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The Great Pillow Experiment: Results Not Encouraging

My joy following the Great Pillow Experiment was sadly short-lived. The day of my original post was the best and the next day was pretty good. The relief dropped dramatically and I haven’t found it since. That was almost four weeks ago.

I tried a new pillow combination three nights ago. My neck and shoulder pain has lessened. While the chronic daily headache is unchanged, the migraine episodes haven’t been as severe as they were the past couple weeks.

If this doesn’t pan out, I’m not sure what’s next. My sensitivity to odors rules out memory foam, latex and the synthetic filling of most pillows. I’ve tried wool, buckwheat, down, and organic cotton over buckwheat, all to no avail. These fibers may be perfectly fine, but the pillow construction is never right.

The pillow of my dreams is shaped kind of like a memory foam pillow. There’s a densely stuffed ridge at the bottom to hold my neck in the right position and a dip above to keep my head at the correct angle. Maybe I should build my own.

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Sleep Struggles? Share Your Story

Sleep is a precious resource that many people, particularly those with chronic illness or pain, don’t get enough of. If you’re a woman who has triumphed over your sleep problems, Laurie from A Chronic Dose wants to hear your story for an article she’s writing.

The National Sleep Foundation is an amazing resource for those still struggling with sleep. For information on sleep and headache disorders see Sleep, Sweet Elusive Sleep.

If good sleep still eludes your (or if you’re a man!), please share your experiences in the comments for this post.

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Kerrie’s 2007: A Year to Forget

There was a theme consistently underlying my 2007 posts: My migraines were BAD. The year started with five months of being woken up by a migraine nearly every night and ended with more than two months of horrendous all-the-time migraines. I felt more beaten down than I have in the last three years.

Before you get discouraged by the following review, know that I am more optimistic about treating my migraines than I have been since I got my occipital nerve stimulator in December 2003. (Read more on that following the treatment review.)

Acupuncture
I revisited acupuncture, but my superhero acupuncturist told me that more sessions would be a waste of time and money.

Naturopathy/Homeopathy
Shedding tears in the naturopath’s office the first time was enough to keep me from seeing her again. Against my hard fast rule that I not take anything I can’t identify (which I also broke with the acupuncturist), I took the homeopathic remedy, vitamin D and magnesium supplements she suggested. They did nothing.

Chiropractic
I gave the chiropractor two months, which she said was the maximum time to see results. I went five times one week, four the next, three for a couple weeks and so on. Turns out I hold my adjustments very well. Unfortunately my migraines didn’t changed and having my neck adjusted freaked me out. Once she stopped asking about my headaches, I knew she had given up.

Sleep Specialist
Many people with treatment-resistant headache disorders become much more treatable once they have sleep problems resolved. Although my sleep seemed fine, I saw a sleep specialist with a background in neurology. Sadly, my sleep is practically perfect. I sleep eight hours, wake up rested, nap when I need to without having it interfere with that night’s sleep.

New Headache Specialist
I saw a new Seattle-based headache specialist in May. We hit it off immediately. Too bad we focused on my blog, headache patients in general and clinical trials. I left enrolled in a clinical trial for Lyrica (which I quit) and with a potential advertiser for The Daily Headache, but without having discussed any of my questions or other treatment options.

Food Trigger Diets
Food triggers were my obsession, even though I’ve always thought them to hog the spotlight in headache treatment (only about 25% of people actually have food triggers).

Although wheat and dairy aren’t considered headache triggers in the general sense, they were my target for months. My no-dairy foray lasted six weeks — until I discovered that I’d dropped 12 pounds in that time. Testing wheat lasted three months, yet I had no ill-effects when I reintroduced it.

After a couple years of avoiding them, I’m almost positive that beans, nuts and legumes are triggers for me. But berries, squash, sunflower and soy oil, barley, pineapple, onions. . . are all questionable.

I declared that I was going on a drastic food trigger elimination diet. A couple weeks later came this post: Drastic Elimination Diet for Migraine Triggers: What Was I Thinking? You get the point.

Myofascial Release
Finally some good news. In August I started myofascial release and noticed results quickly. The changes aren’t dramatic, but each treatment usually gives me some relief. The effects have never lasted more than two days — and sometimes only a couple hours — but I’m not complaining.

Craniosacral Therapy
Two sessions weren’t enough to judge if craniosacral will be effective. I’ll definitely try again, but it just didn’t work out this time. The woman I saw was wonderful and spent an extra 30 minutes with me each visit. Unfortunately, driving to her practice takes 30 minutes. After spending 20 minutes lost on the way there and another hour on the way home, the negative associations were too strong for me to go back.

What Now?
When the last migraine spell lifted in mid-December I remembered how good I could feel. Thinking about what I love about my life was no longer a reminder of what I couldn’t have, but of how wonderful it truly is. I am happy and getting out of the house more. I even get to see friends!

This year’s list of treatments to try is as long as it was last year. Its like I’ve spent the last 10 years whittling down possibilities and arrived at the most promising therapies. Having had this faith shattered in the past, I am cautious. Nonetheless, I’m positive a brighter path is ahead.

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Finding the Right Pillow to Ease Neck Pain

I woke up this morning without the wrenching neck pain I’ve the last couple years. The secret of my success? Stacking two pillows much higher than I thought I needed.

As a side sleeper, I thought the pillow should hold my head the same distance from my shoulder as when I’m standing up. But I went through 11 pillows in a year without relief. Judging the distance between ear and shoulder nearly impossible when you’re lying down. I was worried about getting my head too high — until last night.

Two pillows seemed impossibly uncomfortable when I settled in. Hart even questioned my Great Pillow Experiment. The trial was successful. Turns out I need voluminous fluff to fill the space.

Not only did my neck feel better, my head has been happy so far today. One night’s evidence is laughable by the scientific method, yet I’m buoyed by the results. My solution isn’t perfect for everyone, but may be worth a shot. How much harm could it do? If it hurts too much, you’ll be awake within an hour or two and can adjust it.

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Lyrica, Sleep and Chronic Pain

In studies of Lyrica’s effectiveness for fibromyalgia and shingles pain, participants have reported sleeping better while taking Lyrica.

On his RevolutionHealth blog, sleep specialist Steve Poceta wrote:

Lyrica has been shown to improve sleep in certain patients who have pain, such as fibromyalgia and shingles pain. However, it is also important to assess the effect of a drug on the sleep of normal sleepers, because the sleep of patient groups is by definition already abnormal.

Dr. Poceta also describes the stages of sleep and how different drugs target different areas. Although I had trouble summarizing his points, the explanation isn’t hard to read or understand. I recommend reading it.

For anecdotal evidence, a reader told me that since starting Lyrica in January, her migraines have gone from 3 or 4 times a week to about once a month. Her insurance won’t cover it, even after having her doctor appeal the first decision.

She spends $100 a month on the drug, although she just found a pharmacy that carries it for $72. Proof that shopping around is valuable!