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Spring TMS: A Patient’s Experience

Spring TMS device imageOf all the new treatment roller coasters I’ve been on, the Spring TMS brought the most emotional ups and downs. I anticipated its release for 10 years, which means I’d stored up a decade of expectation. Nothing but a complete cessation of my migraine attacks could have lived up to that much hype. Here’s how the trial went for me:

Week 1

I still had constant head pain, but little fatigue and not much cognitive dysfunction. The reduction in fatigue and cognitive dysfunction brought enormous improvement to my quality of life. The pain was a 5 or 6, which is worse than my baseline pain level. It felt more like a headache than a migraine attack, though the pain was far more migraine-like than usual. It was centered around my left eye and temple (instead of an all-over throbbing pain). A couple ibuprofen took the edge off when the pain began to interfere with my ability to function.

Week 2

The migraine pain from the previous week was lower, but still present. I was fully functional with little fatigue or cognitive dysfunction, so I had no complaints. I celebrated by emptying the shed and reorganizing the entire house.

Week 3

I was still doing better than before I started using the Spring TMS, but my fatigue increased as the week wore on. Then I started getting slow-build migraine attacks (that’s my term, nothing technical, but I’m pretty sure the meaning is obvious). They seemed totally random, with no identifiable triggers. Then food that’s normally OK started being a trigger. Then the act of eating itself became a trigger (even with DAO). All the while, the fatigue kept increasing.

In this week, I noticed that I’d use the device and the migraine attack would let up, but return a few hours later. The length of this reprieve reduced steadily until I’d feel worse immediately upon using the Spring TMS. It’s like the device caused an instant rebound headache.

After spending two days laid up with moderate pain and major fatigue and cognitive dysfunction, I decided to stop the treatment.

Week 4

After I stopped using the Spring TMS, the fatigue slowly decreased as the week progressed, though some cognitive dysfunction remained. I wasn’t worried. It took a week to get over the initial side effects, so I figured it would take a week to return to baseline. I still thought I’d be able to use the device again when things settled down.

When a migraine attack struck an hour before an appointment and wasn’t responding to triptans. I gave the Spring TMS a try. I felt worse instantly and spend the rest of the day in bed.

Week 5

I was still spending more time laid up than before I started using the Spring TMS. I tried to keep the worry at bay, but the thoughts keep creeping up: “What if this is my new normal? What if I never go back to how well I was doing before I started the treatment?”

I kept reminding myself of an escapade with dizziness last February. My doctor said that a four-day migraine attack temporarily changed my brain, which made me more sensitive to the side effects of bupropion (Wellbutrin, a drug that has always made me dizzy unless I’m very careful with it). My brain didn’t normalize after that for two weeks. I used the Spring TMS for three weeks and my brain clearly reacted to it. I told myself that maybe it would take three weeks for my brain to settle down. Or three months. Either way, I told myself that there was no reason to think I’d feel this way forever.

Beyond

It has been many months since I stopped using the Spring TMS. Eating and drinking anything but water continues to be a migraine trigger. My overall pain levels returned to baseline, but I spend more time at higher levels of pain than before I tried the device. My fatigue and cognitive dysfunction did not improve beyond the fifth week (though the ketogenic diet has improved my cognitive dysfunction.)

I suspect it’s a coincidence that I became more reactive to food (and eating) while using the device, though determining cause and effect is impossible. My doctor said he’s had patients become worse while using the device, but I’m the only one who has had a permanent change. A friend also tried it and got worse, but she returned to baseline within a week of stopping it.

Parting Wisdom

Perhaps surprisingly, I would still encourage people to try the Spring TMS. Just be aware that your migraine attacks could worsen. Before you try it, talk with your doctor about that possibility and find out what they recommend—tough it out and hope the attacks will improve or stop altogether? Based on my discussion with my doctor, I would do the latter, but only you and your doctor can determine the right approach for you.

