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Food Triggers & Unrealistic Expectations

Terri of Wind Lost blogged this week about her attempt at trying to find food triggers. She followed the recommendations in Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain, by David Buchholz, and in this post describes the outcome.

Some people absolutely swear that this book changed their lives. Not all of us are that lucky. Terri considers this and also talks about the expectation that one can “heal thyself.” She writes:

“[A]s for the ‘elimination diet’ I hope it works for some people. All the rave reviews I read on Amazon say so. But my triggers are clearly non-food related, so while this is a great idea, it doesn’t fix everyone. David Buchholz doesn’t address non-food triggers very well, except for saying that they exist and if so, keep reading. So his book is great for food-issue folks, but it ain’t magic and it didn’t ‘heal my headaches’ even though I was a perfect patient.”

The post, entitled Caffeine & Diet: Heal Thyself! is terrific, so be sure to check it out. And if you’re interested in reading another patient’s take on the topic, Paula Kamen, author of All in My Head, has also blogged about this book and the unrealistic expectations it fosters.

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My Friend’s Nerve Stimulator Story

My friend’s nerve stimulator story, which I said I’d post today, is complicated. I’m having her check that I’ve gotten all the details right and hope to post it next week.

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News, News, News

There is never enough time for me to post about all that I want to write about. And there’s been a ton of headache news lately. Here are some highlights.

Detailed Results of Trexima Studies (the drug isn’t named in the study, but it looks like Trexima to me)

  • Neck pain and discomfort decreased significantly at two hours for the compound versus placebo in study 1 (35 and 44 percent) and study 2 (28 and 54 percent).
  • Sinus pain and pressure decreased significantly at two hours for the compound versus placebo in study 1 (19 and 33 percent) and study 2 (23 and 38 percent).(1)
  • More patients were pain free at two hours in both studies (52 and 51 percent) compared to placebo (17 and 15 percent) and sustained pain-free response was maintained for significantly more patients (45 and 40 percent), without the use of a rescue medication, to 24 hours, compared to placebo (12 and 14 percent).
  • The compound was effective in rapidly eliminating migraine pain, as measured by pain-free rates at 30 minutes, one hour, two hours and four hours.
  • Incidence of migraine associated symptoms (nausea, phonophobia (sensitivity to sound) and photophobia (sensitivity to light)) was lower with the compound than with placebo.
  • The compound was generally well-tolerated. In both studies, only nausea (3 and 4 percent) and dizziness (1 and 2 percent) were reported in at least 2 percent of patients who took the compound versus placebo (1 and 2 percent for nausea, 0 and < 1 percent for dizziness).

Confusion Over Safety Of NSAIDs For Pain Relief Leads Patients To Suffer In Silence
Almost two thirds of people surveyed (64%) said they were confused about what to take for pain relief because of conflicting information on drug safety that has emerged following the withdrawal of Vioxx (rofecoxib), a COX-2 selective non-steroidal anti-inflammatory drug (NSAID) . Around 4 out of 5 (78%) said they didn’t know enough about the risks and benefits of medicines, whether prescribed or bought over-the-counter. Almost half (47%) said they weren’t using any painkiller medication at all for a number of reasons. Some were concerned about side effects, often after reading worrying news stories about painkillers, some had been advised to stop medication by their PCP and some thought they could manage without them.

Triple Therapy Synergy for Frequent Severe Migraine (registration may be required to read this)
The combination of behavioral migraine management, preventive medication, and optimal acute therapy appears to provide a superior reduction in migraine activity measures, functioning, and quality of life compared with any one alone, according to a study presented at the American Headache Society meeting here.

For these patients, “effective migraine management may require three components: a tailored acute therapy, preventive medication and behavioral migraine management to get the optimal results,” said Kenneth Holroyd, Ph.D., a professor of health psychology at Ohio University in Athens, Ohio, in an oral presentation.

Overweight Kids More Likely to Get Headaches
Children with headaches are 36 percent more likely to be overweight, results of the new research suggest.

“The numbers tell us that being overweight may contribute to kids having more headaches, most often migraines,” said Andrew D. Hershey, M.D., Ph.D., director of the Headache Center and a pediatric neurologist at Cincinnati Children’s Hospital Medical Center. “There likely are a number of causes, including poorer general health, body stress, lack of exercise and nutrition. It may not be that being overweight directly causes migraine, but that the reasons for being overweight cause these children to have worsening headaches.”

Magnetic Device Short-Circuits Migraine Headaches, Suggests Early Research
A hairdryer-sized magnetic device held briefly to the back of the head may short-circuit migraines before the pain starts, suggests preliminary research being presented at the 48th Annual Scientific Meeting of the American Headache Society (AHS).

People With Near-Daily Migraine Headaches Get Relief From Anti-Seizure Drug
An anti-seizure medication “quiets the brain,” providing relief to people with near-daily migraine headaches, suggest results of a randomized, multi-center study being presented at the 48th Annual Scientific Meeting of the American Headache Society (AHS).

