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Food and Migraine Frustrations: I’m All Out of Cope

I’m glad I published Full of Hope About the Future of Migraine Treatment Wednesday because my hope has been stretched thin every day since then. The DAO is still working great, but I keep developing reactions (read: migraines) to foods that were once OK. If I could still take DAO eat the same 10 foods I ate this spring, I have no doubt I’d still be feeling great. But now over half of those are migraine triggers.

I’m definitely doing better than I was pre-DAO, especially on days 3 and 4 of the rotation diet, but I’m still having at least one migraine, usually two or three, every day.  Beyond frustration with having more migraines, I want to know why in the world my body thinks a migraine is the appropriate reaction to most foods I consume — and why something can be OK for months, then becomes a migraine trigger every single time i eat it after that.

I’m not looking suggestions in writing this post, I just need to vent. I’m in the process of scheduling with my dietician, though I expect more speculation and dietary experiments rather than answers. I’m frustrated and exhausted and so sick of not being able to eat normal food. And really not happy to once again be considering Tolerex for some portion of my calories/nutrition because I know I’d feel great if I just didn’t eat.

I’m trying to cope and not doing so very successfully. I apologize for still not getting to blog comments following my time off. I will as soon as I have a little cope to spare.

(“All out of cope” is a phrase I stole from Hart. Isn’t it great?)

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Full of Hope About the Future of Migraine Treatment

I just left my headache specialist’s office and have more hope for the future of migraine treatment than I have ever had – not just for myself, but for all of us. There are exciting treatments on the horizon, like transcranial magnetic stimulation, vagus nerve stimulation and monoclonal antibodies (the CGRP drugs), but most of my hope comes from something my headache specialist mentioned offhand at the end of my appointment: Neurologists worldwide are becoming increasingly interested in treating migraine.

That’s right, there is growing interest among neurologists throughout the world who want to treat patients with migraine. My headache specialist described general neurologists who have spent their careers treating a wide variety of neurological disorders other than migraine who are now seeing migraineurs as half their patients. The switch is partly because of those exciting treatments I mentioned above as well as Botox and Topamax.

It got me thinking. Maybe a reason there have been so few doctors treating migraine and headache is because there haven’t been very good treatments. If you were in medical school and choosing a specialty, would you want to enter a field where you had to tell so many patients, “Sorry, I can’t help you,” while also knowing there were few treatments in development and next to no research funding to investigate the physiological mechanisms of the disorder? Beyond those with a personal interest, I expect most people choosing that work would have to thrive on challenge.

Thankfully, some people fit that bill. They’re the doctors I have relied on so heavily. They’re the ones who have brought the field to a place where the future is beginning to brighten. It isn’t perfect, of course, and much work remains. Migraine research continues to be underfunded and treatments options are relatively sparse, even with the new ones in the pipeline, which could fizzle out before they get to patients.

Still, I like how the pieces add up:

the research that’s in progress
+
genetic discoveries about migraine
+
an increase in academic headache centers in the U.S.
+
more doctors knowledgeable enough to treat migraine patients successfully
+
fundraising for research
+
awareness-raising
=
hope many more migraine patients will find relief in the near future

And I hope that an increased interest in migraine means more attention for all headache disorders. Migraineurs may be the majority, but we’re not the only ones who know what it’s like to have our lives turned upside down by a poorly understood illness with limited treatment options. In fact, we’re better off on those fronts than people with many other headache disorders.

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Having Nothing Left to Give

When writer Anne Lamott’s brother said his wife was near death, she desperately wanted to go visit and be there for her family, but was momentarily physically and emotionally disheveled from her own life stuff. She called a friend who said, “Dearest, you do not have what John and Connie need. You don’t have it to give, because you are kind of crazy, and depleted. What if you got centered, and sane and full, through rest, and friends and hikes? Then you will know what to do, and when.”

“You do not have it to give.” I spent years trying to give to others what I didn’t have to give. I wanted to, very much, so I kept trying, despite being completely depleted by chronic migraine. I was never satisfied with what I gave. I wasn’t present enough, wasn’t caring enough, couldn’t follow-through when I wanted to. I was physically incapable of providing the support I wanted to give. But instead of recognizing my limitations, I kept on pretending I was OK. I wasn’t satisfied, nor were my loved ones. They knew I wasn’t really there, they knew I probably wouldn’t keep my promises. I hated this.

When I finally got that I couldn’t give away what I didn’t have, I withdrew. I knew that I had to get “centered and sane and full” before I could really be there for others. Sounds wise, except that I was so sick and wrecked that I withdrew for years. I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be. I hate this, too.

But it’s what I have to do. I am better – so much better than I was – but I continue to have migraine attacks more days than not. I can now stop some migraine attacks with medication, but I still lose at least few hours each time one comes. And sometimes two or three come in a day.

