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An Easy Way to Support Headache Disease Advocacy: Please Complete the CHAMP Survey

The headache disease community needs your help! To gather information to help improve patient access to treatments, advance research, and decrease stigma of headache diseases, the Coalition for Headache and Migraine Patients (CHAMP) is conducting a survey. I’m a CHAMP member and can tell you that the coalition is doing great work for people with headache diseases. We can be even more effective if we hear from more patients about their experiences.

In order to do this important work, we need to hear from more voices. This is where we’re asking for your help. You can:

  • Take the anonymous survey! If you live with headache, migraine or cluster disease, we want to hear your experience. The deadline is Sunday, Feb. 29.
  • Share this with anyone you know who lives with a headache disease

The survey is hugely important and takes about 15 minutes to complete thoughtfully. I promise your time will be well spent. At the end of the survey, you have the option to enter to win a $25 Amazon gift card.

Complete the CHAMP survey by clicking here!

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Headache on the Hill 2020

On Tuesday, I attended my first Headache on the Hill advocacy event in Washington, DC. It was an inspiring, educational experience where I learned a bit more about how our country works. I was one of 174 advocates who sought to get co-sponsors for a bill that would increase the number of residencies for people who treat addiction and pain disorder. We also asked for an amendment to the existing bill to increase fellowship funding so more people can train as headache specialists. We represented 45 different states and visited 255 offices of Congress members.

TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling

TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling

What is Headache on the Hill?

Headache on the Hill is an annual event where people who are affected by headache disorders visit the offices of their state senators and representatives with a specific “ask” to improve the lives of people with headache disorders. The ask is different each year and it’s tailored to specific activities in Congress or needs in the headache community.

The first Headache on the Hill, in 2007, was entirely healthcare providers. This year, about 70% of the participants were people who live with headache disorders or our loved ones who wanted to advocate for us. All six of us on TeamArizona have migraine and two are also healthcare providers, which was a great mix.

What We Asked For

The Opioid Workforce Act is a bill currently in both the House in the Senate that seeks to increase funding for more training programs in addiction medicine, addiction psychiatry, and pain medicine. We asked for co-sponsors for the bill and also asked for an amendment to the bill to include fellowships. The bill is currently written only for residencies, but pain medicine (and headache medicine) are fellowships, not residencies. We also asked that they specifically include headache medicine residencies in the bill, since they have different training programs than pain specialists do.

How You Can Help

Even if you didn’t attend Headache on the Hill, you can help by reaching out to your senators and representatives about the Opioid Workforce Act (which is H.R.3414 in the House and S.2892 in the Senate). First, check to see if they have already co-sponsored the bill (check here for representatives co-sponsoring H.R.3414 and here for senators co-sponsoring S.2892). If they have co-sponsored, please thank them for doing so and tell them how important it is to you. If not, please ask them to co-sponsor the bill. You can also ask them to amend the error in the language to include pain medicine and headache medicine fellowships (rather than residencies), but you can skip that part if it feels too hard to explain (I got training on it and it was still hard to explain!).

You can find your representatives and senators here. Calling is probably the easiest approach, but research shows that a personalized postal letter or personalized email are more effective than a phone call. Given that “personalized” is a key component of the effectiveness of the letter or email, I don’t have prewritten wording for you. My recommendation is to start with the “ask” and then tell them why it’s important to you. Be sure to include your address in the letter so they know you’re a constituent.

If you call, know that you’ll likely reach voicemail, so if you have anxiety about talking to a stranger on the phone, know that you probably won’t! Be sure to leave your zip code so they know you’re a constituent. I always add my full address at the very end of the voicemail, just in case.

Join Me Next Year!

Join me in 2021 to advocate for headache disorders in your state! Follow the Alliance for Headache Disorders advocacy on Facebook or Twitter to learn when the applications for next year open, which is usually in November. There is an application form to fill out and not everyone is accepted—it’s based on which states and areas within each state need representation—but please don’t be intimidated by the application form. You don’t need to have a social media presence or a history of advocacy to be able to participate, but it’s good information for them to have, so they ask for it.

