I’m Skipping Halloween

Halloween
I love answering the door for trick or treaters. Tons of kids visit our neighborhood with big smiles and cute costumes. Our porch lights will be off this year. I just know it will be too much for me.

After migraines in the night both Friday and Saturday, the dizziness and pain finally let up Sunday night. My mom came to town Friday, so I was happy to feel OK for at least part of her visit. Yesterday we took the train to Portland for my sister’s birthday dinner.

I got an early train back today so I could prep for our drive to Montana on Friday. We’re visiting dear friends who have two-month-old twin girls. We can’t wait to see the happy parents and hold the darling babies. The last couple weeks have depleted my energy, but I wouldn’t miss this trip for anything.

Perhaps you recognize this topic; I write about it so much it bores me. I simply can’t keep myself from overdoing it. I am improving a bit — I’m only over scheduled for 10 days, not three weeks! I doubt I’ll ever figure out this balance thing, but am glad I’m trying. At least I know that something, even if it is a holiday that only comes around once a year, has to give.

Posted in Coping. Tags: . 4 Comments »

American Pain Foundation’s Pain and Creativity Center

The American Pain Foundation and HealthCentral have created an online exhibit to highlight the importance of creativity activities in coping with chronic pain. The exhibit includes poetry, prose, digital photos
artwork and crafts, and inspirational videos. Everyone who has made a submission has included a paragraph describing how their art represents their pain experience.

Although the deadline has passed for submitting entries for mention at this month’s American Pain Foundation’s anniversary celebration, the exhibit is ongoing. You may add your contribution on the APF Pain and Creativity Center.

Whether you’re interested in looking at others’ work or submitting your own, recognizing the importance of creativity in health is inspiring.

Dizzy and Nauseated

I’m on my third day of horrible dizziness and nausea. Today is a bit better than the last two. I can get up and do a couple things before I have to lie down again.

Hope your week is better than mine!

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Extreme Makeover Home Edition Builds New Home for Chiari Advocate

Julie Carter and her three daughters all have Chiari malformation, a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal, which causes severe headaches. Nearly a half a million dollars in debt from brain surgeries, they lived in a refurbished chicken coop. An advocate for Chiarians and founder of Chiari People, Julie and her family has a new home courtesy of Extreme Makeover Home Edition.

Chiari has more than 85 possible symptoms and is frequently misdiagnosed as migraine or a host of other headache disorders. Other conditions associated with Chiari include syringomyelia, scoliosis, tethered spinal cord and pseudotumor cerebri.

The show’s executive producer said they received more nominations for Julie than they ever have for any one person. The builder of the home has an excellent profile of Julie Carter and day-by-day photos of the project. Some places to learn about Chiari malformation:

If you know of good Chiari resources, please leave a comment.

The show airs on ABC this Sunday, October 21.

Flickering Lights and Sensitive Eyes

Flickering_lights
The trees are shaking violently in a windstorm and are casting ever-moving shadows on the house and windows. Doesn’t seem like a big deal, but to my sensitive eyes, the flickering looks like a strobe light. With a migraine, that’s a terrible, terrible sight.

I’m looking forward to sunset and hoping that the electricity doesn’t go out. I’m not sure I could handle the whole house lit by (flickering) candles. For now, I’m going to lie on the couch with a pillow across my eyes.

Who knew leaves and branches could affect my neurological system like this?

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Drastic Elimination Diet for Migraine Triggers: What Was I Thinking?

Elimination_diet
File my plan for a drastic migraine and headache elimination diet under “What was I thinking?” In the innumerable elimination diets I’ve tried — whether based on eliminating common headache triggers or foods I tested intolerant to — I have never found a food trigger. Never. Even when I stuck to the diet for three or four months.

I discovered that peanut butter, beans and legumes, nuts, and now berries are triggers for me by noticing how I felt after eating them. Keeping my diet to “real” foods without additives makes this easier. Having already identified and eliminated some triggers that were prominent in my diet probably helps too. Eating foods in their regular role in your diet is much more accurate than trying to isolate variables that are impossible to separate.

Another reason I’ve decided against the diet is that inadequate nutrition for even a short time can contribute
mightily to headaches and migraine attacks. The link is unmistakable
for me.

Eating is a fundamental part of life. Something you do so often shouldn’t become a just-because-I-have-to
experience. Food is inherently enjoyable and brings people together.
Nourishing yourself with food is part of taking care of yourself in
general. I can’t overlook the immense importance of that, particularly
because I’m not so good at self-care.

