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It’s Hard to Believe These Are Migraine Symptoms (But They Are)

Working on an Migraine.com article about all the migraine symptoms that most people have no idea are related to migraine reminded me of the list of symptoms I made for my internist in 2008. The list of all the weird things happening in my body that seemed to have no explanation was more than a page long. My doctor had no idea what they could point to. Now I know that, except for cold sores, they were all migraine symptoms.

I’m a little uncomfortable sharing such a private list, but I think it’s important to show some of the possible varied and strange migraine symptoms, as well as how severe migraine can be. Most of them are direct migraine symptoms, but some were a result of migraine symptoms (like tingling arms, which was part of a cascade of physical reactions due to constant neck pain that ultimately resulted in pinched nerves). Certain symptoms were so normal that I didn’t even think to include them on the list, like tooth sensitivity, earaches, eye irritation, or neck pain. Others were such common migraine symptoms that I didn’t mention them. Still others I was embarrassed to reveal, like hallucinating sounds.

It’s odd to think that we can be in our bodies and still not be able to figure out what’s going on or dismiss the signals that something’s not working right. But we do it all the time. I have lived with chronic migraine for the vast majority of my life and have been writing about it for nearly 10 years. Still, it’s only been in the last year that I’ve been able to connect the last of these weird symptoms to migraine.

This list doesn’t represent all of my symptoms or even the worst I experienced, but they came shortly after the turning point when my illness went from bad to terrible, in June 2007. My symptoms continued to worsen for another 2.5 years. I lived it and still have trouble believing how incredibly sick I was. It’s no wonder people without migraine have no idea how severe this illness can be.

Symptom Summary for Kerrie Smyres, 4/7/08

ACUTE

Nausea

  • Current biggest concern
  • Increases over first hour each day
  • Food usually decreases for 1-2 hours

Feeling faint, lightheaded, blacking out (also chronic)

  • Worsened by standing up, exercise
  • Blackouts (either last less than 30 seconds or until I wake up)

Vertigo

  • Usually mild; moderate
  • Diagnosed with Meneire’s without hearing loss, 2000

Sensitivity to exertion/exercise

  • Walking a half mile = feeling faint, lightheaded, exhausted
  • Gentle yoga triggers pounding headache

Fatigue

  • Bones feel heavy and tired
  • Nap 3 hours/day at least 5 days/week (from 2 hours a year ago)

Meltdowns

  • Become unreasonable, irritable, exhausted
  • Get lightheaded, woozy
  • Often no obvious trigger; sometimes triggered by hunger, bright lights, crowds

Other

  • 15 lb. weight loss since June 2007
  • Night sweats, chills, shivering
  • Hands, arms tingle 3-5x/night
  • Can’t get workspace bright enough when lighting was once fine (in kitchen, at desk)
  • Whooshing in ears, like blood pulsing; worse during migraine
  • Vision bounces/pulses always; worse during migraine
  • Sudden decreased hearing & ringing in left ear; my voice echoes
  • Canker sores, cold sores
  • Heat intolerance
  • Hand tremor
  • Constipation
  • Nasal congestion
  • Constant thirst, drink 100-150 oz water/day

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New Daily Persistent Headache Research News

New daily persistent headache (NDPH) is “rare” and “poorly understood;” there is “no known treatment for NDPH.” These statements, which are from abstracts of two studies that were presented at the American Headache Society’s conference in June, succinctly capture the frustrations of people living with NDPH. These studies provide some insight into NDPH.

