We’re six-ish months into everyday life during a pandemic, racial tension is boiling over, and we’re in the midst of a horrible election cycle. It’s an understatement to say that life is hard right now. I’ve heard from countless people with headache disorders and other chronic illnesses who are experiencing an increase in symptoms. Depression is creeping up for many. Even my healthy loved ones are feeling frayed.
I found myself thinking of you all as I listened to Brené Brown’s latest podcast episode, On My Mind: RBG, Surge Capacity, and Play as an Energy Source. She talked about the frustration and despair that’s rampant right now. She referenced an article I read last month and found really helpful for understanding my current stressors, Your ‘Surge Capacity’ Is Depleted — It’s Why You Feel Awful. In addition to explaining the “why,” which I always love, the article has good coping tips.
So how are you doing? How do you feel physically? Emotionally? What coping skills are you using to get through this difficult time? I understand if you don’t want to share in the comments (though you can post anonymously), but you’re welcome to send me an email if you’d like to catch me up.
If you’re curious, I’m doing OK. I’m heartbroken by the number of people who have died because of how the country is handling COVID. I’m disheartened and worried about race relations in the US (while at the same time have some hope for change). I’m anxious about the election and sad about Ruth Bader Ginsburg’s death. And yet, I’m holding up fairly well. Here are the high points:
- The isolation is surprisingly fine for me. I think that’s because I’ve been housebound before, so I’ve already developed coping skills to manage it. Also, last time I believed it would never end, while this time I think it will.
- When the weather and migraine attacks allow, I’m getting outside for walks. That’s a huge benefit to my mental health.
- While my migraine attacks are worse than they’ve been for a few years, I think they’re improving now that monsoon season is over.
- My husband is my favorite person to spend time with and we’re having fun at home together. We’re able to be in separate spaces during the day, so I don’t even have to listen to him on Zoom at work (which would definitely stress me out).
- My mom and I are working on an oral history project. We’re having great conversations every week and I’m learning a lot about her and our family.
- I have regular video chat dates with friends to do puzzles (not puzzles with pieces—more like logic puzzles). I love both the people and the activity.
- I’m doing more advocacy work and getting excited about writing again. It feels great!
Oxygen is an effective, safe, and relatively inexpensive treatment for cluster headache. Yet Medicare and Medicaid (and, by extension, many private insurance companies) don’t cover home-use oxygen as a cluster headache treatment.
Public Comment Open Through September 16
The Centers for Medicare and Medicaid Services (CMS) is reviewing their policy and is open to public comment through Wednesday, Sept. 16. If they reverse their decision to allow for oxygen coverage, then private insurance companies will likely follow. That would widely expand the number of people who have access to this treatment.
How to Leave a Comment
The Alliance for Headache Disorders Advocacy created a guide for submitting comments to CMS and include links to PDFs with specialized information for patients and caregivers. The gist:
- Write a comment about the efficacy of oxygen for cluster headache and your experience with cluster headache, if you have it (but you don’t have to have cluster headache to comment!)
- Submit your comment on the CMS website.
That’s all there is to it. Obviously, spending more than 10 minutes to write a high-quality comment, especially if you have cluster headache or love someone who does, would be fantastic. But if you can only leave a quick comment, please do.
People are falling all over themselves to declare they aren’t afraid of COVID. Some eschew masks and precautions all together to show they are unafraid. Others—those I’m more likely to encounter—do wear masks, but make sure others know it isn’t out of fear. They have reasons at the ready—usually that they’re afraid of getting someone else sick—and attribute their concerns to caution, rather than fear.
I don’t do that and I don’t understand the compulsion to do so. I willing say that I’m afraid of getting COVID. I am not immunocompromised. I am not an essential worker. I’m unlikely to get anyone else sick (other than my husband and that thought does scare me). And I’m being more cautious than almost anyone I know.
Why am I so afraid? Because I live with a chronic illness and know what it’s like to lose physical capacity. I will do anything I possibly can to avoid the risk of adding more symptoms to the list of those I already live with.
No one knows what the lasting effects of COVID will be for people who survive. Some will be just fine. Others report lingering symptoms, including impaired breathing, headache, and fatigue, not to mention organ damage. (Headache specialists are seeing new patients with post-COVID headache—living with another headache disorder or worsening the one I already have? No thank you.)
I have had chronic migraine for three-quarters of my life. I’ve had enough relief in the last few years to feel almost normal. Yes, I still spend an inordinate amount of time managing triggers and on self-care to avoid a migraine flare-up, but, nonetheless, I feel mostly healthy. Before the stress of 2020 triggered a migraine exacerbation, I could exercise daily, work almost full-time, buy concert tickets and know I’d be able to attend, make plans with friends and not have to cancel them, plan a trip and be able to enjoy it. Healthy people take those things for granted. I do not, I cannot knowing what it’s like to live such a limited life.
The thought of having lasting impacts of COVID that could potentially rob me of my normalcy is enough to convince me to quarantine for two years if I have to. I have no problem loudly proclaiming that I’m afraid of getting COVID.
The maker of SpringTMS and sTMS mini, eNeura, filed for Chapter 7 bankruptcy on Friday, August 7. In Chapter 7 bankruptcy, companies liquidate their assets, so this doesn’t look good for short-term access to SpringTMS. I don’t know anything for certain, though—all the information I have is the bankruptcy filing and that eNeura’s customer service is not responding “due to unforeseen circumstances,” as the auto replies say. Despite this, their website is still active.
That’s unfortunately all I can say for certain right now. I have industry contacts keeping an eye out for the SpringTMS to become available to patients again, whether from eNeura or another company that purchases the technology.
I’m sorry to share such bad news. My heart hurts for everyone who relies n these devices for migraine management and wish I had more information for you. I’ll keep you posted if I learn anything new.
Join me in a fundraiser for Headache on the Hill scholarships for people who want to attend, but can’t cover the travel costs. This is a virtual event that you can walk or run for or just set aside time to do something relaxing. You can participate any day you’d like between June 28 and July 7.
I attended my first Headache on the Hill in February and it’s was an incredible experience. We visited the offices of senators and representatives to ask for an amendment to a bill in Congress. While this year’s efforts were derailed by the coronavirus, meeting with staffers to talk about migraine was itself an act of awareness-raising. I felt like I moved the needle toward better funding for migraine treatment. If you’re able to attend, I highly recommend it. Even if you’re not able to attend, please consider supporting the event virtually.
Here are the details: Headache on the Hill Walk, Run or Just Relax Event