FDA OKs the Pain Drug Opana
The drug, called Opana, is an opioid pain reliever taken by mouth. It will come in an extended-release form, called Opana ER, and an immediate-release version, simply called Opana.

The drugs contain oxymorphone hydrochloride, which was previously only available by injection. Endo Pharmaceuticals plans to relaunch the drug’s injected version for hospital use under the new trade name.

If you know of an article that I missed, please add it to the comments. Thanks!

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A Decision. . . Almost

I’m almost definitely going to have my stimulator removed. I’m still scared to give up my security blanket, so I haven’t scheduled the surgery yet. But I will. I know it’s the right decision.

While we were waiting for my doctor when we were in Phoenix in April, after my leads slipped, I asked Hart outright if he thought the stimulator was still working. He told me he didn’t think it ever worked. This was the first time I asked his opinion directly and the first time he gave it to me. (Don’t get angry with him; it’s a very good thing that he didn’t tell me before.)

I only had a few minutes to absorb this shock before my doctor arrived. When he zoomed into the room, I remembered immediately the surprise on his face when I reported to him at the end of my trial. He asked me to put a percentage on how much the stimulator helped during the week that I had it. A Although I’m adamantly opposed to quantifying the subjective (one of the lasting effects of grad school), but I took a stab at it and said 70%. “Really?,” my doc said incredulously. I was too desperate for pain relief to have gotten the hint.

I hit the bottom when I returned after the permanent implant was put in in December 2003. The next year was rough, horrible actually. But it ended with a two-month vacation, with a month of that spent in New Zealand. There was no way I could avoid reflection and, eventually, some sort of clarity during this time.

When we got home in January, I scheduled an appointment with a psychiatrist. The next few months were spent adjusting meds, but I physically felt better than I had in years. I began yoga and two months later, the leads slipped. The pain was then in full force and my depression returned.

The bright spot of the summer was starting starting The Daily Headache, but most of it was spent in pain. So my psychiatrist and I adjusted the meds again. We got the right cocktail at the end of September and I was happy and having less head pain.

In January of this year, I cooked decent meals regularly and ate lots of veggies and less cookie dough. I became more strict about avoiding MSG and changed my diet from mostly organic to all organic. (Pesticides may function as MSG, but I was also eating more veggies, so I don’t know what was responsible for the improvement.)

I broke up with peanut butter in March after finally recognizing what an abusive relationship we were in. And I felt better. While I was laid up when my leads slipped at the end of March, I pinpointed the chemicals used to decaffeinate coffee as a trigger, so I dropped that too.

I’ve had my stimulator off since the beginning of April. I’ve had less pain and am high(er) energy than I have been in a long time. My pain has been reduced significantly. I still have bad days and sometimes bad weeks, but it’s been great overall.

In addition to the forward motion of managing my depression with meds that are also effective for pain management (Cymbalta and Lamictal), eating better and avoiding food triggers, I think a couple of factors have played a role.

I left a high-stress, high-frustration job in a field that I didn’t want to be in and then spent the next 18 months agonizing about what kind of work I would do. I finally realized that my life could be good without a job. Then I began blogging, which lets me help people — which is the job I’ve been searching for since college.

I moved to a city that I love. But that was stressful, too, because we didn’t know anyone here. I made a dear friend after we’d been here about six months. She’s fantastic, but she’s only one person. In the last year finally felt like I have a family of friends here.

I accepted the fact that I will probably never be pain-free and learned that I can still live a good life.

You’ll notice that all these changes have occurred since I got the stimulator. (We moved here in September 2003 and I got the stimulator in December 2003.) I don’t think the stimulator has been significant in any of this, except psychologically, which is powerful in it’s own right.

I’m tired of not being able to do any exercise other than walk and having core muscles that are as supportive of my back as a flat tire is supportive of a car. And I’m tired of missing everything else I’ve given up. I’ve resented the stimulator for a year.

It’s time for it to go, but I’m having trouble giving up the security blanket. I can’t schedule the surgery just yet. I blame it on our schedules, but know that’s an excuse. Maybe I’ll give myself an incentive, as parents do to get children to give up sucking their thumbs. Something that I really want. Like a regular yoga practice or kayaking in the San Juans.

Soon. I’ll do it soon.

To read more about my experiences with nerve stimulation, visit the nerve stimulation category and start at the bottom of the page. Tomorrow Soon I’ll post the story of a friend who also had a nerve stimulator.

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The Power of Electrical Stimulation

Electrical stimulation is used for many illnesses, from headache to sciatica to depression. In today’s Washington Post, writer Daniel Stark shares his experience with deep brain stimulation to treat Parkinson’s Disease. The article is honest, funny and, most important, from some who has “been there.”

Many of the procedures and the device he describes echo those for the occipital nerve stimulator. The key difference is that the area treated in headache patients is outside the skull, so the surgery is less risky and less painful.