Other Headache/Migraine Blogs

Get The Inside Track at this Live Webinar

Tue, 27 Feb 2024 01:02:00 +0000

If you want to get the inside track on what’s coming up at the Migraine World Summit – and even ask your questions – be sure to attend the Pre-Summit Live Webinar!

Here’s what’s coming at this event, which will be on the 28th of February (Wednesday):

How to access the Migraine World Summit
Topics and speakers you shouldn’t miss
What to expect during the Summit week
How to ask questions of the experts
New features for 2024
How to access even more resources and tools
Live audience Q&A

How to reserve a spot at this live online event:

There is limited space, so you’ll want to make sure to reserve a spot today. First, make sure you’re registered for the summit – you can do that here (it’s free and very quick): Migraine World Summit

Next, go to the Pre-Summit Webinar page, and reserve your spot. Note that this webinar will use Zoom, so you might want to make sure you have Zoom set up before the webinar starts.

The webinar will be at 4pm EST (click the link to translate to your local time).

The purpose of the webinar:

The main purpose of this webinar is to make sure you can get the most out of the Migraine World Summit – that is, access the information that’s most useful to you. Not all of us have the time (or stamina!) to watch all the interviews at the time. So you’ll learn how to find the most important ones for you, and also how to make sure your questions are asked, so that more practical information will be available now and in the future.

I think there are some suprises that haven’t been announced yet – so you may get more secret knowledge than you expect!

The post Get The Inside Track at this Live Webinar appeared first on Headache and Migraine News.

Progressive Muscle Relaxation to Conquer Sleep Issues

Tue, 20 Feb 2024 23:15:46 +0000

Migraine is often associated with trouble sleeping. This means that a sleep disorder could be making your migraine worse, or your migraine may be contributing to your lack of sleep.

One of the comorbid conditions, a condition that tends to go along with migraine, is restless legs syndrome (RLS) (also called Willis-Ekbom Disease). In RLS, you have trouble sleeping because of sensations in your legs. Your legs feel restless, or throbbing, or aching.

In searching for the latest research for RLS, I was reminded of one that is being used currently that has also been used for a long time for insomnia itself – and that is, progressive muscle relaxation. It was first described in medical literature almost a hundred years ago, but it’s still being studied today.

The beauty of progressive muscle relaxation is that you can learn to do it at home in bed, with no devices or drugs, and no spending of money.

Cryoneurolysis is a treatment that has been used for chronic pain, but what about headache?

You may have already guessed from the prefix “cryo” that this has something to do with cold, and you’re right. In this case, it’s extreme cold – we’re not talking about ice packs.

When we use cryoneurolysis to treat pain, it’s called cryoanalgesia. There are other applications, but that’s the one that’s important to us at the moment..

Cryoneurolysis involves inserting a probe (a “cryoprobe” – no kidding) into the body to apply extreme cold to a speficic area, usually nerve tissue. The cold breaks up some of the tissue, interrupting the pain signals that are carried by the nerve. The nerve will actually regenerate over time, making this a temporary procedure – although at times the regeneration may improve your symptoms.

Now we know that for many types of headache, simply cutting off a certain pain signal from a certain nerve isn’t the answer, and may cause more problems than it solves. However, when we have a more specific understanding of where the pain is coming from, this may be a useful procedure, although it isn’t widespread yet (for headache conditions).

When you see the word “neuralgia” – a certain kind of nerve pain – that’s a clue that this type of treatment might be useful. Patients have received surgery for occipital neuralgia, for example, a certain kind of head pain from certain nerves. This 2021 study is an example of the work that’s being done for this type of condition.

Trigeminal neuralgia is another example. A study is starting in Norway to investigate the usefulness of cryoneurolysis for this very painful condition.

Cryoneurolysis has its drawbacks, which we’ve already mentioned. Its use for headache is not widespread. But it also tends to be unpredictable in its duration. How long will the pain relief be? That may vary quite a bit. And it is still a surgery.

However, researchers continue to investigate because it’s a relatively easy procedure, with few side effects. If it’s found to be useful, it can also be a very cost-effective treatment. And although the duration of relief may be unpredictable, it can last for a long time in some patients – much longer than the pills people are taking that only last a few hours at best.

For a technical overview of some of the other uses of cryoanalgesia besides headache, check out The applications of cryoneurolysis for acute and chronic pain management from 2023. For a more user-friendly summery, read Freezing Nerves, An Effective Way To Treat Chronic Pain.

The post Cryoneurolysis Treatment for Headache? appeared first on Headache and Migraine News.

Seniors with Migraine: More Likely to have a Car Accident?

Thu, 08 Feb 2024 20:27:08 +0000

Are older drivers with migraine more likely to have a car accident? If so, why? A recent study at the University of Colorado Anschutz Medical Campus, sponsored by AAA, asked this question.

Perhaps most interesting were the things that weren’t likely to increase risk of vehicle accidents. First of all, seniors (ages 65-79) who had a history of migraine were not, in general, more likely to be involved in car accidents. They weren’t worse drivers, they weren’t at a higher risk. Good news so far.

However, these drivers did tend to drive a little less (no surprise there). And they also tended to have more “hard braking events”. But no increase in accidents. So at least their reflexes are still good!

The researchers also failed to find a connection between certain medications and accidents, although there may not have been enough information in this particular study to come to a hard-and-fast conclusion.

But here’s the twist. Older drivers who experienced new migraine did have a higher chance of accidents. In fact, in the group who experienced their first migraine symptoms over the past year, the risk of car accidents was three times higher than in the other groups (people who had already experienced migraine, or those who had never had migranie symptoms).

Why would this be? Were these people simply not used to the symptoms? Is it possible that new medications were to blame (although it seems like this wasn’t the case)?

Is it possible that some of these cases were not actually migraine? This is an interesting question, because as we all know, sometimes getting a proper diagnosis can take much longer than a year. Also, finding a good treatment can take longer than a year.

While we don’t know exactly why the risk goes up for newly diagnosed migraineurs 65 and over, it’s worth it to be aware of the potential risk. Lead author of the study, Dr. Carolyn DiGuiseppi, puts it this way:

These results have potential implications for the safety of older patients that should be addressed. Patients with a new migraine diagnosis would benefit from talking with their clinicians about driving safety, including being extra careful about other risks, such as distracted driving, alcohol, pain medication and other factors that affect driving.
Carolyn DiGuiseppi (Study: Older Drivers Newly Diagnosed With Migraines at Increased Crash Risk)

The researchers also recommend that future studies take a closer look at “timing, frequency, and severity of migraine diagnosis and symptoms, and use of medications specifically prescribed for migraine, in relation to driving outcomes”. With a significant increase in risk, it would be helpful to know exactly why this is the case. Is it the case for a certain type of migraine? A certain type of treatment?

If you’re 65 or older and have been newly diagnosed, be sure to do your research and if possible see a headache specialist, not just a family doctor. And be aware that migraine can have a significant affect on various parts of your life, even if you’re not in pain at a specific moment.

You can read the study abstract for yourself here, in the Journal of the American Geriatrics Society: Migraine headaches are associated with motor vehicle crashes and driving habits among older drivers: Prospective cohort study

via: Older adults with newly diagnosed migraine disorder three times more likely to have motor vehicle crash (ScienceDaily)

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More “Stigma”, More Migraine?

Sat, 03 Feb 2024 23:25:13 +0000

A recent study published in Neurology took a look at how stigma may affect migraine disabilty.

I put “stigma” in quotations in the title, not because it’s not real, but because sometimes it’s defined in different ways. This study used a very helpful measure, using a tool called the Migraine-Related Stigma (MiRS) questionnaire. MiRS divides stigma into two categories:

“feeling that others viewed migraine as being used for secondary gain” – for example, someone thinks you’re using migraine as an excuse to get out of work, or to make people sorry for you.
“feeling that others were minimizing disease burden” – for example, someone says “it’s just a headache – deal with it”.