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“It’s Just a Headache” & Other Infuriating Comments

Being told it's just a headache is infuriating!Being told “it’s just a headache” infuriates readers. “Why don’t you take…” is a close second. Read on for more annoying comments that readers shared in their 30 Things About Migraine & Headache awareness meme responses. Leave a comment below to share what makes you angry to hear people say. (And here are the instructions for writing your own 30 Things.)

The Two Most Irritating Comments (By Far)

  • “It’s just a headache.”
  • “Why don’t you take [insert over-the-counter drug name here]?” (This is nearly as irritating to readers as “It’s just a headache.” The two phrases are frequently combined.)

Unhelpful Commentary

  • “Get over it.”
  • “Why don’t you go out on disability?”
  • “You need to do better at getting a handle on this.”
  • “You really need to figure out these headaches.”
  • “You need to see a doctor about that.”
  • “Why do you keep having so many?”
  • “I didn’t realize migraines lasted so long.”

The Fix

  • “Can’t you just take a pill?”
  • “Have you tried…”
  • “You need to see my doctor/chiropractor. They can fix you.”
  • “You just need to drink more water.”
  • “I have headaches too. You just need to get out more. You need to exercise more.”
  • “If only you would…”
  • “You just need to (fill in the blank with crazy random suggestions).”
  • “Have you tried X, it cured my cousin’s migraines.”
  • “Just pray.”
  • “If you just lost weight, your (whatever symptoms) would disappear /reduce.”
  • “Take a Tylenol.”
  • “Just drink salt water, or lemon juice [or some other substance that 40 years of migraines have proved useless].”
  • “I know someone who used to have migraines until they gave up cheese or chocolate or wine.”

Dismissal & Invalidation

  • “l have migraines and they don’t stop me.”
  • “Migraines aren’t that bad.”
  • “Well at least it’s not something worse.”
  • “Oh, I get bad headaches sometimes too.”
  • “You don’t act or look sick!”
  • “You’re too young to be sick.”

Triggers

  • “Do you think it’s just stress?”
  • “Do you know what’s causing them?”
  • “It must have been something you ate.”
  • “What did you do to cause that attack?”
  • “It’s only a little perfume.”
  • “It’s all natural fragrance.”

Again?!?

  • “Again, really?”
  • “You have ANOTHER headache?”
  • “You have a headache again?”
  • “Another headache?”

 

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Success and Chronic Illness

Can success and chronic illness coexist?“Not succeeding as I know I could feels an awful lot like failing.” I have struggled for years to comprehend how success and chronic illness can coexist, but texting those words to Hart Saturday night took my breath away. This puzzle has been Since my year-long reprieve from eating-triggered migraine attacks ended last spring, my mind has been churning particularly hard to understand what success means when I’m too sick to live up to my potential.

I’m not writing this for reassurance. I know my work is valuable and my words connect deeply with people. I see humbling comments from readers every day. Still, I want to do more. I have more to give. My body won’t let me give it.

*****

The first day of every American Headache Society conference, I eagerly pore over the schedule and abstracts. I’m so excited to see who is speaking and what I might learn. I know I may not make it to every talk, but love exploring the possibilities. I did that Wednesday night (following the Thai restaurant meltdown), then spent Thursday and Friday laid up. Time ticked by while I thought about the sessions I was missing and the people I wasn’t getting to see. 

By Friday night, I was a surly mess. That’s when I wrote the first part of this post. This year has been difficult emotionally; the last few weeks have been especially rough. Missing the conference was not surprising given my health and San Diego’s June gloom. But it hurt nonetheless.

I finally made it to the conference Saturday afternoon. It felt so good to be there and I had a great time catching up with people I know and meeting others I’ve known online, but hadn’t met in person. I visited the exhibits and learned what products are in the pipeline for treating migraine and cluster headache. The eight hours I spent at the conference energized me and negated the difficulties of the previous few days. I left fully aware that I’m not succeeding in the ways I know I can, but was also cognizant of how much I’m doing despite significant physical limitations.

