Category: Coping

Chronic Migraine, Coping

The Dance of Chronic Migraine Treatment: Optimism Peppered With Despair

Kerrie Smyres

“Your optimism is so inspiring,” a reader tweeted last week. I saw the tweet on Monday after a weekend of desperation, frustration, anger, exhaustion, helplessness, and hopelessness.Sunday culminated in a sobfest. Optimism was in short supply. My attempts to control the hypoglycemia weren’t working. Once again, it looked like I’d have to give up on the diet.

Hart and I went to Tucson for the weekend to watch our niece play softball. My blood sugar hit a low on Friday night and I spent Saturday trying unsuccessfully to increase it. Hart went to the softball game; I watched it via webcast. My spirits were low, but the tears were fleeting. When we decided to go home early, I could no longer hold the tears in. I had talked to my niece for five minutes on Friday and gave her a hug. That was it. I won’t see her for another year. Yet again, migraine was to blame.

I’m sick of how much control migraine has over my life. I want to make plans without an eternal asterisk. While the ketogenic diet has made me a little more functional, it requires even more attention than any other diet I’ve done and it’s results are ever-changing. Just when I think maybe I’m onto something good, another piece shifts and it’s back to looking like I’ll have to stop the diet. The fluctuating highs and lows have worn me out.

Monday brought another change to the diet. I’m not counting any chickens (except for weighing the amount of chicken breast I eat with each meal), but it’s going a bit better. This lower ratio may enable me to eat without triggering a migraine attack chronic-migraine-treatmentand avoid hypoglycemia. If it doesn’t, I really think I’m at the end of the line with the diet.

Just a few days ago, that last sentence would have brought me to tears. Today it makes me sad, but not heartbroken. When I responded to the reader’s tweet that I wasn’t feeling too optimistic, she said, “Optimism is like happiness—can’t have it all the time, but it’s whether you can find it again after its lost!”

So that’s where I am—in an ongoing dance of optimism peppered with despair. Chronic migraine pulls me onto the dance floor for this number far too often.

Coping, Friends & Family

What kind of help during a migraine attack do you want?

Kerrie Smyres

help-during-a-migraine“I’m really worried about her and wonder what I can do to better support her before, (especially) during, and after an attack.” The boyfriend of a woman with migraine sent me this. Since different people want different kinds of help during a migraine attack, I recommended asking her directly. But it prompted me to create a list of the kinds of help that people with migraine actually want during an attack.

I need your help. Here are the questions I’d like to address. Please leave your responses in the comments (or respond to this message if you receive posts by email). Answer as many or as few as you’d like.

  • What can someone do to help you in the early stages of a migraine attack?
  • During a migraine attack, do you want someone with you or to be left alone? If someone’s with you, what do you want them to do? If you’re alone, do you want someone to check on you?
  • What would help you when you’re recovering from a migraine attack (postdrome)? Do you need to take it easy for a while or do you resume life as if the attack never happened?
  • Between migraine attacks, is there any way someone could help you make your next attack easier?

In my dual migraine household, we have a different routine depending on who is having the attack. When Hart has one, I put water, ear plugs, an eye pillow, and the remote control for the light/fan beside the bed while he takes his meds. I smooth the bedding, arrange his pillows, and turn on the air filter for white noise. I make sure he has his phone and that my ringer is on so he can reach me if I’m out of earshot. Then I leave him alone. After the worst of the attack, I make sure he’s fed and we usually do something low-key, like watch TV or a baseball game.

My migraine attacks are so varied that we take a case-by-case approach. Sometimes I only need help getting my meds. Sometimes I need help to bed, with gathering my migraine supplies, or finishing up something I was in the middle of doing (which usually means having Hart put food away). Depending on how severe the attack is and if I can sit up, I either spend it alone or watching TV. If I can think clearly (which is rare), we play a game. Same goes for postdrome.

I’m looking forward to hearing your thoughts!

Coping, Society

Talking About Migraine at Work: Your Thoughts?

Kerrie Smyres

migraine-at-workWhat’s your take on this statement?: “The key to managing migraines and work is communication. It’s important to let coworkers and managers know about your condition and educate them about it.”

That comes from Migraine at Work on UCLA Health’s migraine information page. The article’s recommendations for “initiating effective communication” include (paraphrased):

  • Educate your coworkers—because they don’t know what migraine is, they don’t know how disabling an attack can be. The article recommends getting pamphlets from your doctor to share with coworkers.
  • Talk to your manager—to reduce triggers by modifying your work environment and gain access to a dark, quiet room during an attack.
  • Be honest—say that migraine attacks can be disabling and you hate to miss work. Tell coworkers that you miss out on fun activities, too, not just work.

I haven’t worked in an office in 13 years, but these recommendations strike me as idealistic and tone-deaf. Other than the suggestion to be honest that you don’t like to miss work because of a migraine attack, this advice raised more questions for me that it resolved: Is it really a good idea to tell your coworkers and manager that migraine attacks can be massively debilitating? Is a person with migraine responsible for educating coworkers? Will pamphlets be fodder for gossip? Do coworkers even listen to attempts at awareness-raising? Are managers receptive to requests for accommodations? Do coworkers care if your migraine attacks prevent you from enjoying leisure activities?

I’d love to know what you think. Please leave a comment below (or if you get posts by email, reply to the email with your response).

Community, Coping, Reader Stories

Readers Speak: Reflections on Acceptance

Kerrie Smyres

Thank you for your thoughtful responses on acceptance! I’ve loved seeing your thoughts on a topic so close to my heart.

Only three of you balked at the idea of acceptance. For a couple of you, it was seen as as giving up the search for effective treatment.

