schedule;
- red wine (my one and only food trigger); and
- odors and fragrances
Avoiding that last Migraine trigger ”odors and fragrances” has meant remaining cocooned in my home much of the time. Shopping online has let me avoid the mall and many other retail stores. When my Migraine frequency was at its highest, I also stopped attending church because so many people wear fragrance to church that Sunday morning services were certain Migraine trigger situations for me. Working mostly from a home office has made it easy to simply stay home most of the time and avoid odors and fragrances as well as the Migraine attacks they bring.
Recognizing the consequences of avoiding Migraine triggers
This lifestyle has worked well for me for many years now. Yes, there have been times when my preventive treatments stopped working, and that has meant going back and forth between episodic Migraine and chronic Migraine. Still, with perseverance and the help of a fabulous Migraine specialist, I keep getting back to episodic status. At this point, I’m having between one and three Migraine attacks per month.
Staying home most of the time hasn’t really bothered me until recently. John (my husband) retired in 2000, so we were home together, which we both treasured and enjoyed. Working online puts me in contact with many people in the Migraine community on a daily basis, and I have great friends I talk with pretty much daily via telephone.
It was our own peaceful, happy little world until it came crashing down around my ears on September 18, 2017. That was the day John died unexpectedly, and I was left here, alone. None of my family members live here, and most of our friends had been from the community theatre where John and I used to volunteer. Once we stopped volunteering, contact with most of those friends declined, then stopped.
Once our family members had returned home after John’s memorial service, Binx (our cat) and I were here alone, and I suddenly found the silence oppressive. If not for friends who called me often, I don’t know how I’d have managed this past year. It’s been during this past year that I’ve recognized the consequences of avoiding odors and fragrance to avoid Migraine triggers.
Regaining balance means taking chances
The conclusion I’ve reached is that my lifestyle is out of balance, and I need to take steps to regain that balance. People are social beings. We need interaction with others to be happy and healthy. Now that John isn’t here, I’m finding that I need face-to-face social contact with other people, and staying home to avoid Migraine triggers is hindering me. To regain some balance, I’m going to have to take some chances.
A new health issue has been forcing me to get out more. An issue with my back and an entrapped nerve has had me going to physical therapy twice a week since the end of February. There’s good news on that front. The physical therapy has helped enough that we’ve met the goals that were set for physical therapy, and I didn’t encounter fragrance or other odors there. With the goals met, I’ve been discharged from physical therapy, but the cause of the problem (the entrapped nerve) can’t be resolved without surgery, so it would only be a matter of time before I’d need to return to physical therapy. What I’ve decided to do (with the support of my doctors) is to join the health and wellness center that our hospital has and begin an exercise program that will hopefully help me maintain the progress made in physical therapy. Exercise isn’t a trigger for me, but getting overheated is. So far, I’ve been able to avoid problems by pacing myself through my program.
Another chance I’m getting ready to take is getting back to church. This may well mean a Migraine attack most Sunday mornings, but I’ve decided that it’s a chance I’m willing to take. I can pretreat with my sTMS Mini device and take it and my trusty Axert with me. Since I’m currently experiencing up to three Migraine attacks per month, and I won’t be going to church every day, if this means an additional Migraine attack even every Sunday, I can treat without risking Medication Overuse Headache. If getting out more means exposing myself to my Migraine triggers more often, so be it. I’ll admit that I’m a bit apprehensive about this, so I’ve been employing more relaxation techniques. A friend and colleague, Dr. Dawn Buse, has some wonderful relaxation recordings available on her web site.
Input from a psychologist specializing in Migraine and Headache
I asked my colleague and friend Dr. Dawn Buse for her input on this topic. Dr. Buse is a licensed psychologist;Â Clinical Professor, Department of Neurology, Albert Einstein College of Medicine of Yeshiva University; andÂ Assistant Professor, Clinical Health Psychology Doctoral Program, Ferkauf Graduate School of Psychology of Yeshiva University. Dr. Buse said:
â€œMigraine is a thief of many things: time, experiences, and relationships among other precious commodities. There are several reasons why migraine can negative affect relationships and leave one feeling isolated and alone.
As Teri experienced, she avoided places where she might encounter her triggers, but that also meant that she missed out on seeing people and being part of activities and events. People with migraine may also stop making plans and commitments for fear of needing to cancel or letting others down or they may feel too overwhelmed by migraine pain, associated symptoms and fatigue to participate in social activities. Over time it may feel like life has gone on without them and their friends have moved on.
So while there are good and logical reasons that someone may start to withdraw from their social life and the outside world, as Teri mentioned, we are social beings and for many of us being part of the larger community is exciting, comforting, and rewarding. The wealth of online and virtual opportunities for connection such as online support groups and social media connections are very important ways to feel connected for people living with migraine and/or other chronic conditions; however, nothing truly replaces an in-person experience.
In fact, our brain releases feel good chemicals such as oxytocin (the â€œhug hormoneâ€) andÂ other chemicalsÂ in response to social interactions. Going back thousands of years, humans counted on each other for survival, and these are other chemicals are released in our brain to encourage social interaction. This drive to be part of the tribe is deeply rooted in our brains as necessary for survival and happiness. And while the world certainly looks different a few thousand years later and we may not need each other for survival in terms of food or safety, we still need each other for our general sense of happiness and well-being.
So while it is understandable that there are times when living with migraine that we just want to be alone in a dark, quiet space, and not everyone is understanding of the demands of an often unpredictable, painful chronic disease, it is good for us to seek out supportive, kind, like-minded people to be part of our in-person support system and social network.
So the next time that you are feeling up for it, reach out to a friend or family member for an in person get together. It’s good for you.”
Summary and implications for other Migraine patients
Closing myself off at home to avoid Migraine triggers seemed reasonable at the time, and it has been effective in helping reduce the frequency of my Migraine attacks. In hindsight, it has become clear that there were consequences that are now detrimental to my quality of life. I need more contact with other people, and that’s going to mean taking the chance that I’ll have more Migraine attacks.
Although this is rather personal, I decided to share with our readers, hoping it will help other Migraine patients make better balanced choices than I did regarding Migraine triggers and isolating myself so much.Â For anyone who has already secluded themselves as I did, I hope my experience can help you make decisions now that can help you avoid ending up in the same situation in which I found myself.