These are very helpful categories, and most of us know exactly what they’re talking about from personal experience.

Researchers have noticed that, in the case of many diseases, stigma seems to actually affect outcomes. In other words, maybe your treatment won’t help as much if people around you are minimizing your symptoms. So – is the same true for migraine?

You would think that there would be some corrolation – for example, the person who has more “headache days” in a month is likely to experience more stigma. And you would be right – that is exactly what happens.

But one of the more interesting findings in this study was this: even if you account for that, even if you take away the factors of more or less headache days, or even the symptoms and severity of the attacks, stigma still seems to increase disability (or disability leads to more stigma). If you experience stigma, you tend to be more disabled (even between migraine attacks), and have an overall poorer quality of life.

In fact, researchers pointed this out: People with fewer than 5 headaches a month, but who often or very often experienced stigma, had a worse quality of life than those who had over 25 headaches a month and yet never experienced stigma!

One other interesting note: Researchers did not see a major difference between men and women regarding stigma – both experienced it to about the same degree.

Now of course there are a lot of numbers we’re playing with here (and you can check out the study for yourself here: Migraine-Related Stigma and Its Relationship to Disability, Interictal Burden, and Quality of Life), so there could be a number of reasons why one thing is causing another thing or not.

However, there does seem to be a general picture emerging:

Migraine patients still often experience stigma from others (about 1/3 said “often” or “very often”)
That environment of stigma may be increasing migraine disability

In the end, you are you – you are not the other person, and you have a limited ability to control what they do or say. Yes, we do need to speak out when we can to help others understand and be more informed (while listenening to other points of view as well). Advocates with websites like this one or those who have various media platforms are certainly helping get the word out.

And sometimes just recognizing the problem can help us think through it. There are times when we need to be aware that someone else is just not understanding, and that no one really knows how we feel.

Migraine is serious, and can have a long lasting impact on health and on your life in general. Let’s keep working together to make migraine stigma a thing of the past.

For another perspective on this study, check out: For people with migraine, feelings of stigma may impact disability, quality of life

The post More “Stigma”, More Migraine? appeared first on Headache and Migraine News.

Answering Your Questions at the Migraine World Summit

Mon, 22 Jan 2024 17:59:35 +0000

Our friends at The Migraine World Summit have already announced the topics that they’re going to be covering (March 6-13) – topics based on questions that were sent in by migraine patients around the world.

Today’s Tip

In fact, if you go to the schedule page here, you can see the topics and click on the specific interviews to see what questions they’ll be addressing.

For example, being myself a fan of Dr. Dawn Buse, I wanted to know more about her topic, “Brain-Related Comorbidities of Migraine”. Here are some of the questions she’ll be dealing with:

What is multiple sclerosis (MS), and how is it related to migraine?
What is fibromyalgia, and how is it related to migraine?
How does the risk of stroke influence the choice of medications for treating migraine?
What is insomnia, and how is it related to migraine?

A few things to look forward to

Sounds pretty practical! Here are some other questions that might interest you – but please go and check out the schedule for yourself. (Be sure you’re signed in, or register now for the summit.)

How does a diagnosis of chronic migraine change the nature of treatment? (Controlling Chronic Migraine)
When should a patient seek a second opinion or specialized care for their headache disorder? (Beginner’s Guide to Headache Types)
What are the potential side effects and risks associated with Excedrin Migraine and other over-the-counter (OTC) headache medications? (How Much Is Too Much Excedrin Migraine?)
What safety data is available for CGRP-targeted medications? (Balancing Risks & Benefits of Migraine Treatments)
What advice would you give to someone who feels like they have tried everything to manage their headache disorder? (New Daily Persistent Headache: Pain That Won’t Stop)
How can we advocate for ourselves with our healthcare providers? (Migraine FOMO: Are You Missing Out?)
What is an effective but realistic way to schedule exercise if you have migraine disease? (Best Exercise Options for People With Migraine)
What are signs of an insufficient supply of energy to the brain? (Is Migraine a Brain Energy Problem?)
Why should people with migraine disease take dietary supplements? (Supplements & Foods That Ease Migraine)
How does a migraine attack change during perimenopause and menopause? (Menopause, Perimenopause & Migraine)

That’s just a few – there are dozens more.

And remember, these are fresh new interviews with some of the world’s leading experts – not recycled information that’s been stale for years.

The Migraine World Summit push to be practical seems to be paying off – I hope I’ll see you there!

The post Answering Your Questions at the Migraine World Summit appeared first on Headache and Migraine News.

Chronic Headache after Stroke

Tue, 09 Jan 2024 17:23:02 +0000

“Older” Migraine Meds on Trial: What Works?

Sat, 06 Jan 2024 00:43:19 +0000

Headache and Migraine News: A Look Back…

Sat, 30 Dec 2023 22:56:48 +0000

Thank you so much for joining me throughout 2023! I haven’t been able to post as much as I have in past years, but I’m still here.

Have we finally explained the “red wine headache”? Well, not exactly. However, a new study has been making the news rounds that introduces a new piece to the puzzle.

The study, published in Scientific Reports, sought to estimate the effect of quercetin glucuronide in red wine on the body, compared to the effects of quercetin glucuronide in other foods. However, the effects were lab-tested and not tested on humans.

Quercetin comes from many foods and drinks, and is popular in supplement form as an anti-inflammatory, helpful for heart health and even a cancer-fighter (read more here). But this study does not suggest that taking a quercetin supplement or even getting quercetin in foods and drinks will trigger a headache. They’re only saying this:

Thus, we propose that quercetin-3-glucoronide, derived from the various forms of quercetin in red wines inhibits ALDH2, resulting in elevated acetaldehyde levels, and the subsequent appearance of headaches in susceptible subjects. Human-subject testing is needed to test this hypothesis.
Inhibition of ALDH2 by quercetin glucuronide suggests a new hypothesis to explain red wine headaches

So this is a possible mechanism that contributes to “red wine headache” in some people. But it’s only the quercetin+alcohol – not quercetin in other forms.

Remember, we’re not talking about a hangover here. We’re talking about headaches triggered after drinking a glass or two of red wine, not what may come the next day.

We’ve discussed red wine headache a lot, and it seems that it may not deserve the notoriety that it has. That’s not to say it’s not a problem for some people – as the researchers in this study say, it clearly is. But It seems to be much more rare that red wine alone, as opposed to other alcoholic beverages, consistently triggers migraine (see Red Wine a Possible Trigger? Yes, but…). Let’s put it this way, most often:

It’s red wine + other factors that trigger the headache
It’s red wine or other alcoholic beverages that trigger headache
It’s sometimes red wine that triggers headache in some people

To make it even more complicated, the researchers noted that not all red wines are alike, even when it comes to quercetin. So now we also have:

Some red wines may trigger headache in some people sometimes

So although this is an interesting step toward further understanding how some red wines affect the body, it doesn’t give you personally much more information about whether or not you should reach for that glass of red wine (or which wine). Your own experience is a much more accurate measure. (See also Wine & Headaches: Why We’re Still Confused.)

If there’s anything practical that comes from this study, it’s this – don’t worry about quercetin (unless it’s mixed with alcohol).

The best advice remains the same as before – be cautious of alcohol in general. Listen to your body, and try drinking less, or none, and see how your body responds.

The post Red Wine Headaches Explained? appeared first on Headache and Migraine News.