A caveat: Headache on the Hill is the largest patient advocacy group without a corporate sponsor that does lobbying events like this. That means both that there’s no corporate intervention in the message (which is great!) and that it’s done on a shoestring (which can be a challenge for some patients who want to participate). Participants’ hotel rooms are covered for at least one night and usually a couple meals are covered, too. You’ll need to cover transportation to and from Washington, D.C., some of your meals (I brought a lot of nonperishable food and found a grocery store nearby), and for extra nights at the hotel. It’s a commitment, but it’s an incredible experience if you can do it. I honestly can’t count how many people have told me that attend Headache on the Hill was life-changing for them.

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Hello There!

I’ve written countless variations of this post over the last three years, each time deciding to wait to publish it since I’m on the verge of a breakthrough with my health. And each time there’s a new permutation that slows me down. I’m finally ready to share.

For most of the last three years, I’ve been dealing with mysterious health issues that aren’t migraine-related (in fact, I’ve been doing pretty well migraine-wise thanks to the gammaCore). Brain fog, fatigue, joint pain, vertigo, tachycardia, and muscle pain, stiffness, and twitching have been the main symptoms. The symptoms come and go with one or two usually taking the spotlight at a time. I’ve seen a rheumatologist, several neurologists, three cardiologists, done lots of physical therapy, and had plenty of tests. I’ve been misdiagnosed with several conditions, none of which really seemed to fit what I was experiencing. And I’ve been terrified that I was in the early stages of a degenerative neuromuscular condition.

The Gist

I can say with 98% confidence that, ultimately, all the problems can come down to either side effects of supplements or vitamin deficiencies, some of which were caused by an excess of a particular supplement. The two main players have been a vitamin B12 deficiency and excess magnesium, though there have been other factors. I think I’ve found a balance. If you’re curious, the details are below.

Vitamin B12 Deficiency

The B12 deficiency is easiest to explain, so let’s get it out of the way. I became a vegetarian as soon as I went off the ketogenic diet and wasn’t diligent about getting enough B12. After a bout of severe vertigo—during which I spent the majority of three weeks in bed—and being misdiagnosed with Sjogren’s syndrome, I began supplementing B12 in earnest. It went great at first. My symptoms decreased fairly quickly after starting the supplement—the joint pain and vertigo were gone and the muscle symptoms improved, but didn’t go away completely.

Since I still wasn’t getting enough B12 in my diet, I kept supplementing it. Then the supplement became a migraine trigger. So I tried in earnest to eat more foods containing B12, which also became migraine triggers. And both the supplements and foods also seemed to cause my heart to race. It took months to sort out, but I eventually found that an occasional B12 injection did the trick for getting enough B12. After a while, I was able to eat it again without it being a migraine trigger. But the tachycardia remained.

Excess Magnesium

All the while, I continued taking magnesium at high doses, which I’ve done since 2011. I didn’t need it for most of my daily migraine management (the gammaCore took care of that), but it seemed to help with weather-triggered migraine attacks and I was hopeful it could help with some of my muscle-related symptoms. I was taking 840 mg a day. I’d been as high as 1,200 mg, so I didn’t think much of it. Until two months ago when I finally put all the pieces together and realized that magnesium was likely the cause of many of my remaining symptoms.

One of the unexpected benefits of the gammaCore is that I no longer needed medications I’d used for years, like Wellbutrin and cyproheptadine. I figured that out after they started causing side effects. It took literally years to consider that magnesium could also be causing side effects. Stopping the magnesium was another step toward resolving my symptoms (most notably the tachycardia, which was such a relief), but there was more work to be done.

Calcium and Potassium Deficiencies

My doctor said that the excessive magnesium may have caused an electrolyte imbalance that resulted in calcium and potassium deficiencies. Supplements often trigger migraine attacks for me, so sorting out that out has been a challenge. I’m getting close—I’ve found a calcium supplement I can tolerate and am working to get the right amount of potassium in my diet.