My friend with celiac disease mistrusted food so much that she didn’t want to eat. She became so obsessed with ingredients that her behavior was the same as if she had an eating disorder. I can see how easy it would be for me to follow the same path. Now that she’s eased up, she feels pretty much the same and is a voracious eater for whom eating is a pleasure.

Not only is it physically and emotionally unhealthy to deprive yourself of the vast majority of foods just because they might be a problem, the diet’s efficacy is suspect. I may be fed up (ha, ha) with migraine, but moderation is laudable. And probably more useful.

Photo by Oskar Nijs

Manual Lymphatic Drainage Therapy

In the next therapy in my “Why not?” treatments, I had manual lymphatic drainage Friday. The best description I’ve found of lymph drainage is: “The aim of the massage is to stimulate or move the excess fluid away
from the swollen area so that it can drain away normally. Massage also
encourages and improves drainage in the healthy lymphatics. . . .” Several massage therapists have recommended it to me, even though I don’t have swollen lymph nodes or symptoms of lymphedema.

I have no idea how effective lymphatic drainage may be for migraine, headache or any other illness, but I quickly noticed changes in my body. I swallowed a lot during the treatment, which the therapist said is a good sign. Afterward, I was lightheaded and nauseated and could barely keep my eyes open. Following a two hour nap, I was still tired and slightly nauseated and remained that way through the evening. I also swallowed practically nonstop all day.

I have another appointment today and will continue with one appointment a week for a few weeks. It isn’t one of the commonly recommended alternative therapies for migraine, but, as I said, why not try? At least I felt something, even if it didn’t apply to migraine symptoms.

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Whoa! I’m Depressed

I’ve been debating all week whether I’m down or if my clinical depression is creeping back. Arriving a day late for the psychiatry appointment I scheduled a month ago was just what I needed to confirm my suspicions.

Even though I could reschedule for an hour later this afternoon, I was crushed. Not like a soda can that’s been stepped on from the top; more like one crumpled in a fist. Still, the anguish was disproportional for the event. Even after I found the Tully’s coffee in the hospital, settled in with tea and a cookie, and pulled out my magazine, I was near tears.

That made it pretty clear that my:

  • Exhaustion isn’t just migraine-related
  • Fall’s arrival is not why I want curl up on the couch
  • Lack of focus on and interest in blogging isn’t because The Daily Headache has run its course
  • Increased frustration with having a chronic illness doesn’t mean I’ve lost my ability to cope with it
  • Lack of interest in sex isn’t just a Cymbalta side effect

Convenient that I had an appointment with my psychiatrist. For two years, my cocktail has been 400 mg of Wellbutrin, 200 mg of Lamictal and 60 mg of Cymbalta. Because my doctor thinks that some of my disinterest in sex is from Cymbalta — and because doubling that dose two years ago wasn’t helpful — I’m increasing Lamictal to 300 mg. I’m also going to add ginkgo to see if it helps the sexual side effects.

I’m relieved. Having an aha! moment reminded me that beating myself up won’t do a bit of good. I am, however, sick of the constant vigilance required with depression. Maybe that’s another sign that I’m depressed.

Potential Liver Damage When Combining Caffeine and Painkillers

Acetaminophen_caffeine
My response to Painkillers, Caffeine May Cause Liver Damage, a post on Somebody Heal Me , was much stronger than “Oh darn.”

[P]reliminary research indicates that people who take in large quantities of painkillers containing acetaminophen [Tylenol] and ingest large amounts of caffeinated beverages may be at increased risk for liver damage. Migraine medications that intentionally mix acetaminophen and caffeine are also suspected of increasing the risk of liver damage when taken in large quantities. This would include over the counter medications such as Excedrin and prescription medications such as Fioricet. The danger is similar to that of consuming alcohol and acetaminophen, which scientists have warned about for many years.
(emphasis mine)

Knowing how effective acetaminophen and caffeine are for many people with headache, the research deserves consideration. I’m especially interested what role drinking caffeine (or eating caffeinated doughnuts) may play.

Caveat: This study used very high doses of both caffeine and acetaminophen. Still, the potential toxicity of acetaminophen — with or without caffeine — should not be overlooked. Overdoses of products containing acetaminophen account for 40 to 50%
of all acute liver failure cases each year
in the United States. If you ever take acetaminophen, please read Toxicity and Tylenol to understand the dangers.

Strong Warnings of Zyprexa’s Side Effects

Not sure how often — if ever — Zyprexa is used for headache, but just in case. . .

Zyprexa, an antipsychotic, has a
tendency to cause weight gain, high blood sugar, high cholesterol and
other metabolic problems
. The side effects have long been know, but the drug’s maker, Eli Lilly, has now added them to prescribing information.

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