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Tue, 12 Jul 2022 06:51:01 +0000

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Talking Head Pain: A must-listen migraine podcast

Wed, 29 Sep 2021 00:43:54 +0000

Podcasts were a refuge for me when my migraine attacks were at their very worst. Reading was a trigger and watching TV was often overwhelming, so I’d lie in bed, listening to one podcast after the other. How I wish Talking Head Pain, a podcast from the Global Healthy Living Foundation hosted by advocate extraordinaire Joe Coe, had existed then.

Talking Head Pain tells in-depth stories of people living with migraine. The episodes are heartfelt and honest. They’re a chance to feel connected to other people—which can be tough in the throes of migraine—and also offer practical information to help you understand migraine better.

In choosing people to interview for Talking Head Pain, Joe specifically sought out people whose stories often don’t get told. So there aren’t a lot of straight white women in their 30s-50s, like most of the people telling their migraine stories. It’s wonderful to hear the range of experiences from a wide variety of people’s perspectives. I love hearing how much we have in common as well as the ways in which our experiences differ.

To learn more about Joe’s goals for the podcast and the stories he wants to amplify, read Talking Head Pain: A Podcast About Life With Migraine, the article I wrote for Migraine.com after interviewing Joe.

You can subscribe to Talking Head Pain wherever you get your podcasts. They have bonus episodes that will drop between seasons, so subscribing will ensure you don’t miss a thing. It’s a great listen and the episodes are 15-20 minutes long, so they don’t require a huge time investment.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Miles for Migraine talk rescheduled: THIS Saturday, 9/25

Wed, 22 Sep 2021 17:34:06 +0000

My talk on approachable self-care at Miles for Migraine’s free education day has been rescheduled for THIS Saturday, September 25, 11 a.m-12:45 p.m. Eastern. To join me, register here—there’s no charge to attend, but you need to register to get the link.

I’m really excited about my talk and have now been practicing it for weeks. I’ll share my experience of realizing I needed self-care if I was ever going to improve my physical health. But I mostly will talk about ways to incorporate self-care into your daily life that doesn’t cost any time or money.

I’ll be joined by Dr. Karissa Arca, a headache fellow at Mayo Clinic Arizona, who will be talking about migraine disorders. Rebecca Hill will also talk about her experience with chronic migraine and the treatment plan she has found effective. And Juliana Kroese, a physical therapist and registered yoga teacher, will lead the group in yoga.

I hope you’re able to attend for at least part of the session. I’m looking forward to talking with you about self-care and to learning from the other presenters.

Join me this Saturday: Free virtual Miles for Migraine education day!

Wed, 15 Sep 2021 01:32:08 +0000

I’ll be speaking about approach self-care at the free Miles for Migraine virtual education day this Saturday, September 18, 11 a.m-12:45 p.m. Eastern. There’s no charge to attend, but you need to register in advance to get the link.

The other speakers and their topics are:

Dr. Karissa Arca – Know Your Migraine: A Guide to Migraine Disorders
Juliana Kroese – Yoga Practice
Rebecca Hill – Patient Warrior – My Advocacy Journey

I’ll be sharing my approach to self-care and how to incorporate self-care into your life without spending time or money. The topic is similar to my 2020 RetreatMigraine talk, but with all new examples and more experience under my belt. I’m slated for early in the day, so please join us right when the session starts.

Life with migraine in patients’ own words

Fri, 20 Aug 2021 15:44:00 +0000

Online, it’s easy to find people sharing what it’s like to life with migraine and the impact it has on their lives. Take a look at medical literature and patients’ experiences are scarce. In part, that’s by design—medical research largely looks at the pathophysiology and treatment options for an illness rather than focusing on patients’ experiences—but it’s also incomplete. How can health care providers know how to best treat people with migraine if they don’t understand the experience of living with the condition?

There are excellent studies based on surveys of patients responding to questions about life with migraine. That’s how we know the level of disability people experience during migraine attacks, the impact of migraine on the family, and the degree of stigma patients experience, for example. They provide insight, but not in the patients’ own words.

Which is why I was thrilled to find Learning the Full Impact of Migraine Through Patients Voices: A Qualitative Study, published in the July/August 2021 issue of the journal Headache. It shares the experience of living with migraine as told through the stories of people with migraine.

This is significant research because it moves patients stories out of the realm of anecdote and turns them into data with a fairly large number of participants. The idea of stories becoming data may seem off-putting, but it’s incredibly useful for painting a broader picture of life with migraine. Health care providers are trained in science. While the best providers take anecdotes into account when treating patients, they still rely heavily on data. This study provides data in patients’ own words.

The themes that emerged resonate deeply with my experience of migraine and the experiences of others that I’ve heard over 16 years of advocacy work. The six themes and their subthemes are:

Overall negative impact on life:

Migraine controls life
Migraine makes life more difficult
Migraine attacks are disabling
Lack of control over migraine attacks
Pushing through migraine attacks

Migraine’s impact on emotional health:

Isolation
Anxiety
Frustration/anger
Guilt
Mood changes/irritability
Depression/hopelessness

Migraine’s impact on cognitive function:

Trouble concentrating
Difficulty communicating

Migraine’s impact on specific parts of life:

Work/career (which results in guilt, change of job status, presenteeism, financial impact, school impact)
Family life (which results in frustration, guilt, disrupted time)
Social life (which results in irritability, altered plans, communication issues)

Fear and avoidance:

Assuming the worst scenario for attacks
Fearing future attacks
Avoiding things to try to avoid a migraine attack

Stigma:

Externalized
Internalized

Patients stories were gathered as part of research on mindfulness-based stress reduction for migraine. The original intent wasn’t to tell the stories of patients, but to capture patients’ experiences during the research. So they weren’t asked generally about how migraine impacted their emotional wellbeing, but were asked if the intervention being tested in the research impacted their emotional wellbeing. That’s not a flaw, but an exciting opportunity for future research. From years of listening to people with migraine tell their stories, I expect that direct questions would show migraine’s impact on quality of life is even greater than these researchers found.

What do you think? Do these themes resonate with you? Are there other themes you think should be included?

^{Photo by Mikel Parera on Unsplash}

Calming My Storm: Aanya Patel copes with migraine & TBI by starting a nonprofit

Tue, 13 Apr 2021 12:05:00 +0000

Aanya Patel was 13 when she fell on the stairs at her home and developed post-concussion syndrome. Nine months later, she was diagnosed with migraine. Now 16, Aanya is thriving as high school junior and an advocate for people recovering from traumatic brain injuries and who have migraine.

Calming My Storm, the unincorporated nonprofit that Aanya founded, is a big part of her advocacy work. The organization seeks to help people with concussions and migraine thrive by offering expert interviews and advice, educational resources, and personal stories of people recovering from concussions and/or living with migraine.

Getting to the “why” behind treatments

Calming My Storm is “built around the idea that if you understand your treatments, then you’ll be more inclined to do it,” Aanya said. She has firsthand experience with this. “Throughout my treatments, I wouldn’t really embrace them until I started asking questions until I understood how it worked. I distinctly remember sitting in PT, and being like, I don’t want to do this anymore. But I would start asking, Well, why do you want me to do this? Why do you want me to stand on my leg? Why do you want me to do this or that? And then my PT was super nice. And she’d explain it.” And that was enough to convince Aanya of the value of physical therapy and want to know more about the “why” behind all of her treatments.

A drive to learn more

When she found some relief with a neuromodulation device, she was even more curious about the why. She began interviewing experts at companies that make neuromodulation devices and asking them about efficacy studies and the mechanisms of action. She took the information from these interviews and turned them into blog posts, which was the start of Calming My Storm.

Empathy and understanding

What started as a blog has evolved into an unincorporated non-profit with a team of volunteers of a variety of ages and backgrounds. All the work at Calming My Storm is grounded in empathy and understanding.