Vitamin D and Protein Deficiencies

But wait! I let a couple other things get out of whack. Always afraid of triggering a migraine attack, I haven’t taken my vitamin D diligently. I’ll take it for a while, get a blood test and see that it’s at a good level, then forget to take it until I get a new round of symptoms. Lather, rinse, repeat. I literally cannot remember how many times I’ve gone through that rigmarole in the last three years.

And that vegetarian thing? I really thought I was getting enough protein. I’d calculated the amount I needed when I was on the ketogenic diet and was mostly keeping up with it. Except I weighed 25 pounds less then and was sedentary. Between my long walks each day and the strength training I now do three times a week, I’m now considered quite active, which requires a lot more protein than I was getting.

Then There’s the Life Stuff

In addition to managing my fluctuating health, the last three years have been fairly stressful. I watched a loved one die of ALS and nearly lost another to suicide. I saw the end of a friendship with someone I once considered one of my essential people. And Hart and I have been trying to figure out what our life looks like without migraine horning in on our marriage all the time—it’s a good stress, but something to figure out nonetheless. On top of all that, I’ve worked nearly full time at TheraSpecs for much of the last year. Again, that’s a good stressor, but it’s taken too much time away from the health and self-care practices my body requires to stay healthy.

Where My Health is Now

I’m doing a lot better physically. I still have to get some dietary details sorted out and need to wait a while to be sure my symptoms don’t come back, but I think I’m basically on top of the problem. I’ll see another neuromuscular specialist next month to be sure my symptoms are really due to vitamin and nutrient issues rather than an underlying condition. But I feel like I’ve basically got it under control.

My Mental Space

I flirted with the idea of getting angry with myself for letting basic vitamins and minerals get out of whack and for taking so long to realize that the magnesium was a problem. That’s ridiculous. I’ve been working just as hard at sorting out these mysteries as I did at finding effective migraine treatment over the years. I’ve been to doctors and talked to my therapist/naturopath countless times. I’ve been trying so hard and yet I missed some things. I didn’t fall down on the job; I had a surprisingly complicated situation to figure out.

It’s been tough to have these weird symptoms at the same time as I’ve been feeling better migraine-wise. I’ve spent much time worried that I went from being disabled by migraine to either having another disabling disease or, worse, a horrible disease that would kill me prematurely with much suffering along the way. I’ve managed these emotions as they come and they haven’t been too frequent, but they’re terrifying when they do come.

But right now I’m in a good space mentally with my health and the other life stressors I’ve juggled in recent years.

What’s Next

I can’t predict what’s next, but I know what’s now and what I hope for in the near future. I’ve cut my hours at TheraSpecs back to 20 hours a week to allow more time for managing my health and, I hope, doing more writing and advocacy work. I’ve been making time for regular exercise and now need to get on top of healthful eating again (my diet isn’t terrible, but it’s not as vegetable-forward as I’d like to it be). I’m aiming for at least one post for The Daily Headche and one article or video for Migraine.com each month this year. So I hope to be around more often in the coming months!

P.S. My latest article for Migraine.com is Green Light Therapy for Migraine. The NPR story on green light therapy that circulated in December left me with more questions than it answered, so I interviewed the lead researcher to get a better grasp on the research.

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30 Things About My Migraine Experience

1. My diagnosis is: Migraine with visual aura

2. My migraine attack or headache frequency is: Every other day, lasting for a couple of days with postdrome lasting up to 2 or 3 weeks.

3. The first migraine attack or headache I remember was: I got a visual aura while working and thought I was going blind.

4. My pain levels range from: Mild to severe (6-10 out of 10)

5. I was diagnosed in: 2010

6. My comorbid conditions include: Depression

7. I take 1 pill each day for prevention (it works somewhat) and 1-4 pills to treat an acute attack

8. In addition to pain, other symptoms I experience include: Nausea, sensitivity to touch, noise, smell and light, fatigue, confusion, lightheadedness, irritability, moodiness, tooth- and earache.

9. Treatments I have tried include: Triptans, preventatives, stress relievers, muscle relaxants, NSAID’s, cannabis, dark room rest, cool air, sleep.

10. During a migraine attack or headache, I: Try to hide it, relax and drink lots of water. Sleep usually works best, but it’s not possible while I’m at work.