I am over the moon over how much better I am because the relative improvement in my life is so large, but I’m still quite sick. My version of feeling good has far more pain, fatigue and brain fog than a healthy person’s definition. I’ve adapted to that and am (mostly) OK with it, but it causes a lot of hurt and confusion for my loved ones. If I’m doing so well, why am I not calling on a regular basis? It’s because doing “well” takes an unbelievable amount of physical, mental and emotional energy. That’s so hard to wrap my own mind around that I can hardly expect people who don’t live with me to do so.

Even on great days, my pain reaches a level the comparative pain scale describes as “very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot.” That’s just pain, it doesn’t account for all the other symptoms of migraine, the most prominent of which are, for me, fatigue, brain fog and nausea. I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes. Despite planning nearly every day to call someone after I get the absolute necessities of life taken care of, I’m rarely able to make the call. By the time I get there, I have nothing left to give.

Getting rested and centered and full before giving to others may make a person most available to their loved ones, but what if you never get there? Where’s the balance between taking care of yourself and being there for the people who are important to you? I’ve gone from one extreme of the continuum to the other and am now trying to move myself more toward the center. I can’t figure out how to do it in a way that doesn’t compromise my own well-being.

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Headache Disorders & Migraine Blog Carnival: Invisible Illness

Headache Disorders & Migraine Blog Carnival logoInvisible Illness is the theme of this month’s Headache Disorders & Migraine Blog Carnival. I asked bloggers to share their thoughts on living with an invisible illness or respond to the 30 Things You May Not Know About My Invisible Illness meme sponsored by Invisible Illness Awareness Week.

Two great posts on living with invisible illness:

Responses to the 30 Things Meme:

Invisible Illness Awareness Week 2014 starts today! Learn more about invisible illness and how to cope on their website, Facebook, Pinterest or Twitter. You can find other relevant tweets with hashtags and #invisibleillness.

Invisible Illness Awareness Week logo

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30 Things About My Invisible Illness You May Not Know

invisible illness awareness week“But you don’t look sick” is a comment people with chronic illnesses hear a lot. And it’s true — 96% of all chronic illnesses are invisible, according to the folks behind Invisible Illness Awareness Week — but just because an illness can’t be seen doesn’t mean it isn’t real or debilitating.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine

2. I was diagnosed with it in the year: 2002

3. But I had symptoms: All my life and have been chronic since I was 11

4. The biggest adjustment I’ve had to make is: Reconciling who I want to be with the limitations I face due to migraine (also, learning patience and flexibility)

5. Most people assume: Migraine is just a headache. Headache is a major part of migraine, but it is a neurological disorder with symptoms that can be felt throughout the body.

6. The hardest part about mornings is: Not knowing how much migraine will impact my plans for the day

7. My favorite medical TV show is: Scrubs

8. A gadget I couldn’t live without is: My Kindle

9. The hardest part about nights are: The nightmares and night sweats that accompany migraine attacks

10. Each day I take at least 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I’ll try anything that won’t harm me (and have even tried some things that are a little dubious)

12. If I had to choose between an invisible illness or visible I would choose: It’s hard to know for sure, but I appreciate being able to hide my illness when I want to.

13. Regarding working and career: I’ve gone from thinking I’d never have a fulfilling career to realizing I’ve been building one all these years I’ve been blogging. I just needed to feel well enough to take the next step… and I think I’m almost there.

14. People would be surprised to know: Just how much pain and fatigue I have on “good” days

15. The hardest thing to accept about my new reality has been: Hard work doesn’t always reap rewards

16. Something I never thought I could do with my illness that I did was: Find a fulfilling career

17. The commercials about my illness: Make it seem like migraine attacks are easily controlled with medication (they are for some people, but not at all for others)

18. Something I really miss doing since I was diagnosed is: Making plans without the caveat that I may have to cancel

19. It was really hard to have to give up: Food (literally for a while, now I have an extremely limited diet with only a few foods I truly enjoy)

20. A new hobby I have taken up since my diagnosis is: Meditation

21. If I could have one day of feeling normal again I would: That’s not something I let myself think about

22. My illness has taught me: I am stronger and more courageous than I ever thought possible

23. Want to know a secret? One thing people say that gets under my skin is: Positive thinking will “cure” me

24. But I love it when people: Keep in touch even when they don’t hear back from me.

25. My favorite motto, scripture, quote that gets me through tough times is: “When you’re going through hell, keep going” and “Never, never, never give up” — both from Winston Churchill

26. When someone is diagnosed I’d like to tell them: No one is going to cure you. Health care providers have valuable knowledge and can help you, but they aren’t mechanics. You have to play an active role in you own care, investigate potential treatments and be willing to pursue unexpected avenues.

27. Something that has surprised me about living with an illness is: How often people are blamed for being sick

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband telling me that when I don’t feel like I have the strength to continue, he’ll carry me

29. I’m involved with Invisible Illness Week because: Being open and honest about illness is the only way anyone’s beliefs about it will change

30. The fact that you read this list makes me feel: Cared for

Want to respond to the 30 things meme but don’t have a blog? You can leave your responses in the comments!