“If you have understanding, you’re more empathetic. If you’re more empathetic, you can help people,” Aanya said. “And if you understand what’s happening inside of your body, then you can embrace your therapies and your treatments better, because you just have that understanding of what’s going on inside your brain.”

Expert interviews

The volunteers at Calming My Storm use empathy to increase understanding by interviewing experts about their research. The goal is to make research more accessible to the average person. Women with TBI is a particular interest.

Learning from others with the condition

TBI Roundtable is a new podcast from Calming My Storm. It’s a place for people with concussions and TBI to “talk about their experience in an open and honest way.” Each episodes delves into a specific topic, like living with a TBI as a high school student. In addition to sharing their experiences, guests also talk about specific strategies they’ve found to cope with their condition.

People who have had TBIs can also learn from each other in Letters to My Old Brain. Aanya describes this project:

“When you suffer from a TBI, you don’t know you’re gonna suffer from a TBI. You don’t know your life will be totally changed. And so a lot of people will describe this as their pre-injury self and their post-injury self, they have their old and they have their new normal…. In that moment, their hobbies changed, a lot of things in their lives changed. The idea is, you wrote a letter to your previous self.… It’s almost cathartic. Like, they get to really process what happened to them. And for people who read it, they can be like, ‘Wow, I’m not really alone.’”

Learn more about Aanya

Interviewing Aanya was a pleasure. I was struck by her wisdom, compassion, and ambition. To learn more her injury and diagnosis, what it’s like to navigate high school with post-concussion syndrome and migraine, and her advice for living well with these conditions, you can read my story about her on Migraine.com in Aanya Patel’s Experience With Post-Concussion Syndrome and Migraine (which will be published soon.)

Photo by Felix Mittermeier on Unsplash

Letting go of a comfort

Wed, 07 Apr 2021 00:24:50 +0000

Until Monday afternoon, I drove a beloved 2005 Subaru Outback. Although I’m not normally sentimental about stuff, I loved that car.

As with so many things in my life, that attachment comes back to migraine-related grief.

My Outback’s story

Hart and I bought the Outback new not long after we moved to Seattle. Outbacks are so common in Seattle that it felt almost like a rite of passage. It was a new model year and caught so much attention that we joked it felt like driving a Ferrari. We had people wave us down to ask about it and one person even did a U-turn and followed us into a parking lot to check it out.

My love for the Outback cannot be separated from my love for Seattle. Which is how this story leads to migraine.

Finding (and losing) my place

Seattle is my place. It has felt like home since the first time I visited as an adult. I feel like I breathe easier whenever I’m there. And 10 months of the year, the weather triggers such frequent migraine attacks that my quality of life plummets. As much as I love it, living there is not worth what it does to my health.

For several years after moving away, visiting even in the sunny months of July and August was just too heart wrenching. I stayed away and took comfort in my car. My memories of that car are so entwined with Seattle that it was like having a little piece of the city with me.

And trying to find it again

I’ve been working on developing a new relationship with Seattle in recent years. A friend finally convinced me that avoiding Seattle was actually making my grief worse, so for several years, I’ve gone for a visit in the summer. (Which is convenient because summer is migraine weather in Phoenix.) I have finally decided that while I will always want more, visting in the summer can be enough.

My continued connection with the Outback is about that wanting more. Even when I wasn’t conscious of it, driving that car gave me a little bit of the comfort that I get in Seattle.

Moving on

When Hart got a new car a few years ago, I began to think it was time for me to get one, too. It felt like time to move on, even though I wasn’t entirely ready. Plus I want something sporty while I’m nimble enough to enjoy it.

For Christmas last year, Hart gave me the promise of a new car when we could figure out a way of buying one that felt safe with my level of COVID isolation. I was moving toward letting go when a neighbor asked if I would consider selling the car. His daughter needed a new car and is headed to snowy country for college, so an Outback is perfect for her.

I love the idea of the car moving onto a new chapter (like in Toy Story, as another friend pointed out). And I’m trying to move on, too. After I shed tears (and had a migraine attack) throughout Monday evening, I happened to see the Outback’s license plate inside the front door. And I thought, “It’s time to find a new relationship with Seattle.”

Building a new relationship

I know my new relationship includes visits in the summer. I’ve already decorated my house in blues and greens to be reminiscent of the nature of the city and filled my yard with lush-looking (low-water) plants. I have some Seattle-related artwork in the house, but I think I need more. Maybe I need a photo of the Outback, too.

I’m not sure what else this new relationship needs, but I trust that I’ll find it.

Headache Disorder & Migraine Advocacy in 5 Minutes

Wed, 31 Mar 2021 22:44:38 +0000

Five minutes and two email messages is all it takes to bolster the message of last week’s Headache on the Hill advocacy efforts. To reinforce our message, members of Congress need to hear from as many constituents as possible by Friday, April 9.

We are asking Members of Congress to support two requests this year:

At these links, you’ll find details on the issues, what we are asking of Congress, and a simple form to complete with your name and mailing address (this directs your email to the right Congress members).

It includes a pre-written email you can send. You can add two brief personal sentences to the email, if you’d like, or just send as is.

Please note: This request and opportunity is ONLY for people who did NOT attend HOH.

Thank you for taking this important action to encourage Congress to support migraine and headache research and improve care for veterans with migraine and post-traumatic headache.

Migraine World Summit Starts Wednesday, March 17

Thu, 11 Mar 2021 18:32:43 +0000

The 2021 Migraine World Summit will be March 17–25, 2021. The online virtual summit will include videos from 32 experts, including headache specialists and health care providers, that address new treatments, research, and ways to improve migraine and chronic headache disorders.

Click here to register for the free 2021 Migraine World Summit.

The summit is free from March 17-25 and a new set of videos is available each day. You can also purchase access to watch the videos after the summit is over and other helpful materials.

Each day of the summit, you’ll receive an email with a link to that day’s sessions. They are free to access for 24-hours starting at 3 p.m. Eastern time.

This year’s speakers will talk about:

Latest strategies for managing chronic migraine
The cause and symptoms of migraine
Prevention
Why there is no cure for migraine
Weather triggers
Yoga
Medications that can worsen migraine
The link between migraine and autoimmune diseases
Managing migraine and comorbidities

What to Expect at Headache on the Hill

Wed, 24 Feb 2021 23:51:17 +0000

If you’ve never attended Headache on the Hill, your first time can be a little intimidating. Knowing what to expect goes a long way toward reducing nervousness. Here’s what my in-person experience was like last year. Since this year will be virtual, I spoke with Katie MacDonald from the Alliance for Headache Disorders Advocacy about the differences, which I’ve noted throughout the post.

The “Ask”

The HOH leadership works ahead of time to determine what “asks” are likely to be most effective. Last year, we asked for legislators to sign onto a bill supporting funding for additional funding in training providers for the specialities of pain management and more fellowships in headache medicine. We will have different asks this year.

Pre-Event Training

Note: All training in 2021 will be virtual, of course. Some sessions will be recorded so you can watch on your own schedule, others will be live sessions so people can ask questions in real-time and work together. If you have been accepted to participate in HOH, you should have received an email with the training details.

At a webinar a week or two before we flew to Washington DC, the HOH team told us about the asks, shared background research, and gave pointers on telling our own story. Then we were told to think about our story that we’d share with legislators. (Your story should be about a minute that explains why you care about advocating for headache disorders. It doesn’t have to be perfected ahead of time, but is good to think about.) This will all be covered in the virtual training this year.

Training Day

The first day of the event last year was a training where we learned about how to make effective “asks” and practiced telling our story in small groups. This will be on either March 17 or March 20 this year. Attendees were grouped by state. Because Arizona was a large group with seasoned HOH attendees, we also had the lone person from Indiana with us. (He didn’t have to visit legislators offices on his own, an HOH volunteer worked with him, but our grouping was helpful for training.) We were given the names of the legislators we were to visit and the schedule.