Debbie: “I’m not there yet after 35 years. I can’t accept this is going to be the rest of my life! I search regularly and often for answers.”

Rowena: “I’m also going on 30 years with chronic migraine and I refuse to accept that this is how my life will always be.”

The third dissension also defined acceptance as resignation, but believes that her anger about migraine is what motivated her to find relief.

Bibi: “Not accepting my migraines—being innerly infuriated about how much good time was stolen from me made me motivated to change my lifestyle, diet and how I arrange my work life. It can be hard to accept once in a while, that I have to maintain this healthy lifestyle to stay free of the migraines for longer stretches. Like a diabetic I have to avoid things, else my body gets totally out of balance. This was hard to accept in the start, because I felt sorry for myself not being able to eat chocolate and a lot of other foods or to binge on computer watching at night. I try to treat myself with different ‘goodies’ now, when I want to have a good time now. Perhaps saints can accept the crippling, depressing attacks—I couldn’t.”

While our motivators may be different, I don’t think those of us who accept migraine are saints, nor do I believe we are complacent about the “crippling, depressing attacks.” In fact, everyone who wrote about embracing acceptance also said the continue to try to find relief, either by trying new treatments or managing triggers.

Newfoundlander: “I, too, have found that acceptance has been very important to my life quality. It has allowed me to grieve deeply about the life I don’t have. Unloading that heavy grief has lightened my emotional load, so life is better, even if the daily migraines are not. Simultaneously, I keep one foot in the door of hope. Hope for medical advancements, hope for new insights, hope for miracles for us all. That keeps me researching new possibilities. This balance of acceptance and hope is the best approach for me so far.”

Natali: “My most recent and potentially final liberation from the torment of migraines is exactly the same statement of acceptance. That doesn’t mean that I don’t (still!) try new medications or new treatments, it doesn’t mean that I have lost hope and have totally surrendered to a life of doom and gloom…. Acceptance of some short shifts the power back to the individual, you are no longer at the mercy of migraines…. [it] is not about defeat, pessimism or giving up. It is the start of rising from the ashes like a phoenix. It is a very spiritual and pragmatic means of reclaiming one’s own inner strength. I only wish, I had embraced the idea of ‘just accept it’ earlier in my life, to save myself endless days and nights of hellish desperation and pain.”

Lisa: “I think acceptance can easily live next to still being open to what may help…. Well maybe not easily. It takes work, but it’s possible.”

Dawn: “Yes. This has been the biggest help in my life. I still keep my ears open for ideas, but my life isn’t about the search anymore.”

Trish: “I agree that it is a healthy place for me to be when I can accept that I will always have migraines…. If there comes a day that a cure is found or something else works for me, hallelujah!!! Until then, I do have them, I just need to get on with this thing I call life.

Alicia gives a great example to differentiate acceptance from resignation:

“Eckhart Tolle in The Power of Now makes an important distinction between acceptance and resignation. Acceptance is where you are right now in the present moment. He gives an example of being stuck in the mud. If you’re stuck in the mud, you don’t necessarily have to like it or resign yourself to being stuck in the mud. But until you acknowledge that you’re stuck in the mud, you really can’t take necessary steps to get out of the mud. I think that I can accept that migraines are a part of my life. But I don’t necessarily resign myself to them. In the present moment, even if I have a migraine, I try to accept it and then do the necessary things I can do to abort it or prevent one in the future. Acceptance means not adding extra suffering to the physical pain of the migraine, such as resisting it with phrases such as “I wish this weren’t part of my life”,” this will be my life forever,”” I hate this pain, etc.” Changing the way I think about it has given me a lot of relief—after all the psychological aspect of having migraines can be just as devastating as the physical aspect.”

This response is in a similar vein to Acceptance, Not Resignation, a Migraine.com article I wrote, which several readers mentioned in their responses. I still agree with what I wrote several years ago:

I will never be migraine-free.

You may read that sentence as resignation or giving up on trying to improve my health. For me, it represents acceptance and it feels a world away from resignation.

I haven’t given up on finding an effective treatment—I’m always trying new options and constantly tweaking my regimen—but I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened its control over me.

The reader who asked the question about Larissa’s comment emailed me after reading some of your responses. He said he thought that maybe the difference was semantic, so I pointed him to the Migraine.com article. After read it, he agreed that we were using different words to describe the same approach.

This is only a sampling of the responses. You can read more in the responses to On Accepting Migraine: Your Thoughts? and in the Facebook discussion.

Coping, Reader Stories

On Accepting Migraine: Your Thoughts?

Kerrie Smyres

“The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

That’s an excerpt from Larissa’s story of life with chronic migraine, which I shared last week. It registered with me as healthy statement of acceptance, but it didn’t sit right with a longtime reader. This reader’s unique insights and questions give me a different perspective and help me clarify my own thoughts, so his comments always catch my attention. He wrote:

Would be very interested what the readers thought of one statement of Larissa’s story: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

Why accept she may have them rest of her life? She is around 30 years old—she will probably live another 60 years or so. With new medical advances and because she is so young—is that a helpful perspective moving further? (No offense to Larissa in my query.)

What I love about this reader is that he hasn’t discounted Larissa’s perspective even though it doesn’t sit right with him. He’s genuinely curious to know about her point of view and what other people think of it. So I’m passing his question on to you.

What do you think of the statement: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life”? Do you think it is a helpful perspective or not? Do you agree with it and operate under the same principle or do you disagree?

Please leave a comment with your response. I’m looking forward to hearing what you think. I don’t want my thoughts to influence anyone’s response, so I’ll share my response a little later.