11. My migraine attacks or headaches are triggered or get worse when: it’s warm outside and when I move or do exercise, stress and eat sugar or MSG.

12. The most frustrating part about having migraine or a headache disorder is: the effect it has on my husband and not being able to do or eat most things.

13. Having migraine or a headache disorder causes me to worry about: my general and mental health.

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “okay” and look confused or feel sorry for me, or they tell me about their or someone else’s migraine story and we share helpful tips.

15. When I see ads or articles about migraine or headache disorders, I think: Maybe they can help me understand more about my condition.

16. My best coping tools are: sleeping or staying busy, depending on how fatigued I feel.

17. I find comfort in: knowing that there are so many people that experience what I do, and that my pain could’ve been way worse.

18. I get angry when people say: That I shouldn’t take a sick day for “just a headache”.

19. I like it when people say: That they understand or can imagine the pain, even if they don’t, because they’re at least trying to.

20. Something kind a person can do for me during a migraine attack or headache is: To not talk to or touch me and to make as little noise as possible.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: That he’ll help me find a treatment that works.

22. Having migraine or a headache disorder has affected my work life by: disabling me some days and slowing me down other days.

23. The hardest thing to accept about having migraine or a headache disorder is: that I can’t eat ice cream or enjoy the heat of the summer anymore without expecting a migraine.

24. Having migraine or a headache disorder has taught me: How to push through despite how I feel.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: “Throw glitter in today’s face.” Just having something that makes me smile helps me cope a little better.

26. If I could go back to the early days of my diagnosis, I would tell myself: To stop eating sugar altogether.

27. The people who support me most are: My husband and my parents.

28. The thing I most wish people understood about migraine or headache disorders is: That it’s more than just a headache or a “muscle thing” (yes, a pharmacist once said to me, sounding somewhat unsure, that it’s just a muscle thing)

29. Migraine and Headache Awareness Month is important to me because: It educates people about something most of us have a misconception about.

30. One more thing I’d like to say about migraine or my headache disorder is: That I hope they will find the cause(s) and a cure some day, and that people will take it as seriously as any other disabling diseases.

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#truemigrainepose

This photo is not a glamorous temporary facelift intended to show off my manicure, despite what Elle magazine might claim. Nope, it’s me trying to get at least a little work done during a migraine attack.

According to Elle, #migrainepose is a trending Instagram pose that’s “damn flattering.” I wish I’d know how beautiful I looked all these years that the pain-induced furrow between my eyebrows has been deepening into a rut.

We at ELLE.com love a weird Instagram pose, and the latest one populating on our feeds is giving everyone a headache. Well, it’s making everyone deliberately look like they have a headache. And it’s damn flattering.

Migraine Pose, coined by makeup artist Nam Vo, involves posing with one or two hands pulling your face up by your temples as if you had a, well, migraine. There’s a reason it’s trending: The pose tightens the face, makes your cheekbones look more prominent, and lifts the brows. It’s a temporary facelift for the ‘gram.

“I love it because the beauty of your hands frame the face and give it more structure. I always make my models pose this way,” Vo told me, “It’s also a great time to show off your manicure.” #Priorities.

My #priorities are reducing the stigma of this disabling disease that can rob people of any semblance of a normal life, teaching those without migraine how that migraine is so much more than “just a headache,” and trying to live as well as possible with a life that’s dictated by a terrible illness. Granted, showing off my beautiful hands and giving my face more structure are probably loftier goals. Perhaps I could have pursued those important priorities if I hadn’t spent most of my adult life disabled by migraine.

Ways to fight back against this blood-boiling migraine stigma:

  1. Post a photo of yourself during a migraine attack to social media with the hashtags #truemigrainepose and #migrainepose
  2. Tell Elle what you think of their perpetuation of migraine stigma. Twitter: @ellemagazine, Instagram: @elleusa, Facebook: @ellemagazine. You can also email them at editors@elle.com or contactus@elle.com. **Do not use “migraine” in the subject line! These messages are being returned as undeliverable, while those with blank subject lines go through!**
  3. Tell Nam Vo, the makeup artist who coined the term, what you think, too. Instagram: @namvo