We decided as a team how we wanted to frame our ask and who would speak when. At least three of us spoke at every office we visited—no one had to carry the weight on their own. If the representative from your district is one of the people you’re scheduled with, then you’ll definitely be asked to tell your story. We all introduced ourselves at every office, though, usually to say our names, where we’re from, and our connection to HOH (I said I live with chronic migraine and work as a patient advocate).

This year, it’s recommended that you try to arrange to attend the live virtual training (on March 17 or 20) with the people from your state, if possible. That way, you can have the same benefit of coordinating and learning from the expertise of previous attendees. If you don’t know who is attending, you can ask in the HOH Facebook group. (Depending on your specific meetings and how many people attend from your state, groups may be smaller than every person from the state. Exact groups won’t be known until all the meetings are scheduled.)

Meetings With Legislators

The day of, we started early. I think the first meeting was 8 a.m. Eastern time and we had to meet even earlier to catch the bus to the Capitol and take photos. (This won’t be an issue for this year’s virtual meetings, as they will be scheduled to respect the time zone participants are in.)

Then we went from one office to the next. We usually talked to the legislator’s chief of staff or their health legislative assistant. They were often young and almost all of them were kind and down-to-earth. And they were curious about our experiences and wanted to hear from us. It was comfortable and not intimidating. Most told us about someone they know with migraine, which was a great personal connection. I believe we may have even asked if they knew someone with migraine. Beforehand, we designated one person to tell their story and one person to take the lead on the ask. As the conversations went on, other people chimed in. It felt like natural conversation.

Even if you don’t get to meet with the actual member of Congress, don’t feel like you’re being snubbed! The staffers we meet with are most knowledgeable on health-related topics and their opinions carry a lot of weight with their bosses.

Post-Meeting Debriefing

After each meeting, we debriefed together and filled out a short form about who we met with and how they responded. We also had taken photos with each person we met with and shared those on social media. The post-meeting activity will be a little different this year, since it’s virtual, but the platform will still allow for it.

After All the Meetings

New this year will be a live virtual gathering after the event for everyone to share their experiences. This is a fun advantage to having a virtual HOH. After the in-person meetings, most people went back to their rooms and went to bed early. It is a long day with a lot of walking, especially for people with headache disorders. Having a chance to all connect afterward will be a great bonus.

What was good about your day?

Wed, 03 Feb 2021 04:34:53 +0000

After noticing that our evening conversation usually ended up in a muddle of work-related details that neither of us really wanted to rehash, Hart and I changed the daily conversation by changing the question we ask each other. Instead of asking how each other’s day was or what happened that day, we ask what was good about the day.

We noticed a change immediately. Instead of digging into the nitty gritty of the day or focusing on frustrations, we’re both cheered by talking about the good parts of the day. If either of us encountered a major frustration in the day, we still talk about it, but the small irritations rarely get air time. The whole tone of the evening feels different when we start by sharing the good parts of our day.

Although we made this change years ago, it’s been particularly valuable in the last year. When daily life has a constant high-stress undercurrent (with spikes of even higher stress), it can be hard to see the bright spots. Sometimes we have to look extra hard, but we always find them.

I’ve taken to asking friends this same question, usually by text, and it’s been a great way to connect. I started with a friend who has chronic migraine and was going through a particularly rough spell with depression and anxiety on top of it. I know how hard it is to see the good in times like that and was worried she was bogged down by the grief. She appreciated the prompt to look for something positive in the day and now regularly texts me the same question. Sometimes it’s hard to answer, but I’m always grateful for the reminder to look for the good. And now I regularly ask the question of even more friends. It’s a great way to connect and usually provokes a smile.

Why am I telling you this today? Yesterday was a hard day for both Hart and me and we forgot to ask this question. Talking about what was good about our days wouldn’t have negated the bad parts, but we both could have used the levity. I missed it and I felt the heaviness even as I went to sleep. I can’t know for sure if I would have felt lighter if we’d remembered to tell each other the positive parts of our day, but experience shows I probably would have.

What’s been good about your day today?

Photo by Aaron Burden on Unsplash

Minor Attack in 2019

Mon, 04 Feb 2019 07:01:31 +0000

For the last few weeks I have felt "out of it", had fatigue especially in my legs, had bad bouts of daytime sleepiness, and felt cognitively less "sharp"... All symptoms of what I have been calling my "Empty Cycles". Well yesterday I got a bit of a conformation in the form of a mild cluster attack. It was hardly painful in comparison to the knock down screamers I used to get, but it was definitely the old familiar pains squarely behind the right eye along a plane drawn between the backs of the temples. In fact I can feel a little flare up right now... with makes sense. This is traditionally about my early morning "time" for my second daily attack (or first attack depending on how you look at it cause they would come after midnight between 1-3 am).

This still happens now and then, so I am not FULLY done with them. BUT! I have to tell you. It is all SO much better! This is nothing, a little annoyance really. I may be a little grumpy, not sleep as well, but it will be over soon and I can go back to just having migraines with I still get all the time but are manageable. If anyone is reading this. Try to remember that clusters do end for many people. They have mostly ended for me. I know it's hard. I know it hurts. but it can get better.

Getting Creative: Chronic Migraine Workarounds

Mon, 28 Aug 2017 17:10:10 +0000

Chronic migraines took away my ability to write songs. It was one of my favorite ways to spend my free time. I’d get lost in the creative process. I’d sit down to... READ MORE

It Might Be Time to Stop Asking “Why?”

Fri, 25 Aug 2017 16:33:47 +0000

Why? Why did my migraine attacks start? Why did I get so sick? Why is it worse for me than others? Why? When my migraine disease became chronic in 2011, this was... READ MORE

Treatment of Others and Not Judging

Thu, 24 Aug 2017 22:24:57 +0000

Being raised in the South, my mother always told me to treat others how I would want them to treat me regardless of who they may be in the eyes of the... READ MORE

MTHFR, Migraine, and the C677T Variant

Wed, 23 Aug 2017 20:13:53 +0000

In 2014, I wrote my first article on migraine and the MTHFR variant. Since then, I’ve received dozens of emails from readers asking for additional information. In this piece, I’ll address some... READ MORE

The Good, The Bad, The Ugly- Emergency Room Visits with a Migraine-Part 2

Tue, 22 Aug 2017 19:55:28 +0000

In Part 1 of this 2-part article I looked at the Ugly Side of ER Visits for a Migraineur. Part 2 will look at The Good, and constructive ways we can get... READ MORE

Marriage and Migraine – The Spouse Perspective

Mon, 21 Aug 2017 18:06:08 +0000

We don’t often discuss how migraine impacts marriage. Both people in the relationship are affected by the toll it takes on the person living with migraine. Migraine has a way of wearing a... READ MORE

Coping with Dependence

Fri, 18 Aug 2017 19:16:30 +0000

Before and after I’m often tempted to draw myself a picture of life “before and after” migraine. At first glance, the comparison seems a bit tragic: before migraine I was a self-sufficient,... READ MORE

Constant surveillance

Thu, 17 Aug 2017 14:36:22 +0000

“How do I feel today?” That’s the question that our lives often revolve around if we have chronic migraine. Sometimes even more precise: “How do I feel right now?” However it is... READ MORE

DHE Injection DIY

Wed, 16 Aug 2017 16:15:59 +0000

For some of us, triptans don’t work as an abortive medication during a migraine attack. The next option a doctor may suggest is DHE (dihydroergotamine). While this medication can be prescribed in... READ MORE

More Migraine Guilt: Hating Housework

Tue, 15 Aug 2017 15:20:34 +0000

In April, the spotlight topic on Migraine.com was Spring Cleaning. At the time, I laughed and then wrote this article with a bit of irony in mind, and then did not upload... READ MORE

Thu, 03 Aug 2017 16:51:59 +0000

Only mild symptoms recently. I am still taking a small amount of Topamax daily but I doubt that has as much to do with the drop off in attacks as just getting older does. I am 53ish now and like is often reported by others I seem to be outgrowing the pain.