I haven’t given up on realizing my potential. It’s frustrating, but it’s also tremendous motivation. I want to get better because I have so much to do in the world. On difficult days, not achieving as much as I’d like does feel like failure. When I step back from that emotional reaction, though, I can see that every little bit is progress toward my larger goals. Part of me despises having to celebrate my successes despite migraine, but the rest of me knows that my struggles make my accomplishments even more worthy of celebration.

I believe I will reach my goals one day. I have to believe that. Even if I don’t know when it will be.

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30 Things for Migraine and Headache Awareness: Share Your Story!

Share your story! 30 Things Migraine and Headache Awareness MemeRaise migraine and headache awareness by sharing your 30 Things! Here’s how: Instructions and Submission Form for 30 Things for Migraine and Headache Awareness

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

 

 

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Exhausted and Frustrated By Migraine Diets

blank menuI narrowly avoided bursting into tears at a Thai restaurant last night. Hart and I are in San Diego with a dear friend for the American Headache Society conference. I wanted to spend time with them and (inexplicably) thought watching them eat one of my favorite cuisines wouldn’t be a problem. The wonderful smells hit me half a block from the door. I lasted long enough to snag a table while Hart and our friend ordered, then jumped up and nearly ran to get away from the reminder of how much I’m missing with these endless migraine diets.

Similar incidents have become more frequent in the last year, though this was the worst one. I usually stay home to avoid them altogether. After three-and-a-half years on restricted diets, being around food became agonizing. That was a year ago. Now I’ve been on restricted diets for four-and-a-half years and everything I eat or drink other than water has been a trigger for 15 months. Nearly every day I wonder how much more I can bear.

One of my favorite things—which is also required for survival—is a minefield. I worked for years to determine my migraine triggers. I did exactly what doctors and patient advocates and every migraine book say to do. The task felt impossible, but I finally found my very worst trigger. And learned that while my health care providers are compassionate and apologetic, they don’t know how to help. I become overwhelmed by the injustice of this if I allow myself to think about it.

I’m not trying to hold back the grief, but am trying to experience it without increasing my anger and sadness by dwelling on the unfairness. But both grief and a sense of unfairness are always lurking. Thinking about food fills me with dread. I don’t join my friends and family for meals. I rarely bake and don’t enjoy it when I do. I no longer express my love by feeding people. I am sacrificing an essential part of myself (my self) to satisfy the migraine gods. In my most frustrated moments, I am convinced the migraine gods scoff at my offering.

I have felt like I’m on the verge of breaking for months. I want desperately to stop the diet, but feel like I can’t. The ketogenic diet continues to keep me somewhat functional. I want nothing more in the world, so I keep eating this way. For now. I know that every other food-based intervention has eventually quit working. This one will almost certainly expire, too. I haven’t broken (whatever that would look like) because I can imagine the future. I would be furious with myself for throwing away low-migraine days when they were possible.

People often assume the only reason I can stay on these diets is because I don’t care about food as much as they do. I so wish they were right. Food is one of my core values. Figuring that out with my therapist last summer was illuminating. All my grief and frustration aren’t about not being able to eat what I want without having a migraine attack. They are about having an essential part of my being eclipsed. These diets are technically a choice, but the other option is being eclipsed by more frequent and severe migraine attacks. I’d be trading a bad situation for an even worse one.

Tenuous and fragile are the adjectives that have dominated my year. The current incarnation of my diet is allowing me to function somewhat, but for how long? This is the last diet on the list for me to try, so what happens if/when it stops working? (That’s a rhetorical question. Please don’t give me suggestions, they will only inflame me right now.) What treatment is next? Where do I go for guidance when medical knowledge has reached its limit? (That’s another rhetorical question. No suggestions, please.)

Even my parenthetical statements show how fragile I am right now. I know I’ll figure something out. I’ll find more information and more treatments to try. I am not defeated, just exhausted. And so frustrated.

I’m in San Diego for the AHS conference, but am unlikely to be up to attending any of the sessions. I’ll still try, but self-care is my backup plan. I’ll read and enjoy the cooler air. I’ll take a look at the ocean. Maybe I’ll book a massage. I’ll spend whatever time I can with loved ones. As long as it’s not while they’re eating.