Characteristics & Precipitating Factors of NDPH

An examination of patients with NDPH at Stanford’s headache clinic revealed some interesting details about the characteristics of NDPH:

  • Patients most often described the pain as pressure-like and in the front of the head
  • 75% said the pain was on both sides of the head (not one-sided, like migraine commonly is)
  • 69% had migraine-like features to their headaches (46% of those had photophobia, 46% had phonophobia, 37% had nausea)
  • 17% had a history of episodic migraine or another headache disorder prior to the NDPH diagnosis
  • 53% had a family history of headaches

In addition, 75% of patients could identify an event or illness that immediately preceded the headache’s onset:

  • 48% had an infection (usually viral)
  • 26% had undergone recent surgery
  • 7.4% had physical trauma
  • 7.4% had psychological stress
  • 11% had another precipitating event

This research is important to both understand NDPH better and to help classify whether it is a primary or secondary headache disorder, which can influence how it is treated.

Botox for NDPH

Perhaps more interesting for people with NDPH is a study of Botox as an NDPH treatment. In this study, 22 patients received Botox injections and 95.4% percent had multiple rounds of injections. Following the injections:

  • 4.6% of patients had 21-30 headache-free days a month
  • 18.1% had 11-20 headache-free days a month
  • 9.1% had 0-10 headache-free days a month
  • 68.2% had no decrease in headache days

Researchers also looked at a reduction in pain severity.

  • 13.6% had a greater than 50% decrease in headache severity
  • 54.6% had less than a 50% decrease in headache severity
  • 31.8% had no change in headache severity

The numbers aren’t staggering, but 32% of patients did have at least some headache-free days with Botox. That’s not trivial for people who have received no other relief.

This was a small retrospective study. It’s results point to the need for more research on Botox for NDPH.

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Apple’s iOS7 Could Worsen Migraine, Headache Symptoms

The zooming, sliding, parallax and other features of the new iPhone and iPad software could worsen your migraine or headache disorder symptoms. The British newspaper the Guardian reports that iOS 7 is making people with vestibular and some neurological disorders sicker. Unfortunately, I learned this firsthand when I upgraded my iPhone. The dizziness, nausea, and increased headache when I use my phone means I went from loving my phone and using it constantly, to no longer even wanting to look at it. And that’s after changing the accessibility settings to “reduced motion” (Settings > General > Accessibility > Reduce Motion).

If you haven’t upgraded yet, spend some time on someone else’s upgraded device before you commit to it on your own. Once you upgrade, there’s no going back! I was very careful to backup my phone before the upgrade, thinking I could restore it if I didn’t like the new operating system. When I tried to restore it, I discovered that iTunes forces the iOS7 upgrade along with the restore, thus rendering it an ineffective solution. Some Googling revealed that Apple no longer allows such downgrades.

If you’ve been made sick by the new animations on iOS 7, you can send a short email to accessibility@apple.com to explain which animations are problematic for you and request directions for disabling them. Or if you’ve decided not to upgrade because of the potential of worsening your symptoms, email them at that same address to request accessibility accommodations so you can use their software in the future.

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Showing Others What a Migraine Attack is Really Like

Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.

This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.

(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)

I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]

I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.

My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.

I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.

To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)

These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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Why, Hello There!

Along with the Seattle sunshine, I’m rejoining the world after a long hibernation. It was another terrible spring for nausea, but my migraines and headaches have been relatively mild. (More on that in a moment.) Whenever I have felt decent, I’ve been getting ready to sell our house and move to Boston.

That’s right, we’re moving to Boston in August! Hart was offered a job he couldn’t refuse. As much as I love Seattle, I’m excited for an adventure. I’m also terrified, but isn’t that a part of every adventure?

I hope better health and more time to write will coincide with the move. Although a change of location is unlikely to spur the change, birth control pills might. My migraines and headaches reduced in frequency and severity after I had taken birth control pills for three months. Unfortunately, they also caused horrendous nausea.

I’ve spent the last few months drugged up and conked out. Deciding I was better equipped to handle head pain than nausea, I stopped the pills last week. Sure enough, the nausea is gone, but head pain and general wooziness are back. I’m seeing a gynecologist tomorrow to determine what to try next. I imagine it will be a brand with different synthetic hormones. I hope I won’t have to wait another three months for them to take effect.

So, that’s what’s been going on in my life. I hope you have been doing as well as possible!