I still go through cycles that I associate with clusters, I used to call them "stupid auras". Long ago I noticed that I started felling "weird" and out of sorts when I would begin a cluster cycle. I would complain that I couldn’t "think right" and have a bit of problems stringing words together. It was quite annoying and it was one of the things that convinced me that clusters were neurological in nature long before the research started to point that way. Well, sadly although the intense pain is mostly fading... the stupefaction still remains. I still have weeks or months long periods were I am convinced that I am working at a diminished capacity. When I cone out of one, it is like a new dawn and I often feel like I don't know what I have been doing during that time. Its like i'm trending water and every so often I get to come ashore and rest only to have the tide come in and I have to start struggling again. Add to this the well know effects of Topamax and the learning differences I was born with and I have a recall hard time presenting myself as the intelligent well spoken person that I like to be seen as. I sometimes wonder if I have always had these "stupid auras" and if it is related to or exasperated my learning disabilities in school and throughout my life.

Clusters are thought to be related to a dysfunction of the hippocampus, learning disabilities are dysfunction in other areas of the brain, I would not be surprised that one day it is discovered that it could be related. at least in some people like me.

I am still getting migraines on a fairly consistent basis but they are getting less noticeable to be as I have just lived with them for a while now and are often long lasting but low grade. They can sometimes peak and get quite bothersome and still often last for many days at a time non stop. But as many cluster sufferers will likely tell you the pain is "different" and is much more manageable to me at least now that I am used to it after many years.

But if anyone comes across this the main take away that I want to share is that I am alive and well in 2017 and largely free from the brutal pain that I once suffered and is documented in this blog. Please take heart, I know it hurts... I know how much it hurts, but there is a light at the end of the tunnel.

"Empty Cycle" Update

Thu, 04 Jun 2015 06:35:27 +0000

I think this recent "empty cycle" is beginning to wane. One thing I have noticed however is that powerful early morning headaches and long lasting Migraines seem to be flooding into the space left in the wake as I start to feel better in other ways.

It is not unusual for me to wake up with daily headaches for long stretches of time, but these from this last week have been quite intense and annoying. Also I had a pretty debilitating migraine for close to 10 hours today. Actually, it never fully left... I can still feel it, but late in the afternoon it started to fall below the threshold that I notice pain these days if you know what I mean.

All this just seems to make me trust my instinct that I am greatly more prone to headaches of all kinds than most people are. Lucky me. Now if science can just figure out for certain why the hell that is.

"Empty Cycles"

Thu, 30 Apr 2015 17:28:07 +0000

I want to clarify my last couple of posts a bit if I can.

For a while I have believed that something is happening in my brain and that the cluster attacks were just the worst and most final result of that problem. Of course this is all speculation, just a few notes based on a few things I have read and my personal experiences, I really don't want anyone to confuse it with science...

Leading up to the cluster attacks I always experienced feelings of "confusion, being less able to focus, feeling cloudy in my thinking, aching in my legs and hands, general fatigue, extreme and bizarre daytime sleepiness. I don't think everyone who has clusters experiences these same things... So I wonder if they are somewhat like the various "aura" that migraine sufferers sometimes (but not always) report.

So here is the thing, over the several years as the actual headaches have gradually become less and less frequent, I would say that I can still "feel" the cycles... its as if the "event" that caused them is still happening, but perhaps my body has learned not to overreact so dramatically.

So I still go through many weeks of feeling like a weakened, less intelligent, dazed, hollowed out version of myself even if I don't get the soul crushing pain stabbing me behind the eye 2-3 times a day. Before when I was feeling stupid, achy, grumpy and weak, it was easy to blame it on the pain (except for the fact that these symptoms proceeded the onset of pain by weeks). So I begin to wonder if this is something I will have to deal with for the rest of my life. When people say that the clusters go away eventually, are they free from ALL effects of them or are they just lucky not to have a distinct "aura" like I am describing? Not a altogether bad trade off mind you, anyone who has suffered cluster pain would take that deal in a heartbeat.

Oh then there is the other trade off... as the clusters get weaker, they increasingly last longer.

So, I still feel lucky even though I have a weak little cluster banging annoyingly at the back of my eye demanding my attention like a petulant child, angry because I am doing my level best to ignore it.

Creativity And Clusters

Wed, 29 Apr 2015 16:09:58 +0000

Just a note on this new cycle.

For the last few months I have been working very hard on a new song. It is not directly about Cluster headaches, but it is about being the owner of a body riddled with odd health problems and how that effects how the world sees you and how you eventually see yourself.

I have been very focused on getting this piece of music done, or at least polished to a point that I would feel comfortable letting others hear it. But a couple of weeks ago that drive just left me... it drained away and I could no longer find it. I tried, but it was gone and the song sits NEARLY finished like so many others from my past. I have been cursing myself... hating myself over it. Thinking that I am a incredible idiot and weak minded for not being able to push past my fear of what people will think of the final song, and I am sure that is part of it.

But this morning I realized something else.

When I was working on the song a lot and making great progress... I felt good. I was not in a headache cycle. I was free of not just the pain but also the "Aura" symptoms that go along with my clusters. Around the time that I started loosing focus on completing the song is about the same time I started feeling the effects of a new "cycle aura". Now reading this, you may think that those two things seem obviously related, but looking out from this flawed brain... its not always so easy. I am always trying to trick myself into thinking that I feel better than I do... That I have just a little more energy so that I don't let people down. Sometimes I fool myself into ignoring a LOT of discomfort. So waking up to the fact that you have increasingly felt like crap for several weeks and eventually giving yourself a break is not that odd really.

Spooky to think about the effect it has had over the last 20 years... Looking back, I realized that I was most productive musically before my cluster headaches began and although I made some of my best music after the clusters started... I slowed down dramatically. And, I also stopped performing live. It was so long ago. I can't recall if it was a conscious decision, or more like something that just naturally happened. I can remember being afraid of what I would do if I were to get an attack on stage... The idea that I would be exposed like that, that I might let down my bandmates in such a dramatic way, the fact that almost no one would understand or be forgiving. I am certain that it dampened if not halt my performing in front of people.

I can recall that even though my headaches have slowed down a great deal and the chances of it happening were slim, when I did a recent reunion show with one of my first bands... I was scared to death that I would have an attack and not be able to perform. I almost said no to doing the show.

So, just a reminder to myself... finish the damn song! (but its OK to wait till you feel better).

Visit from a nearly forgotten and unwelcome acquaintance

Wed, 29 Apr 2015 05:22:45 +0000

For a couple of weeks now I have been complaining that:
• I feel "out of it"
• I am "20% less sharp" than usual
• I can't think
• My legs ache
• I constantly feel fatigued and sleepy during the day

All these things are what I would consider my classic cluster cycle precursors. All the things that would happen to me in the weeks leading up to a long stretch of cluster attacks. Since I have been taking Topamax, and as I have gotten older and the attacks have become less frequent and fierce. Because of that, things have been a bit more muddled and less defined and I think I started wondering if I had imagined that these "symptoms" were really related because I was still experiencing them now and then but often without the headaches themselves.

But here I sit, with clear cluster pain growing behind my right eye and I wanted to type this to myself and to others that may also feel these same "aura" type symptoms leading up to a cycle. It is so clear to me at this moment that it is all part of the same thing... and when I get the "aura" symptoms without the painful clusters, I am still having a "cycle", just one that doesn't spawn the end result of crushing pain. This of course could be unique to me, Clusters seem to be odd that way. I wonder if its a bit like auras of migraine sufferers, some see spots, some get dizzy, some have no aura at all.

