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Take 10 Minutes to Help People With Cluster Headache

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.

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I’m Afraid of COVID—and Migraine is the Reason Why

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.

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SpringTMS, sTMS mini no longer available?

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.

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Headache on the Hill Walk, Run or Just Relax Event, June 28 to July 7

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

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Being stressed over migraine is a migraine trigger

I never used to think of stress as a migraine trigger for me, but I’ve discovered in the last few years that my migraine frequency does increase in times of extreme stress. Unsurprisingly, right now qualifies as highly stressful and migraine kicked my butt for weeks this spring.

I tried all my usual tactics—I made sure my sleep and diet were in good shape, stopped reading the news, made exercise a priority, and committed to lots of relaxation. Nothing made a dent in my attacks. They got so bad that I had to take a leave of absence from TheraSpecs and stopped my advocacy work. Still no change.

After three weeks of frustration, I had an epiphany—maybe the stress of the increased migraine attacks was itself triggering more migraine attacks. While I had pulled out all the self-care stops, I had continued to obsess over my triggers and be frustrated every time an attack landed me on the couch for the day.

So all I had to do was stop being stressed! Aiming for that goal is usually a recipe for increasing my stress levels, but this time I managed to let go. I decided to drop all the worry and, for some reason, it actually worked. By the next day, I started to feel better. Within two days, I could definitively say that my attacks we less frequent and less severe, plus I felt better between attacks than I had in months.

I asked psychologist Dawn Buse, PhD, for her thoughts on the stress of migraine as a migraine trigger. She pointed out that it’s impossible to tease out which came first, the chicken or the egg, and explained more about the relationship between stress and migraine. She said:

“The relationship between stress and migraine has many different forms which can change from person to person, and over time and life phases for an individual. Stressful events or periods can contribute to triggering an attack. This can occur during a period of high stress or after the stress level has reduced, which is called the “let-down” effect. Long periods of stress (such as a personally difficult time or the global pandemic) can be associated with increased frequency of attacks. And some stressors such as childhood maltreatment are associated with the onset of migraine disease. Conversely, stress is also a consequence of living with migraine. Migraine can have significant negative impact on all important aspects of life and negatively impact relationships, careers, finances, academics, family, friendships and fun, just to name a few areas-—which can be very stressful.”

Dr. Buse also gave some information on managing stress, which I’ll include in an upcoming Migraine.com article on this same topic. Most notably, she shared a quote from Jon Kabat-Zinn that spoke to my recent experience: “You can’t stop the waves, but you can learn to surf.” My attempt to stop the waves was not only ineffective, it made me feel like I was drowning. When I attempted to surf, my migraine attacks improved within a day.

I’ve been trying to surf for a couple weeks now and am doing well enough that I’ve spent this week on advocacy work and will head back to (remote work at) TheraSpecs next week. I’m nervous, but excited to get back to a life beyond my own health.

I’ve been thinking of you all and hope you’re doing as well as possible. Life is so weird right now.

hand reaching up through surf
Photo by Nikko Macaspac via Unsplash