I wonder if it is something going off the rails a tiny bit in my brain. I start feeling dumb, unable to concentrate, constantly tired, I have muscle aches, problems staying awake, tonight I even felt dizzy for a bit (I never get dizzy) and then, if I am unlucky, the old familiar pain creeps in. I don't expect it to get very bad tonight, I haven't had many really horrific attacks like I used to in quite a while now, but even if this doesn't crest into a full blown cluster cycle, I still expect to feel "weird, tired, and confused" for at least the next several weeks.

The pain in my head is getting to the point where it is a little hard to concentrate on typing so I will end this post by reminding anyone who finds this blog that for many people like me, Cluster headaches start to go away eventually! I know how painful and hard it can be while they are going on... I may never by 100% free of them, but I am so much better than I was just a few years ago. Don't lose hope.

Light At The End Of The Tunnel

Tue, 21 Oct 2014 17:58:20 +0000

For some time I have wanted to make a post about how my clusters have been tapering off in severity, becoming less frequent, and generally becoming less of a factor in my life. I still have headaches... both clusters and also migraines. In fact on any given day, I am likely to have some type of headache pain. But cluster cycles are more infrequent, and when I have them, its often more of a vague muted/pressure/pain/hard to think kind of feeling. I am still taking Topamax so it is hard to say how much of this is due to topamax keeping them at bay but my feeling is that that I am just outgrowing them... like many people do.

So, I just want people who may come across this blog and are in pain to know that there is light at the end of the tunnel! Over and over again I hear stories from cluster sufferers that their headaches eventually become less frequent, less intense, or end altogether! Even if all the different treatments you've try don't work or only have modest success, you can still look forward to a time when the pain will end.

Hang in there everyone.

Here are a few post from people who are reporting that they have seen the attacks drop off like I have.

Anonymous said...

"I haven't had an attack for 8 years now. I was told that my clusters would taper off and disappear. I never thought that it would happen but here I am pain free."
"Never give up hope folks."

Bob said...

"Sometimes my CHA episodes last 8-10 hours, and on occasion longer. After my 55th (or so) birthday I've had some remission, sometimes lasting for several years. After three years off for good behavior, mine just started again today :-(

The good news, like you relate Doc, they are tapering off--the length of the episodes that is, and fewer 10s! Best wishes to all Cluster Heads."

Sept 2014 Headache & Migraine Carnival: Invisible Illness

Tue, 09 Sep 2014 20:14:00 +0000

The September 2014 edition of the Headache Disorders and Migraine Carnival was posted yesterday at The Daily Headache by this month's host, Kerrie Smyres.

Headache Disorders & Migraine Blog Carnival: Invisible Illness

Please go check it out when you have a chance and share the link with people you interact with on Facebook, Twitter, etc.

A great big thank you to Kerrie for hosting.

* * *

If you're planning ahead for the October 2014 Carnival, here's what you need to know:

October 2014 Headache Disorders & Migraine Blog Carnival:

Theme: October 2014 --- Share your tips for creating a Migraineur-friendly living environment.

Host: Diana Lee, Somebody Heal Me

Submission Deadline: Friday, October 10, 2014 (before end of day)

Publication Date: Monday, October 13, 2014

Content by Diana E. Lee.

DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.

Last Call: September 2014 Headache Disorders & Migraine Carnival

Thu, 04 Sep 2014 12:00:00 +0000

Here's a friendly reminder to submit your posts for the September 2014 edition of the Headache Disorders & Migraine Blog Carnival.

Our theme for the September 2014 edition of the Carnival is:

Invisible Illness Awareness Week 2014: Just One: Share your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

The September 2014 carnival host is Kerrie Smyres from The Daily Headache. Kerrie also blogs at Migraine.com.

Submissions are due by 11:59 pm Pacific Time, tomorrow Friday, September 5, 2014.

The September 2014 carnival will be posted at The Daily Headache on Monday, September 8, 2014.

Email the link to your submission to our host Kerrie at kerrie@thedailyheadache.com before the deadline. Please include the following information in your message to her:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you're submitting.
(3) The url of the blog post you're submitting.
(4) The title of your blog.
(5) The url of your blog.

Get more information about the carnival at: Headache Disorders & Migraine Blog Carnival.

FAQ are addressed at: http://somebodyhealme.com/2007/06/headache-blog-carnival-faq.html

Contact me at any time with any questions that aren't addressed in the materials linked above. And PLEASE let me know if you're willing to host an upcoming edition. Having others host the Carnival is key to keeping it going, especially now that I've got a little one at home!

Thank you for your support of and participation in the Carnival. The blog posts you share through the Headache Disorders & Migraine Blog Carnival undoubtedly help many other Headache Disorders and Migraine patients.

Content by Diana E. Lee.

Invisible Illness Week 2014: 30 Things Meme

Tue, 02 Sep 2014 11:00:00 +0000

Harper at 7 weeks, 3 days old

Way back in 2009 I completed the Invisible Illness Week "30 Things" meme, but clearly things have changed a ton in my life since then. Considering that our theme for the September 2014 Headache Disorders & Migraine Blog Carnival is a request to discuss living with an invisible illness and/or participate in the 30 Things challenge, it seems like the perfect time to complete it again.

30 Things About My Invisible Illness(es) You May Not Know

1. The illness[es] I live with is[are]: Chronic Migraine, depression, occipital neuralgia, type 2 diabetes, polycystic ovary syndrome, infertility, irritable bowel syndrome. I'll be focusing on Migraine since it relates to the Headache Disorders & Migraine Blog Carnival.

2. I was diagnosed with it in the year: Around 1983.

3. But I had symptoms since: I can remember.

4. The biggest adjustment I’ve had to make is: Not being able to work in my chosen profession or contribute to my family's finances.

5. Most people assume: That Migraine is just a headache. In reality, there are many other symptoms associated with Migraine and many of them are just as if not more debilitating than the pain. Also, it is possible to experience a Migraine attack without pain.

6. The hardest part about mornings are: Getting up to care for my newborn daughter with a raging Migraine and not enough sleep.

7. My favorite medical TV show is: House.

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

9. The hardest part about nights are: Desperately needing sleep and not being able to get it because my pain and other symptoms get in the way.

10. Each day I take: 21 pills & vitamins. I also wear a patch and use nasal sprays and injections to treat my conditions. (No comments, please.)

11. Regarding alternative treatments I: Have tried most of them and continue to utilize some of them, including aromatherapy and mindfulness.

12. If I had to choose between an invisible illness or visible I would choose: I can't say because I've only lived with invisible illnesses. There are good and bad things about either kind of illness. Neither of us have it easy.

13. Regarding working and career: I miss it. I loved my career and job. But I feel lucky to have a new kind of career as a part-time writer and advocate and now a stay at home mom.

14. People would be surprised to know: How happy I really am despite all the pain, debilitating symptoms and loss.

15. The hardest thing to accept about my new reality has been: The need to rely on other people so heavily.

16. Something I never thought I could do with my illness that I did was: Become a mom.

17. The commercials about my illness: Oversimplify a complicated condition and make it seem much easier to treat than it actually is.

18. Something I really miss doing since I was diagnosed is: Do things without planning or worrying about how I'll feel. Even simple, every day things.

19. It was really hard to have to give up: My career.

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

21. If I could have one day of feeling normal again I would: Do something fun and active with my family.

22. My illness has taught me: That sometimes working really hard and doing your best isn't enough to prevent you from being dealt devastating setbacks in your life.

23. Want to know a secret? One thing people say that gets under my skin is: When other patients refuse to take responsibility for working hand-in-hand with their doctors and helping themselves.

24. But I love it when people: Make an effort to stay in touch even when I'm not feeling well enough to reciprocate.

25. My favorite motto, scripture, quote that gets me through tough times is: "We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty." - Maya Angelou

26. When someone is diagnosed I’d like to tell them: To find a great Headache Disorders specialist, reach out for support and read lots of good information about the condition. I've worked hard to put together quality information based on reliable sources here at Somebody Heal Me. I also recommend Migraine.com, Health Central and ACHE.

27. Something that has surprised me about living with an illness is: How helpful it is to be part of a community of supportive people online.

28. The nicest thing someone did for me when I wasn’t feeling well was: Take care of my daughter.

29. I’m involved with Invisible Illness Week because: I want to help spread awareness about what it's really like to live with a debilitating condition that no one can see.

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

Learn more about Invisible Illness Awareness Week, September 8-14, 2014, here: Invisible Illness Awareness Week 2014.

Content by Diana E. Lee.

Announcing September 2014 Headache Disorders & Migraine Carnival

Mon, 25 Aug 2014 12:00:00 +0000

It's time to get back to the Headache Disorders & Migraine Blog Carnival with the upcoming September edition.

Our theme for the September 2014 edition of the Carnival is:

Invisible Illness Awareness Week 2014: Just One: Share your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

The September 2014 carnival host is Kerrie Smyres from The Daily Headache. Kerrie also blogs at Migraine.com.

Submissions are due by 11:59 pm Pacific Time on Friday, September 5, 2014.

The September 2014 carnival will be posted at The Daily Headache on Monday, September 8, 2014.

Email the link to your submission to our host Kerrie at kerrie@thedailyheadache.com before the deadline. Please include the following information in your message to her:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you're submitting.
(3) The url of the blog post you're submitting.
(4) The title of your blog.
(5) The url of your blog.

Get more information about the carnival at: Headache Disorders & Migraine Blog Carnival.

FAQ are addressed at: http://somebodyhealme.com/2007/06/headache-blog-carnival-faq.html

Contact me at any time with any questions that aren't addressed in the materials linked above. And PLEASE let me know if you're willing to host an upcoming edition. Having others host the Carnival is key to keeping it going, especially now that I've got a little one at home!

Thank you for your support of and participation in the Carnival. The blog posts you share through the Headache Disorders & Migraine Blog Carnival undoubtedly help many other Headache Disorders and Migraine patients.

Content by Diana E. Lee.

WikiHow Reinforces Migraine Stigma: Please Act Now!

Mon, 25 Aug 2014 01:48:00 +0000

As you might well imagine, blogging and all my advocacy-related projects have been on hold since Harper was born in late June. I hate that I've been away from everything for so long, but it is what it is. This is a special time with my precious girl, and I'll be back when she's a little bit bigger.

In the meantime, there's a very important action alert I'd like to bring to your attention.

I'll leave it to others to explain in more detail (a good blog post is linked below), but in a nutshell there is an article on a site called WikiHow titled "How to Fake a Migraine Successfully". I hope it's abundantly clear the ways in which such an article reinforces many common misconceptions about Migraine Disease.

Too many Migraineurs are accused of faking it or exaggerating their symptoms to get out of going to work or school. Anyone who comes across this article may be tempted to conclude they've been right in assuming we're full of it when we can't make it to school or work or when we have to cancel a social engagement at the last minute. (This particular article is about faking a Migraine to get out of going to school, but could just as easily apply to work or social engagements, really.)

In the largest study of Migraine-related stigma ever conducted and the first in the United States, researchers found Migraineurs are subject to a high level of stigmatization and discrimination as a result of living with the condition.

Stigmatization is important for many reasons, including:

The lack of adequate research funding that results from stigmatization of a condition. Since Migraine is not perceived as serious or life changing, policy makers see little need to allocate more money toward research despite the far reaching and devastating impact of the disease.
The impact on career and employment opportunities.
The impact on social relationships with family members and friends.
The way the stigma we impose on ourselves as Migraineurs (called internalized stigma) impacts the way we treat ourselves and hinders our ability to cope with this difficult condition.

My colleague Teri Robert has written a very good blog post for Health Central about this situation that outlines the issue and provides all the information you need to know to speak out to help us get this issue addressed.

How to Fake a Migraine Successfully: Another Wiki Problem

WikiHow IS starting to take action to address the concerns of those who've contacted WikiHow founder Jack Herrick via email. So far they've changed the article such that it can only be seen online if one has the URL for it. Searching for it will not bring it up in search engines. But we need to keep pressing to be sure the article is completely removed from the site. It's the right thing for them to do.

Content by Diana E. Lee.

In Austin, Texas

Wed, 06 Aug 2014 14:22:40 +0000

I have to apologize to anyone and everyone who ever stops by here and/or comments on my blog. For some reason, I was not getting notifications as to when someone would leave a comment so I just saw that there was about 7 comments from 2013 - I am so very sorry. I hate it when people don't get back to me and I'm sorry for doing that to you. I am going to work on switching addressing in which my notifications go to and hope that helps. I also hope to blog more once my life settles down a bit. I feel as if there are many plates spinning in the air all at once. The good thing is, my health is good. We (my husband and I) are on vacation in Austin, Texas right now - hello! first time on an airplane since 1998! I had a MAJOR anxiety attack! Thank god I have an awesome fibro dr who I was able to just be like "listen I don't think I'll freak (so wrong) but just in case can I have something just in case for the flight to and from" SOOOOO glad I did that!!!!!! Landing was fine, take off was DRAMA CITY! Oh man I felt like one of those people who end up on youtube video's! LOL Anyway - I promise - now that my health is more regular (Migraines are like zip - maybe 3 in a bad month) Fibromyalgia is better in summer (the hotter the better for me, I feel much better in heat) - So hopefully I'll get back to blogging and be able to get back into talking with all of you. Again I am so sorry about the comments, I will change my notifications address and hopefully that will fix the issue. Thanks to all who are still reading. I am working out the kinks and hope to get back to this on a more normal basis and change my notifications.

Jul 22, Chronic headache, severe reactionsto medications

Tue, 22 Jul 2014 02:13:57 +0000

I have had 4 concussions between Feb 2012 and Dec. 2013. I was able to recover from each of these but after attempting to return to my teaching job in

Jul 22, Headache for about a month!

Tue, 22 Jul 2014 02:08:32 +0000

I'm am a healthy 21 year old lady that has become frustrated with this non stop headache!! I have had it for about a month now, it's pretty mellow I guess

Jul 22, Lasting Effects of single dose Metoclopramide administered for migraine in ER

Tue, 22 Jul 2014 02:05:02 +0000

I was given metoclopramide in the ER along with Benadryl for a migraine. Almost immediately and for several weeks following that episode I had strange

Meet Harper

Thu, 03 Jul 2014 10:13:00 +0000

Let me introduce you to my daughter Harper Lee Robinson!

Our beautiful little peanut was born via c-section at 3:20 am on Friday, June 27, 2014, following a rather brutal (for me) three day failed induction.

She was 6 pounds, 3 ounces and 19-1/2 inches long. She's a perfect mix of me and Cliff and so gorgeous.

Jun 12, Major headaches with sinus stuffiness all the time

Thu, 12 Jun 2014 00:50:57 +0000

Hi I have horrible headaches. Worst part that goes with it is sinus stuffiness where I am so congested I can't breathe. It is every day with sinus.

Jun 12, Complex Migraines

Thu, 12 Jun 2014 00:48:16 +0000

I had what doctors said was a complex migraine while i was a patient at my local hospital. This headache caused me to have complete stroke symptoms. I